Chronic Fatigue Syndrome

*edited spelling

I live with an autoimmune disease that went undiagnosed for nearly 8 years (I was about 14 when the muscle and joint pain began, some short amount of time after a nasty flu that I personally wasn't sure I'd get through). I had no idea what was wrong but I knew it had to be something, despite what everyone else was trying to tell me. Doctor after doctor would come up with the wrong answer - growing pains ("they'll go away on their own in a few months/years"), shin splints, faking it for drugs (you know, while my mom had to tie her teenage son's shoes because he was physically incapable of bending at the knees through swelling and pain to tie them - eventually switching to flip-flops, even through Kentucky winters), overexertion, various vitamin deficiencies (which they didn't actually test for, just said "take a multivitamin")... Some didn't even bother attempting to come up with a solution, instead just offering opiates or steroids to get rid of me - it was never a surprise to me that there would be an opiate crisis in this country with how I was treated.

It wasn't until after I was taking borderline poisonous amounts of naproxen and suffering horrible gastric symptoms that a clinic doctor finally realized that I wasn't faking it, and nobody in all of those years ran even the simplest of blood tests - an Antinuclear Antibody test. It came back off-the-chart positive, all the way through the highest dilution the lab could test (something like a 1:2000 dilution, with a speckled pattern), and that was what it took to be sent on to a rheumatologist and an enormous battery of tests to eventually get the diagnosis and treatment I needed. Autoimmune diseases are rare in men - my particular disease, Mixed Connective Tissue Disease, is often noted as about 16:1 favored towards women. Autoimmune diseases are rare in the population as a whole, and overlap syndromes are the hardest to diagnose. Multiplicatively speaking, the doctors weren't wrong to rule it out at first - my case is somewhere between 0.5-1 in a million. But by failing to do even the simplest blood test for so long, I suffered various forms and levels of agony, needlessly.

Syndrome refers to a set of symptoms, whereas disease is both a definite pathological process plus a set of symptoms caused by it.

Ok, with that out of the way, the answer to your question is yes and no. Some folks emphasize the comorbidity of ME/CFS with depression to try and establish ME/CFS as a psychogenic illness. Some cases of CFS improve with the introduction SSRIs. Which further embeds this belief. But its entirely possible that the depression is a result of the day-to-day suffering. And the improvement reported with SSRIs isn't just a result of the sufferer's generally improved disposition.

The main difficulty with CFS is that it is currently a bucket diagnosis. So, you end with people in that bucket that have other diseases. For example, there are probably a good number of people in the CFS bucket that have an autoimmune disorder like Rheumatoid Arthritis or Spondylopathies because the mechanisms of diagnoses for these are somewhat unreliable and the effects of treatment are purely subjective if blood tests are consistently normal.

Without some differentiator, it's really difficult to study the condition with confidence. Any effect or symptom sampling will be diluted if our bucket has multiple diseases in it. It's because of this that I think sufferers should resist the temptation to pitch their tent around the CFS flag. But I do understand the yearning to have a name by which to call your affliction.

http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold...

Unfortunately, research into this disease is hugely underfunded relative to its societal impact. Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions. One of the more promising avenues currently is the metabolic trap hypothesis:

https://www.healthrising.org/blog/2018/10/18/the-metabolic-t...

I've suffered from CFS for 17 years, and spent 13 of those looking for a psychological solution, since all my blood tests were fine. Finally accepting the physical nature of my condition has led me to pacing my exertions so as to minimize my symptoms, which is a huge improvement. I would be completely willing to accept a psychological cure today if it actually worked. The best biopsychosocial research is the PACE trial into CBT and graded exercise therapy, which has been highly controversial in its methodology, but even taken at face value, has shown only marginal improvements, and certainly no objective end to disabling symptoms for any significant number of sufferers. (I'll let you look that one up since most sources are highly biased either pro or con.) I myself have tried both CBT and GET multiple times with no improvement in my condition.

Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders?

There seems to be a lot more evidence supporting CFS as an autoimmunity than any other avenue for explanation. It appears to be comorbid with numerous kinds of poor immune function, and often occurs after viral infections, frequently Epstein-Barr (so much so that one of its possible incarnations was even called "Post-Viral Fatigue Syndrome"). And like most autoimmune diseases, it favors diagnosis in women.

As one paper puts it as clearly as possible: "The continuing debate as to whether myalgic encephalomyelitis or postviral syndrome is predominandy organic or psychological is unhelpful." And that was in 1990; we're even more clear that it has its roots in biology now. The medical community is at a consensus that there's an organic cause, they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is. And that's not surprising - rheumatology in the context of autoimmunity is one of the youngest branches of medicine and our understanding of autoimmunity is very much in its infancy. Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49.

Frankly, at this point, with all of the collected evidence, over 9000 different scientific papers and three world-recognized medical agencies (the CDC, the NIH and the Institute of Medicine) in agreement that it's biological, suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting. Maybe go educate yourself on the topic before lobbing such accusations?

In short, given the same exercise test two days in a row, normal people behave the same (slightly better even) but CFS patients degrade substantially.

A variety of other tests such as tilt table tests, Cardio Pulmonary Exercise Tests (CPET) and Advanced Invasive CPET are also able to diagnose physical symptoms, and sometimes even treatable sub-sets of the condition.

https://solvecfs.org/deciphering-post-exertional-malaise/