Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other crew members also have Parkinsons: https://en.wikipedia.org/wiki/Leo_and_Me
Many people who are suffering with Long Covid CFS are more obvious though. The significant event from their pre/post covid life was a covid infection.
It is beyond me how people can deny post viral syndromes. Just about every major virus has documented literature of people suffering. Long covid is putting a flashlight on a real problem. For those more interested in the journey, see https://www.youtube.com/watch?v=VYNMzaZk_iU for a great overview.
>It is beyond me how people can deny post viral syndromes.
I feel part of the problem is we don't really have any good treatments for it. I know my doctor put it down as post viral tiredness but when I asked how long it might last or what I could do about it he just shrugged his shoulders.
I think it’s because we live in a world where you can’t recover. It’s all about being productive. Your doctor is saying , just get back to it.
If you got a virus and could take some time to rest then it probably wouldn’t be an issue. But I think we’re worried about viral recovery times because it affects GDP figures.
After I have a virus I like to go slow, but I’m not allowed because I have to keep up with my job.
That's far from universal though. Plenty countries and employers do offer recovery time and space, but it's not sufficient.
I've had friends who suffered CFS (known as ME here in the UK for a time) while students or shortly after finishing high school, and they did literally nothing for years with thankfully parental safety nets without recovering. I don't even recall what eventually happened unfortunately - we're talking early 1990s.
It's bizarre how your comment is being downvoted when it's a very accurate description of many modern capitalistic societies.
Especially if we're talking about America, where companies literally try to fire you if you're sick or using up too much health care because of their bottom line. It doesn't even matter if it's illegal because unless they get caught there are no consequences and even if they do get caught, the consequences are often times so pathetic that it's worth taking the hit because the savings exceed the punishment.
it's being downvoted because it somehow implies that by taking a few days of rest one might treat CE/MFS, which is a very misguided and misinformed take
It's been widely speculated that his extreme diet is likely what caused or contributed to his pancreatic cancer. Supposedly he was also ignoring his doctor's medical advice and had some irrational belief that his fruit diet would cure his cancer.
Have you assessed the nutritional content in the final juice? Carrots and celery are known to be harmful in excess (as most things are).
90 days is a very long time, please talk to a doctor or nutritionist before attempting anything like this.
You may also look into the fact you’re eating a zero-fiber diet. I’ve read something about that actually helping with IBS symptoms, it could explain any improvement you see vs the content of the diet which honestly doesn’t sound great.
It's not just "tons", it's exclusively vegetables which is probably fine as long as you make sure your diet is balanced.
However only drinking "juices" certainly for 3 months seems a bit wacky (of course it still depends on the specific fruits/vegetables). Chances are you'll consume significantly more sugar and significantly less protein and fat (of course fiber deosen't seem to matter..) compared to actually eating those vegetables/fruits directly. Which seems like a horrible idea..
No worries. “Eating” is not even the right word since you’re removing all solids. Without seeing any evidence or scientific argument, yes, drinking juice of the same four vegetables for a full three months sounds very problematic on multiple fronts… this is very different from “eating a lot of vegetables”.
I'm not forcing anyone to do it. I've done it, and had great results. I've had a few friends and family do it, and all have been impressed.
People think nothing of going on vacation and eating poorly and drinking for 7+ days straight.
But tell people you should try atleast 7 days of vegetable juice only and they start looking at your sideways. Say 30+ days and they'll warn you it's dangerous. Say 90 and they'll think you're going to die.
I promise you more people are dying from pizza and beer than vegetable juice for 90 days.
Because 90 days is long enough to see results for most people, but not so long that it's an impossible time frame.
Because drinking 10 lbs of vegetables is doable, but eating them is almost impossible raw. If you cook them, it's still hard to eat 10 lbs of vegetables and you've killed a lot of nutrients. Because it gives your body a break from digestion.
You'll feel a lot better.
Edit: even those that think the idea of vegetable juice curing anything is goofy basically have to admit that it forces you to avoid process junk for 90 days, and 'eat' tons of vegetables only. Which in itself is bound to fix a decent amount of things bothering people. You could argue that someone could just eat the vegetables, but it's very hard to get 1000-1500 calories just eating (chewing) raw vegetables. So juice them for 90 days. You won't feel too weak, and you'll give your body a break from digestion and from processed garbage.
Almost every human on earth has come up with 'eat vegetables', correct.
1, most people don't enough of it anyway.
2, I didn't say I came up with. I said I think a massive dose of vegetables for 90 days, that are ultra easy to digest because most fiber has been removed, is beneficial.
3, I didn't say mostly plants. I said all plants. If you try to do that, you'll have a LOT of trouble getting 1000+ calories doing it. Juicing them makes it possible.
But to your first point.. this thread was about people feeling terrible for months after an infection. We don't even know how or why they feel terrible. My advice was to try juicing vegetables, and not eating anything else, for 90 days. Because it has made MANY people that have tried it into believers.
Out of people that have tried it, I'd say 40% think it's a miracle process, 50% think it's very good for you, and 10% think they didn't feel any different.
Out of people that haven't tried it, 10% believe it would be great for them but they dont have the willpower to try it. The other 90% are usually negative about it without really having any good explanation.
I usually process a bunch of vegetables in a Vitamix because I think it's better to have it with the fiber. Would this be less of a good thing than just a straight juice? I've heard the juice loan isn't great without the fiber, but I don't know.
Blending a nice way to eat some vegetables for sure.
The idea of this temporary diet is to give your body time to live off only vegetables, with limited digestion effort. Even if you don't care about digestion, it is hard to eat, even blended, enough vegetables to maintain energy/calories/body weight. Even blended, I don't think you could eat 10 lbs a day for 90 days. That's the main benefit.
Unless you have an actual major sugar problem, I wouldn't worry too much about the sugar spike from juicing. We do much worse things than that to our body. Heck, some people even drink alcohol.
Because I have tried it many times and my body has some intense urge for beef, and ground beef IMO is the easiest to make, digest, and cheapest and has fats that are good for you IMO.
Some people think poorly of ground beef because "you don't know what's in it!" But moments later will tell you it's important to eat all parts of the animal because they have different nutrients. Ok then, sounds like ground beef is a good way to get different portions a butcher doesn't think sells well. Give me some foot meat, bring it on.
There's also the fact that beef is basically the one food you could eat alone 365 days a year your whole life and get everything you need. That doesn't apply to vegetables or chicken or anything else really.
Tldr; many people would say someone that eats a HUGE salad and some meat everyday, no breads or processed garbage would be healthy. Well, drinking 10 lbs of vegetables and having some ground beef is basically that except you're drinking more vegetables even that most people could ever eat in a day.
> There's also the fact that beef is basically the one food you could eat alone 365 days a year your whole life and get everything you need. That doesn't apply to vegetables or chicken or anything else really.
Do you have some sources to back this up? I was under the impression that you should really eat red meat in moderation, but this might be outdated info.
I listen to a podcast called This Week in Virology that's run by some prominent virologists and I hear this term used often, so I don't think that it's fallen out of fashion. Laypersons probably never much used the term to begin with.
* fatigue is something everyone feels sometimes and the answer is to push through it for most people
* it’s impossible to observe fatigue objectively, it just appears people are lazy or low energy
* there’s no known (or at least there wasn’t last time I researched it) bio markers for CFS
* there’s no known evidence of viruses causes CFS, just speculation
Etc
Things have changed a lot over the last 30 years. I think most people including doctors accept CFS is real whereas that wasn’t the case in the past.
The case for the cause of CFS is still very much open, and I think it’s probably naive to say CFS is caused by viral infections. It’s probably the case that some CFS is caused by viral infections, but again, it’s hard to differentiate, it’s hard to prove, and even if you did, so what? CFS probably also has autoimmune causes, which themselves are diffuse in their root causes and mechanisms, and even psychosomatic roots in burnout and other extreme stress syndrome. Finally, when the causes are psychosomatic, that isn’t code for “fake,” it is literally a real issue it’s just not caused by an extrinsic agent. The health impact of extreme prolonged stress is not a joke, and it’s not the persons “fault.” There seems to be a real need for people to pin their CFS and other health issues on some external factor and not the abuse they’ve (or others have) subjected their psychology and by proxy their body to.
> I think most people including doctors accept CFS is real whereas that wasn’t the case in the past.
I think most doctors accept that CFS is real, but I also think most doctors would not call a somatic illness fake. See for instance these researchers [0] who are research somatic causes yet all agree there is a physical/hereditary component. Anxiety disorders also have a hereditary component and they aren't fake.
My girlfriend's sister suffers from Long Covid for going on 2yrs now.
Some of the problems she had early on is that most doctors wrote her off as either lying or anxiety. More than one ER doc said there's no way that Covid could ever cause lasting symptoms other than lung damage, which she didn't have, so it's likely just anxiety. There was one DO she saw, during an admit for tachycardia, who said that he believed that she has a post-viral syndrome and knew of others with other post-Covid issues. The problem would be trying to convince his colleagues to believe it would be an uphill battle, so he hoped it was temporary for her. I know things have changed now but some doctors can be extremely arrogant and dismissive of patients (female patients more than male).
> but trying to get his colleagues to believe it would be an uphill battle
You have to go through a lot of education to become a doctor, so people naturally expect doctor's to be wise, but the truth is they are just good a memorizing things. They aren't necessarily smarter than any other person and have just as many blindspots.
* Source: My dad and uncle are doctors. My brother in law is a doctor. I have a friend who is a doctor. And I've known a lot of other doctors through them.
I dated a med school student for all of medschool and some rotations. Thus I have countless doctor friends now from those years. Everytime I bring up the reality of what most doctors are like, I get downvoted on HN for some reason.
The doctor I dated for years never drank water. She loved diet coke. She ate mcdonalds constantly but avoided the bun. She was skinny though. I had to teach her how to pump gas because her dad did it for her until she was 22. She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesnt get too used to one or the other. I could list 20 other 'wtf?' type of things about her. Most others are similarly weird, careless, unhealthy, confused and logicless.
> Everytime I bring up the reality of what most doctors are like
Is your insight that doctors are regular educated humans suffering from the same flaws and vices as other regular educated humans?
> She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesn’t get too used to one or the other.
Not sure what this is supposed to imply. I expect the same can also be said for at least 20% of doctors, dentists, SV, Big Law, Wall Street and Main Street in the 20-29 age range.
Drug abuse, alcohol abuse, no knowledge of anything real world other than your job, are not qualities of "regular educated people".
They are modern qualities of the loud morality failed majority these days. Just because it's common for celebrities and kids of rich people to do drugs and screw around, doesn't mean that's what my parents expect from their doctors.
> Drug abuse, alcohol abuse, no knowledge of anything real world other than your job, are not qualities of "regular educated people".
Actually they are, your statement applies to any one of the examples I gave you of what society considers successful/prestigious careers. Silicon Valley is the poster child for stimulant and hallucinogen use/abuse, are they not similarly regular educated people?
> Just because it's common for celebrities and kids of rich people to do drugs and screw around
Where are you getting the idea that it's only common amongst celebrities and kids of rich people?
> They are modern qualities of the loud morality failed majority these days.
I don't even know what "loud morality failed majority" means but morality (particularly your personal definition of it) =/= professional competency.
The disconnect here seems to be your expectations (and definition of morality but that's a separate point). Your parents, and you, seem to be unaware of how common stimulant, alcohol and drug use is amongst white-collar professionals.
Sorry to disappoint but as a group physicians are no different. This has no relevance on professional competency. Fun fact for you the "fathers of modern medicine" who have all the diseases named after them and designed the residency education system were all overt cocaine addicts, thats part of why the hours are so long.
Jesus man. I understand that degenerate behavior is common in today's doctors. That was my entire point of the original post. Otherwise what would I really be saying? That I knew ONE almost drug addict doctor that looks forward to her next festival? Obviously one of everything exists.
My point about celebrities and rich famous people was that they normalized it, to the point that you aren't even surprised doctors are druggies in their free time.
No one cars that some Uber programmer is on speed. More people would care to know that their doctor that recommends heart pressure medication is a druggy, because they'd know this personal doesn't really care about potential kidney damage in themselves, so of course they'll recommend you take kidney damaging heart medication without really explaining that that's what is happening.
If you left the SV and internet bubble, you'd learn that drug use and alcohol use is not liked by most in their higher level professionals.
Women in particular get a lot of 'mental' diagnoses for actual physical ailments. Endometriosis seems to be one of those terrible things that women are told to suffer with, then later if they have exploratory surgery they find terrible lesions inside their body.
She is now, but was infected with the virus before she got the vaccine. The vaccine was available but unfortunately she was hesitant about getting it due to all of the noise online and in the news. She was vaccinated about 4mo after being infected and had already been experiencing Long Covid symptoms.
If she was vaccinated after infection, she probably has enough level of antibodies. (1,2) I hope she consult that with her doctor rather than online noise as you think.
Because of long covid and the millions suffering with it, we are revealing many new findings of a category that has largely been ignored for centuries. Darwin for example was thought to had CFS through his health journals, but nobody knew or cared about it.
When those new findings challenge our current understanding, we get smarter as a species and work to alleviate the suffering by investing more money and time into these matters.
Points aside, your third point is largely concerning.
Some investigation revealed though that is has become more difficult for GPs to ignore the pressure put on them by insurers to send patients back to work.
There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.
But: absence of evidence is not necessarily evidence of absence. The fact that we still haven't found convincing evidence (with the caveat that 'millions of people complain about certain symptoms' in my book counts as overwhelming evidence) doesn't mean that such a mechanism doesn't exist. It may merely mean that we are looking in the wrong places, may not be looking in the right way and in general still have a poor understanding of how our bodies really work.
Is linked to post viral or post bacterial infections, and even though here too there is a lack of complete understanding at least the symptoms are so clear (up to complete paralysis) that denying it seems pointless. It's also super rare, so there is no incentive to deny it.
But if COVID ends up putting a sizeable percentage of the workforce out of action that may well have serious implications for how we deal with chronic disease and post viral infections. Incidentally: this is one of the possible futures that various experts warned about during the early days of the pandemic, that it would be a decade or more before we would fully understand the impact and that by assuming the post infection consequences would be mild that we may have made a grave mistake.
Fortunately some of the more outrageous possibilities have so far not surfaced, this is one that we can deal with.
Doctors are not medical forensics. It shouldn't matter that the mechanism behind CFS isn't known, there's ample evidence that the condition is real. So I reject that casual dismissal.
However, there is no known way to treat CFS. That problem is a much more valid excuse for a doctor to do nothing. But a doctor that refuses to acknowledge a patient's troubles because they don't know how to treat it is a bad doctor.
If I had to make guesses, my take is a viral+immune system interaction. You get the virus which causes your own immune system to respond. In that response we get a 'partial match' to something inside of our own system. This leads to a low level inflammatory attack against your own system.
In type 1 diabetics there is some evidence of a post viral auto-immune cause in some cases.
Because I've been running from doctor to doctor for years without results - because they won't test for anything other than the regular stuff, like blood tests, heart issues, etc. My boss doesn't believe me since CFS or burnout couldn't possibly exist, you just need to focus on your work more. Everytime I say I can't go out since I'm too tired I get made fun of or have eyes rolled at me.
It's like denying someone has a broken arm and gets ridiculed for not wanting to play tennis.
I think it's simply because no normal human wants to know that they're permanently damaged. It's a real tough pill to swallow. You have to be very comfortable with your own mortality.
I just saw this and he doesn't say that. He says that he was drinking with Woody Harrelson, had to be helped into his suite by a bodyguard and "I woke with a monster hangover" when he first noticed the auto-animated finger.
> where other crew members also have Parkinsons
Michael J. Fox himself throws some cold water over this to avoid over-extrapolating:
"Believe it or not, from a scientific point of view, that's not significant."[4] Donald Calne, a Vancouver neurologist, said the incidence of Parkinson's in society is about 1 in 300, but that four of the 125 people on the Vancouver set of Leo and Me developed the disease. Calne said, "It could be coincidence. But it's intriguing, it might be something they were exposed to."
It is briefly mentioned when he is talking about his “workaholism” when he was young and also part of many articles on this phenomena. See the wiki page for sources.
> So what about Fox and the suspected Leo and Me cluster? Did they all breathe in some environmental toxin in the studio? Or did they perhaps pass the disease to each other? One theory, that has been around for years, is that Parkinson's could be caused - or perhaps triggered - by a viral infection, maybe even influenza.
> Dr Donald Calne, of the University of British Columbia Hospital, is treating two of the cast of Leo and Me. He told the Chicago Sun-Times that studies have found there to be an increased risk of clusters among certain workers who operate closely together - principally teachers, medical workers, loggers and miners. They could, the theory goes, be exposed to more viruses than most people, and this might cause them to develop the disease.
Sorry I don’t have time right now. Perhaps I misremembered, but thought he said he would often sleep off illness in the car when the driver would take him to and from gigs when he was a teen. I trust you looked.
He talks about working two jobs but this was during Family Ties & Back to the Future, 6 years before his symptoms. He describes sleeping in the car but no mention of illness. At best it's "can't be good can it?" and "confused about which set I was on" but no mention of sickness. Were this to be a cause, and I don't there is any evidence to suggest it is but I feel the doc wishes to insinuate so, it would be a stress/sleep/overwork type risk factor.
I would note the irony that you bemoan people for not believing something when the evidence you cite isn't there - it suggests more caution is required! From my own reading, that sums up the topic: people are open to viral theories but the proof just isn't there yet so believing it is premature. Parkinson's remains poorly understood in both mechanism and cause. It is said to be "a combination of genetic and environmental factors which might include pesticides and head injury". I imagine post-viral consequences could fit within head-injury type risk factors but we are not at a position to make statements of fact about such things.
Here's two studies. Thanks for the feedback. I choose to bemoan those who deny it completely and will continue to do so. Not those who keep an open mind.
> It is beyond me how people can deny post viral syndromes.
If there’s anything the mass death and injury of COVID have taught me, it’s that there is pretty much no level of harm that can’t be justified with appeals to “they deserve it because X”, with X being whatever quality or characteristic allows someone to rationalize away the fundamentally random and widespread harm as being limited to an out-group. This should’ve been obvious to everyone from the HIV/AIDS crisis, but it’s bluntly apparent now.
Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome." (CSS) This syndrome is caused by a chronic dissociative or avoidant stress response, usually having it's origin in early childhood adversity. Prior to developing CFS, most individuals have other manifestations of CSS, such as IBS, chronic pain, TMD, etc. Every new stress, be it a viral syndrome, a grief event, a difficult move of house, what-have-you, can cause CSS to further evolve, eventually arriving at CFS. The average CFSer has 5 other CSS syndromes. Treatment is pacing and mindfulness. This treats the underlying issue of chronic avoidance/dissociation. See cfsselfhelp.org.
Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head.
https://www.cfsselfhelp.org/pacing-tutorial reminds me of what the livejournallers called "spoon theory". In both cases the observation is that exceeding one's limits can cause a "crash" of much worsened symptoms. At least it recognizes PEM and doesn't recommend blindly applying graduated exercise therapy.
Do you have any good research on ME/CFS biomarkers?
You're on the nose. Dismissing mystery symptoms like this is doctor 101. As it happens we do have research on ME/CFS causes and biomarkers such as gut dysbiosis toxins[1], deficient SCFA production[2], elevated rates of enterovirus[3] and herpesvirus[4](particularly EBV, HHV-6 and -7) infections. Coincidentally, every single of those things is associated with dementia in old age.
Absolutely everything points at the origin of CFS being down to ongoing infections causing immune response, mitochondrial dysfunction, and sickness behavior. OP's "central sensitisation syndrome" is akin to 19th century's "female hysteria".
I just want to clarify that I absolutely agree that there are a multitude of pathophysiologoc changes in cfsers, including mitochondrial dysfunction, hrv changes, ongoing viral reactivations, deranged cytokines etc. I think the difference in our opinions is just that I my opinion, these physiological changes are downstream of cns dynamics in the lateral frontal pole, pituitary gland, amygdala, and cerebral cortex. At any rate - thanks for your thoughts.
I'm not convinced. The human brain is an organ like any other- evolution had vested interest in keeping its function adaptive, and to this extent even social stress induced depression and vulnerability are adaptive responses. Most severe chronic illness - mental or otherwise - isn't.
Thanks for your response - I see cfs as the result of almost “wear and tear” on the system. I think the “push-through” approach to life that many cfsers had prior to developing the disorder is very adaptive. I often meet v cfsers who had been v high functioning in their careers. It’s just that the adaptive response is not sustainable long term for some people…thanks for listening and cheers!
There is a huge amount of empirical evidence that adverse childhood experiences disrupt the HPA-axis as well as other biological systems. It's also well-known that people with PTSD have low cortisol. These aren't controversial findings. They've been found over and over.
I have CPTSD and it's very clear to me that the symptoms of this "mental disorder" are in my body, first and foremost. And it's clear that after I go through a flashback, I'll end up going through symptoms that many would describe as chronic fatigue syndrome or adrenal fatigue. So I don't think the comment is to say "It's all in your head", but to say that the mind and body are actually connected. (Shocking!) It's a two-way street. I'm actually relieved to see a medical professional say something that I've been thinking for the past few years.
Yes everyone is stuck in mind/body duality. From
a neuroscience perspective all psychology is instantiated through the nervous and endocrine systems. So it’s reasonable to me that a habit of mind such as chronic dissociation - could have an outcome in physiology such as cfs. Like you I am patiently awaiting biomarkers or other reliable indicators.
The idea of mind body duality is crazy to me, yet I see so many people kind of stuck on it.
If you take a modern computer controlled car and start changing other parts of it, such as the tires, fuel or even something like a spark plug starting to go bad, the computer in the car has to adjust itself to maintain its performance envelope. Change the system enough and the computer will no longer be able to compensate and likely throw some error codes in your direction.
And the car, compared to the human body, is a much simpler system with much more discrete and well defined parts. The mind/body integration is far more complex. The control systems to maintain homeostasis without ones organs demands killing off the rest of the body are truly something to behold.
While it may be true that CFS people have trouble getting doctors to take their symptoms seriously, it is also true that researchers who investigated psychosomatic origin of CFS had to to discontinue their research due to the number of death threats they were receiving.
This is just not good reasoning. Just because some things have been mechanistically explained in the past 50 years doesn't mean that any arbitrary condition will eventually be non-somatically explained. In fact, the argument (vacuous as it is) could go the other way - anything that has left after we've shrunk the pool so considerably is considerably more likely to not have a non-somatic mechanistic explanation than anything in the original pool.
And FWIW, CBT is effective for IBS. But with the gut-brain connection, we really are pushing up against the bounds of mind-body dualism with stuff like this.
In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital at a specialty clinic, so I trust the veracity of their claims.
The problem with CFS is simply that it is a syndrome. It is far too nebulous a label to be of much use. It describes everything because it describes nothing! I have an autoimmune disorder that debilitates me. I don't particularly care if it is labeled as CFS or small fiber neuropathy. @lindsaywaterman, I am curious about collecting a body of documents on my illness; I would be greatly appreciative if you could contribute your professional experiences dealing with CFS patients whether it began with an illness or was simply an unrelated psychological condition lumped in the same category on account of a superficial similarity in symptoms.
Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc. etc. etc.) but at no point, is there a department of immunology that takes over or even contributes.
I've worked my way through azathioprine (poisons your bone marrow to reduce white blood cell count - great for getting skin cancer) to vedolizumab which targets a single gut immune system signaling molecule. I'm lucky in that both have induced full remission which means all the inflammation related symptoms go away, not just the colitis. But I know many people who aren't that lucky and who get some symptoms controlled while others continue unabated. And then there are folk like you who seem to get nothing.
The immune system in complex in the proper sense but we still treat the problems it causes reductively. Worse, most of the research that is done treats it reductively also. If COVID had a silver lining it was that it seemed immune system research got a couple of decades of research done in two years. But when I'm talking to my GI, I really feel that nothing has changed and that at some point, I'm going to flare again, get deeply depressed, be unable to move properly or exercise, lose feeling in my toes and after the steroids have ruined me a bit more, I'll be stuck on a new IBD drug and will hope for the best.
We need these diseases to be treated systemically, as a class and for the immune system to have it's own specialists in research and treatment. They would be able to act as sherpas for sufferers but more importantly, would be a point of nucleation for new ideas about the immune system since they would be exposed to the gamut of problems sufferers face.
It makes me angry, which is probably a flare-risk factor...
>I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body . . . . at no point, is there a department of immunology that takes over or even contributes.
As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of tests to determine neurological function, but very little tests done on immune function.
It really feels at this point that not by connecting these diseases together and treating them as a class, we're missing the woods for the trees. Sadly, all of the economic incentives are to keep treating them separately and reductively because chronic diseases are great long-term revenue generators. TBC, I'm not attacking the drug companies here (UC was a killer until pred was discovered in the 1950s and Vedolizumab is working fantasically well for me) but we need the immune system to be treated as genuine clinical and research discipline to really cure these things.
My last UC flare was preceeded by a bout of shingles which is caused by an opportunistic latent virus. My doctors always talk of my immune system as being over-active. It really seems to me that it's more the immune system becoming disordered - which latent viruses play a major role in. My docs aren't remotely interested in having that discussion because it doesn't involve the details of gut epithelial cells. Fascinating as they are, I don't think we're going to cure UC or any other AI disease by focusing on them.
There is very convincing research that Epstein Barr Virus causes Multiple Sclerosis, and the current treatment I am on for MS destroys the B-Cells the latent virus lives in. I think you're spot on, infections are probably the cause of most of these auto-immune diseases.
In MS we're getting closer to finding the cause and ultimately the cure. It does take a while for research to get funneled to the right person with the right specialty and right funding -- sometimes years, decades.
I'm not sure tying the diseases together would be a winning strategy...? My MS could be caused by the EBV living in B-Cells and a genetic or environmental (or both) trigger. Your UC may be caused by a certain bacteria living in your gut triggering a T-Cell response by a different genetic or environmental element.
And yeah, the doctors don't want to hear my pet theories. hah. I have done my own labs, brought them in, and the doctor just gives me a condescending look like - why are you even trying? I guess they don't know how desperate most of us are for answers.
> There is very convincing research that Epstein Barr Virus causes Multiple Sclerosis
Eh, the strongest evidence is one large study from last year of 10 million military personal followed for 20 years that identified ~800 total cases with a hazard ratio of 32 for EBV seropositivity.
There’s strong evidence of an association but I don’t think the causation question is answered. The challenging thing to reconcile is how low the incidence of MS is despite 90% EBV seropositivity in healthy controls (99-100% in MS).
I've been on Fingolimod Accord (generic Gilenya) for a year, Gilenya for 8-9 years, and before that Rebif for like 13 years? Medicated at 18, ill since 12. Never felt better really. Symptom free and side-effect free.
The Rebif was kicking my ass with its side effect, I attribute my constant intrusive suicidal thoughts during that time to the medicine, but other than a lower-than-normal heart rhythm I am a very happy user of my current medication.
After 3 years of Ocrevus I'm switching to Kesimpta this week. I've had too many infections with Ocrevus and I'm hoping the lower dose with Kesimpta will help. I had laryngitis for a few weeks, Covid for a few weeks, other little things too, and have had to miss work as a result. Otherwise Ocrevus has been amazing for my MS!
I was diagnosed almost 15 years ago and doing fairly well. I skipped the 'CRAB' drugs specifically because of the depression/suicide risk. Being already at risk for those things I thought the negatives far outweighed the positives -- personal choice.
So glad Gilenya is working for you! Some of the new drugs are quite amazing.
By chance, have you seen a rheumatologist? I got diagnosed with spondylitis first and Crohn's second, so I took the rheumatologist > gastroenterologist path, and a rheumatologist sort of does what you describe about systemic immune monitoring.
Not perfectly, to be fair. And rheumatology is a criminally overlooked and understaffed specialty. But my rheumatologist has been really good at helping me tie together various issues that seemed unrelated but actually shared a root cause. And, immune problems being what they are, I'd wager most of his patients are in a similar boat, so the whole "let's figure out why your guts are bad AND your joints hurt AND your skin is awful AND... etc" thing is business as usual on his end.
I've never seen a rhematologist. It does feel like the specialism that's closest to immunology. My docs always ask about joint pain and there's certainly overlap between arthritis and other inflammatory diseases like UC. My grandmother had terrible arthritis and as it tends to be more common in women, it seems likely that's the reason rheumatology in general is overlooked and understaffed. Biologics like Infliximab started out as arthritis treatements and were re-purposed as IBD treatmetns (generally more useful for UC than Crohns).
A friend who was recently diagnosed with UC (but with many other obviously AI symptoms / conditions) has managed to get himself referred to a Rheumatologist which is almost certainly a good thing.
But regardless of how good a rheumatologist might be at dealing with it, it isn't a fix for the issue that the immune system isn't treated as a first class citizen in medicine.
I'm curious about the small fiber neuropathy in your toes you mentioned. I was diagnosed with severe sarcoidosis a few years ago, and am currently taking azathioprine along with adalimumab. As far as I know the suppression is working regarding the sarcoidosis, although I've been having trouble with viral infections lingering a long time. Recently I've been noticing some burning and numbness in my toes, and your post made me realize it's most certainly nerve related.
Neuropathy is not a serious issue for me, but like depression, eczema and the rest it's something that I get as either as a co-symptom in a flare or a signal that a flare is coming. The docs like to use c-reactive protein as a biomarker, but I tend to find it's a trailing indicator of problems. I start expecting a flare when the subsidiary symptoms appear (eczema etc.) as they tend to be leading indicators. The problem is that because my GIs are only really interested in GI symptoms, they see those things as unrelated until the GI symptoms appear.
Other folk I know with AI diseases have seen similar patterns and have for example seen improvements to things like PN when they went on anti-inflammatory drugs (5-ASA in the case of one friend) which were prescribed for UC.
I don't think the PN was caused by the Azathioprine. I have always felt it was a co-sypmption that I get as a "bonus" when the colitis flares.
> is there a department of immunology that takes over or even contributes.
Because we don't see the immune system as the organ it is. Which is odd that things like vaccines are effectively medicines for that organ.
But at the end of the day we still don't know 'that much' about the immune system because of its extreme complexity. It's still very difficult or impossible to target a bad acting immune response in an individual without disabling all the immune system (and yea, this puts you at a lot of risk).
I like the series that Kurzgesagt made on the immune system as a way to explain this complexity a little more simply.
The book that accompanies the Kurzgesacht series is very good. I bought it for my eldest who enjoyed it enormously. He's been complaining about his HS biology lessons being rubbish as a result.
The fact of its complexity is why we need to start treating it as a unit. Reductive thinking, research and treatment won't lead us to a proper understanding of it. Among the potential benefits of the development of AI is hopefully an improvemnt in our ability to reason about and understand complex entities like the immune system. I think it's more likely that a new specialism will develop from that, that doctors developing one from what exists today.
> immune system to have it's own specialists in research and treatment
Huh, immunology is a 2-3 year accredited fellowship and board certified medical subspecialty. Pretty much every academic center has basic and clinical research programs in immunology.
Hello - I'm not sure I totally understand your question however I am sorry you have suffered so much with this. In my experience there is often an overlap between central sensitization and other chronic illness. So for instance, 30% of people with Rheumatoid Arthrtiis have fibromyalgia. Which means ,they have joint pain and fatigue even when there is no active RA. So it's never wrong to try a pacing approach to see if it helps. Good luck! (cfsselfhelp.org)
>So it's never wrong to try a pacing approach to see if it helps.
How many people who've had chronic fatigue or post-exertion malaise for a few years do you think haven't tried pacing?
I'm sure some have not tried it, but my guess is that it occurs to most as a pretty obvious thing to try even without a health-care provider's or information source's suggesting it.
Even if a person's first response to chronic fatigue is to try to power through it and work even harder, after a few months of that strategy's not working, most people it seems to me will try taking it as easy as practical for a while.
I would say most of the 100s of patients I have seen w cfs or fibro haven’t given pacing a good try - either they do t have the common sense you mention, or they do, but are unable to make the changes required to actually pace. Ie making boundaries with family, leaving an abusive partner, taking time off a cherished job etc. And then, it is very rare for a person to, once they have removed these more external sources of stress, start to work on pacing their internally generated stress (ie “free floating anxiety” etc) through dedicated mindfulness and appropriate psychotherapy.
Exactly - mental, physical, and emotional work. IMO real pacing is extremely difficult, requiring a real transformation in life approach over the course of 3-5 years. And without certainty that making the sacrifices will pay off, most people take only half-measures, get poor results, and conclude it doesn’t work.
You could be completely right in some cases, but the way you present this is completely disregarding a professional researcher, peer reviewed and published paper, and honestly quite decent pop sci writeup.
I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself.
Ouch, you're coming at me red hot there! To be clear, I think post-viral syndromes are a common "proximal" cause of CFS. If a patient doesn't have an underlying dynamic of chronic dissociation, and doesn't already have a few other CSS syndromes, then I think it's unlikely they will develop CFS as a post-viral syndrome. Cheers.
To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause.
People who seem likely to be diagnosed seem less likely to happily sleep for 12 hours a day for a few weeks after a viral infection, more likely to blame themselves for their state and more stressed by awareness that something is wrong.
Naturally, if a rich layabout has the problem anyway, then we can look to their childhood and find at least one trauma.
> To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause.
Heightened awareness of a problem can be related to the cause - these are not distinct.
The comorbidities of ME/CFS make it look very similar to known psychosomatic conditions. Researchers who explore psychological-heritable causes have been forced to stop due to death threats.
Sure but if you look at male outcomes, we are clearly ignoring a lot of real health problems that are deadly, so 66% of males ignoring a less than deadly problem that allows 8 hours of work a day seems more likely than a lot of female hypochondriacs to me.
This argument could be applied to any condition with psychosomatic indicators.
Your suggestion that somatically-involved conditions aren't 'real' is offensive and what gives rise to the stigma that means we can't talk about this in the first place.
There's no telling what's real once you are willing to go down that route, least of all a doctors opinion. If someone stops displaying symptoms that could just be a non blinded doctor and a placebo.
I think the offense is going there without any double blinded science and then relying on non reproducible fields of research to annoy the patient.
I have a similar experience in my industry. Thousands of publications each year from academia totalling billions of dollars in funding with nearly none of it mattering at all. I've lost track of how many times I read a great title to find it had absolutely nothing of value outside of the researcher getting to aggregate some key words for their profile. It's baaaad.
There are some occasional gems, but it's like a handful per decade that are of true value with the rest not even worth the kB they take up in storage.
I may sound bitter, but when I see the government dollars announced it makes me cringe a little bit as I know there are so many better places for that money.
Although I agree that we are framing this thread in the context of the original article, this medical professional is presenting their (experienced) opinion, and GP is not discussing it and instead chooses to require some token criticism of the article. This doesn't seem charitable to someone presenting their professional opinion.
I'm a neuroscientist who published on central sensitization and chronic pain. Unfortunately, I was forced into retirement by chronic fatigue syndrome.
The linked article and others have convinced me that CFS can be caused by viruses.
There's one important and tricky question: is a viral infection necessary to trigger CFS in humans (such as long COVID or in this linked article), or is an extremely stressful series of events (which could include the physical stress of a severe viral infection) sufficient?
Giving a certain interpretation of their comment, I think the physician could be stating that they've seen patients with CFS that has been triggered by stressful events alone. I think this can coexist with the linked research if CFS can be triggered by stress OR a virus.
When chronic stress is mentioned as a factor, that should not be interpreted as being a psychological predisposition ("it is all in their head"). Instead, it is a predisposition on a cellular level.
The brain regions involved in central sensitization are tightly linked with those involved in chronic stress. Animal models of chronic stress lead to central sensitization of pain, as do animal models of chronic illness. Chronic stress causes an immense amount of remodeling in the brain and the rest of the body.
Proving or disproving that CFS can be triggered by chronic stress alone is difficult because CFS is a diagnosis of exclusion. Diagnosis can take a long time. We humans are always getting viruses and occasionally enduring stressful life events, so it is difficult to untangle the two.
If we look at my personal history, my diagnosis took several years (above average for CFS patients). I can point to 3 stressful life events and 2 viral illnesses that might have preceded CFS onset. The cause for my CFS remains a mystery.
Without a mechanism and diagnostic test for CFS, I think this question will remain unanswered.
I think it is contentious to say that CFS is an endpoint of central sensitization. It might be, but it also might be related to mitochondrial dysfunction or another mechanism-- too soon to tell, in my opinion. Central sensitization is certainly a component, but I do not think it is proven to be the only component. I should say that I'm extremely biased towards believing in central sensitization as the cause of many things because that was the primary focus of my research.
Again, without a mechanism and a diagnostic test for CFS, much is murky. Viral infection can at least be a cause. I think we're far away from having a tidy answer like the story of H. pylori and ulcers though.
I disagree - it is fine to talk about the broader context of research without being either deferential to one datapoint or explicitly refuting that one datapoint.
There are lots of other papers fingering EBV as a cause of ME/CFS, but there are many, many papers showing the similarities of the population with this condition and other conditions that have been shown to be psychosomatic, showing correlates between CFS-like conditions and perception of illness as stronger than past EBV infection (something not true of most other illnesses), etc.
It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.
You’re totally right that worse somatic symptoms create a viscipus cycle of avoidance and worsening symptoms. I do think that a chronic pattern of avoidance is what causes somatizing in the first place tho. Peace.
You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of what?
The medical profession has a chronic pattern of avoiding the fact they can’t heal anything involving more than about 4 variables. Explain how vitamin d, k, and serum ferritin interact in bone marrow please Doc or cholesterol’s role in cellular permeability as an immune defense or a vitamin D deficiencies effect on the permeability of cartilage and subsequent concentrations of potassium in the inner ears please doc, or latent hibernation responses, or the effect of obstetrics on the mitochondrial health of a population, or unknown pathogens or a combination of all of those things.
Because any combination of a breakdown in those things could be contributors to the fatigue you’ve attributed to avoidance yet your profession has avoided researching all of them. Your profession avoids the fact that medical research is mainly focused on fast financial returns.
I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions . I cured my chronic fatigue - no thanks to your professions expertise - the avoidance was a necessary part of the cure while my body healed.
Some times people have bad luck. It is unavoidable.
I think you're reading the term "avoidant stress response" and the consequent term "chronic avoidance" as having a moral value. This is an issue with many medical terms.
In my understanding, these terms simply refer to how an individual tackles problems: do they avoid asking for help to the point of dysfunction, or are they able to ask for help when needed?
edit: Once an individual's systems are out of balance, it can be difficult to rebalance without the right perspective. If an individual cannot regain equilibrium due to interacting factors (such as someone who grew up without ever knowing equilibrium), the lack of balance becomes chronic.
> You seem comfortable placing responsibility for the illness on your patients “avoidance”.
You are misunderstanding this. Subconscious avoidance is not about responsibility. Think of the way rabies makes people hydrophobic. That is a psychosomatic response. A person is not in firm "control" of these responses, although they sometimes can be addressed with therapy.
> I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions
The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry. Many, many lay-people assign strong negative moral associations with having any somatic cause of their symptoms.
> The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry.
Well, it’s a vicious circle isn’t it? A lot of issues are dismissed by the medical community (and I disagree with the characterization that “it’s somatic” isn’t dismissive in practice) for decades and decades and simply not studied, until the cause can be medicalized and then suddenly it was real the whole time.
It’s not just that “patients are being irrational and picking up the wrong message”, that’s actually the same message that the medical community itself projects. These aren’t real issues worthy of study unless a causal mechanism can be identified. And for a lot of issues that’s simply been a matter of time, despite decades of doctors insisting it’s all just in your head.
Fibromyalgia and cystic fibrosis are classic examples of this. People have real, objective pain and the response of the medical field for years and years was “no you don’t” or “it’s in your head, you’re just stressed, you need to relax and it’ll go away”.
Microbiome is probably another that the needle is starting to swing on.
But in general, medical practice suffers heavily from the problem that if you can’t identify a mechanism, and you can’t prescribe a pill or cut something out to make it go away, it’s not treated as real. Medicalization is real and has a highly negative outcome on the direction of research in the field. And that in turn produces this barrier where doctors just want to make “somatic” patients go away and patients perceive this and know doctors aren’t really taking the issues seriously. And that degrades their trust in doctors and the medical community and creates this barrier to patient outcomes. That is largely your fault and not the patients, and the answer isn’t just “better bedside manner/explain the situation better”, it’s to stop ignoring issues that have negative QOL effects until they can be medicalized and then turning it into a $50k/y drug the next year.
It’s really that flip from “your pain isn’t real” to “it’s so real you’re going to have to pay $50k a year to treat it” that really drives the wedge. And that’s something of a US-specific problem of course.
But when people are paying $300 out of pocket for a GP visit they actually expect their concerns to be taken seriously and not just “it’s all in your head”. And I recognize that’s not a great position for practitioners either but again, the price tag you have chosen to associate your care with produces this need for acfual tangible outcomes and not “just change your whole life and make a bunch more money and life a much lower-stress life”. That simply is not actionable to most people. Just like semaglutide has done more for obesity than decades of doctor tutting about diet.
And again, this piles on top of doctors themselves providing objectively sub-standard care for vulnerable populations due to inherent biases etc - women, obese, etc tend to have actual medical symptoms dismissed at highly elevated rates due to inherent biases in practitioners, so these “weird” diseases tend to get the double whammy of doctors who don’t believe in the disease and doctors who don’t believe in the patient.
My aunt’s uterine tumor wasn’t clinically recognized until it was the size of a volleyball and all her pains were dismissed because of weight and because she was a woman. Imagine she had fibromyalgia. What do you think that doctor-patient relationship looks like? And that’s really on doctors not patients. This is the problem with the “we can’t recognize it and won’t treat it” - a lot of times the problem is doctors won’t recognize it, and this extends to the system of diagnoses itself. If it can’t be medicalized it’s not real.
> These aren’t real issues worthy of study unless a causal mechanism can be identified
There are plenty of people studying somatic causes of CFS, they just get death threats [0].
I think the focus should be on destigmatizing 'somatic' explanations. That we view somatic explanations as dismissive for real conditions is not a problem with the explanation because some real conditions are psychosomatic and that is a fact of life. It is a problem with the stigma we assign to it.
You know, the point of this post was that “medical science is pretty bad at recognizing real, non-somatic causes of these diseases when the cause is not obvious, and instead tends to handwave onto somatic causes, and people generally find this offensive especially when the cause is determined another few years later and they’re asked to pay $50k a year for something their doctor was sure wasn’t real two years ago”.
And yet you’ve somehow both completely missed this point, and deflected onto “but doctors get pushback and even personal threats when they try to double down on this even harder”. Yeah, don’t default to telling patients it’s all in their head, after a while it gets offensive, especially when a few years later you try and charge them $50k a year to treat a disease you told them wasn’t real.
“Somatic research” is fine on paper but in practice it’s usually an excuse to deflect from a disease that cannot be adequately explained in medicalized terms. Everyone knows “somatic” means “in your head” and that inherently leads to a course of treatment that’s “get the patient to believe it’s not real”. And since many of these diseases do have medical causes that are not somatic (but not adequately medicalized for treatment) this gets offensive after a while.
I gradually figured out what activities, supplements and foods reduced my susceptibility to fatigue and pain and then repetitively used them until I got to a point that I was no longer susceptible to fatigue within the bounds of what I consider a healthy fulfilling life so that I can now convincingly pretend to myself that I don't have cfs. I'm no longer staring into the abyss. I can't run a marathon or do too much mental grunt work but I can just make a modest living, go for a 40 minute zone2 run or 3 hour hike, be a parent, sustain a relationship and keep some friendships going. In the midst of cfs I could only really be a part time parent with support, everything else stopped and I had no certainty that it would ever start again.
What you're looking at is people with really bad gut microbiomes or other ongoing infections, not "CSS" - the behavior you're describing is called sickness behavior[1] and is produced by ongoing infections and blood infiltration by bacterial toxins like LPS (which coincidentally is used to induce mouse models of depression)
Rhetoric like yours is why most chronically ill people suffer for years and decades before getting any kind of diagnosis or treatment at all.
Well - I myself had cfs and found that pacing and mindfulness really helped! I think these approaches have been empowering for both myself and hundreds of my patients. And there is some clinical research there to back my opinions up. however I am always open to and hopeful that other approaches like those that go via the microbiome, will be helpful.
I believe you, but at the same time you have to take the correction for the fact that humans are storytelling creatures- we correlate our life experiences with our internal experience and spin them into stories by instinct- I've never met anyone who wasn't convinced their illness was related to life events and mindset for a long while before stumbling onto a diagnosis.
So I always wonder, are we seeing successful treatment of somatic complaints, or are we seeing regression to the mean spun into a story, or perhaps both?
So you're saying it's all psychological? If this is true, why are so many with ME/CFS/Long COVID responding so well to LDN?
I have had ME/CFS for 25 years and also practised mindfulness and pacing all that time yet it did nothing, but when I took LDN it instantly worked.
I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation. I suspect CFS is at its core some type of autonomic dysfunction. This is why many medications do work: some of my patients have had great response to LDN and I'm glad it's been beneficial for you. As for the mindfulness and pacing...yes not everyone gets benefit. A lot of troubleshooting required - it's difficult to figure out for sure. Good for you for doing that though!
Really hard to get proper funding for LDN. It is an already incredibly cheap drug in a minute dose... this treatment is not exciting to anyone except patients and a few passionate researchers.
Lots of studies showing "interesting results, needs more investigation" but high quality studies are very slow to come...
The moment this sort of hypothesis turns up I always crow cite your sources. There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.
Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources:
1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3
2. Using psychophysiologic treatment for long covid and back pain:
Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732
and
Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959
and
Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD...
as well as a review looking at the connection between early childhood adversity and fibro
Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011
there's a lot out there but year the research is still in it's infancy ...
All I will say is that this is a very personal subject to many (especially the type of person who visits HN) and so a clear look at the evidence might be difficult on a forum like here.
ME/CFS is probably one of the conditions most difficult to discuss in a dispassionate way.
sigh no, this is not the generally recognized understanding of MECFS, just one hypothesis, and one that better explains fibro/pain [1]. It's also a conclusion not too distant from the 'its in your head' concept that has held back research in this field for decades.
A more recent hypothesis with some experimental evidence is related to ATP production issues, specifically the itaconate shunt. See this overview from MECFS expert Ron Davis filmed last week [2]
Disruptions to a healthy gut microbiome is another hypothesis that has a lot of interesting results. I'm involved in a study on this [3]
Saying 'I'm a physician, its best understood as...' suggests a level of certainty to a disease whose underlying causes are unclear and the subject of active research. It would be an extreme disservice to MECFS patients to just say 'do pacing and mindfulness' and not explore other very promising treatments.
That said, pacing is essential and CSS is worthy of additional study.
How does this theory line up with the my experience, which seems to be similar to a lot of people with CFS:
I had high energy levels until I suddenly got sick, and had a mild fever for about a day. After that I had the sort of fatigue one feels when having the flu, except it lasted for about 8 months, and then gradually lifted. After that my energy levels totally recovered and stayed normal for over a decade. All tests, including psychiatric evaluation were normal so it was considered CFS.
I've had constant brain fog / fatigue for the last 6 months after a brief stomach flu. Got a tip to try the sauna for 3 days a week, which apparently doubles human growth hormone production. After two weeks of this I've finally had 5 days in a row where I don't feel tired. I still need to sleep more than usual, but before I could sleep 10 hours and still feel very tired, now I feel great after 9 hours.
The person who told me this had a patient who lost her sense of smell after Covid, and it wouldn't come back. It came back after a single session in the sauna.
Yes that’s pretty typical. Some people go in stepwise, some go in all at once. I think you got lucky with your complete recovery, although that is common after about a year for long Covid in particular.
The mind-body dualism is not real and mind & body symptoms can be co-productive.
That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.
This is just hand waving. There is no evidence that this thinking helps with ME. The studies have been debunked and in the UK guidelines have been updated, and clinicians are slowly catching up. The research is used as a textbook example of bad science in some universities.
You can watch the primary researchers fail to defend their work here:
Funding levels for biomedical research on ME/CFS compared to biopsychosocial has been a drop in the ocean. Funding overall is absurdly low relative to disease burden https://pubmed.ncbi.nlm.nih.gov/32568148/
Regardless, there are hundreds of studies showing biological abnormalities in ME/CFS patients- dysfunctional mitochondria, changes in white/grey matter volume, hypoperfusion in the brain, SPECT scan abnormalities, VO2 max going down after exercise, whatever’s going on with Ron Davis’s nano needle study. You could go on and on- just type ME/CFS in to google scholar and skip past anything written by a UK psychiatrist.
You might be confused regarding the lack of a biomarker that’s specific enough for diagnosis. This doesn’t mean that we don’t have pathological findings, just that none of them are found in _every_ patient and also not found in patients suffering from other illnesses. This may well be because ME/CFS isn’t even a single thing.
Long Covid researchers are steadily replicating the same findings we have seen in ME/CFS, but faster because they have more funding.
Death threats do not tell us anything about whether the science is true. The allegations are often used by researchers to distract from scientific discussion of their work. Still, more on the details of those allegations here:
Alternatively, sick patients desperate to get better have been written off or abused by their doctors for decades and that makes people angry.
Here’s a story of a girl who was made permanently worse after her condition was treated as psychosomatic and she was encouraged to gradually increase her activity. On autopsy her spinal nerves were lit up with inflammation:
https://www.bbc.co.uk/news/health-44969741
Here’s another of a Danish girl who was taken from her parents and returned as a husk of her former self after legal challenge:
https://me-pedia.org/wiki/Karina_Hansen
There are thousands of stories of similar neglect.
I don’t know a single ME/CFS patients who would care if their condition was somatic if treating it as such was effective. People just want to get better.
Patients undergo treatment on the basis that it’s a somatic illness, it doesn’t work or makes them worse, and then they discover how few people there are looking for alternative approaches, and how flawed the studies supporting their treatment were.
I am curious what your background is. Are you an ME patient, or a doctor, or…?
Chronic fatigue syndrome resulting from SARS-2 infection should be contextualized and understood from chronic fatigue syndrome resulting from original SARS from 2003. Presentation of which should be different from what you see in practice.
- An exploratory study of nurses suffering from severe acute respiratory syndrome (SARS)
- Long-term Psychological and Occupational Effects of Providing Hospital Healthcare during SARS Outbreak
- Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up
- Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study
This is my first time hearing "central sensitization syndrome." I know back ~5 years ago John Sarno's "tension myoneural syndrome" was still the dominant diagnosis in the self-help circles of mindbody illness, and it at least had the mechanism of repression to enrich its explanatory power. Still a far cry from the richness of psychoanalytic theory, but at least it was a move in the right direction after such an epic retreat from Freud. Central sensitization syndrome seems like such a concession to the medical model, which I guess puts it in alignment with the poverty of therapy ("mindfulness," etc.).
Yes, there's a lot of terminology out there to describe this constellation of symptoms/the process of CSS. The sarno stuff is getting a lot more attention these days as "psychopysiologic" therapy. Things are moving in a good direction and I'm hopefull that repression will be characterized neurophysiologically. See the references I posted to another comment.
In other tissues, muscle action drives the fluid back to the circulatory system. (Remember, the heart is just a big muscle. So this makes perfect sense.) So exercise dramatically increases the rate at which interstitial fluid gets returned to the circulatory system.
This means that one of the functions of exercise is "taking out the trash." And this is likely a huge and overlooked factor in why exercise is so beneficial to your health.
Different sources cite different rates, but exercise may increase the outflow by as much as eight times the normal speed of outflow via seepage. It's really a big difference.
First, do you have any opinion on prescripting valciclovir? Apparently some ME/CFS presentations are linked to herpes, and taking valtrex significantly mitigates symptoms. However, in order for this to be effective, it needs to be taken in doses similar to truvada or viramune, not as a short term fix for a herpes outbreak.
Second, any opinion on Bhupesh Prusty's work, specifically regarding fibernectin and a potential biomarker being in bone marrow?
Thanks for these - don't have an opinion on either but will look into. Broadly, I think immune dysfunction is a feature of most cfs so there is often a positive EBV test, or HSV test. I suspect this is more "downstream" than causative of CFS. However, it may be that there is a biomarker in the mitochondrial function, bone marrow etc...I hope one is found!
Why is the medical profession obsessed with biomarkers but not the next optimal step in patient treatment plans?
Root cause analysis of dysfunction in complex dynamic systems is a waste of energy.
Someone has the biomarker but they are a heroin addict which confers them a protective mechanism. What then?
If you have 5 heroin addicts with similar symptoms you can just experiment with likely beneficial next treatment steps. Then let machine learning track the treatment response patterns and reccomend next treatment steps.
Grouping health histories and symptons then recording responses to treatment plans then using machine learning to recommend next treatment steps is - surely better than searching for biomarkers so Drs can stick their hands up faster. Rockefeller gave us the Johns Hopkin Medical System , Can’t Bill Gates give us the complex chronic illness extension?
Why don’t Doctors have a 300 question questionaire for patients covering all aspects of the patients health? You could then group the patients into health dopplegangers. No need for biomarkers.
Combine the good part of alternative medicine ( carefully understanding the patients symptons) with machine learning.
There’s 8 billion humans. There are alot of sympton dopplegangers out there to experiment and record the effects of next treatment steps on.
Medical professionals are obsessed with being trivial pursuit champions and seem to lose sight of the fact that they’re often invited to play invisible bridge.
It is fantastic that they are great at trivial pursuit (The Johns Hopkin system is a modern marvel) and they do untold good above and beyond the measure of most citizens and far far more than myself but doing good doesn’t cure complex chronic illnesses. (I admire Doctors).
But it’s frustrating that we have to pretend that because Dr’s are great in one area (acute medicine) that the greatness translates to other areas. The halo effect is really strong.
Look up the research for recovery rates from cfs. Abysmal.
Machine learning doesn't actually work very well for that. Attempts to apply it as you suggest in medical research have mostly not produced clinically useful results. More basic research into root causes is the only approach that is likely to lead to truly effective treatments.
The data is crap. Patient reported data is notoriously unreliable. Even data reported by clinicians is highly inconsistent between organizations so it takes a huge cleansing and normalization effort to get anything usable for clinical research. Applying ML to it tends to find a bunch of spurious correlations that aren't clinically actionable.
I would use fitbits with daily step count, sleep duration and heart rate variability and breaths per minute and resting heartrate and body temperature to monitor patient progress.
I can ask the questions that would partition the useful dopplegangers. If you ask great questions you get the great answers. Then you just need to group the data intelligently.
What I can’t do is be a machine learning expert and database/sys admin and front end developer and negotiator with a public health system.
I’d let the patients vote on their next steps initially. I’d also have psych questionaires to measure their personalities. That would form part of the sympton /genetics doppleganger groupings. As would genetic profiles.
For CFS there aren’t that many logical next best steps. Most things have been tried, there is a sensible order to try things.
This is the case with most chronic illnesses.
However subsets within cfs are better off trying certain treatments before others.
The better a subset responds to a next treatment then the tighter the coupling of their doppleganger to that treatment. Then when any new people match that doppleganger you can reccomend they try that treatment. You’d shift there next best treatment orders around.
As you get more and more data the treatment recommendations get more and more granular and effective.
I could hire a naturopathic md to assign the treatment steps initially.
If anyone wants to do a start up - reach out, I can find funding. Just need a team. I’m going to do it.
I appreciate you sharing your knowledge. But I think you’re assessment of the situation is wrong. I think the general consensus is wrong and I have enough energy now to fafo. Given what I feel I know it feels immoral not to.
You appear to be speaking definitively as if you're fully devoted to this conclusion, even though the evidence is shaky at best. This is precisely why there's so much vitriol towards physicians when dealing with neurological symptoms. It's also why people flock to sketchy naturopaths and "alternative medicine" that peddle hundreds of dollars of snake oil supplements.
We should be exhausting and excluding all physiological causes before jumping to the psychiatric model. If you truly believe this, then your duty as a provider is to refer the patient to someone who is qualified to address the mental health of patients - a psychologist. Refrain from labeling your patients with this condition, as that will only burn the patient-provider relationship more and will lead to further distrust in the medical community. Regardless of the origins of CFS, it's important that patients have professional mental health resources that can help them navigate the stress and anxiety around their disability.
Here is some research which discusses how providers may be mislead into raising concerns over psychiatric/somatic disorders due to the lack of evidence on conventional diagnostics. In this research paper, patients experienced MS symptoms and appear to have normal conventional MRIs, but further analysis with advanced MRI techniques reveals inflammation in the CNS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880628 . This highlights how important it is to understand we have not exhausted our diagnostic potential and should be cautious about making claims without solid evidence.
EDIT - also since you're using your credentials as a physician here, do you mind sharing what area of practice you're in?
I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competent at that level of system complexity.
The leading medical solution for CFS is pacing and a web link. Chatgpt could do that.
Once you are past a certain level of system complexity - root cause analysis becomes useless as changing one part of the system affects the other parts unpredictably.
I am diagnosed with CFS. Didn’t seek the diagnosis, denied it initially which is not the norm.I now pretend I don’t have it as that is the best way to cure it.
But beating it was hell as you literally get given an A4 sheet of paper explaining the condition when diagnosed. And your brain is exhausted after reading the sheet. But that is all you have.
So you are supposed to take that A4 sheet of paper and troubleshoot your way out of the condition when the instructions on the A4 sheet don’t even work.
The best way I can describe it is you find yourself in a shame riddled labyrinth, your brain doesn’t work, you are tired and in pain and you are told to accept your new normal.
There are ways out of the labyrinth. A doctor doesn’t have the map though.
The best way to describe chronic fatigue is extreme sensitivity to over exertion. You walk to the mailbox and 24 to 72 hours later your body reacts like you’ve run the boston marathon and the mind reacts like you’ve just pulled an all nighter to manually sort 7 tabs of 3 columns and 10,000 rows of a spreadsheet on a 17 inch monitor under time pressure while hung over, 3 days into the flu in order to resurrect hitler.
CFS exhaustion and brain fog can get triggered by any stress response. And it kicks in 24 to 72 hours after stress exposure.
The Doc says pacing and mindfullness will save you. Except it won’t.
The body can get stuck in unhealthy stable states. I always encourage people to look at the roche biochemistry chart (with about the same success rate as treatment plans for CFS) to understand that the body can be hypersensitive to overexertion (mental or physical) for an infinite number of combinations.
Fortunately there are a quite a number of things that you can do to escape the labyrinth.
- Explain to anyone that cares that there is a medical field dedicated to assessing levels of debilitation and that cfs is as debilitating as cancer. (Very few people care)
- get stable accommodation.
- Get a comfortable supportive bed to convalesce in.
- Eat a diet that minimises inflammation - deeply boiled veges, rice, potatoe or sweet potatoe, grass/algal fed free range protein, olive oil. Maintain steady blood sugar.
- Body strength train.
- Sort out a vitamin and supplement regime with a genetic analysis.
- Take an anger management course to understand the anger of others.
-Understand pain - the curable app on chronic pain management is highly beneficial.
- Learn to forgive. Resentment ruins health.
- Get a career you are capable of. Aim low.
- Get regular physical activity.
- Perform improvisational comedy to condition the mind to cope with an onslaught of public social pressure.
- Pretend you don’t have chronic fatigue syndrome.
What doctors get wrong ( it is hard for them to comprehend the condition as most aren’t susceptible as they were tough enough to get through medical school) is that chronic avoidance is the right strategy until your body can cope with stress without fatiguing.
It isn’t all in your head. I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints.
The sad thing is that cfs is quite treatable but the medical profession says pacing and mindfulness is all one needs to cure something that is as debilitating as cancer.
You don’t need to be mindful to beat chronic fatigue syndrome. I think sarcasm is more beneficial when coping with a bleak future.
And I really like and admire Doctors - it’s not their fault that their system is terrible at creating healing treatment plans for complex chronic health conditions.
I have CFS too, going on 8 years now. Small fibre neuropathy in my limbs too.
Aside from pain management (opioids, ketamine, cannabis), I haven't found anything else to be helpful, and pacing was the opposite of helpful.
You mentioned strength training... how is that possible? I don't know about you, but I have a constant, lactic acid-like burning sensation in my arms, which becomes much worse upon exertion - for example, if I life a kettle full of water, my arm is burning with a strong need to put it down within a few seconds.
Because the best way to think about the syndrome is that you are a really terrible athlete.
I find it a healthy way to reframe what I’m dealing with.
I laughed at Eric the Eel, he’s laghing at me taking out the rubbish now.
They say athleticism is a reduction in recovery period.
Combine this with the fact the brain burns loads of energy and certain aspects of the brain uses things like the inner ear and vagal nerves and lateral light receptors as specialised instrumentation to save processing power when coordinating one’s balance. (I swear one day they will figure out lying down in the dark convalescing can affect the potassium concentration of your inner ear to the point you get stuck in fatigue cycle but any how).
Keeping your head steady while walking saves mental energy. A stronger thoracic spine and neck keeps your head steady for longer with out fatiguing the muscles or the mind.
Everytime you overtrain there is a inflammatory cascade that goes with the overtraining. Building up physical body strength is the easiest way to generate athleticism.
Once you can recover without fatigue you don’t have chronic fatigue.
I also think stabilising the thoracic area helps get a neurogenesis/cellular regenerationtype response going in the spinal cord that was ravaged by a viral load.
Basically if someone is strong enough to recover from an illness they recover. If they aren’t they don’t. Hunching over screens for long periods with only stress holding you up before convalescing is probably the worst preparation for cfs. Accounting is the worst profession for it. Their low autonomy detailed complex work that is surveyed in 6 minute intervals so they have a large forced cognitive loads for a long time periods combined with minimal physical exertion. It is an anti-athletic career for a lots of people who struggle with the cognitive load.
But the docs are also right anout a psychological component - whinging doesn’t help, there is a grit component to getting better. There is also lots of overtraining while you get better which is helpful to understand. Recovery is 3 steps forward 1 step back. (My whole point is help the poor person in the brainfog choose the next best recovery step and I also understand it isn’t Drs fault they haven’t the tools to do it because there is no profit motive to create the recovery system). Exercise physiologists are really helpful for avoiding overtraining but I also think you are better taking some overtraining hits initially on the strength training side if you aren’t wealthy to get the body to the point that it escapes can escape some of the fatigue.
Strength train to at least the point of sideplanks and throw in lots of propioception band balance exercises. And remember there is 24 to 72 hour delay to overtraining. Docs do have extreme amounts of grit as do successful accountants. They are admirable but also lucky, their dopamine systems are genetically robust.
I started strength training with a fragmented swimmers stretch. 1 limb at a time. The good thing about body strength training is you see progress which is important for hope. Which is another important aspect of recovery and dopamine generation.
I couldn’t sit and work for more than 20 minutes for about 3 years. I tried to design my own cheap reclining chair so I could lie back and stare at a screen for long enough to earn some money.
The other name for cfs is myalgicencephalomyelitis which means inflammation of the thoracic spine up to the brain. Really you are trying to get the body into a band that it can operate comfortably without causing inflammation to the point that you can earn a living. And being physically strong helps with that.
Exercising your arms will aggravate your thoracic spine. I guess I’m saying train for thoracic and cervical stability (strength) accepting some overtraining initially because it is really hard to judge what is overtraining when you are weak. You have to be really patient. 3 steps forward one step back. If you can only hold a kettle bell for a few seconds then don’t. Just work on swimmers stretches and banded propioception and neck and spine strengthening exercises, you will easily overdo it trust me. Try not to. Physios and exercise physiologists deal with alot of overtrained virally unlucky athletes and are probably your best source of guidance on this facet of recovery.
Sorry I misread kettle for kettle bell. But the load is irrelevant.
If you are that weak then start with fragmented swimmers stretches 1 limb at a time. I was in the same situation in 2018 but you do forget once you escape. Just do 1 rep on each limb every second day until you can do two. Or figure out the training periodicity for your body so that you can build up to 30 swimmers stretches. Then add in another exercise.
The feeling of muscular fatigue doesn’t matter - the not overtraining is the important bit.
There’s so many other things to get right also but getting physically stronger will only help. I’d talk with a sports physio first if I was in your situation.
I'm not "strong" by any means, but I wouldn't say I was weak either; the problem is that I'm not lacking the strength to lift the kettle (or my own arms, for that matter), rather that lactic acid doesn't allow me to use the strength I have for any length of time.
And after writing that I realised strength training is one of the recovery shortcuts for pacing. Smart people probably read this and think Doh, I'd be fatigued if I had that guy's problem solving ability.
There are plenty of other shortcuts.
I think this is the gist of what I'm whinging about regarding CFS treatment options.
More people would recover faster if Mindfullness wasn't the only tool available to shorten the process of pacing one's self to recovery. Being chill and treading carefully will work for less debilitated people. The really debilitated people are sensibly avoiding exertion, they aren't signing up for an underresourced olympic swim team .
Here's a simplification (that I experienced before I dealt with cfs) -
there is long series of stairways up a large hill that people run up.
You can run up the hill slowly every 5th day without it killing you, then every 4th,3rd 2nd then everyday. That process might take 4-6 months and takes grit.
Or you can strength train your legs with barbell squats once a a week for 8 weeks noticing yourself getting stronger each week and then just run up the hill.
I accept I'm a terrible athlete now so I strength train my legs with very amateurish pistol squats so I can walk up the hill without crossing over the lactate threshold.
If you are crossing the lactate threshold lifting a kettle then strength training should help. I know the exact feeling you are describing and used to deal with it. Gradual strengthening helped - with a strong emphasis on the gradual. Aim for fragmented single limb swimmers stretches. I still remember the pure exhaustion after doing 1 rep. Make sure your body has glucose before after and during any form of exertion. The steadier the glucose flow the better. Getting up and down off the floor is a form of strength training.
There's a balance between strength and endurance and I don't have the explanation off the top of my head but exercise physioloogists do.
Zone 2 exercise heals mitochondria. Zone 3 exercise stresses it and requires a recovery period. Exercise physiologists are having good success treating cfs as athletes are really just optimising their mitochondria so they can thrash it harder and longer than their competitors on race day. Exercise physiologists often work in with physio teams at sports academies at univerisities.
Dr Peter Attias stuff he is figuring out and sharing from helping wealthy intelligent people live long debilitation free lives is very useful for understanding lactate thresholds.
Just like athletes take performance enhancing drugs to reduce recovery times - so can we. There are plenty of supplements to play around with. So many people mess up their B vitamins by taking multi-vitamins but getting b vitamins in quanties your body is utilising is a low hanging fruit. Unfortunately it has no profit motive attached to it so you have to guess or work with a Complementary Medicine MD if you can afford one. A low inflammation, glucose goddess style diet with moderate cheating in the mix so you don't get food obsessed as the base helps also.
The supplement reccommendation page on www.perfecthealthdiet.com is a safe base to play around from for supplementation. If you adapt a soft version of the perfect health base diet to the glucose goddess method and gradually strength train I think you must increase the probability of escaping the fatigue trap. Some of it is mental but if you can get small wins you eventually beat the mental side back as well. Dopamine managment is a factor.
My frustration with some medical professions take is that they sometimes expect you to deal with it purely via mental resilience (which helps) without providing any tools to get any small wins which is impossible. If you think about it - an olympic athlete has a coaching team to ascend mount everest, what do we have?
The medical system treats the condition like someone's on a cave dive and provides the support encouragement, training and advice afforded Eric the eel. They are right that you can do it, panick won't help and that you do need to keep moving in some direction but until you run out of air you will be alright. The fact you can't work is irrelevant, lot's of people deal with debilitation. From the health systems perspective maybe they are right - who deserves saving vs who deserves training are different questions. There is alot of suffering out there - maybe placing the onus on the individual to figure their own path is the correct approach.
> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints.
Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests different coping techniques akin to avoidance). I was with you until "sideplank".
The physical problem is bigger than the mental problem. There is an underlying physical problem, it just isn’t understood. Because brain fog and pain are the defining symptons then emotional regulation (which is super important also ) gets overblown.
A convalescant event effectively transforms you into a really terrible athlete with shameful recovery periods.
Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.
Proprioception is important, head stability is important, not aggravating the thoracic and cervical spine when moving is important. The stronger you are the more you can achieve without getting to the point of exertion.
There is alot of emotional management necessary for sure - your brain used to work and now it doesn’t. And it hurts to move.
There is also a lot of biochemical management needed to minimise inflammation.
But without a certain level of physical strength then emotional and biochemical management alone won’t allow you to recover.
And it takes grit (which is hard in the face of hopelessness) to get that physical strength back plus a smart diet and supplementation combined with effective emotional management.
If I didn’t have follinic acid in my recovery steps I probably wouldn’t have recovered. If someone hadn’t gifted me a decent bed I probably wouldn’t have recovered. The bed was to support the thoracic spine so I could sleep.
There is a definite physical component to recovery from cfs and this is poorly researched.
> Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.
Ohhhh... this explains so much about why what are otherwise mild injuries can absolutely throw off my rhythm and disrupt my productivity. Having even a low-grade injury ties up cycles and is like a background task set to prevent going into power-save mode, because it's like a constant potential threat/alert.
When your CNS is at 0%, it's weirdly difficult to hold your spine and head straight against gravity. You start leaning on stuff, resting your head on your hand, etc.
Totally, interestingly they diagnose the illness with a tilt table in some countries.
I had an inversion table atempting to relieve my thoracic pain at the time of my diagnosis. Which was a diagnosis of exclusion. I was gutted by the chronic diagnosis.
I was lucky that the inversion table allowed me to accept that I had the condition post diagnosis because it definitely triggered fatigue after I’d rest at the tilt angles that trigger fatigue.
The awareness of the tilt test and that delayed fatigue onset were the 2 useful pieces of information I got from the cfs support group I attended 3 times. I accepted my diagnosis quickly as I’d accidentally been doing my own tilt table tests with the inversion table. I also quickly realised that regularly whinging about the condition in a support group of people who accepted that they weren’t going to recover from something that seemed treatable wouldn’t help me.
Sounds like a really bad explanation that has 0 root in physiology.
I have CFS and I had a cardiac stress test and my VO2 max is 20, despite only being 33 years old. It's literally half of what it should be for my age. That's worse than having heart failure. I have a severely impaired lactate threshold and severe exercise intolerance. The other people I know are similar. Autonomic dysfunction has roots in chronic mitochondrial dysfunction. My urine malondialdehyde levels are off the charts high. All this excessive oxidative stress and cellular respiration starts shutting down everywhere. I have been walking miles per day for a long time now trying to alleviate it and I still cannot run or do any intense exercise. Toxic insults, genetic vulnerabilities, antibiotics that induce mitochondrial dysfunction, and many other things cause these insults. I've talked with others that had their mitochondria tested via mass spectroscopy and there's loss of ATP compared to healthy controls and blocked active sites.
Our toxic environment and lifestyles and drugs are ruining everyone's physiology.
It's really depressing seeing doctors just not remember anything from their schooling and come up with really ignorant and patient-harmful perspectives on chronic disease processes ruining society in 2023.
I'm really sorry you're suffering so much with this. As a 33 year old a ME/CFS diagnosis represents such a loss. I should know as I got CFS as 32! Now after recovering myself and working with 100s of pts, ... well I have my opinions. I def think there is mitochondrial and other physiology involved so in that I agree with you. I'd just say - try some pacing, see if you can get into the mindfulness. Maybe it will help!
Also curious about this. I'd be shocked if TMJ/TMD was more than incidentally psychological. Mine is definitely a mix of genetics (thanks Dad!) and inflammatory. When I started Humira for unrelated reasons, the painful aspects cleared right up... although as I type this comment I just realized the recent resurgence in pain might have to do with how Humira's been less effective for me lately :P
Yes so - I have noticed my patients will often get surprising benefit from some random medication, dietary change, etc. But usually, unless they deal with the underlying emotional dynamic of avoidance/push-through, etc, the improvement will not be resilient. Ie the symptoms return after a while...
What of the fact that my father and I both get painless clicking when we open our jaws too wide? Unless I'm having an arthritis flare, it doesn't hurt at all, but every dentist I've ever seen has pointed it out with curiosity. That certainly seems like a mechanical issue.
My immediate reaction here is that casting (my) TMJ pain as a matter of emotional avoidance feels a tad dismissive, tbh. Particularly when the pain comes in tandem with flare-ups of other systemic inflammatory issues... unless ankylosing spondylitis is an emotional problem as well :)
Probably, sure. Which if anything is all the more reason I think it's unhelpful to jump right to "my guess it's an emotional regulation problem" before you've ruled out physical causes like chronic enthesitis.
Hi Lindsay, please contact me. I have been dealing with health issues since 2019 and what you say about dissassociatiom, tmj, and fatigue/inflammation seems extremely relevant to me. My symptoms seem caused/exacerbated to the extreme by pornography and computer games. I have a long history of dissasociation as do my parents. I would like to discuss this with you as nobody else believes or understands what I have noticed concerning the connection between my physical and psychological symptoms. My email is hydrok9@gmail.com. I tried to message you on hn but wasn't able to. Thanks.
Anecdotally, my ex-wife suffered from CFS. She’d get bouts whenever she needed to do something she didn’t particularly want to do, to the point of predictability. She’d lost all ability to challenge her response to these kinds of situations.
Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome.
I finally got a PoTS diagnosis last year (along with ASD and ADHD), at 39.
Lying down for 5 minutes then standing up for 10 - if the pulse gets and remains high but with a low blood pressure, that's the main diagnostic criteria.
Symptoms include head rushes, gray outs, brain fog, fainting in like 8%, fatigue, temprature intolerance to hot and cold, cold exteremities, bladder issues e.g. needing to pee more than average ("PoTS bladder"), palpitations as in feeling your pulse (not aythmia) and maybe even rocking/stimming to it (I got great muscle control from trying to cover it up for so long, great for dancing).
Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks.
Apparently there are other drugs, but you will be explaining it to most medical folk you meet. I'm waiting for a cardio referral in the UK, though ultimatly it's an autonomic system issue so I would have thought neurology, but we will live and learn.
Possibly maybe I had EDS; zebras keep saying I have such smooth skin and move in a hypermobile way, though I don't pass the standard over-stretch tests, but praying upward behind my back is no problem what-so-ever.
I've just realised I might have "amplified musculoskeletal pain syndrome" also, which is something I had been planning bringing up. I didn't know how to factor the chronic "unable to ever relax" pain underlying everything in.
"Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g"
Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust from cleaning/being in a space that I haven't had the head to keep properly clean most of the time (ASD/PDA), pollen, and most both cats and dogs :( Some apples can make my mouth tingle in pain for hours.
My colds used to always go down to become a chest infection, like 15-+10 years ago. I've the steroid inhaler I've been more consistently taking, again more recently.
I don't smoke anymore, but I vape weed (Dynavap).
I can have an asthma attack after running 40/50m for the bus, but I can dance sober for several hours on end, so IDK.
Edit: oh yeah, I just had nasal septoplasty and turbinate reduction the other weekend, and I get the anti-scar stints out this coming Sunday, which will be fun..!
I saw a hypothesis (which is older than I thought) about CFS being related to the vagus nerve. At the time I read it, it made sense to me. Basically, an residual infection close to the vagus nerve signals the brain that the body is fighting a serious infection.
Itaconate Shunt Hypothesis is currently being focused on by Robert Phair and Christopher Armstrong in collaboration with Professor Ron Davis's team at Stanford.
We have all experienced our Itaconate Shunt pathway being switched on at some point because it is the tiredness feeling of coming down with a flu or bug.
The body switches over to amino acids for fuel instead of fat and sugars.
You run out of amino acids to burn, quickly, and feel the need to lay down and rest.
You cancel that marathon you were about to run, and you even have to give up on walking to the shop for groceries.
A metabolic trap could mean people with Chronic Fatigue Syndromes never switch the Itaconate Shunt mechanism off.
Or enough cells in their body stay shunted for many years, reducing their daily physical activity and mental concentration levels well below normal functional expectations.
Largely unrelated, but the thing which leaves me feeling most wiped-out is playing (modern) computer games. I've cut them out completely, as they have no positive benefits and leave me listless and unmotivated.
I wonder if it's because they're so stimulating with minimal physical effort. So, after playing, you hit the real world where achieving anything useful takes mental or physical energy and the contrast is significant.
Your comment caused me to compare gaming (which I haven't done since I was 16) to doomscrolling. It's a dissociative activity, requiring near zero physical presence or mindfulness. Passive entertainment which I do to take a timeout from the world and avoid the frustration of doing things I don't want to do, like work. But it always leaves me groggy and only begets more behavior of the same type.
Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.
Serious question: Why would this be any different than reading a book?
Is the implied suggestion, that, anything that is not "real" is bad? Does watching a tv show, movie or youtube video, reading a novel, or listening to podcasts of people discussing things (either fictional or "real world") have the same supposed impact? What about listening to a co-worker tell me about their weekend?
Good question - one of the soft clinical signs of a person with css I’ve noticed: they come to clinic w a thick fantasy novel in hand.
So imo every activity can facilitate dissociation to a different degree depending on the activity and individual. Gaming, gambling, stress eating, and actual substance use out on one end of the spectrum. Hiking, gardening in the middle. And mindfulness body scans on the other end.
The DOTA genre is interesting. They don't stress me out that much. I'm more bewildered by the ever-growing rooster of heroes/champions and what skills they have and what items they could have at the tenth minute or something. Then I easily just end up letting the other team farm experience over my dead body. :p
So did the cut out have any positive effects on your mental or physical health? Do you suffer from symptoms like CFS or BFS or other something that might potentially be triggered by stress?
Yes - cutting out games resolves my apathy and lack of energy. I probably do have stress and tiredness caused by high cortisol from work, but concentrating on physical exercise as a remedy seems to be the most effective way of coping. Gaming compounds it, as does consumption of social media, particularly long-form video like YouTube.
I quit playing video games years ago when I realized that they were more like an unpaid part-time job than something that I actually enjoyed. Spending hours to solve the puzzle or complete the mission or get to the next level, with nothing to show for it at the end.
Same here. I played Last of Us 2 when it came out and didn’t realize how big of a toll it took on me. It put me on edge and left me exhausted. I don’t play video games anymore either, except for some laid back iOS games.
Occasionally I think the medical world has a communication problem.
In 1989 I had some blood work done which checked for Epstein-Barr (it wasn't present) for reasons that made sense at the time. Then I got ME/CFS a few weeks later, and blood work showed
that it was present this time.
That's not a slam-dunk for Epstein-Barr as a cause, of course, but I thought it was interesting enough to have the data that I talked to my immunologist about cowriting a paper on it.
She demurred, saying that quite a few such papers (where patients by chance had had before-and-after tests) had been published and there wasn't any value in adding another one, since it was pretty common to see the same pattern of Epstein-Barr virus not being there beforehand, and then appearing after in blood work after the onset of symptoms.
Fast forward to 2023 and now there's a paper saying that ME/CFS might have a post-viral infection origin.
People have been saying this about post-viral sequelae and EBV and CFS for a long time, but the evidence is just not there.
EBV is incredibly common, it is not surprising that many who have had ME/CFS would have it.
The medical world does not know how to communicate about problems that are likely coproductive of psychological and physical causes, especially in a post-AIDS patient advocacy world, simply because patients do not like hearing that there is anything psychological involved at all.
It's looking like <some stressful assault on the body's immune system> is a necessary but not sufficient condition to developing CFS. Further, there are many events which can serve as triggers.
But in the cases where the other prerequisite conditions are met, EBV is usually the causal trigger.
Can chronic fatigue type syndrome that only effects you mentally, not physically? I have zero energy to do things that take mental energy unless I take ADD meds and even then it is a struggle. But doing things physically I have no problems. Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city.
> Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city.
Sounds like textbook ADHD. Walking a mile is a straightforward task with a known outcome and predictable risk/reward scheme. Figuring out bus ticketing is a novel challenge requiring a certain amount of executive thinking, planning ahead, holding multiple things in working memory, all things which can feel aversive to the ADHD brain.
I did not get covid but did get the vaccines + 2 boosters. I have been feeling tired etc for the last 6+ months turns out because of the work at home etc and my lifestyle I was not getting enough sunlight and had very low vitamin D levels. I am not white so need to spend longer time in sunlight according to my doctor.
Unless you've been getting weekly tests you can't be sure that you haven't been infected with SARS-CoV-2. Many infections are asymptomatic. You might not have noticed at the time.
unlikely you need to meet people to get infected I work in very small firm of 6-7 people and live in a city where the spread was effectively controlled and rapidly vaccinated unlike most countries though it is not impossible. I am not a very social person hence the lack of sunlight.
While supplements can help, nothing been sun on your skin for vitamin D and also for other help benefits - in moderation of course.
If someone's doctor has told them to get outside more and they find it is helping, I would not personally recommend someone stays in and just take supplements as an alternative.
Too many doctors are quick to look at a person and their lifestyle and just say "welp, get outside, get more active, lose some weight, get some sun"
There are cases where supplements or medication are completely valid.
How many (primarily women, but some men), have hypothyrodism. I know of at least 3 other women in my life who, instead of the doctor listening to their symptoms, just kept recommending "eat better, exercise more, lose weight".
No. There was a serious problem. And a problem which literally makes those three things almost impossible. And can be detected with a simple blood draw.
One of my friends finally went to an urgent care, they did the test, prescribed levo with a "follow up with her doctor", and the doctor wouldn't renew the prescription because she was just "inactive and retaining water". Of course at this point she switched doctors to one that wasn't a misogynist.
Same thing with vitamin D. If you live above 37 degrees of latitude, chances are you are taking vitamin D most of the year because "sun on your skin" just ain't happening.
Not sure if you miss read my post, but to reiterate 'if sunlight is working, and the person is feeling better, then supplements are not likely to be needed' - I never said don't use supplements, or that they have no use.
Add to that, avoid multivitamins if you are on medications. Turns out some vitamins, specifically Vitamin C, may prevent some medications to be absorb in the bloodstream.
Why would that be misleading? This seems to be just an attempt to better understand (some of the / potential) causes that unknown condition. Perhaps it doesn't help to diagnose it, as there might not be any direct evidence left in the body to point at the original cause, but in the longer term it certainly helps if you know where to look.
It's just that if CFS doesn't point to something real, then that non-real, non-specific thing, having an origin doesn't really make sense.
But if it is actually real (and specific), as indicated by another commenter, the origin seems fine. Still seems like there's mixed views in medical community though.
MD here - I'd disagree. Although I've heard the same take from many other phsyicisans! Anyone who has worked with the condition (I've had 100s of CFSers by now) knows it's a pretty distinct syndrome. The CFS push-crash cycle especially is quite distinct.
No, in that for people who are fully healthy, they don't have periods of avoiding exertion due to fatigue, which precedes the push in the push-crash cycle. People with well-balanced health and energy can certainly over-exert themselves, but it's not a common cyclical pattern for them characterized by the push happening when some recovery from fatigue occurs.
I've battled with CFS/ME multiple times in my life, each triggered by different ailments. First, it was Epstein-Barr at the end of my tenth grade, leading to two solid years of chronic CFS. Then, at 31, Chicken Pox knocked me out for roughly 18 to 24 months. More recently, from January to August 2021, I experienced "Long Covid," and this July, a bout with RSV left me grappling with CFS once again.
My symptoms include daytime fatigue, necessitating frequent 40 to 120 minute naps. The brain fog is especially frustrating, causing confusion and lack of focus.
This recurring condition has undoubtedly impacted my professional trajectory. Interestingly, the only regimen offering relief has been consuming two crushed garlic cloves daily, which I started two weeks ago. I have hypotheses about why this is effective — possibly related to garlic's blood-thinning properties, but no concrete clinical evidence to back it up.
>daytime fatigue, necessitating frequent 40 to 120 minute naps
Few years ago I started to feel really sleepy, even fall asleep during daytime, especially at winter. Turned out to be vitamin D. Taking it helped tremendously. Measured recently - normal, but still slightly low. Increased dose.
So the advice for everyone is: do full blood panel, including vitamin D in particular.
Honestly, it was the worst 6 weeks of my life. I would not wish it on my worst enemy. Three weeks of incubation, two weeks of breakouts and a week of recovery. My employer terminated my employment two weeks after that. In retrospect, I should have pursued legal action.
> My employer terminated my employment two weeks after that. In retrospect, I should have pursued legal action.
I assume you're from the USA?
I really hear the high-life stories with some envy and respect but oh boy is there another side of the coin...
In any case, I'm sorry to hear that, and hope that it becomes an insignificant unfortunate moment not even worth mentioning in your otherwise happy life story.
I mean, even here in Germany you would probably get fired for being ill for so long unless you had already passed your 1 year probation. My wife had a boss who used to fire people for absolutely anything
It's true that you can be fired during the probationary period, for any reason including "excessive" sick leave. But the probationary period is limited to six months, by law.
Ah. Then she was probably in a civil service position (teacher, police, etc) for which for some reason there are entirely different rules. For employees in the private sector, the limit is 6 months: https://www.gesetze-im-internet.de/bgb/__622.html
Yeah I’m an Aussie and we have fairly robust workplace laws here. For a long time I thought of life as “before chicken pox” and “after chicken pox”. Pretty huge effect on my life particularly the CFS.
Of course I'm joking, but also wondering if there isn't a fragmented memory of a folk remedy buried in that bit of lore, alongside the "people with <disease> hated the smell" explanations.
Look I think so, curious to know if the blood thinning properties of alician would enable to body to better repair itself, improve important metabolic processes?
I forgot to add a potentially relevant detail: garlic contains a compound called allicin, which has blood-thinning properties akin to aspirin. Intrigued by this similarity, I decided to run an N=1 experiment. I bought some aspirin from the pharmacy and tried it out. The results were astonishing — almost euphoric — and I felt like a new person.
The answer is yes, I think it is better. Personally I’m just not prepared to take Aspirin for more than a few days. So garlic for me. Also I think that anyone who is already on blood thinning medication should consult their doctor.
My partner eats raw garlic every morning and feels great. I definitely think there's something to it, so much so that I'll probably start. It seems like the type of thing that has almost no real negative side effects, so worst case my breath just smells in the morning.
I should also mention, and I hope others notice this thread too, that I have fermented about 5 bulbs of garlic into 1kg of raw organic honey. It takes about 10 days or so to ferment into a pleasant sweet smelling garlic odour. The garlic is much easier to eat and I don’t effect the typical garlic odour. I like to crush each clove with the heel of my palm using a knife to open it up a bit and release its juices. Then place the few dozen bulbs into a large mason jar and cover with raw unpasteurised honey. It will ferment for a few weeks, so release the pressure each day. I suggest turning the jar over and sitting it on its lid then base each morning and evening because the garlic on top tends to float up. The result is a sweet and subtle garlic smell that arises from the jar when opened. Apparently a little garlic honey drizzled on ricotta cheese smeared on sourdough toast is amazing… I’ve yet to try it but will soon!
A friend of mine recommended it over a month ago, and I marked him down as “the garlic crowd”. But after some careful reflection I decided to give it try. Glad I did!
I feel clear headed, no longer require naps in the day time and just seem to have higher energy levels. I got out this weekend and completed some long overdue garden maintenance.
Just Google "garlic blood thinner"; it's not pseudoscience, it's a very well documented effect. In fact it's not advisable to eat a lot of garlic if you have low blood pressure or bleeding disorder.
> Would ginger have a similar effect? As I understand it, they share many properties.
recovering cfs sufferer here, and n=1 but for me, yes it seems so. from my experience garlic is definitely the more potent one (personally i prefer ginger)
> Where can I find out more about the garlic that isn't a homeopathic or alternative medicine site?
difficult, but fwiw in japan we have something here called "gatlic injection" which you can literaly just go to a medical clinic and get
some of the uses are for tiredness, hangover, skincare etc [1]
That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc.
Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it remained for 3 years until I convinced a doctor to take that delta seriously.
I’m better on TRT now, but I’d say I’m at about a solid 65% of my former self. Joint and muscle pain is gone, but I don’t have the same drive and still struggle with anhedonia. Would love to try a cocktail of things — almost anything really — to feel more alive, but I don’t want to do antidepressants, and I don’t want to be branded “drug seeking”, so I just try to get by for now.
If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID). So the question is how to avoid it causing CFS, or how to get the body out of the CFS state.
> If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID)
It's not futile. Install proper HEPA air filters in trains and other public transit, provide actual ventilation in public buildings, mandate antiseptic (e.g. part copper) door handles, and especially: provide actual sick leave at work and mandate employers to send sick employees home (and while we're at it, the same for kindergartens and schools)... that would drastically cut down on all kinds of infectious diseases without forcing anyone to wear masks.
I hope that mRNA technology will soon present a viable EBV vaccine candidate. EBV is implicated in a lot of immune-system-related diseases, but it's so incredibly infectious that it's impossible to get rid of.
There are lots of articles and probably studies that seem to find it a lot. I agree it's pretty likely it's causing some of it at least. Someone in my family has cfs, unrelated to covid afawct, but no one has figured out any cause.
Epstein Barr Virus and CFS have been linked I believe. The Epstein Barr virus can trigger false positives for mononucleosis and has been shown in some cases to linger and cause chronic symptoms for years.
Hehe, you sound like almost every doctor I’ve had… despite having at least one objective metric to show that something was wrong immediately after contracting EBV: Testosterone and Estradiol dropped by (and remained at) about 65%. Took three years of joint pain (common low estrogen side effect, what a surprise), muscle soreness/weakness, and the death of a formerly lively sex drive (2 months into a fantastic relationship — maybe I was depressed by having it too good?), etc — before I said “screw it, I’ll go to a TRT clinic”.
I’m still a far cry from my former self, but everyone around me has seen the positive difference that unfucking (at least part of) my hormones has made. But hey, maybe that’s all psychosomatic, including the swollen lymph nodes that for a year were visibly protruding out.
The reason folks are unhappy with your take is that many people are personally adversely affected by doctors and others ignoring their physical symptoms. It's worth looking up Stephanie Aston of New Zealand, who just died at age 33; she apparently had Ehlers-Danlos syndrome. Several doctors told her she was faking her juvenile arthritis etc.
People like accusing others of faking their symptoms because it allows the accuser to avoid moral injury from doing nothing to help or even just the discomfort of witnessing the suffering of others with empathy.
Yes, it it not a good moment politically to discuss the psychological correlates/causes of disease. Probably hasn't been since the AIDS crisis, to be honest.
In future decades we will hopefully be more mature around these subjects.
e: To be clear, the comment about AIDS was about the era of patient advocacy that it engendered.
It's super weird to me to claim CFS is caused by psychological issues. Imagine all the people who were whining about COVID shutdowns and isolating for 14 days or whatever, with people frothing at the mouth about how depressing and how stunted their children are for not going to school. Okay, wow, looks like CFS forces you to do all that isolating/missing school/etc, maybe that causes mental illness the way it caused that for the broader population...
> > It's worth looking up Stephanie Aston of New Zealand, who just died at age 33; she apparently had Ehlers-Danlos syndrome. Several doctors told her she was faking her juvenile arthritis etc.
You don't die from EDS, unless it's the vascular type, and even then it's not the EDS but the catastrophic rupture of an artery (abdomen or aortic which has weak collagen due to EDS) that causes the death.
With a prevalence of 1 in 50,000-200,000 you can't fault the doctors for not seeing it or just branding it as very unlikely, of course the accusation of faking an illness should not be tolerated.
Depression may not be psychosomatic. It may be somatopsychic.
Some physical ailments have psychological and emotional side effects. Depression may be rooted in physical ailments negatively impacting mood and brain function.
I don't even understand the distinction you are trying to make. Your mind is part of your physical body. If you are depressed then it is constitutively a physical ailment.
Are people just this bought into mind-body dualism like two centuries later?
It's the difference between a woman with a worm in her head experiencing depression and brain fog (because, y'know, a parasitic worm was in her head) and claiming her depression had caused a parastic worm to appear in her head
Depression is physical ailment but it can have either an external cause (a death, loss of job) and an internal/physical ailment (a virus or other pathogen) which causes depression.
It could easily be both, though there certainly is research indicating depression causes physical pain. However since many of these studies only found correlations it's only clear that they come together and not whether one causes the other. One way of isolating that issue would be to determine the rates of depression in people with unambiguously diagnosable chronic pain disorders due to a root physical cause vs both the population and the population of those who report chronic pain.
I had Long Covid for about six months, and it does create similar symptoms as what we know as depression and anxiety. But that's just it. Depression is not really the cause of symptoms, it IS the symptom, or the effect. CBT is not going to fix this problem if the cause is physical in nature. So you can't say "effects of depression" because depression is the effect. Sadly many medical professionals make this mistake.
I didn't say all or even a majority were exaggerating symptoms, I simply said that many were. Part of my justification was a number of studies which have found psychological distress over catching COVID as a strong predictor of long Covid:
That isn't necessarily evidence of psychosomatic cause.
I have a genetic disorder that was diagnosed late in life but I knew well before I had a proper diagnosis that I had frail health. I'm cautious and worry about things that others don't worry about because history proves it's a real problem for me, more than average.
Thank you for your concern. When I was 17, I developed acute neuropathy after covid which was diagnosed via a biopsy. It manifested as orthostatic intolerance caused by insufficient blood flow to my brain. I have been bedridden for around two years now. I was certainly distressed when I got COVID, largely because of a burning pain emanating from my extremities. My uncle died from autoimmune scleroderma. He also developed Lymphoma, whose pathology we believe began with Epstein-Barr.
The prevailing hypothesis is a cross reactive species of auto antibodies to the Angiotensin II Type 1 receptor. I unfortunately have not been able to receive a test for this antibody; however, I did test positive for Alpha and Beta adrenergic autoantibodies along with Muscarinic M2 and M4 autoantibodies targeting the hippocampus of my brain. I managed a borderline positive titer for anti TSHDS antibodies, which are correlated with small fiber neuropathy.
Normally, I do not comment, and I specifically made an account to type this message while holding a laptop over my head, a difficult task as you can imagine. The medical community is moving too slow in response to post Covid syndromes. I and all the other people affected with neurologic complications would be most appreciative if you all helped review literature on the immune system. It is an awful lot like debugging code! Right now, I read a section about Janus Kinase and TNF alpha. I believe a medication like baracitinib would do a wonderful job mediating mthe inflammatory response. ICU covid patients typically died from TNF alpha, Interleukin 6, and Cysteinyl Leukotriene 1 mediated by 5 lipoxygenase synthesis from arachidonic acid. All of these biomarkers are elevated in long covid patients. Lastly, covid can actually cause a reactivation of Epstein-Barr and HSV1. Telemisartan is an Angiotensin receptor blocker that can downregulate ACE2 levels in the body and demonstrates a prophylactic effect against covid.
If you read this far, I am deeply appreciative. More so than monetary donations, I would be grateful if could spread the message about this disorder.
I dunno, the most people I know with psychological distress over catching covid are people who would be greatest at risk of long covid. People with a history of weak hearts or lungs, athsmatics, people who have existing post-viral infection type diseases, people who are too poor to afford to take off work...
Be very careful in judging if someone is faking CFS. You often only see someone when they are on a (social induced) high. Not when the crash comes 24h or even days later. The added suffering from not having a support network, or worse being accused of faking is just unreal.
It was more what looks to me like psychopathic tendencies:
Eventually she was caught in all kinds of lies, because she lied so much about so many other things as well that once her sisters started talking with each others they realized it quickly.
As far as I understand she had been telling different stories to each of them and to her parents.
It's not a offensive to portray objective reality. People can and often do overreact and fake symptoms. This is just how it is. Why would that offend anyone?
The alternative to this is burying your head in the sand and saying we should take everyone at their word. This would result in a WORSE outcome for people that actually have the issues you're so worried about because the data would be skewed.
Maybe you ought to do the thinking, instead of emotionally reacting?
Let's do some thinking: collectively, we don't know enough about CFS or the human brain to make definitive statements like 'a large number are faking it.' You've confused your emotions for logic.
Nowhere does my comment state that no one is faking. You've simply left reality in favor of a fantasy.
This is what I said:
> collectively, we don't know enough about CFS or the human brain to make definitive statements like 'a large number are faking it.'
This is what it means:
We don't know enough to quantify the ratio of fakers.
'A large number are faking it' is a type of quantification: a ratio. In this case, a descriptive ratio that uses the words "large number" instead of literal numbers.
Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it.
https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa...
Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other crew members also have Parkinsons: https://en.wikipedia.org/wiki/Leo_and_Me
https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiol...
Many people who are suffering with Long Covid CFS are more obvious though. The significant event from their pre/post covid life was a covid infection.
It is beyond me how people can deny post viral syndromes. Just about every major virus has documented literature of people suffering. Long covid is putting a flashlight on a real problem. For those more interested in the journey, see https://www.youtube.com/watch?v=VYNMzaZk_iU for a great overview.