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.
