Friday, February 26, 2010

More responses to BMJ

Thanks to Tom for keeping track of these!  

A human rights issue
Rob J. Arnoldus   (22 February 2010)

Defeated ? Not this carer.
Greg P Crowhurst   (23 February 2010)

Ernest Roberts   (23 February 2010)

Yes, it is time for a rethink
John Gartside   (24 February 2010)


A human rights issue
22 February 2010
Rob J. Arnoldus,
3001 HA Rotterdam, The Netherlands

Santhouse et al. are proponents of the use of Cognitive Behaviour (CBT) and
Graded Exercise therapy (GET) to cure a neurological illness.
Santhouse et
al. ignore the documented pathophysiology of ME/CFS, and disregard the
reality of severe ME/CFS in patients like Lynn Gilderdale.

There is enough reason to believe that the adoption of broad criteria for
ME/CFS does stigmatize patients and "will have crucial influences on CFS
epidemiologic findings, on rates of psychiatric co-morbidity, and ultimately
on the likelihood of finding a biological marker and identified etiology"

There is evidence that in certain situations psychotherapy can do harm to
ME/CFS patients. We have to consider that the debate is not only about
rigorous science. At stake is the struggle for honoring elementary human
rights to ME/CFS patients

1. Jason LA, Richman JA (2007). How Sciences can stigmatize: The case of
chronic fatigue syndrome, Journal of Chronic Fatigue Syndrome, 14, 85- 103.

2. Mitchell R, and Mitchell V (2006). CBT, GET And Human Rights, From the
IiME Response to the NICE Draft Guidelines, Invest in ME.

3. Morris D (2001) The lived experiences of ME/CFS: a study into human
rights and equity in tertiary education, ME/CFS society, Adelaide,

Competing interests: None declared


Defeated ? Not this carer.
23 February 2010
Greg P Crowhurst,
Full time carer

I have spent the last sixteen years caring full time for my wife who has
very severe ME. The greatest challenge those of us who seek treatment for
their loved ones face, is the ongoing struggle to get ME removed from its
association with generalized fatigue states.

Far from feeling "defeated", however, there is a real sense that at last the
tide is beginning to turn our way ; that the world is finally waking up to
the true horror that is ME.

Those of us who have fought so long for biomedical recognition are buoyantly
optimistic. This editorial shows how it is the psychiatrists, whose
"unproven beliefs and assumptions are presented as fact"
(Hooper 2010) who
face defeat ; how they have nothing to offer the severely affected , except
an increasingly discredited , vapid, ideology, that has so destroyed lives.

Have Santhouse et al any idea what a struggle everyday life is like for the
severe ME sufferer ? My wife describes how : "Having severe ME is
unimaginable ; the experience is so different , intense and unremitting than
anything I have ever experienced before. I am never unaware of the range of
symptoms that rage through my body , and are dominated by intense never
ending pain in every millimetre of my skin and muscles, over and throughout
my whole body; head shoulders, back, front , arms legs, hands , feet, toes ,
fingers, eye lids , scalp the soles of my feet, the tip of my nose , my
eyebrows even. They all burn, throb, tingle, itch, and hurt in ways
indescribably unbearable , along with other unusual sensations"

As Dowsett (2006) points out , : "ME/CFS affects more Americans than AIDS,
lung cancer and breast cancer combined, more people than have multiple
sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion
annually in lost productivity. More importantly, nearly 90% of patients have
not been properly diagnosed. Recovery rate is poor, estimated between 5% and
10% of patients attaining total remission. Patients can be as functionally
impaired as those suffering from diabetes, heart failure and kidney disease,
and are often as severely disabled as those with heart failure, late-stage
AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive
pulmonary disease). "

Given the level of concern raised not just by patients but professionals,
listed by Williams (2009) , about NICE's irrelevance to neurological ME ,
Santhouse et al's recommendation of CBT and GET for the severely affected is

Association of British Neurologists: "it almost seems that a select group of
psychiatrists with a polarised view of this complex condition is directing
the development of the guideline from 'behind the scene' "

Association for Psychoanalytic Psychotherapy in the NHS :"It is highly
misleading to state that CBT is the therapy of first choice, since the only
relative efficacy RCT quoted in the Guideline shows that counselling has
better outcomes than CBT."

British Association for Counselling and Psychotherapy (BACP): "responses to
the Action for ME Membership Survey rate CBT and GET as the least helpful of
a range of interventions..."

British Dietetic Association: "It is unhelpful to simply state that
'Exclusion diets are not generally recommended for the management of CFS/ME'
when irritable bowel symptomatology is quite common in this illness."

Chartered Society of Physiotherapy: "If 50% get worse with GET, why suggest
it as first line of treatment?"
College of Occupational Therapists: "The
College has serious reservations about the suitability of this Guideline."

ME Research UK: (Commenting on "…CBT is an evidence-based treatment for
CFS/ME…). It is not. The evidence base consists of only five trials which
have a validity score of less than 10."

National CFS/ME Observatory: "The belief that evidence-based guidelines can
be constructed on such an inadequate evidence base is, in our opinion,

National Coordinating Centre for Health Technology Assessment: "NICE largely
pays lip service to the principle of consensus, with patient evidence being
viewed as biased and virtually ignored".

NHS Plus: "the advice given to maintain exercise even when there is an
increase in symptoms is potentially harmful and dangerous, and the supposed
negative effects of deconditioning would be negligible in comparison"

Royal College of Paediatrics and Child Health: "There is a danger in relying
solely on information from systematic reviews of clinical and randomised
trial reports for non-pharmaceutical treatments that are not easily defined
or replicated, such as CBT and GET."

Royal College of Physicians of London: "We think that this is a potentially
dangerous statement (ie.) that with increases in CFS/ME symptoms, exercise
or physical activity should be maintained to avoid the negative effects of
deconditioning. We are not aware of any clinician who would make this
recommendation, except in a very mildly affected patient."

Sheffield South West Primary Care Trust: "The narrow focus of the NICE
Guideline may lead to helpful approaches being undermined and patient
preference / clinical judgment being undervalued. All clinicians do not
subscribe to the 'CBT model of CFS/ME', and (it) does not seem to be well
received by many ME Support Groups either".

(Source Williams 2009)

Significantly, NICE (NICE "2007)does not recommend CBT and GET for people
with Severe ME, who are excluded from Criterion 7 of its August 2007 Audit
Criteria ; those ME patients "provided with cognitive behavioural therapy
and/or graded exercise therapy as a treatment approach."

My wife has not known one single moment free of throbbing, screaming pain, a
host of neurological symptoms and intense, unfathomable suffering, in the
last 16 years.

Santhouse el al's article will only contribute to the abuse, neglect and
disbelief that ME sufferers and Carers have to deal with.

One day though, the depth of the ME medical scandal will be revealed,
especially with 5000 published medical papers and recent cutting -edge
research into the XMRV retro-virus, dispelling once and for all the myth
that ME is a psychiatric condition.

Defeated ? Not this carer .

References :

Dowsett B (2006) ME/CFS Epidemiology & Epidemics  

Hooper M (2010) Magical Medicine: How to make a disease disappear, PRESS

NICE (2007) Audit criteria Chronic fatigue syndrome/myalgic
encephalomyelitis (or encephalopathy)  

Williams M (2008) A NICE Dilemma  

Margaret Williams 2009 : Examples of concerns raised by professional bodies
about the NICE (draft) Guideline CG53 on "CFS/ME"  

Competing interests: None declared


23 February 2010
Ernest Roberts,
NW 10


Being removed from circulation by what may eventually turn out to be a
chronic infectious disease (1) is an interesting experience. One of the more
striking aspects of that experience is discovering the strength and fixity
of irrational lay beliefs about exercise and positive thinking as antidotes.
The existence of an estimated 17 million people worldwide (1) with ME,
testifies to the problems of irrational folk remedies, authority,
superstition, and to epistemic misunderstandings about what constitutes
reliable evidence. Logical thought and good hypotheses do not seem to occur
naturally in the human brain, and when affected personally by a disease
outwith the experience of most others, one can begin as a non- scientist to
appreciate in often dramatically concrete terms, why the methods and
disciplines of science developed.

Announcing that an atmosphere ('air') can subvert evidence, Alistair
Santhouse, Matthew Hotopf and Anthony David suggested that, although it
would be inappropriate, they would like to have been able to comment on a
matter best decided by judge and jury, had the coroners inquest and post-
mortem data along with other personal details been available to them. They
reflected on finding the media portrayal of a condition the most striking
aspect of the death of a young woman, and revealed how much they regretted
the loss of a media opportunity to introduce some of the consequences of
ignorance ('controversies') into a debate which had focused on the rights
and wrongs of assisted suicide, which they believe will present a similar
challenge for professionals in the future.

They recommended sometimes considering another diagnosis for the original
diagnosis, and if that doesn't work out, the next step is to ask about the
rate of premature death, which is not increased in the first diagnosis, but
is increased in another diagnosis, which might cause the first diagnosis,
and they asserted that nobody would dispute that the second diagnosis can be
treated, exactly the same as it can be treated in cancer and motor neuron
disease, where presumably in this context, doctors also don't know what
they're dealing with and don't get involved. People don't trust these
doctors, the profession doesn't like debate, and there's even a view to
persuade doctors it's (ME) a real illness. Doctors have treatments that
often don't work properly, but do work, and can trigger dramatic recovery.
The internet is dangerous, it doesn't save lives, and doctors in emotionally
charged situations must go with these treatments in case they work, because
it is their duty.

Santhouse, Hotopf and David suggest that the alternative to these treatments
is no treatment, that this is disastrous, and people may feel that the
medical profession has given up on other people as a "hopeless case".
are valuable insights, and I thank the authors for their time and trouble. I
found the military metaphor most helpful.


Science 23 October 2009: Vol. 326. no. 5952, pp. 585 - 589

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with
Chronic Fatigue Syndrome

Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost,
Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni,
Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman, Judy A.

Competing interests: None declared


Yes, it is time for a rethink
24 February 2010
John Gartside,
Patient now retired (ex IT worker)

Mssrs Santhouse et al have raised important issues (to them) of the
Gilderdale case - not for them the simple tragedy of a wasted life, a broken
family; no, more importantly, is the incorrect and frankly sensational
portrayal of CFS/ME by irresponsible journals such the Daily Mail leading
the gormless public to hold incorrect beliefs in contradiction to those held
by knowledgeable clinicians.

First of all there is the issue of the diagnosis of Lynn Gilderdale and
those others with very serious symptoms - even a psychiatrist confronted
with Lynn during her lifetime might have queried whether it was all in her
mind that she had lain in bed, apparently in pain, when other alternative
lifestyles might have beckoned.

Second, there is the issue of the unsatisfactory nomenclature for this
condition. Chronic Fatigue Syndrome - too vague; myalgic encephalomyelitis -
are you joking; where does that come from?

Third, there is the tendency of those suffering from CFS/ME to commit
suicide whiich, of course, is a characteristic of those suffering from
severe depression. In other words, some of those with CFS/ME are suffering
from depression which nobody argues is a psychiatric condition. In other
words, the idea that people might commit suicide simply because rationally
they see no future for themselves is clearly erroneous.

In summary, cases of CFS/ME are not severely ill, because CFS/ME is a mild
illness treatable by simple interventions. Some who believe themselves to be
ill have made themselves depressed which can easily be treated with drugs.
Those who are severely ill have been misdiagnosed as suffering from CFS/ME.

What we have therefore is a psychiatric disorder in which the patient has
developed a false belief about their mental and physical state which can be
cured by actively encouraging them to get off their backsides (GET) and pull
themselves together (CBT). I suggest Heretical Dysmorphopsychic syndrome
(HDS) to be used henceforth for this condition.

Possibly there will be cases as a result of the Daily Mail article and
others, of anxious parents confronting there teenage child on the stairs,
all made up and ready to go, bungling them back up the stairs and into bed
with the curtains drawn, telling them they are ill and will need to rest
indefinitely and forgo the rest of their childhoods and beyond; these
parents may be suffering from HDS by proxy (or Dacreitis).

For myself, I have had CFS/ME since my mid twenties. I had had glandular
fever and was off sick awaiting the day when I would wake up one morning and
feel OK again. That day never came; I saw my doctor who accepted that I had
a medical problem but that he had no idea what it was so could not refer me
to a specific consultant. I returned to work not because I was better but
because I detected no improvement in my condition and did not wish to become
a permanent invalid. For many years I assumed my condition was unknown to
medical science and quite possibly unique. Then I started reading about
'yuppie flu' and saw similarities. But as there was no cure and I was
anxious not to compromise my working status I took no action. Eventually I
was referred to a immunologist who diagnosed my condition on the basis of my
history. But to what end? None, until there is some proper palliative or
cure, which can only occur from scientific investigation. I suffered an
illness which the juvenile immune system evolved to see off without
noticeable symptom but which the maturing (thymus atrophied) immune system
will not handle without significant symptoms and in a minority of cases, a
continuous pathological state, in my case characterised by memory and
concentration difficulties and persistent and easily aggravated mental and
physical fatigue affecting both my working life and more importantly and
profoundly, my social life.

At the moment the only hope for suffers is that other more enlightened
researchers in more enlightened countries will come up with the goods
because it is not going to happen under the auspices of the NICE guidelines.

Of the very many regimes, apart from just keep going, I have tried in order
to rid myself of my affliction, the only one which has helped is
Transcendental Meditation (TM); that does provide some respite but no cure.

Competing interests: None declared  

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