9 ms·

Analysis of chronic fatigue syndrome study casts doubt on published results

119 points by rch 10y ago

lutusp 10y ago
Apart from the article's importance in exposing some bad science, its author is skilled in narrative, in making an essay readable. A worthwhile read.
philipkglass 10y ago
I had a sibling who struggled with CFS for years. Even before this bad study came out the usual reaction from doctors was you're suffering from mental illness/try exercising/you're faking. It sounds almost like this study was constructed for the convenience of doctors so they could point to the publication and keep suggesting what they had already suggested. It's hard living with a debilitating medical condition that doesn't have good treatments or a clear cause. It's even harder when the doctor says "I think it's all in your head" instead of "sorry, we really don't know how to treat this yet." That sort of consistent dismissal/borderline victim-blaming from real doctors is what I think pushed my mom toward bogus alternative health practices. There appears to be nothing medically valid about chiropractors but at least they don't call you crazy just for telling them about the experiences you've been having.
- salamisultan 10y ago
  It's terrible. I have a similar condition due to chronic pain. I get told I'm a lazy good for nothing all the time by my parents. I've just accepted that most people won't understand.
  - waspleg 10y ago
    I have MS. People can't/don't/won't empathize with things they can't see or understand firsthand. I could give work examples of being threatened illegally while on FMLA but posting this under this username is dangerous enough.
- cpncrunch 10y ago
  I don't think any doctor says "it's all in your head" or "you're crazy". Most doctors do think it is psychosomatic, which is very different (psychosomatic means the physical symptoms are real, vs imaginary). That still seems the most plausible explanation, from what I can see (having researched it, and also suffered from it myself).
  - philipkglass 10y ago
    I shouldn't have put "it's all in your head" in quotation marks, because I wasn't there in person and I too doubt that a doctor uttered those literal words. There was however an attitude of skepticism/annoyance conveyed through a combination of words and actions. One example: sibling had become dangerously underweight due to difficulty eating/swallowing. There was eventually a barium swallow test. One of the nurses excitedly told sibling after the test revealed clear abnormalities something like "wow, I am sorry, there is something clearly wrong here." The previous attitude having revealed (even if not in so many words) that she believed sibling to be a faker wasting time. I don't know if CFS was even the right label for the cluster of symptoms. Even in infancy there were many more problems with getting sick than the other kids in the household experienced. Infections and a cluster of other symptoms that ended up labeled CFS grew really severe in adolescence through mid 20s, then seemed to (mostly) go away as mysteriously as it had come. It was nearly a decade of misery that never had any clear diagnosis. I've also seen a friend with lingering complications from third degree burns suffered 10+ years ago be treated pretty shabbily as she tries to keep her pain under control. Modern medicine in the US seems pretty darn good at treating acute problems with obvious causes and fixes. It seems to be pretty crappy at treating chronic issues, especially ones that don't have good diagnostic markers. If I ever end up in the hospital again I hope it's for a nice obvious problem like a broken leg.
    - rendaw 10y ago
      I have an unidentified repetitive stress injury (RSI) and doctors have universally tried some treatment, failed, then told me I'm simply working too much. This happened after I stopped all my hobbies and took a 30h/week job (flex time, with frequent breaks). The identifier RSI lends itself to this diagnosis. When the symptoms show signs of improving, the doctors immediately conclude "Well, you're getting better now, so just continue as you are now and we'll consider this resolved." An acquaintance suggested I overwork myself before going to the hospital so I don't risk being dismissed by a temporary improvement in my symptoms. I've had several sprains and a broken wrist that were resolved quickly and without complications. This article and your comments resonated with me.
- wpietri 10y ago
  That sounds awful. There's a phenomenon that I wish I had a name for. Or even a good description of. It's when people imagine that your issue is just something they've experienced, even when the magnitude is very different. E.g., when people who have been sad at some point tell clinically depressed people that they should just cheer up. When they tell somebody with an anxiety disorder that they should calm down. Or, as with your sibling and CFS sufferers that they should just get a little exercise and it'll all be fine. I can sort of forgive that in regular folk. But in doctors? It's shameful.
  - wott 10y ago
    My folks are like that too. They never experienced any psychic or physic trouble at any point in their 70 years long life, so they cannot fathom that people may strongly suffer from any of these problems, which are in their opinion not real problems and can be solved with cheering up and making an effort, because that's how they solved their own 5-minute 'problems'.
    - BerislavLopac 10y ago
      > They never experienced any psychic or physic trouble at any point in their 70 years long life How can you tell?
    - wpietri 10y ago
      I cannot imagine growing up in a context like that. That must have been rough. I think you're right about the relationship between suffering and empathy, though. There have been some awful things in my life. But given the time to recover from them and really consider the experience, empathy has gotten much easier for me from them.
  - dec0dedab0de 10y ago
    maybe false empathy? everyone with ADHD has gone through this too.
  - ivanhoe 10y ago
    Yup, that's a problem with procrastination, too. Many people will dismiss it as just "laziness", heard it many times.
- CydeWeys 10y ago
  Even if it is an illness of the brain (and it might well be), it should still be treated seriously, like many other similarly serious illnesses of the brain. Schizophrenia is an illness of the brain too, but no one says "It's all in your head, just get over it" to the afflicted.
- tribby 10y ago
  awful. and relatable. CFS was my brother's diagnosis, until it became lyme. others take a psychiatric slant. "sorry, we really don't know how to treat this yet," or even "sorry, we're not really sure what it is, but we believe it exists" is somehow an impossible conclusion. the only thing shared by his GP, internist, CFS specialist, psychiatrist, and lyme specialist, really, is a kind of diagnostic hubris.
  - mercer 10y ago
    > CFS was my brother's diagnosis, until it became lyme. A family member of mine was diagnosed with CFS and it was like the doctors she talked to were stuck in decade-old views of psychology. It was psychosomatic and as a result there wasn't much help she could get. Never mind that she went from one of the most (hyper-)active, traveling, bubbly people to being stuck in a wheelchair and sleeping much of the time; because it was in her head these very real effects somehow... weren't real enough. The first and most obvious issue, in my view, is that even if CFS is 'just between your ears', then that's still no less real of an issue and it is not helped by dismissal. The second issue that I hadn't really considered until your comment, and one that might be even more serious, is that this dismissal might actually prevent specialists from proper diagnosis. After a decade (or maybe even two, I don't even remember anymore) of low-energy existence, living on a pittance, having only the luck that many of her old students and friends kept taking care of her, after all that she went to some clinic somewhere in Asia (Singapore, I think) and while I'm not sure what the diagnosis was, it was apparently something relatively known (something related to vaccines she had before visiting Vietnam), treatable, and she was back to her old self in no time (a decade-or-so older, though). I'm wondering if more effort might have been made, and a solution found much sooner, had it not been so easy to dismiss her issues as 'psychosomatic'.
- throwaway_xx9 10y ago
  "try exercising" Actually that's very good advice, as expanding the lungs stimulates the nervous system similar to acupuncture.
- pritishc 10y ago
  Sounds very similar to what people have to go through for other chronic disorders such as Irritable Bowel Syndrome. The "it's in your head" bit has to be the most aggravating thing to hear, I know what it feels like. Add to this the rampant prescription of antibiotics and antidepressants, just to push the actual problem under the rug. It's very infuriating.
  - laichzeit0 10y ago
    Anecdotally, my Irritable Bowel Syndrome which I had lived with in a debilitating condition for about 10 years completely disappeared (5 years now) after I had my appendix removed. Since then I regard IBS as basically a label doctors throw at something they can't diagnose or don't understand.
- dammitcoetzee 10y ago
  I had something like that forever. Chronic fatigue, headaches, foggy memory, muscle pain. It all built up to actual chronic depression. The kicker is that im, as far as tests go, stupid healthy. I even exercise regularly. I've been to doctors on and off but the prescription was all sleep (get plenty), exercise(boxing six times a week), eat better (eat pretty well all things considered) Etc. Since I kept getting politely told it was in my head I kept up my slow stream of research and personal experimentation. I finally had a breakthrough earlier this year. I realized that my stomach was misbehaving more and more than it used to. Thought maybe I was lactose intolerant so I Stopped drinking milk. Holy shit did I feel better. Thought for sure that it was milk. Felt bad after having some cookies. Assumed it was the low milk content in them. Cut out anything sweet since most sweet things have milk. Cheated in Italy and had cheese and such. Felt fine. Kept cheating. Got a little worse. Had a bite of gelato. One bite. Instant gastronomical disagreement. Finally made the connection between sugar and my mood. Like any sugar. Even overly refined bread is risky. My favorite drink used to be lattes. Of which the steamed milk is practically pure sugar froth. Anyway. A very large portion of my symptoms have vanished. I can even go back and relate the mopey parts of my journal to particularly refined dietary swings (like when I'm in a high stress time with lots of prepared food) As soon as I get real health insurance again I'm gonna persue a dietary based inquiry rather than a mood and psychiatric based one. I imagine I can get even better results.
  - mrfusion 10y ago
    Maybe start monitoring your glucose levels?
    - dammitcoetzee 10y ago
      It was a little high for a while when I wasn't exercising. But then it went normal again fast with the return of healthy habits. I would like to order some of the nfc glucose monitors from Germany that stay on the arm a week at a time and map my blood sugar to get a better view. I really hate the needle for the regular kind.
- DanBC 10y ago
  > you're suffering from mental illness > when the doctor says "I think it's all in your head" > That sort of consistent dismissal/borderline victim-blaming I don't know if you're aware of it, but you're saying some pretty hateful things about mental illness here. Also, when someone thinks you have an illness with medically unexplained symptoms and they offer a psychological treatment they're not saying the pain isn't real, or that you're making it up. They're saying we don't know how to treat this, but here's something that has an evdence base that works for some people.
- nylonstrung 10y ago
  I've experienced the same response from doctors regarding an abnormal reaction to the drug finasteride, and it is extremely difficult to manage emotionally. They have never seen the problems I had yet have seen many people they alleged had psychosomatic issues so probabilistically it made sense on their end that I would probably be the latter. But many of them have dogmatically clung to the idea that since they don't understand how my problems could be caused by the drug it has to be impossible. The idea of psychosomatic diseases functions as catch-all that encompasses everything that can't be explained with our current understanding. Few clinicians I've worked with were willing to admit that their medical science is not advanced enough to explain my problem rather than calling me crazy, even though it was just one lifetime ago that antibiotics were even discovered.
j374 10y ago
As a near 10-year sufferer of severe ME/CFS, I can confirm this study has done unbelievable damage to the cause and should absolutely be retracted in full. Recent research has identified unquestionable, tangible and severe abnormalities in immune and metabolic function that are unique and consistent to ME/CFS sufferers, and this is no longer realistically up for debate. Most doctors though still dismiss the condition as psychological, and because of this (and even though the burden has been shown worse than other immune disorders like AIDS in many cases) funding is virtually non-existent. This study has been so widely disseminated and taught to medical professionals, the damage will take some time to undo unfortunately.
- Tycho 10y ago
  What is the latest thinking with respect to the cause of the condition, and also the causes of recovery? Has research advanced much in the last few years?
  - jomamaxx 10y ago
    "What is the latest thinking with respect to the cause of the condition" It's not really a 'condition' - rather, it's a series of symptoms they just lump together and give a name. They have no idea what it is, what causes it. It's very difficult to diagnose, other than patients are always 'tired'. And there are many different kinds of 'tired'. I thought I had it, but I wasn't sleeping enough and drinking too much red bull, not getting enough water, probably too much stress. Doctors had no clue. All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. But it was a really weird experience. Some people get 'it' bad. My bet is that there are probably a number of reasons that people get it - some of it is psychosomatic - and that it might have something to do with a messed up endocrine system - i.e. the system that regulates melatonin, insulin etc..
    - Tycho 10y ago
      How much were you sleeping?
TazeTSchnitzel 10y ago
It saddens me how bad science will be so quickly defended if it confirms preconceived notions that a marginalised group should be dismissed, and then whoever protests this will be slurred as opposing science, as if there could not possibly be a scientific basis to object to it. This is hardly the first time it has happened.
- Sideloader 10y ago
  +1000 Science has, for a growing number of Westerners, become a kind of secular religion complete with its own dogma and irrational adherents who put worship of science (or Scientism) ahead of reason and critical thinking.
- tremon 10y ago
  This, very much. The attitudes described in the paper really make my blood boil. From refusing to share research data on bogus grounds to dismissing patients as "unhinged", then publishing its own "revised research" just before being forced to release the raw data. The proper response from the scientific community should be to disqualify every study from Queen Mary University of London until the university owns up to its mistakes, instead of digging in.
deleted 10y ago
[deleted]
cpncrunch 10y ago
Just be aware that the author of this article is a writer who is basically "out to get" the PACE trial, and she has some slightly strange ideas about CFS (http://www.healthrising.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/ http://www.healthrising.org/blog/2014/05/02/constant-vigilan...). From what I can see from the reanalysis released by QMUL (http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_CFQ_analysis_final_8_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_... and http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_published_protocol_based_analysis_final_8th_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_publishe...), the main difference from the original trial was the "recovery" measure, which is a pretty arbitrary value anyway (as recovery can mean various things). However the average fatigue scores don't seem to be much changed from the original trial as far as I can see, and that is the more important result. A lot of people are out to kill PACE, but releasing lots of frothy press releases with the worst possible interpretation isn't terribly useful for anyone.
- sirmarglar 10y ago
  First, the article in STAT is not a press release...it's a reported commentary/opinion piece where the author has clearly done a lot of reporting. Second, setting a functional level on measure you're talking about is arbitrary. But the the PACE authors picked a very lo value for "recovery." And they dropped that level after beginning the trial - a very poor practice known as outcome switching. At the end, they defined "recovery" below the physical functioning level for most heart failure patients - and below their entry criteria. That is, a CFS patient could enter the trial, get worse, and get called recovered - all while functioning worse than a heart failure patient. Pretty shady stuff.
  - cpncrunch 10y ago
    >Second, setting a functional level on measure you're talking about is arbitrary Yes, and the PACE recovery paper does say this. >But the the PACE authors picked a very lo value for "recovery." How exactly is 1sd below the mean of the general population "lo"? >At the end, they defined "recovery" below the physical functioning level for most heart failure patients Again, it's 1sd below the mean of the general population. Congestive heart failure has a mean value of physical functioning around 1sd below the mean for the general population. The person who first threw out this "congestive heart failure" meme probably didn't understand statistics. >That is, a CFS patient could enter the trial, get worse, and get called recovered The point is that the entry criteria was an upper limit and the recovery criteria was a lower limit, so it makes sense that they're different. I don't think you can have patients who didn't improve being classed as "recovered" as recovery also included various other measures (e.g. not meeting Oxford criteria). The main point of the study was to show the differences in recovery between the treatment groups. The other point is that the recovery results weren't even in the PACE trial, they was in a second paper. The paper does mention that there is no agreed definition of recovery, and they were just trying to get a handle on it using various measures. Overall, apart from the recovery results (which are somewhat arbitrary) the PACE trial results are in line with all the other CBT trials. There are certainly problems with the PACE trial (the main one being that CBT and GET are based on dubious etiologies), so I think CFS advocates would be better off actually delving into the real problems with the treatments, rather than putting up these strawmen.
tomcam 10y ago
Western medicine is AWESOME for traumatic injuries. The state of the art moves forward at an impressively steady clip. But our grasp of chronic conditions like this is pathetic, and worse, physicians are usually very uninterested in exploring these conditions with patients.
- dhimes 10y ago
  Indeed. "Syndromes" are very hard because there's no real way to test for them. Once there is, the condition can be classified as a disease (or whatever) and progress can be made. It's very hard to make progress without being able to test well. And that is true across disciplines (I'm looking at you, Education). I think in the early days there was a lot of initial skepticism because, if there were real cases they were diluted by people complaining to their (chronically tired, overworked and stressed) doctors that they were tired. Doctors thoughts were, "welcome to the club." And there is a certain subset of the population who complain constantly about medical conditions- indeed it is the foundation of most conversation it seems- so with no good way to conclusively test for the condition it was often dismissed.

119 points by rch 10y ago

Apart from the article's importance in exposing some bad science, its author is skilled in narrative, in making an essay readable. A worthwhile read.

philipkglass 10y ago

I had a sibling who struggled with CFS for years. Even before this bad study came out the usual reaction from doctors was you're suffering from mental illness/try exercising/you're faking. It sounds almost like this study was constructed for the convenience of doctors so they could point to the publication and keep suggesting what they had already suggested. It's hard living with a debilitating medical condition that doesn't have good treatments or a clear cause. It's even harder when the doctor says "I think it's all in your head" instead of "sorry, we really don't know how to treat this yet." That sort of consistent dismissal/borderline victim-blaming from real doctors is what I think pushed my mom toward bogus alternative health practices. There appears to be nothing medically valid about chiropractors but at least they don't call you crazy just for telling them about the experiences you've been having.

salamisultan 10y ago
It's terrible. I have a similar condition due to chronic pain. I get told I'm a lazy good for nothing all the time by my parents. I've just accepted that most people won't understand.
- waspleg 10y ago
  I have MS. People can't/don't/won't empathize with things they can't see or understand firsthand. I could give work examples of being threatened illegally while on FMLA but posting this under this username is dangerous enough.
cpncrunch 10y ago
I don't think any doctor says "it's all in your head" or "you're crazy". Most doctors do think it is psychosomatic, which is very different (psychosomatic means the physical symptoms are real, vs imaginary). That still seems the most plausible explanation, from what I can see (having researched it, and also suffered from it myself).
- philipkglass 10y ago
  I shouldn't have put "it's all in your head" in quotation marks, because I wasn't there in person and I too doubt that a doctor uttered those literal words. There was however an attitude of skepticism/annoyance conveyed through a combination of words and actions. One example: sibling had become dangerously underweight due to difficulty eating/swallowing. There was eventually a barium swallow test. One of the nurses excitedly told sibling after the test revealed clear abnormalities something like "wow, I am sorry, there is something clearly wrong here." The previous attitude having revealed (even if not in so many words) that she believed sibling to be a faker wasting time. I don't know if CFS was even the right label for the cluster of symptoms. Even in infancy there were many more problems with getting sick than the other kids in the household experienced. Infections and a cluster of other symptoms that ended up labeled CFS grew really severe in adolescence through mid 20s, then seemed to (mostly) go away as mysteriously as it had come. It was nearly a decade of misery that never had any clear diagnosis. I've also seen a friend with lingering complications from third degree burns suffered 10+ years ago be treated pretty shabbily as she tries to keep her pain under control. Modern medicine in the US seems pretty darn good at treating acute problems with obvious causes and fixes. It seems to be pretty crappy at treating chronic issues, especially ones that don't have good diagnostic markers. If I ever end up in the hospital again I hope it's for a nice obvious problem like a broken leg.
  - rendaw 10y ago
    I have an unidentified repetitive stress injury (RSI) and doctors have universally tried some treatment, failed, then told me I'm simply working too much. This happened after I stopped all my hobbies and took a 30h/week job (flex time, with frequent breaks). The identifier RSI lends itself to this diagnosis. When the symptoms show signs of improving, the doctors immediately conclude "Well, you're getting better now, so just continue as you are now and we'll consider this resolved." An acquaintance suggested I overwork myself before going to the hospital so I don't risk being dismissed by a temporary improvement in my symptoms. I've had several sprains and a broken wrist that were resolved quickly and without complications. This article and your comments resonated with me.
wpietri 10y ago
That sounds awful. There's a phenomenon that I wish I had a name for. Or even a good description of. It's when people imagine that your issue is just something they've experienced, even when the magnitude is very different. E.g., when people who have been sad at some point tell clinically depressed people that they should just cheer up. When they tell somebody with an anxiety disorder that they should calm down. Or, as with your sibling and CFS sufferers that they should just get a little exercise and it'll all be fine. I can sort of forgive that in regular folk. But in doctors? It's shameful.
- wott 10y ago
  My folks are like that too. They never experienced any psychic or physic trouble at any point in their 70 years long life, so they cannot fathom that people may strongly suffer from any of these problems, which are in their opinion not real problems and can be solved with cheering up and making an effort, because that's how they solved their own 5-minute 'problems'.
  - BerislavLopac 10y ago
    > They never experienced any psychic or physic trouble at any point in their 70 years long life How can you tell?
  - wpietri 10y ago
    I cannot imagine growing up in a context like that. That must have been rough. I think you're right about the relationship between suffering and empathy, though. There have been some awful things in my life. But given the time to recover from them and really consider the experience, empathy has gotten much easier for me from them.
- dec0dedab0de 10y ago
  maybe false empathy? everyone with ADHD has gone through this too.
- ivanhoe 10y ago
  Yup, that's a problem with procrastination, too. Many people will dismiss it as just "laziness", heard it many times.
CydeWeys 10y ago
Even if it is an illness of the brain (and it might well be), it should still be treated seriously, like many other similarly serious illnesses of the brain. Schizophrenia is an illness of the brain too, but no one says "It's all in your head, just get over it" to the afflicted.
tribby 10y ago
awful. and relatable. CFS was my brother's diagnosis, until it became lyme. others take a psychiatric slant. "sorry, we really don't know how to treat this yet," or even "sorry, we're not really sure what it is, but we believe it exists" is somehow an impossible conclusion. the only thing shared by his GP, internist, CFS specialist, psychiatrist, and lyme specialist, really, is a kind of diagnostic hubris.
- mercer 10y ago
  > CFS was my brother's diagnosis, until it became lyme. A family member of mine was diagnosed with CFS and it was like the doctors she talked to were stuck in decade-old views of psychology. It was psychosomatic and as a result there wasn't much help she could get. Never mind that she went from one of the most (hyper-)active, traveling, bubbly people to being stuck in a wheelchair and sleeping much of the time; because it was in her head these very real effects somehow... weren't real enough. The first and most obvious issue, in my view, is that even if CFS is 'just between your ears', then that's still no less real of an issue and it is not helped by dismissal. The second issue that I hadn't really considered until your comment, and one that might be even more serious, is that this dismissal might actually prevent specialists from proper diagnosis. After a decade (or maybe even two, I don't even remember anymore) of low-energy existence, living on a pittance, having only the luck that many of her old students and friends kept taking care of her, after all that she went to some clinic somewhere in Asia (Singapore, I think) and while I'm not sure what the diagnosis was, it was apparently something relatively known (something related to vaccines she had before visiting Vietnam), treatable, and she was back to her old self in no time (a decade-or-so older, though). I'm wondering if more effort might have been made, and a solution found much sooner, had it not been so easy to dismiss her issues as 'psychosomatic'.
throwaway_xx9 10y ago
"try exercising" Actually that's very good advice, as expanding the lungs stimulates the nervous system similar to acupuncture.
pritishc 10y ago
Sounds very similar to what people have to go through for other chronic disorders such as Irritable Bowel Syndrome. The "it's in your head" bit has to be the most aggravating thing to hear, I know what it feels like. Add to this the rampant prescription of antibiotics and antidepressants, just to push the actual problem under the rug. It's very infuriating.
- laichzeit0 10y ago
  Anecdotally, my Irritable Bowel Syndrome which I had lived with in a debilitating condition for about 10 years completely disappeared (5 years now) after I had my appendix removed. Since then I regard IBS as basically a label doctors throw at something they can't diagnose or don't understand.
dammitcoetzee 10y ago
I had something like that forever. Chronic fatigue, headaches, foggy memory, muscle pain. It all built up to actual chronic depression. The kicker is that im, as far as tests go, stupid healthy. I even exercise regularly. I've been to doctors on and off but the prescription was all sleep (get plenty), exercise(boxing six times a week), eat better (eat pretty well all things considered) Etc. Since I kept getting politely told it was in my head I kept up my slow stream of research and personal experimentation. I finally had a breakthrough earlier this year. I realized that my stomach was misbehaving more and more than it used to. Thought maybe I was lactose intolerant so I Stopped drinking milk. Holy shit did I feel better. Thought for sure that it was milk. Felt bad after having some cookies. Assumed it was the low milk content in them. Cut out anything sweet since most sweet things have milk. Cheated in Italy and had cheese and such. Felt fine. Kept cheating. Got a little worse. Had a bite of gelato. One bite. Instant gastronomical disagreement. Finally made the connection between sugar and my mood. Like any sugar. Even overly refined bread is risky. My favorite drink used to be lattes. Of which the steamed milk is practically pure sugar froth. Anyway. A very large portion of my symptoms have vanished. I can even go back and relate the mopey parts of my journal to particularly refined dietary swings (like when I'm in a high stress time with lots of prepared food) As soon as I get real health insurance again I'm gonna persue a dietary based inquiry rather than a mood and psychiatric based one. I imagine I can get even better results.
- mrfusion 10y ago
  Maybe start monitoring your glucose levels?
  - dammitcoetzee 10y ago
    It was a little high for a while when I wasn't exercising. But then it went normal again fast with the return of healthy habits. I would like to order some of the nfc glucose monitors from Germany that stay on the arm a week at a time and map my blood sugar to get a better view. I really hate the needle for the regular kind.
DanBC 10y ago
> you're suffering from mental illness > when the doctor says "I think it's all in your head" > That sort of consistent dismissal/borderline victim-blaming I don't know if you're aware of it, but you're saying some pretty hateful things about mental illness here. Also, when someone thinks you have an illness with medically unexplained symptoms and they offer a psychological treatment they're not saying the pain isn't real, or that you're making it up. They're saying we don't know how to treat this, but here's something that has an evdence base that works for some people.
nylonstrung 10y ago
I've experienced the same response from doctors regarding an abnormal reaction to the drug finasteride, and it is extremely difficult to manage emotionally. They have never seen the problems I had yet have seen many people they alleged had psychosomatic issues so probabilistically it made sense on their end that I would probably be the latter. But many of them have dogmatically clung to the idea that since they don't understand how my problems could be caused by the drug it has to be impossible. The idea of psychosomatic diseases functions as catch-all that encompasses everything that can't be explained with our current understanding. Few clinicians I've worked with were willing to admit that their medical science is not advanced enough to explain my problem rather than calling me crazy, even though it was just one lifetime ago that antibiotics were even discovered.

j374 10y ago

As a near 10-year sufferer of severe ME/CFS, I can confirm this study has done unbelievable damage to the cause and should absolutely be retracted in full. Recent research has identified unquestionable, tangible and severe abnormalities in immune and metabolic function that are unique and consistent to ME/CFS sufferers, and this is no longer realistically up for debate. Most doctors though still dismiss the condition as psychological, and because of this (and even though the burden has been shown worse than other immune disorders like AIDS in many cases) funding is virtually non-existent. This study has been so widely disseminated and taught to medical professionals, the damage will take some time to undo unfortunately.

Tycho 10y ago
What is the latest thinking with respect to the cause of the condition, and also the causes of recovery? Has research advanced much in the last few years?
- jomamaxx 10y ago
  "What is the latest thinking with respect to the cause of the condition" It's not really a 'condition' - rather, it's a series of symptoms they just lump together and give a name. They have no idea what it is, what causes it. It's very difficult to diagnose, other than patients are always 'tired'. And there are many different kinds of 'tired'. I thought I had it, but I wasn't sleeping enough and drinking too much red bull, not getting enough water, probably too much stress. Doctors had no clue. All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. But it was a really weird experience. Some people get 'it' bad. My bet is that there are probably a number of reasons that people get it - some of it is psychosomatic - and that it might have something to do with a messed up endocrine system - i.e. the system that regulates melatonin, insulin etc..
  - Tycho 10y ago
    How much were you sleeping?

TazeTSchnitzel 10y ago

It saddens me how bad science will be so quickly defended if it confirms preconceived notions that a marginalised group should be dismissed, and then whoever protests this will be slurred as opposing science, as if there could not possibly be a scientific basis to object to it. This is hardly the first time it has happened.

Sideloader 10y ago
+1000 Science has, for a growing number of Westerners, become a kind of secular religion complete with its own dogma and irrational adherents who put worship of science (or Scientism) ahead of reason and critical thinking.
tremon 10y ago
This, very much. The attitudes described in the paper really make my blood boil. From refusing to share research data on bogus grounds to dismissing patients as "unhinged", then publishing its own "revised research" just before being forced to release the raw data. The proper response from the scientific community should be to disqualify every study from Queen Mary University of London until the university owns up to its mistakes, instead of digging in.

deleted 10y ago

[deleted]

cpncrunch 10y ago

Just be aware that the author of this article is a writer who is basically "out to get" the PACE trial, and she has some slightly strange ideas about CFS (http://www.healthrising.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/ http://www.healthrising.org/blog/2014/05/02/constant-vigilan...). From what I can see from the reanalysis released by QMUL (http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_CFQ_analysis_final_8_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_... and http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_published_protocol_based_analysis_final_8th_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_publishe...), the main difference from the original trial was the "recovery" measure, which is a pretty arbitrary value anyway (as recovery can mean various things). However the average fatigue scores don't seem to be much changed from the original trial as far as I can see, and that is the more important result. A lot of people are out to kill PACE, but releasing lots of frothy press releases with the worst possible interpretation isn't terribly useful for anyone.

sirmarglar 10y ago
First, the article in STAT is not a press release...it's a reported commentary/opinion piece where the author has clearly done a lot of reporting. Second, setting a functional level on measure you're talking about is arbitrary. But the the PACE authors picked a very lo value for "recovery." And they dropped that level after beginning the trial - a very poor practice known as outcome switching. At the end, they defined "recovery" below the physical functioning level for most heart failure patients - and below their entry criteria. That is, a CFS patient could enter the trial, get worse, and get called recovered - all while functioning worse than a heart failure patient. Pretty shady stuff.
- cpncrunch 10y ago
  >Second, setting a functional level on measure you're talking about is arbitrary Yes, and the PACE recovery paper does say this. >But the the PACE authors picked a very lo value for "recovery." How exactly is 1sd below the mean of the general population "lo"? >At the end, they defined "recovery" below the physical functioning level for most heart failure patients Again, it's 1sd below the mean of the general population. Congestive heart failure has a mean value of physical functioning around 1sd below the mean for the general population. The person who first threw out this "congestive heart failure" meme probably didn't understand statistics. >That is, a CFS patient could enter the trial, get worse, and get called recovered The point is that the entry criteria was an upper limit and the recovery criteria was a lower limit, so it makes sense that they're different. I don't think you can have patients who didn't improve being classed as "recovered" as recovery also included various other measures (e.g. not meeting Oxford criteria). The main point of the study was to show the differences in recovery between the treatment groups. The other point is that the recovery results weren't even in the PACE trial, they was in a second paper. The paper does mention that there is no agreed definition of recovery, and they were just trying to get a handle on it using various measures. Overall, apart from the recovery results (which are somewhat arbitrary) the PACE trial results are in line with all the other CBT trials. There are certainly problems with the PACE trial (the main one being that CBT and GET are based on dubious etiologies), so I think CFS advocates would be better off actually delving into the real problems with the treatments, rather than putting up these strawmen.

tomcam 10y ago

Western medicine is AWESOME for traumatic injuries. The state of the art moves forward at an impressively steady clip. But our grasp of chronic conditions like this is pathetic, and worse, physicians are usually very uninterested in exploring these conditions with patients.

dhimes 10y ago
Indeed. "Syndromes" are very hard because there's no real way to test for them. Once there is, the condition can be classified as a disease (or whatever) and progress can be made. It's very hard to make progress without being able to test well. And that is true across disciplines (I'm looking at you, Education). I think in the early days there was a lot of initial skepticism because, if there were real cases they were diluted by people complaining to their (chronically tired, overworked and stressed) doctors that they were tired. Doctors thoughts were, "welcome to the club." And there is a certain subset of the population who complain constantly about medical conditions- indeed it is the foundation of most conversation it seems- so with no good way to conclusively test for the condition it was often dismissed.