General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

Dr. Lodico (Re Medical Correctness eBMJ 6th June) showed great
courage when he admitted to suffering from CFS. Most of the psychiatrists
with ME whom I know daren't 'come out' for fear of the inevitable abuse
and ridicule. After all, if you keep hearing colleagues say how these
patients use symptoms to gain attention, how they need this illness to
'escape the rat race', how they somatise or are merely exaggerating
otherwise normal somatic phenomena, who wants to admit to having the
disease themselves? Most of us do not need the extra hassle, so we stay
quiet. Or we blame our fatigue etc on another, more acceptable disorder,
like migraines or back ache.

Dr. Lodico's response reminded me of an article by an American
surgeon with the illness (1). He referred to the trivialisation of the
illness (from exhaustion to fatigue), and the lack of understanding.
However, colleagues still prefer to believe doctors who do not have the
illness and have been surprisingly dismissive of doctors who do. Instead
of recognising the specialist knowledge and insights of these honest and
intelligent individuals, many regard them with suspicion, as they not only
contradict the popular and rather convenient stereotype, but the latter
provides us with a cheap and cheerful solution at a time when money is so
tight. If we blame CFS on a fear of activity, we don't have to fund
research into new anti-virals. But it's not scientific, as it means
accepting assumptions (e.g. that CFS is the result of deconditioning and
misguided beliefs) and ignoring the evidence of organic pathology (which
can be accessed via Medline or the factsheets on
http://freespace.virgin.net/david.axford/me/me.htm

As a shrink, I've seen colleagues reverting to the common layman's
approach to the unknown, i.e. blaming the victim in line with the just
world theory. Hence you get generalisations such as 'they all led
dysfunctional lives' or 'it's a result of their lifestyle'. These are
often based on a paucity of knowledge combined with prejudices (e.g. about
women), and sometimes, on misdiagnoses (e.g. CFS instead of burn-out
(Z73.0). Such strategies help us cope with uncertainty and fear, at least
in the short-term, but do not help the patients (2). In reality, we're
merely deceiving ourselves. We may feel we're not at risk, given we do not
lead dysfunctional lives and we're not into avoidance behaviour, but it's
an illusion. As the literature shows, a considerable number of cases of
CFS appear to have ongoing infections perpetuated, possibly, by an
inadequate immune response.

But there's more to this than a primitve way of dealing with
uncertainty. There's also denial. If one studies the most often cited
explanation for CFS, i.e. the CBT model, one can see that there is
virtualy no decent evidence to support any part of it. All the hypotheses
have been disproven (see the articles on CBT, on the website above). Yet
those old assumptions keep on being regurgitated, as though the evidence
to the contrary did not exist.

Take the continued speculation about the role of deconditioning on
fatigue. In a nutshell, research has been done but none has found a
significant correlation between lack of fitness and the symptoms of CFS.
Lack of fitness may explain tiredness and dizziness on first standing, but
sore throats? Tender glands? Vertigo? Intolerance to alcohol? Seizures?
There's more to CFS than fatigue and theories which cannot explain
intolerance to alcohol (trivial but extremely common) are at best
incomplete. The same goes for faulty beliefs. Here we have a theoretical
construct, where much of what is considered 'faulty' is based on the
assumption that all the existing evidence of ongoing disease is wrong. The
medical director of the ME Association, who must be one of the most
patient men in the UK, has spent years listing the relevant studies which
challenge the CBT model, yet many refuse to take them on board. Are all
those scientists who reported evidence of disease incompetent? Has anyone
checked?

CBT works (in some cases) because it increases self-efficacy, but so
does counselling. Graded activity works, probably because patients learn
to pace themselves better (when activity levels were measured objectively,
there were no notable increases after treatment, Goudsmit in press). We
have no data yet on the effect of psychiatric interventions where the
patients suffered from symptoms other than tiredess and emotional
distress. (An interesting question is it not: can CBT help those with
vertigo, blurred vision, seizure-like activity and intolerance to
alcohol?)

During his spell at the BMJ, Dr. Smith refused to keep readers
informed of any physiological, neurological and immunological findings in
relation to CFS. (With one notable exception, in 1995). This means that
many GPs have only read one side of the story, i.e. the CBT school's
views, leaving them frustrated and confused, as documented by Raine et
al).

I am a mental health professional who came out about my ME years ago.
I've been told by colleagues who knew the truth that despite my extensive
training as a shrink, I have no insight into my own psychological problems
(which they never shared with me, so I still don't know what they are),
that what I really need is a boyfriend (yes, please, can you clone Brad
Pitt for me?) and that I'd be better if I hadn't become an advisor to the
ME Association (since they peddle ideas which apparently keep us all ill),
etc etc.

I've actually had ME since I was a child, when my life consisted of
going to school, eating lovely food at home, playing with friends and
listening to the Beatles. I never mentioned to anyone that I was ill, as I
didn't know I was ill. All I knew was that I often felt ill and that after
a few days rest, I generally felt better again. During those days at home,
I couldn't do anything and I missed my friends. There was no reward, no
special food, no secondary gain. Later, I used a strategy called
normalisation to hide my illness. Still one psychiatrist would claim that
I used my symptoms to gain attention. He was guessing and he was wrong but
these things stayed in my notes for years, causing doubts in many of those
who read them. It took a letter from a wonderful Professor at Barts to
undo the damage caused by this inaccurate psychobabble. Others are not so
lucky.

Psychologisation, based invariably on assumptions and prejudice, is
not benign (2). People internalise these messages, especially if like me,
you've had them thrown at you for thirty years. They undermine your self-
confidence and can make you very afraid of doctors. Others become angry
and may direct that towards every professional, even if they do not really
know what they think. Hence the distrust of all psychiatrists and most
psychologists. (I may have helped devise the research criteria for ME and
introduced a useful strategy for conserving energy i.e. pacing, but I'm a
shrink and to some patients, that makes me one of 'them'. So many patients
don't respect me, and neither do most colleagues.) On the other hand, how
much misrepresentation and psychobabble are people expected to take before
they snap? The constant drip, drip, drip of trivialisation and lies,
reinforced by third rate research, is more than any normal person can
reasonably be expected to bear. And many don't.

The editorial bias which ignores everything non-psychiatric has
disempowered doctors and left them with information they often know does
not fit their experience. How many have seen patients who were perfectly
well and emotionally stable before they succumbed to a bug from which they
never recovered? Who do not fit the stereotype of the person who
misinterprets normal symptoms and becomes afraid of activities etc. I
respect Dr. Smith for all the good things he did as editor, but his
approach to CFS caused a lot of harm.

In the next few years, there will be more antiviral drugs, some of
which have been shown in preliminary trials to be helpful, and in some
cases, curative in cases of CFS (3, 4). I trust that the new editor will
be more objective and keep readers informed of these developments. In the
meantime, please think before you dismiss someone as a somatiser etc. And
why not take on board some of the insights offered by your colleagues who
know the illness first hand? We may not be able to walk very well, but
that doesn't mean we can't be objective or professional.

1. English, TL. Skeptical of skeptics. JAMA 1991, 265, 964

2. Goudsmit, EM. The psychologization of illness. In Food Allergy and
Intolerance, 2nd Ed. J Brostoff, and SJ Challacombe (EDs.) London:
Saunders: 2002. chapter 49.

3. Ablashi, DV, Peterson, D., Levine, S., Gupta, S and Whitman, J.
Human Herpesvirus-6 variant A infection in CFS patients and the use of
anti-herpes compounds, immunomodulator and a whey protein (InmmunePro Rx)
to suppress infection and improve symptoms. Chronic Fatigue &
Fibromyalgia Forum, 2003, December, 5-8. (Published by the AACFS)

4. Dalakas, MC. Enteroviruses in chronic fatigue syndrome: now you
see them, now you don't. JNNP, 2003, 74, 1361-1362.

Competing interests:
I am a health psychologist with ME