[giantDinosaur]

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]

Interestingly...well to me, at least, I went to the doctor for being constantly tired when I was younger. The doctor asked how many friends I had, I said oh a few, then diagnosed me with depression and recommended an antidepressant. I left and never went back.

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]

That was almost my exact experience with a former girlfriend, except my advising her about sleep apnea.

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.

[silisili]

It's so wild. The first time I woke up to her hitting and shaking me, she was visibly disturbed by it as I'm sure you were. And here we are our whole lives not even knowing we are doing it!

[Auracle]

Similar experience for me except the root cause was low testosterone (probably ultimately caused by a traumatic brain injury).

I kept telling them the only damned thing I was depressed about was how tired I was.

[silisili]

That was exactly my sentiment! Crazy how many doctors look for the easy way out. Glad you also found your cure.

[mecha_ghidorah]

Hey can you please PM me a bit more info on how you were treated and some facts about your case if you are comfortable to?

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

[silisili]

Hi,

So to avoid confusion here, my surgery wasn't some alternative to CPAP per se, but fixed my breathing issue. In short, my nose got so restricted I could barely breathe from it at all.

My journey began by seeing a doctor for it, who tapped on my forehead and said I don't have a sinus infection, take an allergy pill and go away. Nothing but pseudofed ever helped at all, and that got expensive and restricted.

Then I saw an allergy doctor, who said that's a stupid test and did an MRI and found that I have something like a constant sinus infection, and inflammation everywhere. He sent me to an ENT, which honestly is probably where I should have started. As a side note, I did try allergy shots for about a year with no luck.

The ENT has these cool but odd feeling cameras they shove deep into your nose to see around. It's a horrible feeling tbh, sometimes you feel it in your eye or even tooth(nerves, I guess). He determined I had polyps really bad and a deviated septum, so in one marathon surgery did both.

Afterwards, it was great, and slowly got worse. ENT said polyps were coming back, so put me on a daily sinus rinse with budesonide(sp?). So each night I rinse my nose with that, and have for going on 8 years now I guess. It's kinda gross, you wouldn't believe all the snot that comes out after the steroids open everything up, which usually takes about 20 mins.

Feel free to ask any questions.

[mecha_ghidorah]

Ah thanks. I've had the scope shoved in my nose it is terrible (I had a chuckle after getting tested for COVID because boy is that camera worse).

I definitely don't have a constant sinus infection, so it sounds like your situation isn't at all like mine. At least probably not. Nonetheless I really appreciate your time writing all of that out, thank you

[cpncrunch]

I managed to recover from ME/CFS 20 years ago (with no symptoms since). It was entirely through psychological/behavioural changes that I was able to recover.

>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]

Further, here is landmark position paper from Mayo from mid 2021 [1] on ME/CF. It’s an absolutely brutal disease: absolutely no cure, no treatments, give or take 5% chance of ever beating it, and almost 50% of people are house or bed bound for the rest of their life and even more can’t work.

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)...

[DanBC]

Only some forms of graduated exercise are contra-indicated. It's important to note that exercise is still a feature of effective treatment for ME/CFS.

[texasbigdata]

Thanks.

[cpncrunch]

>5% chance of ever beating it

If you actually read the paper where that 5% figure comes from (Cairns,2005) you'll see that it is for untreated, naturalistic recovery. Looking at recovery after treatment (e.g. MRT) the figures are more like 30-35%. Heck, even the Rituximab trial resulted in 38% remission at 4 year follow-up just due to the placebo effect!

[texasbigdata]

If you read the more recent work, there's figures of 80/90/95%+ mentioned from the ME/CF national association as well as several of the hospital associated treatment centers.

I mean I hope you're right, and it's 35%+, and anecdotally and on a branch here, some of the eerily similar but inconclusive SARS, avian flu, and Covid linked cases seem to be recovering faster from self reported individual data points. But I can't prove this.

What's interesting, and seems to either support or intermingle with an earlier point you made is a recent paper that showed if you had childhood trauma you were (this might be the wrong word) either more susceptible or more likely to be in the MECF group. Which suggests, to your point, maybe the cohort has "weaker" psychological baselines. What's not clear, is once you get it, if that baseline is at all relevant to the actual disease (just like it doesn't matter if you initially got it from the Epstein Barr virus or another viral infection). But it sort of aligns with what you're saying.

However the counterfactual is hard to work against. We know CBT/ACT/DBT/etc are highly effective for other issues.....all these people that are essentially disabled (can't work, require care, often can't even be materially ambulatory). Why wouldn't the self select into CBT/ETC? And if you're right, why wouldn't you see a tsunami of self reported or clinically measured recoveries? And therefore the consensus articles would say "do therapy". But they don't. Theres an old medical school anecdote: listen to the patient sometimes they're telling you the diagnosis. In economics you could draw the comparison to the concept of revealed preferences; we don't have to go through all this hand wringing of mechanisms and (im arguing slandering and blaming the victim) others. If you're right, shouldn't you see these landmarks papers saying "hey xyz protocol of ABC therapy plus DEF manual therapy produces an XX% recovery". Where is that paper? Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.

[cpncrunch]

>And therefore the consensus articles would say "do therapy". But they don't.

The problem is twofold. [1] There is a widespread prejudice against psychosomatic illness. and [2] There have been some mis-steps, e.g. PACE trial which put deconditioning and fear of activity front and centre. This caused a huge and predictable backlash, as clearly some fear of activity is rational with this illness.

>why wouldn't you see a tsunami of self reported or clinically measured recoveries?

We do. See for example:

https://www.recoverynorway.org/

https://cfsunravelled.com/cfs-fibro-recovery-stories/

https://www.amazon.com/Recovery-CFS-Personal-Stories-Paperba...

But due to the prejudice, most people just get on with their lives once they recover. When you put your story out there (as I have done) you get hit with a huge ton of personal attacks and abuse. People deny you had the illness in the first place and they say incredibly nasty things about you. I see this on a daily basis.

>Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.

You do see some. Fred Friedberg. B Van Houdenhove. Wyller. etc. But most patients hate these people, or at least actively ignore them, because they simply don't believe it.

[tomByrer]

Good info!

+ 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...

[Klinky]

> We considered 2 exposures of interest: 1) specific underlying medical conditions and 2) the number of conditions. We captured data on both exposures by using ICD-10-CM diagnosis codes from inpatient or outpatient hospital records in PHD-SR from January 2019 up to and including a patient’s first inpatient encounter for COVID-19. We used 1 encounter with an ICD-10-CM code to establish the presence of an underlying condition because few patients had multiple encounters in this hospital database. We excluded 3 ICD-10-CM codes (ie, oxygen support, dependence on a ventilator, and tracheostomy) listed during the patient’s COVID-19 encounter because they could be part of COVID-19 treatment.

...

> To further differentiate underlying conditions from acute complications of COVID-19, a panel of physicians (K.K.W., W.M.K., H.G.R., B.B., N.T.A., J.M.N.) classified the 314 CCSR categories into “likely underlying” (274 categories; eg, asthma); “indeterminate,” which could include underlying or acute complications or both (29 categories; eg, cardiac dysrhythmias); or “likely acute” (11 categories; eg, acute pulmonary embolism).

Am I reading this correctly that they are determining "likely underlying fear and anxiety disorder" from a single ICD-10 code that was likely generated at the time of admission for severe COVID-19? If that's correct, it seems rather flawed at determining if these people had an actual underlying anxiety condition or if the anxiety was due to severe COVID-19 symptoms(moderate to severe difficulty breathing, lack of sleep, lack of food/fluids and pain).

https://www.cdc.gov/pcd/issues/2021/21_0123.htm

[patmcc]

I would say that "dismissing" something as psychosomatic is the type of "oh it's all in your head" bullshit that, yes, has happened far too much in the history of ailments like CFS (and still happens today, I'm sure). And I'm completely against that.

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]

Regular exercise makes it worse because of PEM [1], and graduated exercise therapy is contra indicated [4] because their ATP energy system doesn’t fully work [2]. You could cripple them by forcing progressive exercise dogmatically. Talk therapy is no longer recommended [2] and many antidepressants are not effective [3].

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/...

[patmcc]

I think you're reading more into my comment then is there. I didn't say anything about forcing progressive exercise or GET, CBT may not be widely effective but there are other forms of talk therapy not mentioned in your links, and your CureTogether link is self-reports, which also shows meditation as one of the most successful. And I'm a bit offended, you know nothing about my relationship to those in my life with CFS, I obviously don't tell them "it's all in your head, get some exercise", I just wish they'd be more open to different possibilities.

I think CFS is likely a complex ailment, probably really several different things grouped together because of similar symptoms. Some of the people with what we call "CFS" may have some kind of post-viral syndrome, some may have a genetic disease, some may have depression/anxiety/stress, some may have a combination. I think the real error is stated pretty well in one link I found (somewhere in one of your links): "We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological," - to say outright that a disease that isn't yet well understood is absolutely not psychological is dangerous. CFS isn't measles or diabetes, we simply do not know the full cause(s) yet, period.

[intricatedetail]

How do they measure success of the talking therapies? Because I know people who just buy cannabis on the black market and won't tell doctors about it - they improve but not down to the therapy. They attend talk therapies out of fear of being discharged. It's a huge waste of resources. Nobody I know got helped by these.

[texasbigdata]

Ok fair on tone. Apologies.

First you’re opining on what the disease is? It’s actually the converse to your preposition: it’s a giant symptom cluster (50+) and no one generally believes it’s multiple diseases lumped together. Read the Mayo paper.

The rest of your comment has a logical fallacy which renders it moot: do they have a diagnoses, yes/no? If yes, then your “try other things” and “maybe it’s psychological” comments make no sense and are refuted clinically. It’s like saying “is your computer turned on? No? Ok, it’s probably a software bug. Let’s just be open to possibilities and not be close minded here.”

Also a) you’re assuming they didn’t try therapy. And b) “they’d be open to more possibilities”…like what specifically? The self reports is 20k data points and they got bought by 23andMe; but we could pull PubMed and get to the same result. Nothing seems to work and more importantly other than a believed onset from a post-viral infection, there’s no known even rudementary understanding of how it works. Clinically there’s no known above zero effectiveness non-“say no to everything” modality. What do you suggest these people that have spent 2 to 3 years probably trying everything imaginable attempt?

Like it’s so straight forward. Try talk therapy for a year and then try anti depressants. Oh it didn’t work across a gigantic cohort? And the scientific community generally agrees psychological isn’t a recommended approach? Very Donald Trumpian to say “who knows who knows, let’s keep an open mind here” with no backing on data to stand on other than an intrinsic belief regarding a clinical topic.

You’re suggesting a high rate of false positives. The links show an expected 91% of false negatives (I’m assuming due to the sheer difficulty of diagnosis) and literally no comment of false positives. Not clear how you can defend that assertion.

[cpncrunch]

The Mayo paper seems to be quite slanted against psychological aspects.

There is quite a lot of research, and it shows that both stressful life events and viral infections tend to be triggers. (We know that viral infections are physiologically stressful, in that they activate the HPA axis).

There is also an abundance of evidence that psychological therapy and multidisciplinary rehabilitation helps patients. So this definitely isn't just laziness in saying "maybe it's psychological".

[texasbigdata]

Yeah I mean 23 MDs went to retreat to try to summarize current best understanding of this disease versus your individual opinion.

Which evidence? And why did Mayo/British NIH/CDC/WHO happen to miss this "abundance of evidence"? Without pointing to wonky stuff, how could all those cumulative people employed at those organizations be wrong, and you random internet stranger with no citations happen to have nailed it? I'm assuming you're not claiming Mayo is somehow dishonest. So are you claiming they're incompetent? If neither on what ground do you assert its incorrect?

This is like arguing with an anti-vaxxer who argues "we just don't know, I heard the jab makes you infertile". Almost seems like a waste to even bother replying.

[cpncrunch]

>ATP energy system doesn’t fully work

No, that hasn't been proven. If you look at the Fluge and Mella study that you're referncing for this, you'll see that the scatter graphs overlap, so the evidence isn't terribly convincing. Also, the downregulation of the pyruvate link step that they found is consistent with increase glucocorticoid receptor activity (the stress system).

>Talk therapy is no longer recommended

That's a pretty skewed review you posted. All the evidence points to CBT being effective for CFS. Certainly it can hurt patients when applied improperly, such as forcing patients to ignore exacerbation of symptoms. But that doesn't mean it is all bad.

[texasbigdata]

The former point is super interesting. Can you link to the overlapping scatter graphs?

If that underlying assumption is wrong it's even more mysterious how these patients are so tired. You then have to pivot to the cytokime storm position.

[cpncrunch]

Its just in the full text of the fluge and mella study into mitochondria. Im done with you after your attack on me in another comment.

[ianai]

Few things are worse than a doctor denying care because of such denialism.