
Chronic fatigue syndrome - colinprince
http://www.economist.com/blogs/babbage/2011/07/chronic-fatigue-syndrome
======
ScottBurson
In March of last year I was in pretty good shape. I was running 1.8 miles
three times a week -- not a lot of miles by hardcore runner standards, but
more than most middle-aged men. The previous September I had competed in my
first race, and had turned in a very respectable time, about the 64th
percentile among the men. And I've always been active, running, cycling, and
playing table tennis. It's very important to me.

Anyway, in the third week of that March I had a flu-like illness. It wasn't
too different from the dozen or two other such illnesses I've had in my life,
although it was perhaps among the more severe, lasting a full week.

After giving myself a couple of weeks to recover I attempted to resume my
previous level of activity. But I was beset by a persistent malaise and severe
headaches. After a few weeks it became clear that anytime I exercised,
somewhere between 12 and 48 hours later I would have these symptoms.

To make a very long story short, I eventually figured out that these were
common symptoms of CFS, a condition I had heard of (20 years ago I knew
someone who had it) but had known next to nothing about. Further poking around
on the Web led me to think that it was probably caused by an Epstein-Barr
infection.

While I had originally hoped it would get better on its own, eventually it
became clear that it was getting worse. I asked my doctor for a prescription
for valacyclovir, an antiviral drug, and he agreed. I started taking it at the
beginning of (this) March. It has helped quite a bit, though I'm not
completely cured -- I've been exercising some, and I still get the symptoms
afterwards, but they're not nearly as severe.

I'm relating all this to explain why I think it's ludicrous to suggest that
this illness is hysterical. I was indeed under a lot of stress at the time I
contracted it; I was between jobs, my previous job having ended in a
particularly stressful way (it was a startup that ran out of money). If you
wanted to say that my stress level was a factor in the etiology of the
infection, I'd be the first to agree. But that's very different from saying
it's a mental illness.

There is a certain institutionalized arrogance in the medical establishment.
Some doctors -- not all! -- when faced with a patient whose symptoms they
can't explain or treat can't stand to admit that modern medical science still
doesn't know everything about the human body. So rather than admitting their
ignorance and powerlessness, which would be hard on their egos, they say the
disease doesn't exist. Now, which of us has the mental problem?

I don't begin to condone death threats. There's no excuse for such behavior.
But there's also now plenty of evidence for an organic cause of many cases of
CFS. The working hypothesis, as I understand it, is that it's a viral
infection of the brain, where the virus is a member of the herpes family,
usually either Epstein-Barr or human herpesvirus 6. Hence the use of
valacyclovir or valgancyclovir, which were invented to treat herpes
infections.

BTW, before trying valacyclovir (and indeed before realizing that I had CFS) I
did try other medications, which did nothing. I seriously doubt my improvement
can be attributed to the placebo effect.

So although, again, I don't condone death threats, I also have very little
patience with those who, in 2011, are still putting forth what by now is a
discredited theory, one that doctors should have been too ashamed to advance
in the first place.

(Someone is going to point out that some patients have felt somewhat better
when given antidepressants. Let me tell you, this is a depressing disease, so
I understand how that might happen. I have not heard of anyone being cured
solely by antidepressants.)

~~~
ZoFreX
1) You diagnosed yourself with CFS

2) Your condition matches a number of viral and post-viral conditions which
would explain why your chosen treatment worked

Sorry, but your post is in no way, shape or form an argument that CFS is not a
mental disorder.

I've been diagnosed with CFS. It sucks. A lot. I still think it's a mental
illness. The difference between me and most people is that I don't think that
makes it "fake" or "not real" in any sense at all, but I'm sure if you told
your boss you were too tired to get out of bed because of a mental illness,
you'd be laughed at. So what? The same could apply with major depression, less
people would argue that depression doesn't exist.

People like you are holding us back, people using reasoning similar to yours
are justifying this campaign of harrassment upon researchers that are just
trying to find the _truth_. They're not trying to prove people with CFS are
lazy, or making it up, or even that it's all in the head - they want what
everyone who has the disease _should_ want - to find out what it is.

An additional warning to anyone wanting to compare anecdotes: CFS is a
"diagnosis of exclusion". This is a fancy way of saying that actually, we
don't have a definition for this disease. It's entirely possible that multiple
poorly-understood diseases with similar symptoms are leading to a single
diagnosis ("CFS") at present, which complicates any effort to share
experiences.

On the front of these people sending in death threats... I know quite a few
people that claim to have CFS. Some of them quite clearly do not have the same
thing as me, were not diagnosed by doctors, and would resist quite violently
any attempts to re-classify them. They enjoy having a label they can hide
behind, I guess.

Lastly I want to say: This is a real thing, or at least, there are things we
don't understand and this is the label that gets put on it. I don't know for
sure what I had, I don't know if it was physical or mental, but it was real.
I've encountered many people, including licensed doctors, that mock and
denigrate people with this condition, and if you are one of those people I
would implore you to rethink your position. We know very little about the
connection between our physical and mental well-being, but at this point it's
incredibly clear that there is a very strong link, and that mental issues can
cause very real, physically observable and empirically testable problems.

~~~
cfshacker
"I still think it's a mental illness."

Why? What does "mental illness" mean to you? You go on to say it's a diagnosis
of exclusion, and you don't know for sure what you had/have -- isn't that the
point?

I guess we need to be careful with our definitions of "mental" in "mental
illness". For example, major depression responds rapidly to ketamine
([http://www.newscientist.com/article/dn9696-ketamine-
relieves...](http://www.newscientist.com/article/dn9696-ketamine-relieves-
depression-within-hours.html)), and other NMDA antagonists may prove
clinically useful in treating that "mental" illness.

However, there's also the "maladaptive beliefs" side of "mental illness" which
may be applicable to depression -- change how you think, change how you feel
emotionally -- but their application to CFS as anything other than a mild
management technique is absurd and has been proven time and again to be a dead
end. Nevertheless, the implication from the psycho-social CFS school is that
if you change how you think about your illness, you can think yourself out of
your condition. That's absurd. They talk in terms of validation, needing
respect, and saving face by coming up with symptoms; i.e. that you, the
patient, are neurotic. It's pernicious nonsense.

The focus on viral aspects is far from a dead-end - see the work of Dr Martin
Lerner and his use of valacyclovir and valgancyclovir, for example.

There was also research done in Australia that CFS may be a "hit and run"
brain injury cause by a virus or viruses -- is a physically damaged brain a
case of mental illness or just plain illness? Either way, it's not something
that changing "maladaptive beliefs" will solve.

~~~
ZoFreX
In my case I mean, what I had was almost certainly mental.

I strongly agree with you that mental illnesses have a very strong physical
component, if not being completely physical. I think it's incorrect that they
are sometimes thought of as being "imaginary" or "in your head". You don't
tell someone their heart disease is "just in your heart", and you certainly
wouldn't tell someone with a brain tumour to buck their ideas up!

> their application to CFS as anything other than a mild management technique
> is absurd and has been proven time and again to be a dead end

Given that CFS is not defined, I would strongly challenge anyone claiming that
such-and-such is "proven" with regards to it.

I know the viral aspects are a big thing, at one point my doctor suspected I
had post-viral fatigue syndrome (which affects people who had mono that just..
sticks around a bit after?)

Another interesting anecdote of mine is that one of my friends "had CFS" and
was "cured"... she had anaemia. Like, basic, common-or-garden iron defeciency.
You would not believe how many health officials she went through before a
chance conversation with an ex-nurse led to the correct diagnosis. So I do
wonder how many poor souls out there are suffering from crippling fatigue that
could be quite simply solved!

~~~
ScottBurson
> one of my friends "had CFS" and was "cured"... she had anaemia

Just so we're clear, this point is not in debate at all. There are indeed many
possible causes of fatigue which need to be looked into. I'm sure many of them
get lumped into the catch-all category of CFS before someone realizes there is
a less obscure cause than EBV/HHV-6 infection.

On the other hand, my case was characterized by two phenomena which, AFAIK,
are quite specific for EBV/HHV-6. (And yes, I mean "specific" in the
statistical sense: they are rarely associated with any other condition, and
thus, as diagnostic cues, would generate few false positives.) The first is
the fact that my symptoms began after a flu-like illness, and were clearly not
present before that illness. The second is that I would have the symptoms as
much as 48 hours _after_ exercise. I'm not a doctor or medical researcher, but
I have yet to hear of another disease with that property. Many illnesses make
exercise unpleasant, but they tend to do so at the time the exercise is taking
place, or right afterwards. A 48-hour delay is bizarre. (My SWAG(†) is that it
has to do with the release of growth hormone during the post-exercise recovery
process. Growth hormone triggers neurogenesis, among other things, and I
suspect that the virus is somehow taking advantage of or interfering with
neurogenesis. Just a thought.)

(† SWAG = Scientific Wild-Assed Guess)

> Given that CFS is not defined, I would strongly challenge anyone claiming
> that such-and-such is "proven" with regards to it.

Fair enough, but cfshacker also has a point: some doctors have tried for years
to treat CFS as a "mental illness", with very limited success.

Now to the main point:

> I strongly agree with you that mental illnesses have a very strong physical
> component, if not being completely physical.

Well, if that's where you're coming from, why even use the term "mental"? If
you think that your condition was rooted in a neurotransmitter imbalance or
something like that, why not just say that? Then we're not debating whether it
had an organic cause, we're just debating what _kind_ of organic cause.

The irony is, I absolutely do believe in psychosomatic illness. But I believe
its causes are _emotional_. If the cause is actually physical, it seems to me
this contradicts the very definition of "psychosomatic".

EDIT: formatting.

------
cfshacker
Psychological theories for CFS have been around for decades and have yielded
very little by way of testable hypotheses or treatment, despite millions of
dollars spent on research.

Wessley's highly controversial views and work have been subject to much
criticism -- absolutely none of which is reflected in this disappointing puff
piece. There's plenty of more news-worthy stuff that's been happening in the
CFS world (both good and bad) in recent times than years-old revelation that
people don't much like Simon Wessley.

The core problem is simply that this conclusion isn't true: "But a psychiatric
explanation would not delegitimise CFS. And it might improve treatment and
help patients get better, at last." Wessley's theories have been studied. They
offer very little to very sick people. They don't get better. It does
delegitimise the extremely severe nature of the illness. If they did
legitimise, and -- far more importantly -- cure sick patients, great! That
would be wonderful. But they don't. We know they don't. Shame on the Economist
for not saying so.

Psycho-social explanations of CFS seem to be nothing more than "hysteria"
rebadged for more modern times. It's easier to say "Well, maybe it's your
fault!" than to accept the hopelessness of not knowing what's going on.

Actually, that's not true, there has been (and is) plenty of work on the
physical abnormalities. For those interested in current happenings in the CFS
world, it's worth following: <http://phoenixrising.me/> .

~~~
vsync
Your other objections are interesting and I want to research them further. But
I wonder how this comment doesn't prove the editorial's point:

> It does delegitimise the extremely severe nature of the illness.

How does merely positing a psychosomatic origin for the syndrome
"delegitimise" its "extreme severity"? Or is it you thinking that mental
health is somehow less important than physical health, which doesn't even make
sense considering the brain is an organ too?

> Psycho-social explanations of CFS seem to be nothing more than "hysteria"
> rebadged for more modern times. It's easier to say "Well, maybe it's your
> fault!" than to accept the hopelessness of not knowing what's going on.

Uh huh. And it's easier to take the idea of mental health being relevant as a
personal insult, like people are saying it's one's own fault, than to accept
the hopelessness of not knowing there's a magical cure as soon as the doctors
discover the sole physical cause.

Again, I really want to read further on research being done on CFS and other
subjective and idiopathic syndromes. It's interesting from a medical and
social standpoint and I'm close with several people who suffer with such
issues. But I've also seen their blind spots related to the issue. I'd like to
hear more on the work that's disproven psychiatric origins of the syndrome,
since while the editorial touched on Wessley it seemed more to be talking
about the need to explore all possible causes and solutions of a problem
affecting many.

~~~
cfshacker
Thanks! Generally speaking, I think you have to understand the nature of
"mental" illness that's being discussed. Depression, for example, is taken
seriously as a "mental" illness but is quite comfortably discussed in medical
terms (hence SSRI's, NDMA antagonists, etc); as well as Cognitive Behavior
Therapy where it's been reasonably demonstrated that improving your thought
patterns can improve your emotional wellbeing. I'd describe this as the modern
form of "mental illness".

The kind of "mental illness" we're talking about here with CFS & the
Wessely/UK psychiatry school of though though is old school _neurosis_. You're
not sick, you're neurotic. You want to save face by coming up with symptoms.
You need validation from a doctor. You remain sick because of the 'secondary
gain' you receive in terms of attention. You need to avoid personal
responsibility and blame, and so on.

It's horrible stuff. For quotes from the horse's mouth, see:
[http://www.cfsinfo.be/Documentatie/AA%20%20Strijd%20classifi...](http://www.cfsinfo.be/Documentatie/AA%20%20Strijd%20classificatie%20ME/Views%20of%20Simon%20Wesseley.htm)
, and hopefully you can see why his views have been so controversial.

It's true that CFS is something of a catch-all for a variety of illnesses,
from post-viral syndromes (see Dr Lerner), hypothyroid problems, diet and gut-
related illnesses (undiagnosed coeliac patients, for example), neurological
syndroms (some people are helped by neurofeedback, and Jay Goldstein wrote
some fascinating books on the neuroscience of CFS/ME), hormone disorders (e.g.
adrenal, but also others), possible retroviruses (XMRV looks 95% unlikely, but
a handful of people did well on antiretrovirals), possible hit-and-run viral
brain injury (as Australian research has indicated) and on and on. Hell, I
recently came across a guy who recovered almost immediately and totally after
30 years of debilitating fatigue by taking a relatively recent IGE-binding
drug (Xolair). Plus, there's the potential of an underlying viral or other
cause that in turn causes a differing array of symptoms.

The problem is not just that we don't know what CFS/ME is (to the extent that
it's a uniform thing), but we're pretty lousy at dealing with all the other
surrounding illnesses as well. (Hypothyroid is a great case in point, IGE is
relatively new, etc etc,.)

What's pretty clear, however, is the vast, vast majority of these patients,
whether suffering CFS for known or unknown reasons, are not neurotic, and for
The Economist, or anyone, to insist that "neurosis" should be taken seriously
as a basis for medical diagnosis and treatment in 2011 is simply appalling.

edit: ugh, Wessely, not Wessley. my bad.

~~~
ScottBurson
Wow -- those quotes are astonishing. Well, it doesn't surprise me that
nutcases like Wessely are out there. But how does he get taken seriously???

------
stanleydrew
Am I the only one who finds the writing in the economist to be about as deep
as a 9th-grader's book report? I mean I basically learned nothing from this
article.

~~~
chubot
No, I totally don't get the Economist. People always tell me to read it. Smart
people. Then I read it, and it's like a 9th grader's book report, as you say.
It's a hair better than Time magazine or Newsweek.

~~~
w1ntermute
Well, it _is_ called _The Economist_. If you expect to read intelligent
analysis of medical conditions, I suggest you look elsewhere. _The Economist_
is good at providing analysis of economical and business matters. I read it
for those components and ignore the rest.

~~~
uriel
Their coverage of world politics and other topics is also very good. Only the
Science and Technology section is appallingly and depressingly bad.

~~~
w1ntermute
Then again, that may just be a result of us knowing a lot about Science and
Technology. I wonder if those who are experts in economics and those other
fields _The Economist_ supposedly covers with skill think the same things
about it covers their area of expertise.

~~~
uriel
I wonder the same, but from people I trust and what I do know, it seems that
they are better than pretty much anything else being published this days.
Their Science and Tech section is clearly not better than alternatives, and in
many ways much worse.

------
konstruktor
The problem is not this researcher doing his research. The scientific process
can deal with several opinions on a topic, since the better theory will
eventually yield better results, more publications and more acceptance in the
global scientific community. Everything should be fine.

But he's not just a part of the global scientific community, but also a
researcher at a prestigeous university in the UK, where the poltical climate
of the last few years has happily called everything off mainstream antisocial.
The UK is a country where there was a serious discussion about not calling
obese people obese anymore, because it is not insulting enough, but that one
should call them fat. In such an environment, a theory among many, stating
that CFS is caused by mental illness, can easily be spun into CFS sufferers
just being lazy folks who don't want to work, because science says so.
(Ignoring that mental illnes, like a physical illness, is actual illness and
not a bad character trait)

This is a problem with the UK, not with this researcher.

~~~
ZoFreX
I've had CFS and I still find many of the "sufferers" completely insufferable.
I don't know if this is a UK phenomenon, a western phenomenon, or just a thing
that people do, but the majority of people _who choose to disclose to me_ that
they have a mental illness are self-diagnosed. CFS is one of those things
(like ADHD and Asperger's) that is very appealing to people who have certain
problems. I don't think this disease will be taken seriously until we actually
have diagnostic criteria, proper names, proper understanding... Overall,
acceptance of mental issues as real problems is definitely growing in this
country.

------
savemylife
This is my current diagnosis, for those who might have been following my story
from over a year ago (<http://news.ycombinator.com/item?id=1399450>). I've
been wanting to publish an update to this story on HN, but I'd been hoping for
better news first.

My last doctor (a very good, well-known Rheumatologist in my area) spent a
long time working with me. After months of trying everything he knew, he put
it to me like this:

* You have Chronic Fatigue Syndrome. Name sucks, but that's what it's called right now.

* What you have is real, it's not "in your head".

* A typical outcome is that you will start to feel better when you turn 50 or 60. In other words, my best outcome is to hang on for another _ten to twenty years_ and hope that I feel better then.

I've been dealing with this since college, but this is the year that I finally
had to admit I was failing, and had to quit my job.

~~~
ScottBurson
You don't mention looking into the EBV/HHV-6 possibility. I urge you to
investigate it immediately. Here's Dr. Martin Lerner's Web site:

<http://www.treatmentcenterforcfs.com/>

He recommends a collection of tests which could confirm a diagnosis of EBV or
HHV-6. (My doctor and I agreed to skip the tests because my symptoms were not
nearly as severe as yours and the tests are not quite as reliable as one would
like; it seemed simpler just to start me on valacyclovir and see what
happened. But for a more severe case like yours, the tests are probably a good
idea, I would think.)

------
gallamine
When I was 9 years old I developed a low-grade fever for several (9 - 12)
months. During that time I was frequently in the Dr.'s office trying to find a
reason. None was found. After that year, I always called myself chronically
exhausted. Nothing seems to help. I've tried blue/green algae, homeopathic
stuff, essential oils, fast food diets, regular exercise, full vegan diet, and
so on. Nothing has helped. I've been to several doctors since, with no
apparent cause ("take a multivitamin", or "take vitamin D"). I'm heartened to
see I might not be alone.

------
flocial
Why can't something be medical AND psychological? Stress, bad diet, lack of
social interaction, etc. Our bodies and minds are legacy material thanks to
the technology we created. What I don't like about the medical profession is
how they jump to definitive conclusions to many things and fail to question
so-called established wisdom.

Symptoms are as real as the patient feels it. It's not over until they feel
cured. Anybody who's struggled with something outside their power knows that
strength of will can work miracles but only get you so far.

~~~
cfshacker
Well, you wouldn't say someone with AIDS had problems with "Stress, bad diet,
lack of social interaction", for example. Yet Dr. Nancy Klimas got interested
in CFS patients when she found they were sicker than her AIDS patients. (Of
course, outcomes for AIDS patients are far worse!)

------
Groxx
I think one of the major problems with "CFS" is that it's an umbrella term.
Seriously. If you have persistent fatigue and they can't diagnose you with
anything else, you have "chronic fatigue syndrome". It's no wonder research is
inconclusive and hard to come by.

My brother and I both got CFS at the same time, with similar initial-diagnoses
(tested positive for Mono), and we've been fighting off the effects for quite
a few years now. For myself, I went from soccer-playing high-energy kid to
going between bed and the couch for about a year and a half, in the span of a
few days.

What changed after a year and a half was that I was getting ever-deeper in a
depressive cycle, and managed to recognize it and escape - I realized it was
literally a lethal path if I didn't fix something. Very good motivation, that.
From then, I basically spent 5 years wasting a little more energy in
everything I did, and very very slowly got some stamina back - it took me
about 5 years from the start of it all to get to the point where I could go
back to school for a couple hours a day. The remaining year and a half got me
back to almost regular hours.

I still have some problems, but am able to get around most of them now because
I have very acutely learned the difference between being _fatigued_ and
literal physical exhaustion. And I've become extremely patient / stubborn in
my progress - a few years to make a small improvement isn't all that long any
more. I still waste energy left and right, but it's no longer a necessity.

I am a rare exception, and I count myself _lucky_ , not strong-willed. Getting
to where I am now hasn't been entirely my doing - it has faded on its own to a
fair degree.

\---

So, throughout all this, I've kept watching the research a bit, and one thing
sticks out like a sore thumb - the umbrella term. Studies have a hard time
finding individuals, and a hard time finding ones with possibly-similar
causes, because it manifests so many different ways (my brother had and has
severe migraines, I've had digestive and muscle pains). And if it doesn't help
_everyone_ , it's not a cure. It's disorganized and counter-productive, and
the same thing happens to almost every umbrella term in every field.

And due to all of this, we've had tons of blood tests, left several doctors
who take the stance that it doesn't exist, and found a surprising amount of
people with similar experiences. Doctors who can't accept things they didn't
learn in school disgust me - I'm very glad we've found a couple that don't.
They've been wonderful.

For my brother and I, I can say this: we don't know how to manifest positive
tests for Mono using our minds. The rest of it is possible, but I find it
unlikely, and neither of us were under odd stresses prior - both good at
school, had friends, no real family troubles, etc. No doubt some of it is
psychosomatic, but it varies by person, and there are _definitely_ other
factors in play in many cases. I very highly doubt many (most?) CFS cases are
entirely psychosomatic. I have no problem with it _being_ psychosomatic
(really, it wouldn't bother me - it'd mean less wasted on tests and more on
attempts), I just doubt it's the main cause.

~~~
Someone
For those unfamiliar with medical terminology: the trailing 'S' for 'syndrome'
gives away that something is a set of symptoms. They may or may not have a
single cause, and we may or may not know the causes.

If we find the cause or a partial cause of a syndrome, it will get a new
label. That is why "AIDS" has given way for "HIV infection", "Scurvy" for
"Vitamin C deficiency", etc. CFS, being a syndrome, may Or may not have a
single cause. We simply do not know.

A (IMO) problem with such vague syndromes is that, in general, it pays of to
claim to be part of a a larger group. It is more accepted to say your son has
ADHD than to say he cannot concentrate well, or that one has CFS than that one
is lethargic., does not feel like doing much, etc.

Net effect is that, even if there is a group of true patients with well-
defined symptoms with a common cause, it is hard to separate them from "me
too" persons (a group that may include persons that have a different unknown
ailment with similar symptoms)

------
mebesilly
The problem is that some people have a vested interest in seeing CFS as an
organic problem. These proponents of CFS are notorious for mounting hate
campaigns against mainstream researchers. That is one of the reasons why CFS
has been delegated to the shadowlands of fringe medicine.

~~~
cfshacker
Rubbish. The reason CFS hasn't seen more mainstream research is a chicken-and-
egg problem of having no specific angle to research, therefore research isn't
done, therefore there's no specific angle to research. When the XMRV stuff
broke the research community did swing into action. Scientists haven't decided
not to study CFS because someone on the internet hurt their feelings. Medicine
isn't omniscient. Blaming extremely sick people for the lack of research into
their predicament is absurd.

~~~
shiven
> When the XMRV stuff broke the research community did swing into action.

Yes. And did prove conclusively that XMRV is not the cause for CFS.

> Scientists haven't decided not to study CFS because someone on the internet
> hurt their feelings.

No. Funding for research is what makes scientists study anything. Direct your
anger to raise more funding for CFS research and you will get closer to
knowing the patho-physiological cause (whether you like the answer or not
means absolutely nothing).

>Medicine isn't omniscient.

Just like any other human endeavor.

> Blaming extremely sick people for the lack of research into their
> predicament is absurd.

The blame is very justified when you start receiving death threats.

Talk of biting the hand that feeds. Jeez!

~~~
olliec
Shiven, it's not been proven "conclusively" that XMRV is involved in CFS. I'm
not aware of any serious scientists stating as a fact it was the "cause". It
remains controversial, and research continues. Ian Lipkin's study should yield
results within 12months and that seems likely to provide more solid answers.

CFS, in the UK, is a wastebasket diagnosis based on very loose and broad
criteria. It's absurd for anyone to suggest it is one condition. I know of
people who have been diagnosed with CFS, but then subsequently diagnosed with
MS, bone disorder, and other conditions. ME, however, looks to be a specific
subset. CFS and ME are not the same - ME is a smaller sub section of the
patient population.

In the absence of a biomarker and test, we are however reliant on diagnosis
based on symptoms, and so I'm pleased to see the new ME International
Consensus Criteria published this month. These diagnostic criteria were
created by 26 researchers and doctors from thirteen countries, with 400 years
of professional experience, who have treated 50,000 ME/CFS patients. Their
view is that the correct diagnosis for many patients is ME, not CFS, and that
ME is a very specific illness involving multiple systems. There's a copy
hosted here: [http://www.wpinstitute.org/news/docs/me-international-
consen...](http://www.wpinstitute.org/news/docs/me-international-consensus-
criteria.pdf)

Shiven, no sensible person is condoning attacks, but you have completely
misunderstood what is happening. The reason people are so angry with the likes
of Wessely is that in recent years ALL of the very small amounts of UK gov
money going into ME/CFS research has gone to psychiatrists, when there's
plentiful research showing (when patients are properly classified using proper
criteria) they are physically very sick indeed with significant dysfunction in
the immune system amongst others. It's indefensible. The majority of sensible
patients are saying that they want biomedical research. It's absurd to
suggest, as you are, that all ME/CFS patients are being self-destructive and
stopping research by attacking researchers when it's a tiny minority. That
kind of stereotyping is offensive, in any context. Let's not, as the press
have blindly done this week, tar all patients with the same brush.

The poor results shown by The PACE Trial, even despite its sizeable cost, show
the limits of what psychiatrists are able to do to treat ME patients (or even
CFS patients). The psychiatrists are not succeeding in treating these
conditions, and so clearly more work is needed.

If Prof Wesseley was threatened in the way he says (I've seen no evidence or
heard of prosecutions) then those responsible must be prosecuted and if
necessary jailed. However this drama created by Wesseley apparently putting
out a press release (why?) is distracting us from the real question, when will
the UK gov start putting funding in place to (additionally) look at biomedical
causes of ME, which is a quietly devastating disease?

------
WordSkill
I was going set up a startup to serve the Chronic Fatigue Syndrome community
but, somehow, I never got around to it.

~~~
antidaily
at least tell a weed joke.

