Wednesday, March 26, 2014

Changing Tactics by Jennie Spotila

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Occupy CFS
Occupyng CFS since 1994

Changing Tactics

March 24th, 2014

Jennie Spotila

For decades, ME/CFS research and clinical care has
been plagued by disagreement over the basic
classification of the illness.

Is ME/CFS a physical disease, as many patients and
researchers insist?

Or is it a mental health disorder perpetuated by
deconditioning, as argued by the psychosocial school?

There is growing rejection of the psychogenic
explanation for ME/CFS, but it is not disappearing. In my
view, the psychosocial school is simply changing tactics,
and this is a trap that we must avoid at all costs.

Transforming the Argument

The hypothesis that ME/CFS is a mental health issue has
been disproved by the data. For years, the psychosocial
school has claimed that CFS patients had poor coping
skills and were simply deconditioned.

All we needed to do was increase our physical activity
(GET) and ferret out our dysfunctional illness beliefs
(CBT), and we would recover.

While the PACE trial and other research has been based
on this premise, we have ample data that cuts the
theory off at the knees.

The two-day CPET (cardiopulmonary exercise testing) results cannot be faked, and distinguish ME/CFS patients from sedentary controls.

Gene expression studies have also shown a distinct pattern of response to exercise in ME/CFS patients compared with sedentary controls and patients with other illnesses.

Evidence, including imaging, spinal fluid, and immunological testing, has mounted to the point where Dr. Anthony Komaroff declared that the debate over back in 2006.

But the psychosocial school has not relented and I now
see a change in their tactics. Instead of insisting that
the illness is psychological, they are waving their hands
and saying that the psychological v. physical debate is

I offer two recent examples:

First, there is the systematic review of ME/CFS case
definitions by Brurberg, et al. (,
which I reviewed in detail in my post Systematic
Overreaching (

The authors stated:

       It is likely that all CFS/ME case definitions capture
       conditions with different or multifactorial
       pathogenesis and varying prognosis. The futile
       dichotomy of 'organic' versus 'psychic' disorder
       should be abandoned.

       Most medical disorders have a complex aetiology.
       Psychological treatments are often helpful also for
       clear-cut somatic disorders.

       Unfortunately, patient groups and researchers with
       vested interests in the belief that ME is a distinct
       somatic disease seem unwilling to leave the
       position that ME is an organic disease only.
       This position has damaged the research and
       practice for patients suffering from CFS/ME.

As I said in my comment on the article published on BMJ
Open (

"The authors presented no evidence to support their
accusation that the organic disease -only position has
damaged research and clinical practice.

Furthermore, they completely ignored the very real and
logical possibility that the reverse is true.

In other words, it is equally possible that the people with
vested interests in the belief that ME/CFS has
psychosocial causes are unwilling to leave that position,
and have damaged the research and practice for
patients suffering from the disease."

Second, the recent report on the case definition for Gulf
War Illness ( included the following
discussion of the mental v. physical debate:

       Like CMI and many other symptom-based illnesses,
       ME/CFS is not without controversy, particularly
       regarding whether they are mental disorders or
       physical health disorders [cite to IACFS/ME

       The committee notes that this either-or approach
       is not useful, for several reasons. The distinction
       between mental and physical disorders is often
       arbitrary, and most patients' experiences of any
       illness are influenced by biologic, psychologic, and
       social factors.

       Either-or thinking leads too often to a presumption
       that medically unexplained symptoms must be

       In addition, psychiatric [sic] symptoms may not be
       fully evaluated if a patient's symptoms are
       psychogenic. Although physical and psychologic
       stress can exacerbate many chronic conditions –
       including chronic pain, headache, respiratory, and
       gastrointestinal symptoms – there is an inherent
       risk in assuming that medically unexplained
       symptoms assume a "stress-induced" etiology.

As in Brurberg, et al., there is no rejection of the
psychogenic theory of ME/CFS. Instead, we're told to
abandon the debate.

It's not either-or, it's both. Let's stop arguing about the
evidence, and go with a holistic view (that still includes
the psychogenic theory).

It's A Trap

Do you see what's happening here?

The ME/CFS psychogenic school is wrong – as shown by
all the data that indicates biological abnormalities that
are not seen in sedentary controls or people with
depression or anxiety.

But instead of admitting the error, they are simply
changing tactics. Now they are saying that it's
psychological AND physical, and the distinction does not
matter anyway.

Contrary to this new angle on psychosocial explanations,
I believe it matters a great deal whether ME/CFS (or
GWI) is a mental or physical disorder.

The distinction between mental and physical is not
"arbitrary," but can be drawn based on signs and

I readily admit that my emotional state and coping skills
have had an impact on my experience of this disease,
but I completely reject the premise that therefore the
distinction between mental and physical does not
matter. It does.

People with mental health issues are primarily treated by
psychologists, and in ME/CFS that usually means CBT
and GET.

We know that GET can have serious and long-lasting
negative effects on ME/CFS patients.
For decades, ME/CFS patients have endured dismissal and worse because of the psychogenic view of the disease.

To say the distinction does not matter is foolish, at

The practice of medicine is structured around that
duology. There are medical diseases treated by
physicians, and there are psychological diseases
diagnosed with the DSM-IV (soon to be DSM-V) by

In the middle are psychiatric diseases like schizophrenia
which are known to be biological, but are treated in the
mental health setting because the symptoms of disease
are behavioral.

Mental health diagnoses are treated differently by health
and disability insurance.

There is a difference between the physical and
psychological attributions of illness: in health care, in
benefits, and in social views.

If the mental-physical duology no longer applies,
shouldn't that be true of all diseases?

If "patients' experiences of any illness are influenced by
biologic, psychologic, and social factors," then I suppose
we are abandoning the dichotomy in cancer, heart
disease, and multiple sclerosis too?

I don't know about anyone else, but I don't hear anyone
suggesting that those diseases are psychogenic in any
way. I have family members who have endured MS, cancer and heart disease.

Stress can make those diseases harder to manage, and even exacerbate the underlying disease process.

But no one would ever say "let's abandon the either-or thinking and agree it's biologic and psychologic."

No way.

Those diseases are accepted as physical in origin, with
implications for behavior and coping. I believe that I
deserve the same respect.

Bias and Decision Making

I've described the psychosocial school as changing their
tactics, but I don't necessarily believe there is a
smoke-filled room where a cabal of psychologists sat
down and said:

"We're losing the argument so let's use these talking
points instead."

I think the shift may be the result of cognitive bias and
the difficulty humans have with admitting they're wrong.

If I am a psychologist and I've invested 10 or 15 years in
the theory that CFS is the result of poor coping skills
and deconditioning, it's going to be hard to change my

Despite mounting evidence that my theory is wrong, it
will be hard to let it go. An easier step is to say that I'm
not completely right but also not completely wrong.

It's not either/or, it's both.

ME/CFS patients have gone through this process
themselves. When the XMRV paper was published in
2009, many patients seized on the results.

We had very good reasons to do so, and at first, the
science and scientists seemed to support that position.
But as contrary data emerged, and hard questions were
asked, some scientists and patients found it very
difficult to follow that data.

They continued to insist that it was XMRV, and when
that was disproved they claimed it was HGRVs. And
when that was disproved, they claimed the science
hadn't been done right or there was a conspiracy or
there were unidentified retroviruses at work.

And it was three years before Dr. Mikovits finally took
the courageous step of publicly admitting her
conclusions had been wrong.

Nobody likes to admit a mistake, and the more you have
invested in that mistake the harder it is to admit it.
The psychogenic explanation of ME/CFS is wrong, but
instead of admitting the mistake, some scientists are
shifting gears and saying that it's not completely wrong
because the physical-psychological divide doesn't
actually matter.

They are not following the data, and they are
attempting to twist the dialogue so they don't have to
admit they are wrong.

Drawing the Line

The divide matters, and I will not be drawn into a
compromise view.

ME/CFS is a physical disease with physical causes. My
emotions are relevant to my ability to cope with this
physical disease, just as emotions are relevant to coping
with cancer or AIDS.

But I reject any hypothesis that leaves the psychogenic
view on the table.

Not because I don't want to face up to having a mental
illness. Not because I want my disease to be physical.
Not because I am personally prejudiced against mental
illness and not because I don't see the relevance of
emotions in physical health.

I reject the psychogenic hypothesis because the data is
not there.

I had a happy childhood. I had a satisfying career and personal life. I enjoyed being physically active. Then I got sick. And despite my strong desire to continue in that career, that personal life, and that physical activity, I have not been able to do so for almost twenty years.

The reasons why my life was destroyed matter.

The cause of that destruction matters.

To say that the distinction between physical and
psychological causes is arbitrary and irrelevant is to
dismiss my experiences.

It may save face for the psychogenic school, but it is a
slap in mine.

I challenge the researchers and decision makers to admit
their errors, and get on with the business of finding the
answers that will repair my body and my life.

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PEM, NOT Chronic Fatigue, is why patients
  are bedridden, homebound, unemployed,
         and unable to walk a block.

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