
PLOS ONE issues editor's note over controversial chronic fatigue research - tokenadult
http://retractionwatch.com/2015/12/16/plos-one-issues-editors-note-over-disputed-chronic-fatigue-research/
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CFSThrowaway
Chronic fatigue syndrome research is already too mired in politics. It is
disappointing to see how poorly KCL has handled both the trial itself (post-
hoc protocol changes, perhaps to make conclusions more significant) and their
refusal to share data so others could verify their analysis.

It is also disappointing to watch how vigorously a vocal subset of CFS
researchers and sufferers oppose and attack any research that touches on the
possibility of psychiatric treatments possibly benefiting chronic fatigue
syndrome sufferers. KCL's poor behavior in refusing to release their data is
only fanning the flames here, but the vigorous objections to CFS research that
suggests cognitive behavior therapy (CBT) is beneficial goes back much further
than this study.

For some background, chronic fatigue syndrome has several different
definitions, but many patients end up with a CFS diagnosis by exclusion of
other therapies. This distorts the CFS community greatly, with many CFS
community members not actually meeting the criteria for CFS. The PACE trial is
a good example of this, with approximately 80% of the candidates excluded for
various reasons (although obviously not all 80% were excluded strictly for
failing to meet CFS criteria, but it's still significant).

The problem is that many CFS sufferers, all of whom are suffering from very
real physical fatigue and other physical symptoms, are very resistant to any
suggestion that the disease has a psychiatric component or can be modified
through mental health strategies. This objection runs so deep that researchers
receive death threats for participating in studies exploring CBT for CFS, and
online CFS forums are filled with vitriolic hate for any suggestion that CBT
or other mental health strategies could possibly be effective. Meanwhile,
studies (beyond just this PACE trial) have shown CBT to be one of the most
effective options we have for CFS. It's not a cure, but it does seem to help
on average.

My point with this whole tangent is that chronic fatigue syndrome is so caught
up in politics and resistance to certain ideas that most researchers don't
even want to touch the topic any more. I certainly wouldn't want to research
something if advocating the current best treatment option would result in
death threats from sufferers. This is all very unfortunate, because instead of
progress we're left with situations like the PACE trial where both KCL and a
lot of the critical researchers are refusing to play nice with each other, and
instead we get nowhere. And of course, there is now even more reason for
researchers to not touch CFS research.

~~~
Klinky
The problem is the rush some doctors are in to label a patient's condition as
psychosomatic, and then prescribe drugs instead of something like CBT. A
psychosomatic diagnosis is often code for "I am lazy" or "I don't know".

There is also the other angle that people dealing with other stressfull
diseases would likely benefit from CBT too, so does showing a benefit from CBT
really mean it's psychosomatic?

~~~
CFSThrowaway
Your post highlights some of the disconnect between doctors, patients, and
research: Psychosomatic absolutely does not mean "lazy," but that's why so
many people are resistant to the idea.

Psychosomatic means "of mind and body." It means physical symptoms that are
caused or aggravated by mental conditions. The key phrase here is "or
aggravated by," which doesn't rule out a physical cause but does suggest that
addressing the psychological aspects can, at minimum, improve some of the
situation. The problem is that patients get the wrong impression that their
physical concerns are being dismissed and thus they reject anything to do with
a psychosomatic suggestion.

I'm not suggesting that CFS is purely driven by mental health, nor are the
doctors or studies that show improvements from CBT. What they are suggesting
is that CFS patients, for whatever unknown reasons, benefit from CBT and other
mental health treatments, regardless of the underlying cause.

~~~
Klinky
I was suggesting the diagnosis of "Psychosomatic" was lazy on the doctor's
part.

I went into a doctor's office 10 years ago with digestive problems, and the
doctor was ready to write me a prescription for anti-depressants within 15
minutes, without a single test run. Visits to gastroenterologists weeks later,
and subsequent visits to counselors and psychiatrists were not helpful. I was
dealing with gastroparesis, which is often not diagnosed correctly. Doctors
instead suggest the patient has an eating disorder or blame it on anxiety.

The truth is, there are a lot of uncaring shitty doctors out there. If you're
on the fringe and don't fall into the DSM, good luck. You absolutely have to
advocate for your health, because often your doctor isn't going to. At least
in the U.S., most doctors aren't going to walk you through the process to get
setup with CBT, and your health insurance may consider it a mental health
treatment, which has additional limitations on it. If you combine being
skeptical that your doctor is using mental health as a cop out, and then it's
a pain in the ass to get started, you're going to be more resistant to it.

It's great CBT works for some CFS patients, just like mindful meditation works
for some people with chronic pain, but in no way should it be treated like a
cure or a reason to stop researching it, just like we're not going to treat
meditation as a cure for chronic pain.

~~~
cpncrunch
My guess is that it wasn't laziness on the doctor's part, but he/she looked at
your symptoms and diagnosed it as most likely psychosomatic based on the
evidence you presented. Was there another cause of the gastroparesis in your
case? I've experienced gastroparesis myself due to stress, and I would imagine
that is the most common cause.

~~~
Klinky
Not lazy to assume anxiety without reviewing colonoscopy, EGD & gastric
emptying study results? Perhaps I was showing signs of anxiety, but as a side
effect of the discomfort I was in.

There are certainly hypochondriacs out there, but there are also terrible
doctors as well. One should not immediately assume the patient is incompetent
and doctor infallible.

Gastroparesis is a pretty severe condition that often lasts for months or even
your entire life. In my research I did not see stress noted as the most common
cause.

~~~
cpncrunch
I never suggested you were incompetent or a hypochondriac. I see the vagus
nerve mentioned as the main cause of Gastroparesis, and stress results in
decreased vagus nerve activation. And as I said, I've been there myself,
having severely reduced gastric emptying etc. due to stress.

What was the cause of your gastroparesis?

~~~
Klinky
Gastroparesis due to diabetic neuropathy and side effects from surgical
procedures is probably more prevalent than genuine cases of stress-induced
gastroparesis. The cause of my case is not known. It'd probably fall under
idiopathic. I believe it was related to food poisoning or a virus.

~~~
cpncrunch
I was referring to idiopathic gastroparesis. Given that stress affects vagal
tone (which is implicated as the cause of gastroparesis), and given the 10:1
female:male ratio (similar to fibromyalgia), stress seems a plausible cause
for temporary idiopathic gastroparesis.

~~~
Klinky
Damage to the vagus nerve is potentially implicated. Low vagal tone could mean
anything, such as damage to the vagus nerve from other sources or stress
caused by the illness itself, rather than the other way around.

The problem with a diagnosis of stress is that no one lives a stress-free
life, and identifying triggers that have have possibly caused a stress-induced
illness is a guessing game. Unless there is a clearly defined link or test
that can pinpoint that the exact cause of an illness was stress induced, it
should be a diagnosis of extreme last resort. You could send someone on a wild
goose chase, what with going to CBT sessions, counselors and psychiatrists,
only causing them more stress as their condition continues to deteriorate.

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davidgerard
My jaw dropped at KCL's response to being asked for the data. How to trash
your research reputation.

~~~
mcguire
The letter from KCL is worth reading:

" _Further to your recent request for information held by King’s College
London, I am writing to confirm that the requested information is held by the
university. The university is withholding the information in accordance with
section 14(1) of the Act – Vexatious Request._

...

" _You initially requested the information in accordance with the data sharing
policies of the Public Library of Science (PLOS). The university has decided
to treat this as a request under section 1(1) of the Act, as the information
is held by the university. We received your information request on 13 November
2015._ "

I'll further note that the professor making the request is a critic of the
article.

KCL appears to be unilaterally declaring the request to be under the FOIA
instead of PLOS rules so they _can_ deny it.

~~~
RobAley
To be fair, regardless of their actual reason, public bodies like Universities
are compelled by law to treat request that amount to, or could be made as,
FOIA requests as if they were. I.e. there is no magic incarnation, set of
words or similar that need to be uttered to make it so. It's similar to
requests under the DPA. As always there are grey areas, and I'm not making a
judgement as to whether, even if it was considered an FOIA request, it would
be considered Vexatious (I don't know enough detail). But it is incumbent upon
them to consider it as such.

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hanklazard
Why don't they just deidentify the data set? This not-new concept would allow
the researchers to provide the data without compromising patient
confidentiality. As for the argument re: follow-up study, seems that the
scientific community should agree on a reasonable amount of time during which
a group can keep and reanalyze their own published data after which the data
must be made public (30 days? 60 days?).

~~~
Paul-ish
It isn't easy to deidentidy a dataset. It isn't as simple as removing the
names. You don't know in advanced what features in a dataset, when combined
with a second dataset, will allow an adversary to reidentify data points. It
isn't as simple as adding noise either, because reidentification can be
treated like a machine learning problem.

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jimrandomh
Chronic fatigue syndrome has the very unfortunate property of being a symptom,
rather than a disease per se, so that it ends up being code for "undiagnosed".
This makes any research which attempts to study it extremely difficult to
interpret and sensitive to details of the study population which may not be
reported. This makes raw data especially important.

