Montoya is still prescribing Valcyte for patients even though his own study found that there was no significant difference between Valcyte and placebo (even though the Valcyte arm had more symptoms at baseline):
A personal anecdote: recently I came quite close to being diagnosed with CFS or fibromyalgia but luckily found out I have primary hyperparathyroidism. I have no idea how all the doctors could have missed it, I had to figure it out myself.
"Of all the missed diagnoses of ME/CFS and fibromyalgia, primary hyperparathyroidism proves to be one of the most tragic simply as a result of how treatable the condition is relative to the suffering it can cause." https://phoenixrising.me/archives/23988
I've been trying to diagnose myself for a long time (about a year) before I figured it out. By that time I've been to my doctor multiple times, to two orthopedic doctors, one gastroenterologist, had 3 spine MRIs, gastroscopy, abdominal ultrasound, chest X-ray, a bone scan, lots of lab tests incuding lyme disease, probably other tests and physical therapy. I was to the ER twice where they also had no clue. Someone even advised a psychiatry referral which I did not go for. I got on the right track when I was studying endocrine diseases and happened to include calcium on a panel of blood tests I ordered for myself (presumably because I stumbled upon hyperparathyroidism). Once calcium came back high, it was clear after 2 more blood tests, and the doctors at the Norman Parathyroid Center (where I'm having surgery) confirmed it based on my lab reports. I'm having surgery in 2 days.
Thanks. My story sounds very similar to yours. I had a bunch of tests done including x-rays (negative), MRI (negative), an EMG test (negative), and multiple blood drawings. Eventually it came down to a diagnosis of exclusion, and the neurologist said that I had fibromyalgia despite the fact that my primary symptoms are muscle weakness and cognitive issues, with pain being an annoying but very manageable secondary symptom. At times I've wondered if it's all in my head and I'm just going crazy. Best of luck with the surgery!
Good luck. Just wanted to chime in that my Dad had similar (albeit milder than yours) issues and ran across the Norman Parathyroid Center website while researching his problems. He had surgery there about 6 weeks ago and indeed they found and removed a dime sized tumor.
He has high praise for the docs there. And he’s had an excellent recovery. Energy and alertness has returned full force! Hope your results are similar.
Thanks. Indeed I read only praise of this place, and their web site is an excellent source of information. It is now quite certain I have this but until I get the surgery and see the problems resolving I still worry a little bit if we're right :)
Supposedly it is rare in young people (I'm 29), maybe that had something to do with nobody seeing this.
Male friend at 35 also had lots of strange symptoms and figured out on his own that it was also hyperparathyroidism. He also went to Norman and sings their praises. He was eating dinner in Tampa the night after his morning surgery! They removed two para tumors. What's odd and probably why it took so long for his diagnosis is that it's usually a disease in older overweight women. He was the only young skinny man they saw all day.
He now found out he also has pretty severe apnea (been a pretty loud snorer for years) and isn't sure if it's related or not. The surgery did help but didn't solve everything so found the apnea next and is now on CPAP. Always something!
Good luck and feel free to message if you have any questions about the procedure.
Thanks. I'm even younger than your friend (29 male)! Never noticed any apnea myself or any problems that would not be explained by this disease, so I'm hoping for complete resolution of all issues. Maybe even my mild tinnitus (constant high-pitched noise, unconcerning) will get better, I guess it could be due to the ossicles getting demineralized :)
He probably had it for over 15 years with high calcium tests every year on his physical. No doctor ever mentioned it as a problem as his health just degraded year after year. He figured it out himself and called Norman. So at least you'll have your 30s to enjoy!
Let me know how it goes afterwards. I'd love to hear how you recover!
The differential diagnosis for fatigue is just so vast, it's easy to miss the marginal percent cases like various forms of hyper/hypothyroidism (yes, both can cause fatigue; I was tested for both, among many other tests.) Unless you have a doctor that's fairly dedicated to solving your case, it often just doesn't happen - the patient's have to do a hell of a lot of the work in a lot of these cases. You must be your own advocate to get the doctors to run the right tests, try the right drugs... it's probably the only reason drug advertising is ever legal at all.
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.
Sleep apnea at the surface looks like CFS since you aren't consciously aware that you stop breathing in your sleep but still feel tired all of the time when you wake up in the morning.
Lots of things look like CFS on the surface, including depression. I expect there will turn out to be many distinct physical diseases responsible for what we call CFS, as well as simply depression. I remember first reading about CFS over a decade ago when most of the information available on the internet was on sufferers' blogs and forums and being struck by the prejudice against mental illness. There were a lot of comments to the effect that, "The doctors said it was all in my head, but then I learned that Chronic Fatigue Syndrome is a real disease! It totally changed my life knowing that I was sick and not crazy! I don't have to hate myself anymore." A lot of anger was directed at doctors who suggested psychological explanations. Even saying, "We can't find any physical cause, so maybe you should talk to a psychologist as well," (which sounds like a reasonable suggestion to me) was treated as a disrespectful, belittling, arrogant, and sexist. Which I suppose it was in many cases — there's certainly enough prejudice to go around. But for me as someone seeing a therapist for depression it certainly made me look at the people around me differently, having that unguarded glimpse into the revulsion that some people feel.
Only on the very surface. Sleep apnea is relatively easy to test for. ME/CFS sufferers experience a kind of fatigue that is distinctly different from that caused by sleep deprivation. Look up PEM / PENE:
I think in several cases the cause can be traced to taking multiple courses of ciprofloxacin or other fluoroquinolones which have been known to be mitochondrial topoisomerase poisons for decades. The drugs are super dangerous for public health and should be reserved for last resorts and the medical industry is finally catching on.
If you ruin the mitochondrias ability to reproduce you will develop latent muscular and neurological dysfunction.
There was a study in 2008 that showed the majority of people with chronic fatigue had mitochrondrail dysfunction that corelated with the severity of symptoms.
CFS and fibromyalgia are conditions that see incredibly positive results after prolonged fasting. Don't take my word for it, and do not do it without extensive research on your part - but do conduct this research. Look at 7 to 10 days of dry fasting (no food or water), or 20 to 40 days of water fasting (no food, just water).
CFS and fibromyalgia ARE NOT life-long diseases, not by a long shot. You CAN get rid of them rather quickly. I just hope you see this comment before it gets flagged here for absolutely no reason like my other comments do.
Someone always has to jump into any vaguely health-related article and tout some absurd kind of fasting as a sure panacea, no matter the problem; it's like an unwritten law of HN. I'm surprised that nobody has suggested a classical eastern vegan diet yet, that's another good old chestnut.
Yet those who dismiss it continue to dismiss the fact that their lifestyle, including and primarily dietary choices [1], is the leading contributor to their various health ailments and the reason they require life-long drugs that do nothing but suppress various symptoms to create a sense of sustained "good health". And those who do undertake fasting, both to rid themselves of "auto-immune diseases" and other such sciency sounding names, and as a preventative maintenance regimen, are the healthy ones.
the unwritten law of HN is quite the opposite - to immediately dismiss and blindly downvote any non-mainstream answers.
[1] By "dietary choices" above I refer to any diet that is not 100% organic fruits and vegetables and as little water as possible (you are meant to be getting the vast majority of your water intake from fruits, not stand-alone glasses of water).
Because your body is more capable than what mainstream modern medicine is telling you? Keeping you in the dark about the healing benefits of fasting is their No. 1 agenda along with pushing life-long "treatments".
I do two 8-day-long dry fasts every year, and have completed several 12-day ones as well.
I also water fast for 30 days twice a year.
You have no idea what you are missing out on, health wise, if you are suffering from any sort of disease modern medicine is telling you is incurable.
I'm skeptical and intrigued. Mostly about your world view since you are on HN and that does some selection. Apart from the water thing, who do you think defines agenda of "mainstream modern medicine"? Is there like some secret communication channel between all researches around the world to keep everybody in dark about how water is not necessary for well functioning brain? I'm sorry if it sounds offensive, but I'm sincerely curious how do you see it.
how is "CFS and fibromyalgia are conditions that see incredibly positive results after prolonged fasting. Don't take my word for it, and do not do it without extensive research on your part - but do conduct this research." a flaggable comment? He's very clearly stating to do your own research and not take his word for it.
Its more that for claims you are making, people want to see something more concrete than someones word, especially in a topic that has a bunch of snake oil going around.
In my brief searching it looks like one might be able to train up to doing longer periods of going without water, but there seems to be a lack of study on the matter (probably hard to get a study past a review board due to the danger you are placing people in).
What is the mechanism by which fasting for 10 days helps "any sort of disease modern medicine is telling you is incurable" (as you say in another comment that is no dead so I can't reply)?
Are there any studies into the health benefits of not drinking water for 30 days?
I have chronic fatigue and my condition is improved by fasting. Fasting triggers autophagy and hgh release. Most of the symptoms of CFS are the same as low hgh levels, and people with CFS have low hgh.
You've posted so much about this topic to HN, and gotten involved in so many off-topic flamewars, that we need to ask you stop.
Obviously you're passionate about the topic of fasting, but beyond a certain point, passion on a divisive topic amounts to trolling. I'm sure it isn't intentional, but since this is the reliable effect of your posts, please drop the subject on HN from now on.
I believe I am acting well within the official guidelines you have posted for this site (the capitalized words for emphasis i used today are probably the only offense).
I am not introducing off-topic flamewars. Fasting as a healing mechanism has been around for centuries and is well documented in medical literature and I only raise it when it is relevant to a submission or ongoing discussion. I do not attack anyone personally and I believe I am being very civil with my comments. I do not find the basis for which you are asking me to cease bringing up a very valid option for one to explore when dealing with a health crisis.
I don't want to ban you and don't personally have any objection to your view on this. But you've created so many flamewars by posting about it that your account has basically become a troll on the issue. Indeed users were complaining to us the last time this came up.
If you keep doing it, we're going to have to ban you. Regardless of how right you are or feel you are, it's more important to avoid degenerate discussion here.
I disagree with my comments being grounds for a ban, at least according to your existing Guidelines.
I merely raise the point that fasting should be considered where relevant to the discussion. In each and every health related discussion I joined there is significant evidence that fasting is indeed a viable treatment option.
The flamewars you are speaking of are not started by myself, rather by a select few who have opposing beliefs and are using the site features (flagging, downvoting) to express such views.
As you mentioned, I've been speaking up about fasting for a long time on HN. I have since received several emails from members here who have taken my comments into consideration and have been successful at resolving various health issues in large part by undertaking a prolonged fast.
Banning me plays into the hands of those who would rather this treatment option be silenced and I believe the Flagging feature is being abused by those who are using it anonymously to prevent others from being exposed to it.
By banning me you are effectively hindering people's access to a wide variety of health options, and I believe you will be in the wrong by doing so. Therefore I would like to have my comments and activity reviewed by other moderators as well, since currently as things stand I think banning me will be a personal decision on your part that is not in line with the Guidelines that you have published and asked your users to adhere by. Who can I contact to further discuss this?
As someone who has overcome chronic, debilitating illnesses using unconventional healing techniques myself, I'm sympathetic to your point of view. Indeed dang hinted that he may also be sympathetic to your point of view.
But we're all responsible for phrasing our comments in a way that doesn't trigger flamewars.
The guidelines clearly state: "Don't introduce flamewar topics unless you have something genuinely new to say."
The same thing can be said in multiple different ways. You should make an effort to phrase your comments in the non-flamewar-triggering way.
My father started suffering from ME/CFS about 20 years ago. Fortunately it is not so severe that he can’t enjoy life, but he had to stop working (and the authorities didn’t support early retirement because it’s not a well understood condition).
I remember my father was initially off work with a virus, and then subsequently was diagnosed with some sort of thyroid condition which required lifelong prescription drugs to treat. But he never fully recovered (complained of constant fatigue, muscle aches in the morning, and a flu-like feeling) and eventually was diagnosed with ME, although there is no test to prove it definitively, whatever it is.
Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological? Some brief Googling suggests that CFS is sometimes precipitated by various viral or bacterial infections, which is a step in the right direction, but I haven't read anything yet that rules out the alternative hypothesis that this is a (cluster of related) psychological disorders that is sometimes prompted by a life event. The dozen patient organizations campaigning for recognition is a bit of a red flag.
The “ME” is part of the name now for a reason. They have more information than symptoms alone. ME is the newer name for it, but CFS has been the more commonly used term.
Title for post should be “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative”
No, actually ME was the old name which was coined in the 1950s. It was eventually dropped in favour of Chronic Fatigue Syndrome in the 1990s when it was realised that there typically wasn't brain inflammation, and there wasn't always myalgia.
The term ME was resurrected recently because it is more appealing to some patients, implying a more severe and physical illness.
Incorrect. There are going to be studies showing that inflammation in the pipeline soon, but for now there is the Japanese paper from 2014. You know of it, Mr. 'research.' Melvin Ramsay & his colleagues didn't pull this out of thin air and you know it. Plus, the canard of 'it's more appealing because' is stuff and nonsense, much like the fanciful notions of how much damage stress can actually do. You're on the wrong side of this.
The Japanese study [1] looked at immune (microgial) over-activation in the brain, which is different from actual inflammation of the brain or spinal cord (encephalitis or myelitis). Stress, anxiety and depression from psychosocial stressors are already known to cause neuroinflammation from microglial over-activation [2].
It is a little confusing that they use the term neuroinflammation for something that isn't really inflammation.
"The exquisitely orchestrated adaptive response to stressors that challenge the homeostasis of the cell and organism involves important changes in mitochondrial function"
I'm a celiac and it is pretty annoying to hear people suggest something is psychological or (as it is often put) placebo. What makes it a red flag that people want recognition for a condition? Does it make them snowflakes if they want people to be aware that they are sick in a way that other people don't regularly experience? I would love for some recognition to the idea that food can make you sick, as I'm sure people with CFS would like awareness, more research, and solutions to their issues. Until you have evidence that it is purely psychological I would refrain from suggesting such.
> Until you have evidence that it is purely psychological I would refrain from suggesting such.
If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them.
> What makes it a red flag that people want recognition for a condition?
People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.
The issue here is that you did some "brief googling" (your words) on a complicated, confusing, cutting-edge area of clinical research, and now feel competent to state your completely uninformed "null-hypothesis"...
I've seen those links. Is there some particular evidence you're pointing to? Or a position statement by experts concerning a convincing physiological mechanism?
You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric.
I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. What evidence exactly is required? The volume of studies indicating objectively measurable biological abnormalities is massive. Many are unreplicated due to longstanding funding issues. But while I think most reasonable people would agree that psych issues and/or stress are capable of causing a number of physical issues, I can't imagine we'll ever see anything that suggests that psych issues could possibly come close to affecting the body in the severe ways that Myalgic Encephalomyelitis does.
> You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken,
I did read those links. The first two conspicuously did not make a claim about a physiological origin, and the third gave a "report" link that led to a paywall.
Thanks! This new link was super useful, and is probably the strongest evidence available on this thread. Do you think that the CDC would endorse the claim about physiological origins in this report? (It's from 2015.) It's notable that the report introduces yet another name and set of defining criteria. As far as I can tell this report does not yet reflect an expert consensus, but I've updated my opinions significantly.
> I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness.
Can we agree that, given the social and economic implications, there is a huge demand from patients for doctors to issue a diagnosis for various collections of self-report symptoms (not just CFS/ME/SEID)? And that this leads to the potential for bias in the system? Are you not unsettled by the fact that the report you link admits that replication and validity are still big open problems?
I'm generally very worried with the anger and political bent to this thread (though your comments in particular have been very productive and are much appreciated). It just seems more productive try to convince skeptics based on the merits of the evidence, and admit when there remain significant disagreement and uncertainty among experts.
jessriedel, the consensus is that this is a physiological disease with an unknown mechanism. That's why it's an area of active research.
I don't know where you get the idea that the null hypothesis for the cause of any set of symptoms not explained by known biomarkers needs to be "psychosomatic disorder". That's not even wrong - it makes no sense.
> the consensus is that this is a physiological disease with an unknown mechanism
Can you point me towards a statement of that consensus?
> I don't know where you get the idea that the null hypothesis for the cause of any set of symptoms not explained by known biomarkers needs to be "psychosomatic disorder".
I didn't say that, and in particular never used the words you put in quotes and attributed to me. However, I'm pretty comfortable with what I did say: absent evidence to the contrary, a collection of self-reported subjective symptoms with no apparent physiological counterparts is significantly more likely to have a psychological origin. Can you say more about why it doesn't make sense to you? Or point me towards the evidence specific to CFS/ME that makes you think it doesn't fit that description?
Myalgic Encephalomyelitis is not a collection of self-reported subjective symptoms. It never was. Currently the CDC has adopted criteria for which post-exertional malaise is a required symptom. This is measured by 2-day CPET as mentioned elsewhere. I realize that a lot of people don't keep up on this stuff as much as those affected by this illness, but I have to say that it gets a bit tedious having to correct these commonly held, incorrect perceptions about what this illness is. Chronic Fatigue Syndrome is 'tired all the time,' 'fatigue,' sore throats, headaches, muscle & joint pain. Ramsay ME is closer to 'deathlike paralysis.' There's a reason why it was once described as 'atypical polio.' And as has been pointed out elsewhere, while a person suffering from depression is likely to respond positively to exercise, an ME patient responds so negatively that it is to be considered contraindicated, in the strongest possible terms. That's why the Institute of Medicine recommended renaming it to describe exactly what exertion does.
The choice isn't binary physical or psychological.
No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD?
A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
ME/CFS is an under-researched, multi-system disease that affects people in a multitude of ways and is very hard to diagnose. There are no accepted bio-markers yet. There are, however, many well-respected researchers in the field, and more are beginning to enter it from all kinds of disciplines. Basically none of them think this is a psychosomatic illness. This is a good place to start for getting an overview of interesting current research: https://www.omf.ngo/the-end-mecfs-project-2/
Wouldn't the researchers entering this field be selected for thinking this? Their opinion seems less useful than, e.g., a position statement by an encompassing field.
"Position statement" = collective statement by a group of experts on a topic. "Encompassing field" = group of medical experts who study a larger body of knowledge that includes CFS/ME as a subset.
Like, in physics there is a big field of people who study dark matter, with subfields who specializes in certain (often mutually exclusive) hypotheses about what dark matter is made of, e.g., WIMPs, axions, etc. If I wanted to know whether a new hypothesis about dark matter was plausible, I'd want to hear what all the dark matter specialists thought, not just people who already committed to studying that particular hypothesis.
First I want to say that determining something as Psychological doesn't put you in much better of a position than just saying something is a somatic condition we just don't understand yet. Secondly, to sufferers who are upset by this idea, please don't be. Yes, when the vast majority of people hear that a condition is psychological, they somehow think it's easier to deal with, less real, madeup or somehow not physical. This is wrong and any good physician will treat you with the exact same empathy and respect whether they believe something is psychogenic or somatic.
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.
Thanks, I agree with basically all this. I would only mention that medicine has a better track record of developing treatments to disorders with a somatic cause than purely psychological ones.
"Comorbidity" - but which causes which? Depression can absolutely lead to fatigue. But if you were healthy, and suddenly you have absolutely no energy, and your brain is fuzzy, and you're sleeping 14 hours a day and still don't have any energy the other 10 hours, well, that's depressing.
> 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.
It is not generally true that physicians will treat people with somatic diseases well (or at all) if they personally believe symptoms are actually caused by psychological issues.
This is an unproductive, even dangerous thing to tell sufferers.
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:
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 physiological mechanism rather than merely being a symptom cluster that might be purely psychological?
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?
> 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?
Are you asking if all autoimmune diseases can be detected by a single test. That doesn't really seem relevant. To my knowledge, all of the diseases that are confidently attributed to an autoimmune disorder do indeed have corresponding physiological evidence, with higher degrees of confidence when there are independent pieces of direct evidence. (One can imagine a case where there was overwhelming circumstantial evidence instead, but I've never heard of it; maybe you have an example in mind?) Autoimmune diseases generally have multiple common physiological features like excess inflammation, responsiveness to steroids (which suppress the immume system), or antinuclear antibodies (ANA).
The rest of your comment was much more helpful. Thanks! (Except for the part where you said I made accusations. I didn't.)
> Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49.
Right, there are obviously lots of physiological diseases whose underlying causes aren't understood for a long time. But Lupus had objective (non-self-report) symptoms, giving doctors confidence in it was physiological. They were correctly unsure it was autoimmune until later evidence became available.
> The medical community is at a consensus that there's an organic cause,
Could you link to a consensus statement? I looked around a lot and all the documents i could find that reflect a consensus of experts like the CDC (rather than the opinion of individual researchers) were careful to never endorse a physiological mechanism, even an unknown one.
> ...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
Sorry, are you saying there is a consensus it's autoimmune, or just biological? There appear to be lots of non-autoimmune theories too.
Actually, everything is biological, including depression. The CDC, NIH, etc. are in agreement that the illness is real, and not malingering or hypochondria. But they are open-minded to the etiology.
>suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting
Anecdotally I used to think that sufferers of Chronic Fatigue were suffering from psychological issues. Earlier this year I was diagnosed with EBV that led to a post viral illness (the first step in EBV becoming Chronic Fatigue). I saw a number of medical specialists and I would them that their diagnosis doesn't make sense. I'd never even heard of illness leading to Chronic Fatigue. Luckily I recovered, or am nearly 100% recovered, but it changed my mind on the illness.
Yes. Something called “post exertional malaise” which can be tested via the Stevens Protocol.
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.
I’ve been diagnosed with CFS. I had a diagnosis of Kawasaki disease, autoimmune vasculitis, at age 3. And reoccurring fevers and sore throats every three months (coresponds with lifecycle of EBV). Pneumonia and mono as a teenager. I’ve had a mild case of CFS for a little over six years that became more severe three years ago, both following mono infections. I’m unable to work without a recovery period that lasts for days. During a year long infection with the Epistein Barr Virus I lost my sense of smell, started losing my hearing, have problems with depth perception/driving, and the sustained focus required for reading. I lost my ability to do circuit analysis and BASH. I used to be a high level athlete and lost half my strength. I got very lucky and discovered that iodine can treat Epistein Barr Virus, otherwise the prognosis for a EBV infection of longer than 6 months (CAEBV) is death. The requirements to get disability in the United States for the disease of CFS basically requires a diagnosis of CAEBV plus a impossible to prove “subjective” criteria that basically guarantees you will have to go in front of a judge and be subjected to their opinion of the condition. When shopping for a lawyer I was refused to even have it on my application as a disabling condition despite it being listed in the social security “blue book.”
I’m also missing 10% of my mitochondrial DNA and have a gene which is the single largest risk factor for MS (also caused by EBV).
I lost my mind during the last infection.
The virus is interesting. It’s one of the most common viruses and has an ability to cause the body to “forget” adaptive immunity. It reproduces in response to low vitamin B12 levels or mitochondrial dysfunction.
That’s a tough situation, I feel for you. Not implying this is the solution, but I’m curious if you’ve tried ketogenic diets/fasting? They induce mitochondrial biogenesis, and appear to affect immunity positively.
I eat a low carb diet. I don’t think ketogenic is a good idea due to liver and kidney damage. I do intermittent fasting everyday. I keep meaning to go on a longer fast every now and then...
I recently got food stamps so I’ve been enjoying food more :)
My wife suffers from CFS, and for the first two years, she was pretty much bed ridden. The first six months she couldn't even read in bed because she was so exhausted she couldn't concentrate enough. Lucky we had a dog to keep her company.
We tried various techniques through the years including modafinil (and sleeping tablets at night to counteract that), but nothing really worked beyond a temporary solution.
These days (7ish years later) she can work full time as long as she maintains her energy envelope. So doesn't do much on weekends, needs to rest up.
For HNers with ME/CFS (or an interest in it) I can recommend last year's documentary Unrest by Jennifer Brea: https://www.unrest.film/. It's available on Netflix.
It's a confronting look at the human side of severe ME, and a call for greater recognition. If you've had people around you struggle to understand what you're dealing with, showing them Unrest could help a lot. Check it out.
While it's a good movie, I found it very negative in that it didn't show any recovery stories. Jen herself seems to have recovered a lot, and has been travelling around the world to talk about Unrest.
Ron Davis, also at Stanford, has been working on some diagnostics on severely ill MECFS patients. It is a severe disease that has been underfunded and under researched for many years. My son got sick steadily over years, and luckily his is not as severe as others, but it got me very worried.
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"Of all the missed diagnoses of ME/CFS and fibromyalgia, primary hyperparathyroidism proves to be one of the most tragic simply as a result of how treatable the condition is relative to the suffering it can cause." https://phoenixrising.me/archives/23988
He has high praise for the docs there. And he’s had an excellent recovery. Energy and alertness has returned full force! Hope your results are similar.
Supposedly it is rare in young people (I'm 29), maybe that had something to do with nobody seeing this.
He now found out he also has pretty severe apnea (been a pretty loud snorer for years) and isn't sure if it's related or not. The surgery did help but didn't solve everything so found the apnea next and is now on CPAP. Always something!
Good luck and feel free to message if you have any questions about the procedure.
Let me know how it goes afterwards. I'd love to hear how you recover!
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.
https://solvecfs.org/deciphering-post-exertional-malaise/
If you ruin the mitochondrias ability to reproduce you will develop latent muscular and neurological dysfunction.
http://www.biochemsoctrans.org/content/early/2018/04/16/BST2...
CFS and fibromyalgia ARE NOT life-long diseases, not by a long shot. You CAN get rid of them rather quickly. I just hope you see this comment before it gets flagged here for absolutely no reason like my other comments do.
You can die of dehydration if you don't drink water for 3 days.
https://www.quora.com/How-long-can-a-human-live-without-wate...
https://www.karger.com/Article/Abstract/357718
the unwritten law of HN is quite the opposite - to immediately dismiss and blindly downvote any non-mainstream answers.
[1] By "dietary choices" above I refer to any diet that is not 100% organic fruits and vegetables and as little water as possible (you are meant to be getting the vast majority of your water intake from fruits, not stand-alone glasses of water).
I do two 8-day-long dry fasts every year, and have completed several 12-day ones as well.
I also water fast for 30 days twice a year.
You have no idea what you are missing out on, health wise, if you are suffering from any sort of disease modern medicine is telling you is incurable.
In my brief searching it looks like one might be able to train up to doing longer periods of going without water, but there seems to be a lack of study on the matter (probably hard to get a study past a review board due to the danger you are placing people in).
Are there any studies into the health benefits of not drinking water for 30 days?
Obviously you're passionate about the topic of fasting, but beyond a certain point, passion on a divisive topic amounts to trolling. I'm sure it isn't intentional, but since this is the reliable effect of your posts, please drop the subject on HN from now on.
I am not introducing off-topic flamewars. Fasting as a healing mechanism has been around for centuries and is well documented in medical literature and I only raise it when it is relevant to a submission or ongoing discussion. I do not attack anyone personally and I believe I am being very civil with my comments. I do not find the basis for which you are asking me to cease bringing up a very valid option for one to explore when dealing with a health crisis.
If you keep doing it, we're going to have to ban you. Regardless of how right you are or feel you are, it's more important to avoid degenerate discussion here.
He said "it's more important to avoid degenerate discussion here".
He means discussions that degenerate into flamewars.
For what it's worth, misquoting or misrepresenting someone else's comments is another cause of degenerate discussions.
I merely raise the point that fasting should be considered where relevant to the discussion. In each and every health related discussion I joined there is significant evidence that fasting is indeed a viable treatment option.
The flamewars you are speaking of are not started by myself, rather by a select few who have opposing beliefs and are using the site features (flagging, downvoting) to express such views.
As you mentioned, I've been speaking up about fasting for a long time on HN. I have since received several emails from members here who have taken my comments into consideration and have been successful at resolving various health issues in large part by undertaking a prolonged fast.
Banning me plays into the hands of those who would rather this treatment option be silenced and I believe the Flagging feature is being abused by those who are using it anonymously to prevent others from being exposed to it.
By banning me you are effectively hindering people's access to a wide variety of health options, and I believe you will be in the wrong by doing so. Therefore I would like to have my comments and activity reviewed by other moderators as well, since currently as things stand I think banning me will be a personal decision on your part that is not in line with the Guidelines that you have published and asked your users to adhere by. Who can I contact to further discuss this?
But we're all responsible for phrasing our comments in a way that doesn't trigger flamewars.
The guidelines clearly state: "Don't introduce flamewar topics unless you have something genuinely new to say."
The same thing can be said in multiple different ways. You should make an effort to phrase your comments in the non-flamewar-triggering way.
I remember my father was initially off work with a virus, and then subsequently was diagnosed with some sort of thyroid condition which required lifelong prescription drugs to treat. But he never fully recovered (complained of constant fatigue, muscle aches in the morning, and a flu-like feeling) and eventually was diagnosed with ME, although there is no test to prove it definitively, whatever it is.
https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne...
Edit: Weird...this article now also on the first page of HN.
Syndrome refers to a set of symptoms, whereas disease is both a definite pathological process plus a set of symptoms caused by it.
Title for post should be “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative”
No, actually ME was the old name which was coined in the 1950s. It was eventually dropped in favour of Chronic Fatigue Syndrome in the 1990s when it was realised that there typically wasn't brain inflammation, and there wasn't always myalgia.
The term ME was resurrected recently because it is more appealing to some patients, implying a more severe and physical illness.
It is a little confusing that they use the term neuroinflammation for something that isn't really inflammation.
[1] http://jnm.snmjournals.org/content/55/6/945.long [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660717/
https://www.sciencedirect.com/science/article/pii/S104327600...
"The exquisitely orchestrated adaptive response to stressors that challenge the homeostasis of the cell and organism involves important changes in mitochondrial function"
If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them.
> What makes it a red flag that people want recognition for a condition?
People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.
Here's some basic information:
https://www.cdc.gov/me-cfs/index.html
https://www.nih.gov/news-events/news-releases/nih-announces-...
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MEC...
https://www.ncbi.nlm.nih.gov/pubmed/25695122
I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. What evidence exactly is required? The volume of studies indicating objectively measurable biological abnormalities is massive. Many are unreplicated due to longstanding funding issues. But while I think most reasonable people would agree that psych issues and/or stress are capable of causing a number of physical issues, I can't imagine we'll ever see anything that suggests that psych issues could possibly come close to affecting the body in the severe ways that Myalgic Encephalomyelitis does.
https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
I did read those links. The first two conspicuously did not make a claim about a physiological origin, and the third gave a "report" link that led to a paywall.
https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomy...
> and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric. https://www.ncbi.nlm.nih.gov/pubmed/25695122
Thanks! This new link was super useful, and is probably the strongest evidence available on this thread. Do you think that the CDC would endorse the claim about physiological origins in this report? (It's from 2015.) It's notable that the report introduces yet another name and set of defining criteria. As far as I can tell this report does not yet reflect an expert consensus, but I've updated my opinions significantly.
> I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness.
Can we agree that, given the social and economic implications, there is a huge demand from patients for doctors to issue a diagnosis for various collections of self-report symptoms (not just CFS/ME/SEID)? And that this leads to the potential for bias in the system? Are you not unsettled by the fact that the report you link admits that replication and validity are still big open problems?
I'm generally very worried with the anger and political bent to this thread (though your comments in particular have been very productive and are much appreciated). It just seems more productive try to convince skeptics based on the merits of the evidence, and admit when there remain significant disagreement and uncertainty among experts.
I don't know where you get the idea that the null hypothesis for the cause of any set of symptoms not explained by known biomarkers needs to be "psychosomatic disorder". That's not even wrong - it makes no sense.
Can you point me towards a statement of that consensus?
> I don't know where you get the idea that the null hypothesis for the cause of any set of symptoms not explained by known biomarkers needs to be "psychosomatic disorder".
I didn't say that, and in particular never used the words you put in quotes and attributed to me. However, I'm pretty comfortable with what I did say: absent evidence to the contrary, a collection of self-reported subjective symptoms with no apparent physiological counterparts is significantly more likely to have a psychological origin. Can you say more about why it doesn't make sense to you? Or point me towards the evidence specific to CFS/ME that makes you think it doesn't fit that description?
No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD?
A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
Like, in physics there is a big field of people who study dark matter, with subfields who specializes in certain (often mutually exclusive) hypotheses about what dark matter is made of, e.g., WIMPs, axions, etc. If I wanted to know whether a new hypothesis about dark matter was plausible, I'd want to hear what all the dark matter specialists thought, not just people who already committed to studying that particular hypothesis.
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.
> 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.
Though I meant is where I wrote isn't there.
Mea culpa.
This is an unproductive, even dangerous thing to tell sufferers.
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.
> Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions.
Definitely agree. The only caveat is that reliable, robust psychological interventions are harder to come by.
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?
Are you asking if all autoimmune diseases can be detected by a single test. That doesn't really seem relevant. To my knowledge, all of the diseases that are confidently attributed to an autoimmune disorder do indeed have corresponding physiological evidence, with higher degrees of confidence when there are independent pieces of direct evidence. (One can imagine a case where there was overwhelming circumstantial evidence instead, but I've never heard of it; maybe you have an example in mind?) Autoimmune diseases generally have multiple common physiological features like excess inflammation, responsiveness to steroids (which suppress the immume system), or antinuclear antibodies (ANA).
https://www.mayoclinic.org/tests-procedures/ana-test/about/p...
The rest of your comment was much more helpful. Thanks! (Except for the part where you said I made accusations. I didn't.)
> Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49.
Right, there are obviously lots of physiological diseases whose underlying causes aren't understood for a long time. But Lupus had objective (non-self-report) symptoms, giving doctors confidence in it was physiological. They were correctly unsure it was autoimmune until later evidence became available.
> The medical community is at a consensus that there's an organic cause,
Could you link to a consensus statement? I looked around a lot and all the documents i could find that reflect a consensus of experts like the CDC (rather than the opinion of individual researchers) were careful to never endorse a physiological mechanism, even an unknown one.
https://www.nih.gov/news-events/news-releases/nih-announces-...
https://www.cdc.gov/me-cfs/about/index.html
> ...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
Sorry, are you saying there is a consensus it's autoimmune, or just biological? There appear to be lots of non-autoimmune theories too.
Actually, everything is biological, including depression. The CDC, NIH, etc. are in agreement that the illness is real, and not malingering or hypochondria. But they are open-minded to the etiology.
>suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting
Nobody is suggesting that it is imaginary.
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.
I’m also missing 10% of my mitochondrial DNA and have a gene which is the single largest risk factor for MS (also caused by EBV).
I lost my mind during the last infection.
The virus is interesting. It’s one of the most common viruses and has an ability to cause the body to “forget” adaptive immunity. It reproduces in response to low vitamin B12 levels or mitochondrial dysfunction.
*edited spelling
I recently got food stamps so I’ve been enjoying food more :)
We tried various techniques through the years including modafinil (and sleeping tablets at night to counteract that), but nothing really worked beyond a temporary solution.
These days (7ish years later) she can work full time as long as she maintains her energy envelope. So doesn't do much on weekends, needs to rest up.
It's a confronting look at the human side of severe ME, and a call for greater recognition. If you've had people around you struggle to understand what you're dealing with, showing them Unrest could help a lot. Check it out.
https://en.wikipedia.org/wiki/Butylated_hydroxytoluene#Healt...