

A Test for Chronic Fatigue Syndrome - antimora
http://www.huffingtonpost.com/2015/02/28/chronic-fatigue-syndrome-test_n_6774090.html

======
blennon
There are some opinions expressed in the comments here that are not consistent
with a consensus report recently published by the Institute of Medicine [1].

The committee argues that, "ME/CFS is a serious, chronic, complex, multisystem
disease that frequently and dramatically limits the activities of affected
patients. In its most severe form, this disease can consume the lives of those
whom it afflicts. It is 'real.' It is not appropriate to dismiss these
patients by saying, 'I am chronically fatigued, too'".

Theodore Ganiats, one of the committee members wrote, "The literature review
found sufficient evidence that ME/CFS is a disease with a physiologic basis.
It is not, as many clinicians believe, a psychological problem that should not
be taken seriously" [2].

The committee proposed new diagnostic criteria and a new name "systemic
exertion intolerance disease".

In my opinion, getting past the psychological and psychosomatic theories of
CFS is a huge step towards meaningful research funding to address this
disease. The IOM publication [1] and committee members efforts to disseminate
the findings of this report [2,3] to the medical community is a big step
forward.

[1] [http://www.iom.edu/Reports/2015/ME-
CFS.aspx](http://www.iom.edu/Reports/2015/ME-CFS.aspx) [2]
[http://annals.org/article.aspx?articleid=2118972](http://annals.org/article.aspx?articleid=2118972)
[3]
[http://jama.jamanetwork.com/article.aspx?articleid=2118591](http://jama.jamanetwork.com/article.aspx?articleid=2118591)

~~~
lukestevens
Well said. It's also worth noting that psycho-social treatments have been
studied extensively (e.g. PACE trial) with poor results.

While I'm happy for people here who have resolved whatever underlying
psychological and/or emotional issues that were causing them problematic
fatigue, the experience of many CFS/ME patients suffering post-exertional
malaise is generally much more specific in the type of fatigue suffered, and
much broader in the range of symptoms experienced.

One example of cutting edge CFS/ME treatment research focuses on the use of
rituximab, which has been pioneered by Norwegian oncologists who discovered
its effectiveness accidentally, and are now pursuing a phase three trial after
successful smaller trials. There are a variety of other approaches being
explored too (e.g. Pridgen & anti-virals with anti-inflammatories, Montoya at
Stanford, and so on).

The work on rituximab, and other research (e.g. this POTS research on
autoimmunity:
[http://www.dysautonomiainternational.org/blog/wordpress/new-...](http://www.dysautonomiainternational.org/blog/wordpress/new-
evidence-of-autoimmunity-in-pots/)) suggests autoimmunity, but much more
research needs to be done.

A serious disease needs serious research, and serious research requires
serious funding. Psycho-social theories do a disservice to those suffering
from a very real, very debilitating illness, and the sooner these distractions
can be dispensed with, the better.

~~~
cpncrunch
I think you're making the mistake of saying that psychiatric illnesses are not
"real".

Regarding the rituximab trial, it's primary end-point was actually negative.
It will be interesting to see if the results are replicated.

~~~
lukestevens
Well, "real" insofar as it's shorthand for "not emotion-based". I.e. it can be
observed, studied, and treated in an appropriate scientific manner, and not by
means of self-help emotional woo.

Do you have a source for your comment about the end-point being negative? The
last interview I read with the researchers suggested they were still getting
results in 2/3rds of patients, they were optimising their dosing schedule, and
were fairly upbeat about their prospects for their phase three trial. I'd be
interested to read more discussion on their work though.

~~~
tomhoward
It would absolutely be possible to observe/study/treat in an appropriate
scientific manner, treatments that focus on emotions.

To dismiss any emotion-based causes/treatments as "woo" is to claim that there
is no link between emotional activity and physiological functioning.

There's every bit of difference between saying to a CFS patient "it's all in
your mind, go and get a haircut to make you feel better", and saying "your
emotions - particularly your subconscious ones - play a huge role in your
physiology, you can improve your health by improving your emotions using this
technique for which there is a solid track record of success."

 _Psycho-social theories do a disservice to those suffering from a very real,
very debilitating illness, and the sooner these distractions can be dispensed
with, the better._

No, it's the refusal to consider such theories and include them in proper
research that does the disservice to sufferers. For as long as this continues
to be the case, a genuinely effective treatment for CFS will not be found.

I should emphasise: I don't argue for a psychology-only approach to treatment,
far from it. My improvement is as much a result of physiological treatments as
emotion-based ones. My argument is that both are important, and one without
the other will not work.

~~~
lukestevens
> No, it's the refusal to consider such theories and include them in proper
> research that does the disservice to sufferers. For as long as this
> continues to be the case, a genuinely effective treatment for CFS will not
> be found.

But they have been considered. And studied. And found wanting. It is not,
anecdotes notwithstanding, possible to "improve your health by improving your
emotions using this technique for which there is a solid track record of
success". There _isn't_ a "solid track record of success. That's the whole
point. If there was, we wouldn't be having this conversation, because everyone
with CFS would be cured several times over by now.

That's why there is a need for real (read: effective) treatment. If I, or any
other of the many sufferers out there, could heal ourselves through some
emotional technique then we would be _over the moon_. But we (and many others)
have read the books; tried the techniques; and are right where we started:
wanting real funding for real research for a real disease.

Physiological treatment will work alone, just like they have for stomach
ulcers, and countless other illnesses that were previously attributed to
vague, non-scientific explanations. We just need to do the research.

~~~
cpncrunch
It's a similar situation with depression -- there are treatments available
(such as CBT), but they aren't effective for everyone.

I think the problem with CBT for CFS is that it has an incorrect etiology, and
more effective psychological treatments will likely become available.

From what I can see, CFS definitely can be cured by "some sort of emotional
technique". It's just that a lot of CFS patients simply don't want to believe
it, so they essentially end up doing the exact opposite of what is required to
recover, resulting in further illness rather than recovery.

~~~
blennon
> From what I can see, CFS definitely can be cured by "some sort of emotional
> technique". It's just that a lot of CFS patients simply don't want to
> believe it, so they essentially end up doing the exact opposite of what is
> required to recover, resulting in further illness rather than recovery.

How much of this is due to your personal experience vs survey of the data?
"Cure" is a very powerful word. There are several examples of CBT providing
beneficial results, but nowhere near complete cures as far as I know. It's
important to separate our personal experience from the data about a disease
with possibly heterogeneous patient population.

For the record, I have no doubt psychological state has an effect on ME/CFS
symptom severity.

~~~
cpncrunch
My comment was based on research into the illness, and understanding the
underlying etiology (see my peerj post). Also, I have seen many people cured
completely from CFS (most of whom didn't use CBT).

Unfortunately there is no effective, evidence-based treatment that is based on
a sound etiology of the illness. However if you understand the etiology you
can certainly "hack" your brain to fully recover from CFS like myself and many
other patients have done.

------
Udo
Some medical phenomena are not diseases, they're collective terms for symptoms
with an unclear cause. "CFS", among others, is such a term. As underlying
causes are identified, groups of patients ideally get moved off the label and
categorized more appropriately according to what they are actually suffering
from.

CFS is not a diagnosis, it's a label for a syndrome which should only be
applied _after_ a medical practitioner has exhausted all her diagnostic
capabilities without conclusive results. CFS is not something that should ever
be on top of the list, it's only a fallback for when you reach the end of the
list, and it _has to be this way_ by definition.

However, these syndromes sometimes develop a life of their own. It can be
because our diagnostic means still have glaring weaknesses. Or because doctors
don't want to explore something any further. Or because a syndrome becomes a
cultural phenomenon. This is parodied pretty well in an animated Dilbert
episode with "Chronic Cubicle Syndrome".

Because of this cultural baggage (which affects physicians as well) it might
be better to move away from a syndrome-based nomenclature for these things.
_Idiopathic Chronic Fatigue_ would be a much better term.

That's why I think studies on groups of patients labeled with a syndrome are
net-beneficial while every patient actually "diagnosed" with CFS is a medical
defeat.

------
Madmallard
Chronic fatigue syndrome is mitochondrial disease. The only reason there's any
dispute over it is that OXPHOS testing is not standardized and so doctors are
scrambling to put any meaning behind all these symptoms.

Chronic fatigue triggers -> medicines (many of them are starting to be known
for being cytotoxic - bacteriocidal antibiotics anyone?), surgery (plenty of
well-known mito diseases are triggered by general anesthesia or exacerbated
by), severe infections (energy saps of the body that can throw off the energy
homeostasis greatly even in normal people).

Hell depression and anxiety may even be mitochondrial disease manifestations
in the brain in some cases.

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/)

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/)

[http://www.ncbi.nlm.nih.gov/pubmed/22579150/](http://www.ncbi.nlm.nih.gov/pubmed/22579150/)

[http://www.mitoaction.org/files/Dykens%20for%20Mitoaction.pd...](http://www.mitoaction.org/files/Dykens%20for%20Mitoaction.pdf)

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763246/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763246/)

[http://triggered.stanford.clockss.org/ServeContent?rft_id=in...](http://triggered.stanford.clockss.org/ServeContent?rft_id=info:doi/10.1124/mi.5.2.7)

It's completely fucking tragic that society has to demonize mental illness and
all these debilitating diseases that we are causing ourselves in many cases.
It's a fucking luck of the draw whether or not it will destroy you and
possibly harm your future lineage.

It makes sense that stress reduction helps some people because stress uses up
a lot of energy. That's less energy for maintaining homeostasis in a weak
metabolic system.

One open question is to whether it is secondary or primary mitochondrial
disease.

------
cpncrunch
While this research is interesting, I'm not sure it quite lives up to the hype
of the press releases. There have been quite a few other studies showing
potential biomarkers, for example: the cortisol awakening response with
respect to ground, and repeat cardiopulmonary tests. In fact, I suspect these
other tests might be more useful, as they may identify all patients rather
than just ones that have been ill for less than 3 years (although more
research is needed).

------
blennon
Here is a link to the original research behind this PR:
[http://advances.sciencemag.org/content/1/1/e1400121](http://advances.sciencemag.org/content/1/1/e1400121)

------
comrade1
Skepticism is required. The doctors that used to diagnose people with chronic
fatigue syndrome have moved on and now are diagnosing people with 'chronic'
Lyme disease. These are known scammers.

This article reports on doctors still diagnosing people with chronic fatigue
syndrome and backs up their study with actual research. But this huffington
article gives no real information - it just states that the study had a
control group of 358 and a test group of 298. It doesn't give any numbers
other than that.

Chronic fatigue syndrome and, now, chronic Lyme disease are probably more
related to depression than to any external biological agent like a virus or
bacterium.

~~~
Malcx
>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more
related to depression than to any external biological agent like a virus or
bacterium.

As someone whose partner has CFS (since she was aged 12) I have to disagree
strongly on this, although my experiences are anecdotal I'm more than 99% sure
CFS is a physical condition rather than mental.

Having also studied much of the scientific literature of the past few years
I'd be strongly critical of your assertion based on the results of any
respected doctor or controlled study.

Unfortunately suggesting it's a mental condition has resulted in such helpful
suggestions from doctors as "get a new hair cut to cheer you up" which is akin
to telling a cancer sufferer that lipstick might help.

I'd be happy to discuss further and provide numerous studies suggesting it is
a result of a (most likely) viral infection that has had long term
repercussions on the immune system.

There are scammers out there, but it's not the patients or the majority of
doctors - at least in the UK.

Disclaimer: I'm currently working on a data gathering problem related to this
as a side project with a view to crowdsourced funding.

~~~
cpncrunch
Having recovered from CFS myself and researched it for about 15 years, it
seems highly likely it is psychosomatic rather than organic. The literature
seems to point in this direction -- that it is a condition caused by chronic
stress. (Interestingly the biomarker found in this study is also found in PTSD
and in abused women).

I think you've hit the nub of the problem with your statement that you're
"more than 99% sure CFS is a physical condition". The majority of people
(including many doctors) simply don't understand certain basic facts about how
the body works (such as the fact that cortisol is a stress hormone, but also
one of the main modulators of the immune system). Most people still have a
Cartesian/Victorian view of the human body, and believe that the mind and body
are completely separate.

Telling someone to "get a new hair cut to cheer you up" won't be much use for
major depression or PTSD either. Comments like this just perpetuate the
misconception/prejudice that psychiatric conditions aren't real illnesses. I
think it's a combination of this prejudice, combined with a misunderstanding
of how the body works, that has caused most of the problems relating to
understanding CFS.

~~~
Malcx
Interesting thoughts and it's always good to hear from those who've recovered,
hopefully yours was full?

I'm always open to differing views, so would be interested in any recent
papers pointing to a psychosomatic cause, especially as this seems to be an
area active research is moving away from.

I completely agree the mind/body need to be treated more as a single entity,
but the researchers and clinicians I've been engaged with are most certainly
looking at this in a non Cartesian way. Nb these are not general practice
doctors.

Again, I'm comp sci rather than medical, so my experiences are anecdotal but a
good many of the CFS patients I've known have not been under chronic stress
with the often exception of CFS seemingly being triggered by a viral infection
such as glandular fever. I can't comment on whether cortisol levels remain
high.

Fundamentally there is so much we don't understand about what may in fact be a
group of illnesses, hence why people's personal stories seem to fall into two
or three conflicting camps.

We need more data to go on, which is why I've a side project looking to
address this which will hopefully lead to more areas of research.

~~~
cpncrunch
Yes, my recovery was full. I haven't had any symptoms in about 15 years, so I
think that is a fair assumption to make.

Studies do show that the majority of CFS patients report more stressful life
events preceding their illness than controls (e.g. Salit 1997, Hatcher et al.
2003, Theorell et al. 1999). Also, from speaking to patients, you do very
often find that they lived stressful lives prior to developing CFS.

Also bear in mind that it may be burnout more than stress that is important in
triggering the illness, and it appears to be possible to have burnout even in
the absence of stress (see for example Pruessner et al., 1999).

Infections also activate the HPA axis in a similar way to psychogolical
stress, and it may be a combination of stress and infection that causes CFS.
(Some studies show that gulf war syndrome is more likely if vaccinations occur
during the stress of combat). Alternatively the viral infection at onset might
simply be due to suppression of the immune system due to stress.

If you're interested, here is my theory of CFS:

[https://peerj.com/preprints/860/](https://peerj.com/preprints/860/)

Feel free to email me or leave a comment there if you have any comments. If
you're interested in this area, I'd recommend reading the full-text of the
studies in my references -- let me know if you want the full-text of any of
them. Like you I'm compsci rather than medical, but IMO a lot of the medical
people aren't really doing a good job at figuring out this illness.

