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.
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.
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).
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.
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.
> 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".
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.
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.
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...
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)
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.
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.
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.
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!
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.
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.
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.
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!
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.
> 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".
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
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?
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.
Readit News
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.
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.
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.
Dead Comment
Post viral sequela
sequela
noun MEDICINE plural noun: sequelae
a condition which is the consequence of a previous disease or injury. "the long-term sequelae of infection"
Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes"
I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.
* 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.
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).
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.
It's like denying someone has a broken arm and gets ridiculed for not wanting to play tennis.
https://www.nature.com/articles/s41366-021-00805-6
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."
> 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.
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.
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?
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".
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report...
[2] https://www.medrxiv.org/content/10.1101/2021.10.27.21265575v...
[3] https://web.archive.org/web/20170809125253id_/http://enterov...
[4] https://linkinghub.elsevier.com/retrieve/pii/S13866532067000...
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.
Psychosomatic exists between these two, which I think is what they're describing.
Deleted Comment
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.
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 don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself.
As someone who used to be on the track to academia, this is something that more people should do.
Most published research is false, and even most of the correct stuff is useless.
I'd go so far as to say any research that hasn't directly lead to at least a physical demo being produced can be safely ignored.
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.
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.
Rhetoric like yours is why most chronically ill people suffer for years and decades before getting any kind of diagnosis or treatment at all.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report...
ME/CFS is probably one of the conditions most difficult to discuss in a dispassionate way.
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.
[1]: https://me-pedia.org/wiki/Central_sensitization
[2]: https://www.youtube.com/watch?v=7inKF32vtl8
[3]: https://remissionbiome.org
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.
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.
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.
- 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
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?
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?
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.
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.
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".
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/
https://pubmed.ncbi.nlm.nih.gov/23825301/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/
https://www.sciencedaily.com/releases/2018/10/181001101943.h...
EDIT: Ah, just saw the other reply. Strange.
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.
https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard...
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.
That's a lot of salt. Do you also get a lot of respiratory infections?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65
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..!
https://pubmed.ncbi.nlm.nih.gov/23790471/
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.
Itaconate Shunt Hypothesis (PART 1) https://youtu.be/RiVDNhg4l48?t=1816
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.
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?
How do we define a disassociative activity?
Warcraft 3 was similarly stressful.
The RTS I play now is Age of Empires 2 DE. And only campaigns. And it's not any more stressful than other games for me.
Hopefully you at least enjoyed playing them?
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.
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.
But in the cases where the other prerequisite conditions are met, EBV is usually the causal trigger.
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.