You couldn't have picked a worse example than CFS to include in that list - a syndrome that for decades was dismissed as psychosomatic, and that many people (read: most notably medical professionals) today still dismiss as such, despite the evidence that no, actually there's some kind of physical dysregulation going on (probably triggered in many cases by a viral infection.)
silisili|4 years ago
Two or so years later I got a long term girlfriend, who told me I quit breathing in my sleep and gasped for air. Obviously, this is something you don't even think of yourself.
I didn't go on CPAP, but did see an ENT who did a couple sinus surgeries and put me on steroids for chronic sinus inflammation. That treatment changed my whole life. The fatigue disappeared immediately.
ethbr0|4 years ago
I was amazed no one had mentioned it to her before, as she had quite lengthy pauses and then gasps after them, all night! Scared the hell out of me, until I finally said something, and she went for a sleep study.
AuryGlenz|4 years ago
I kept telling them the only damned thing I was depressed about was how tired I was.
mecha_ghidorah|4 years ago
I have been using CPAP for years but my case is weird: I was diagnosed in my early 20s, I was not and am not overweight, I only drink socially (so less than once per week), I don't and have never smoked, etc.
CPAP has massively improved my life, I'm feeling much better, but honestly my sleep specialist was kind of shit when it came to answering questions. When I asked about surgeries and the like he just said "No, we can't do that" and I couldn't get him to elaborate on why.
I never pushed it because I used to be too poor and I was too exhausted to bother with screwing with my treatment but I'm reconsidering that. Don't worry I won't take anything you say as medical advice or anything, I just... I dunno I guess I'm curious to hear about the experiences of someone who had a different treatment avenue in some depth. It might make me feel for comfortable/proactive about seeking a second opinion and pushing for specific answers
cpncrunch|4 years ago
>actually there's some kind of physical dysregulation going on
The only replicated findings are with the HPA axis (the stress system). There are some studies pointing towards impaired mitochondrial respiration due to reduction in the link step between pyruvate and the TCA cycle. However, if you take a quick look on google scholar, you'll see that that link step is downregulated by the glucocorticoid receptor (the stress system again), so that would seem to be the likely cause.
There are also some studies showing reduced work capacity after repeat CPET. But again, the HPA axis influences CPET performance, so that is a possibility there as well.
The point is: just because there is "physical dysregulation" doesn't mean it can't be caused by stress or psychology. That is literally how the brain works (if it didn't, we wouldn't be alive and conscious). Psychology is intrinsically linked to the immune system, HPA axis, autonomic nervous system. Psychological stress has been repeatedly shown to cause neuroinflammation, cyyokine release, impairment of the parasympaethetic nervous system, to name a few.
texasbigdata|4 years ago
Graduated exercise (run 1 mile today, 1+X tomorrow) and talk therapy (CBT, etc) have been contra indicated for a few years now and the former can actually make the condition worse.
For something first diagnosed in 1958 (but observed since 1889/1880/1917, and also medieval times) to have absolutely no progress or even a unifying theory of how it works while it’s believed to impact up to a million Americans is absolutely baffling.
ME/CF is a total beast and monster of a disease. That’s why the suicide rates are so high.
[1] https://www.mayoclinicproceedings.org/article/S0025-6196(21)...
tomByrer|4 years ago
+ Bruce Lipton's "Cell membranes are brains" theory. https://youtu.be/3tZ513NeSIc?list=PL2S-_LNXy9Vx24_o9zSTF6MAD...
Also noteworthy: one of the top co-morbidities for COVID-19 is anxiety. https://youtu.be/iY98nuD3Bco?list=PL2S-_LNXy9Vx24_o9zSTF6MAD...
patmcc|4 years ago
But at the same time, I know people with CFS who refuse treatment like CBT, antidepressants, counselling, getting more regular exercise, on the grounds that it must be a viral/bacterial infection, or genetic, or autoimmune. Those things are all possible and should be researched - but so should the idea that it's partly or largely a mental illness. And there may well be physical dysregulation - that can be caused by the brain in many ways.
texasbigdata|4 years ago
If you read the book Why Zebras Get Ulcers by Sapolski there’s this story about the African farmer who has his cow die, and can no longer farm or support his family after. Sapolski says in America you’d give antidepressants, in Africa you’d just chip in and buy a new cow.
No offense, and as respectfully as possible while getting the point across, but you’re being a dick to your friend. These people bounce between doctors for years [5] because there’s no FDA approved diagnostic test, with a hyper complex disease that’s literally debilitating to them do you really think you can drive by diagnose and they just missed completely obvious and first pass treatment options? Your comment is the “I could build it in a weekend” response to ShowHN.
Edit: note, I believe in somatic experiencing of symptoms, as described in the link to this threads article. For example there’s quite a few stories in the biography of Chairman Mao [6]of high status officials suffering “neurotic crises” and requiring bed bound recuperation, arguably because of the repressive environment they lived in. But ME/CF is completely different.
1. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-car...
2. https://www.mayoclinicproceedings.org/article/S0025-6196(21)...
3. See dots in bottom left quadrant for Paxil/Zoloft/etc etc. https://www.researchgate.net/figure/CureTogethers-page-on-ch...
4. https://me-pedia.org/wiki/Graded_exercise_therapy quote: “ Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time. It is a treatment that was offered to ME/CFS patients in the UK by the National Health Service (NHS) as specified in the NICE guidelines from 2007-2021, but the recommendation was removed by the 2021 NICE guidelines because of high rates of harm.”
5. https://www.omf.ngo/what-is-mecfs/ quote “ People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.”
6. https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/...
ianai|4 years ago