Analysis of chronic fatigue syndrome study casts doubt on published results
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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.
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.
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.
Several of the general / vague symptom conditions are similarly diagnosed.
Took 9 years, and 4 doctors till someone went, "Huh... Let's get you an MRI."
Still not 100% diagnosed, but its in the fibro family. Which has its own issues with doctors disbelieving its existence.
I struggle, looking at the medical world.
Psychology is a really young science. Yet, a lot of the unknowns get passed to it, rather than an admittal that "we don't know".
It might be fear, (getting sued), or arrogance (we know just about everything), or another reason.
The result is the same.
You have victims who don't have the knowledge required to advocate for themselves, and a tendency for the industry to place the entirety of the responsibility on them. [0].
Its hard. So hard.
Where to draw the line, of whose responsible, and what ethical considerations a researcher should take into account, is a hard task. One that I am certainly not capable of... But it needs greater thought.
[0] That is my experience, in my town, in my nation. Its anecdotal, and should be taken with a grain of salt.
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.
How can you tell?
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.
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.
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'.
Add to this the rampant prescription of antibiotics and antidepressants, just to push the actual problem under the rug. It's very infuriating.
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.
> 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.
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.
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..
But there seems to be one particular cause, not that anyone seems to know for sure what that is, that produces a set of symptoms that is more specific than generalized fatigue. The symptom sometimes called "post-exertional malaise" is, AFAIK, unique to this disease. One doesn't necessarily feel tired while exercising; instead, the tiredness (often accompanied by headaches and sometimes other symptoms) hits hours or even a day after the exercise.
So when the OP writes "Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits", I know she has the same thing I do, because that's my experience exactly. Whatever you had, in contrast, sounds like it had some other cause.
You didn't have it, by any current definition of the disease (Canadian/Fukuda criteria). "Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one.
I'm not sure how you can determine that from the parent comment.
>"Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one.
The parent comment never said he/she only had fatigue. In fact the mention of "symptoms" would kind of imply that fatigue wasn't his/her only symptom, wouldn't it?
Ergo 'I had it' - because it's a condition defined by it's symptoms.
The kind of 'fatigue' I had was very odd: it was not 'sleepy tired' and it was not 'energy tired'. I wasn't in need of a nap, and if I went to the gym, I kept my regular pace no problem.
It was a weird tiredness that hit several times a day, and made me not want to do much.
Granted, it was more mild than others.
Granted, I may not have 'had' whatever causes it in others.
Also - I did take a lot of 'pro-biotics' as well, basically it supposedly restores the bacteria in your gut. But it's not particularly scientific.
I can tell you it was an odd feeling, unlike any other.
There's no consensus yet, but there is a bunch of interesting research going on. Most of the theories I've seen fall in two broad categories:
- An issue with the mitochondria, the energy production in the cells, that for some reason produce just a fraction of the energy they normally produce. So the fatigue is a result of insufficient energy production. I'm partial to this class of theories, since it seems to match so well with my experience. I particularly like the one I saw just a few days ago, explaining CFS/ME as a kind of evolutionary hibernation where the cells shut down in response to a real or imagininary threat, in the hope of outlasting the threat rather than fighting it [1].
- An issue with the immune system, which for some reason remains hyperactive even when there is nothing to fight as far as anyone can tell. So the fatigue is a result of the immune system consuming an inordinate amount of energy, just like if you were having the flu. According to these theories it might be an autoimmune disease where the immune system is effectively fighting ghosts [2], or the immune system might be busy with an actual threat that the standard tests don't pick up [3].
I don't know if both groups of theories can be true at the same time - e.g. if one is a cause and the other is an effect, or maybe they are both effects - or whether we're talking about different subsets of patients with different underlying causes.
Unlike my sibling post, I think it's a genuine condition. I agree that the current diagnostic criteria basically boil down to "unreasonably fatigued and we don't know why". But I've met a number of other people with the same diagnosis, and there are too many similarities for us to be just an arbitrary collection of tired people. Maybe there are two or three distinct subgroups with different underlying causes, maybe there are a handful that has been misdiagnosed. But I'm sure there's something there.
For recovery, we don't know yet. A number of things have worked for a number of different people, some people eventually get better on their own. Long term and in general, we will hopefully know more in a few years.
[1] http://www.healthrising.org/blog/2016/09/01/metabolomics-nav...
[2] http://www.tv2.no/a/3615631 - cancer drugs help for some patients according to study (by killing off the immune system)
[3] https://www.sciencedaily.com/releases/2016/06/160627160939.h... - gut bacteria
Someone I know who has ME describes it as feeling like they have the flu all the time.
In my case that's triggered by too much activity. I've gradually learned to stay within my limits most of the time, so these days I don't have the flu feeling as often as I used to. Although I have to limit activity to a handful of hours per week in order to keep it at bay.
1. https://drive.google.com/file/d/0B_Dn3IXWlI9fR01QamdNeUNqZjA...
- the study hasn't done "unbelievable damage", unless you're firmly in the camp that CFS must be organic.
- "severe abnormalities in immune and metabolic function" doesn't rule out psychosomatic causation (as the stress system also controls the immune system and mitochondria, for example).
- there is no "unique and consistent to ME/CFS sufferers" dysfunction, except perhaps in HPA axis (the main stress system) responsiveness (but even this is somewhat up for debate).
- Saying it is psychological is not "dismissing" it. From what I can tell (having suffered from it, and researched it), psychosomatic causation does seem the most plausible. The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.
What does "organic" mean in this context? Given that it's an affliction of humans, I don't really understand how it could be non-organic.
(this is the medical definition of "organic", which is completely different to the chemistry definition, which I think you confused it with).
This is at odds with the current scientific consensus. Table 1 of "Myalgic encephalomyelitis: International Consensus Criteria" (2011) describes one primary dysfunction (postexertional neuroimmune exhaustion) and several secondary dysfunctions [1].
Furthermore, post-exertional malaise, which is similar to postexertional neuroimmune exhaustion, has been described as a "hallmark" symptom of ME/CFS at least as far back as 2007 [2].
[1] http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011....
[2] http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07
Neuroimmune exhaustion has not been objectively defined. The ICC says "rapid" malaise, but it's typically 24 or 48 hours later.
Fair enough.
> The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.
Based on your research, what are the cures for "chronic stress"? The treatments discussed in the PACE paper (CBT, GET, etc.)? I'm genuinely interested -- my sister was diagnosed with CFS over a year ago and has made little progress since then.
Well the first thing is to obviously get rid of the chronic negative stress. However even then, many people don't recover (hence the fact that they have long-term CFS, rather than a temporary burnout which they then recover from after removing the stress).
As for why people don't always recover after removing the negative stresses? I think there are a couple of possibilities:
[1] Negative stress from the illness itself (a vicious circle).
[2] The brain gets stuck in the fatigued state, until it gets a "kick" out of it, in the form of a positive stressor. (Basically the fatigue state is a protection mechanism against negative stress that the organism can't cope with, and it requires evidence of a positive development in the future outlook in order to remove the "brakes").
Even though I suffered from CFS, it's hard to pin down exactly which one makes most sense. However the effective cures seem to address both (i.e. getting the patient to do a positive activity). (I should clarify that there are no truly effective "official" cures, only unofficial ones that people like me and others figure out by ourselves).
The problem is that CBT and GET aren't based on valid etiologies of the illness, so at best they might be a placebo that just happens to kick the person out of the exhaustion state on some occasions. The problem is that CBT and GET can be inherently stressful (especially if the person is convinced of an organic etiology), which will likely just make things worse.
Once I started practicing meditation, I felt a slow improvement in my condition, and most of the symptoms had sufficiently eased after 10 months that I was living a fairly normal life again. I did experience a couple of mild relapses years later (both times by not easing up on intense exercise when suffering a throat infection), but the symptoms were more mild and I recovered each time after about 4 months.
I an not advocating meditation as a cure, but it did make living with ME more bearable.
If you didn't know it was caused by a virus, you could say the same thing about having the flu, most autoimmune diseases, etc. ME/CFS causes many consistent and characteristic symptoms that aren't fatigue, and most other chronic diseases cause fatigue. Why should ME/CFS be psychosomatic any more than any other illness for which we don't know the cause?
Because, as I mentioned in my parent comment, the "symptoms, abnormalities, triggers and cures" match stress, but the flu does not. (Flu and other infections typically have the opposite, i.e. increased HPA axis rather than reduced, for example).
But the exercise dysfunction is not consistent. Sometimes it's immediate, sometimes it's 24 or 48 hours later.
>Generally, if we exercise more than a small amount we are literally bedridden (sometimes hospitalised) for days or weeks
That's the problem - it's not always like that for all patients.
>Psychological illnesses generally respond very well to exercise
Not exhaustion from stress. (And it's not entirely psychological, there are various types of stress, some physical). You have to get out of this mindset of physical vs psychological. Stress is both.
>low NK cells for example
That is not consistent, and it is also a feature of stress (which significantly affects NK cells).
>recently the metabolomics study.
which has not been replicated, and which is showing different results to another metabolics study just released (see discussion on healthrising and phoenixrising).
This is hardly the first time it has happened.
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.
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.
From what I can see from the reanalysis released by QMUL (http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_... and 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.
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.
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.
The science of PACE isn't quite as bad as the haters are making out. In fact some of them are guilty of pretty shocking misunderstandings of basic statistics. See my reply to sirmarglar.
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.