Friday, February 19, 2010

More letters to the editor

7 more Rapid Responses in reply to the BMJ editorial, "Chronic Fatigue Syndrome"


[Note that some people's responses did not go up when they first submitted
them so they contacted the letters' editor to enquire for the reason, edited
their letter slightly and got it through. Tom]

http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231497

A dangerous path to take
Linda A Crowhurst   (18 February 2010)

I adore CBT
A.F. Andrew   (18 February 2010)

"It's wrong and misguided to "Imagine""
Barbara J Robinson, Frances Groen   (18 February 2010)

High time to broaden the field
Jackie A Stableforth   (19 February 2010)

CBT The Mythology
Gerwyn j Morris, Stephanie Fulton   (19 February 2010)

Re: I adore CBT
Dr John H Greensmith   (19 February 2010)

Shedding a little more light on 'Defeatism'
Doris M Jones   (19 February 2010)

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A dangerous path to take 18 February 2010

Linda A Crowhurst,
Very Severe ME Sufferer
N/A



Some of the points made in the Editorial are indeed correct, for example
"the alternative to treatment is no treatment and this can have a disastrous
effect on the patient, who may feel the medical profession has given up on
them as a hopeless case."
There is indeed currently no effective treatment,
no cure and little hope for people who are genuinely suffering from very
severe ME, like I have done for the past 16 years.

What is missing from this article is any acknowledgement that it is the
psychiatric lobby's influence in ME that has led to the confusion over what
ME is and the lack of physical treatment and the lack of proper biomedical
investigations. The psychiatric approach is to deny the physical reality of
an ME patient's illness and to promote the unproven view that a person is
ill because of maladaptive thinking and de- conditioning.

This is a very dangerous path to take , one which has led to a negation of
the severity of illness and of the real physical suffering, that people
endure. It has led to the most severely affected housebound and bed-bound
people being left for decades , like myself, without appropriate physical
investigation and biomedical ME support . It has also led to the shocking
reality that the only front-line treatment currently being promoted,
entirely wrongly, by the NHS, is psychosocial, completely ignoring the
underlying physical dysfunction.

The severely affected are not even involved in research so how can their
needs be known ? How can this article promote CBT and GET for very severely
affected patients , when the psychiatric view is a complete denial of their
very real , totally disabling physical experience ? This article will lead
to further confusion in the medical profession , will potentially endanger
people's lives and lead to untold suffering if followed.

Most people with very severe ME would find it too difficult to even be in a
room with other people, due to acute hypersensitivity and a multiplicity of
severe physical symptoms, let alone engage in therapy of any description,
physical or mental. Yet this issue is not even raised in the article.

Reading this paper you might be convinced that ME is a psychiatric disorder
. In reality ME is a neurological disease with physical multi- system
dysfunction; a fact that is frighteningly downplayed and denied by the
psychiatric lobby.

What is omitted from this article is a warning of the very real dangers of
imposing CBT and GET on very frail, vulnerable, ill people for whom exercise
is contra-indicated and who suffer such devastating levels of cognitive
dysfunction, as a result of their disease, that CBT becomes equally as
dangerous as physical exercise. Mental exertion can have an equally
disastrous impact upon the body , leading to an increase in already severe
symptoms and a deterioration that can be permanent and may lead to death.

Patients with severe ME do not want CBT and GET. What they want is
biomedical research, significant biomedical testing and new tests and
treatments available on the NHS. What they need is the psychiatric
interpretation and powerful influence out of ME altogether. It is long
overdue.

Competing interests: None declared

====================================

I adore CBT 18 February 2010

A.F. Andrew,
Family physician
Perth, Australia



In the wake of Lynn Gilderdale's death, one would have expected an
editorial in the BMJ to acknowledge the devastating effects of severe ME,
and try to lead the way forward to find proper treatment and hopefully a
cure.

One would have expected that such an editorial would mention the fact that
ME has been classified by the WHO as a neurological illness since 1969. A
fact that most doctors, including myself before I fell ill, are not aware
of.

Most doctors are led to believe, by a small group of psychiatrists, that
this illness, either doesn't exist, or is based on false illness believes,
and is all in the mind. That the psychiatrist changed the name 20 years ago
from ME in CFS, and then changed the criteria, is just a small detail.

The basis of CBT for ME/CFS is fantastic. First, you blame the patient for his illness, and then when CBT doesn't cure him, you blame him for not being motivated. When I'm fit and well again, I will use this same principle when I see a patient with for example, a severe infection. If the antibiotic I have prescribed, doesn't solve the problem, then I will blame the patient. That the culture has shown that I prescribed the wrong treatment, is something I will ignore.

According to the three psychiatrists, CBT and GET are super treatments for
ME. Lynn at one stage, couldn't swallow anymore, to brighten up her life
even more. Her doctor then had the choice to treat swallowing problems, with
the so fancied behavioural therapy, i.e. CBT, or with exercise therapy, also
called GET, the other psychiatric favourite. Luckily, Lynn's treating doctor
inserted a tube, so she could be tube fed. Although I agree with the
psychiatrists that CBT is best.

You might still think that ME doesn't exist, or, that it is all in the mind,
and continue to be incredibly hostile to your ME patients. However, you
might be next and become an ME patient as well, just like myself and many
others. And I can assure you, you will be in for a big shock, and at the
same time, you will also find that this illness has got nothing to with what
you have been reading in your magazines, written by CBT psychiatrists. So
hip hip hooray for CBT, because who needs proper treatment for a severe and
very disabling illness anyway?

Competing interests: I am a doctor with ME who simply adores CBT

================================

"It's wrong and misguided to "Imagine""
18 February 2010

Barbara J Robinson,
carer/teacher
Suffolk County Council,
Frances Groen



Dr. Broome, you stated; "I imagine risk to life would be consequent upon
profound immobility and factors such as bed sores, chest infection and
malnourishment, all of which are avoidable."

I'm afraid you imagined wrongly. Where is your clinical evidence for this
statement?

You then state, "There are successful treatments available and several
specialist units in the country for those with severe forms of the illness."
Please tell me how many specialist ME/CFS inpatient beds exist in the UK and
where you managed to ascertain this information?

There are approximately 60, 000 severely affected patients, in my experience
(since 1997), most of who receive little or no support from statutory
services. Most severely affected, housebound patients, are nursed and cared
for by their families.

In my experience, those that approach services such as Social Care, or other
"specialist services" (such as yours) which are sometimes requested by
desperate patients with secondary needs, are, more often than not, refused
even an assessment. Reasons given, Not meeting "the criteria"for assessment
is the norm, or following assessment, being being turned down for support
due to ME patients "not meeting the criteria."- even though these patients
have "critical and substantial" needs, including secondary well being
needs." I know from personal experience.

Many areas have scant, domiciliary ME/CFS services for the housebound. Many
clinics will not serve the severely affected at all, excluding them from
their remit, only coping with "the walking wounded", such as one prominent,
"specialist" unit in London.

What I say may defy believe, but that is the reality of the situation in
2010. I suspect the services currently offered, primarily NICE recommended
CBT, GET etc, have been carefully tailored to the meagre, limited budgets
available from the Department of Health, Strategic Health Authorities and
further "pruned" by local "World Class Commissioning"- a contradiction in
terms if ever there was one.

Typically, this pans out to approximately £700 for a referral, diagnosis,
and basic, time limited advice for management before being passed back to
GPs who mostly admit that they don't have a clue and are not trained or
competent to cope.

No wonder patients fall to the risk of despair and worse; through the total
abandonment of the state currently, and the manifest failure of duty of care
generally. As for access to specialist inpatient care, this rarely gets past
the PCT's Special and Exceptional Funding Committees.

Competing interests: None declared

==============================

High time to broaden the field
19 February 2010

Jackie A Stableforth,
UK diagnosed ME/CFS patient, Former RGN (Staff) Coronary Care, Middlesex
Hospital, W1
n/a



The authors, Santhouse et al state that Lynn Gilderdale's symptoms were so
severe that "clinicians should consider alternative diagnoses that would
better explain the symptoms". It is difficult to know how they would have
done this, as any but the most basic tests and treatments are absolutely
proscribed under current NICE guidelines for CFS/ME, especially after one
has been unfortunate enough to receive such a diagnosis.

In my view, the current system is a recipe for patient - doctor mistrust. If
standard tests come back negative then, as the authors correctly indicate,
when the patient is so ill (many patients initially are too ill even to get
to a surgery on their own, not just 'severe' cases), further testing is
common sense.

However, what currently happens is the patient is advised to undergo 'GET'
(when post exertional malaise was a presenting symptom), or leaves with a
prescription for antidepressants and enrolment on a CBT course fundamentally
designed to manage unhelpful 'illness beliefs'. But without fundamental
robust and appropriate medical treatments for their condition, how can there
be trust? Of course patients despair by this stage.
They have already been
prostrate with illness and exhaustion for months, every aspect of their life
is in tatters (health,finance employment, family relationships, self
sufficiency), the doctor has ignored or overridden basic presenting symptoms as being of any consequence (however well intentioned) and now they have
been effectively discredited. And underneath it all, no one really has any
idea what is essentially wrong and the patient is left effectively back
where they started only now in isolation, wondering where it all went wrong.


The lack of a basic diagnostic test and biomedical treatment is what is most
likely to be hampering physicians (and insurers), not defeatism as such.
This can only be gained by serious investigation into underlying aetiology -
not by application of general 'management tools'. Patients across the entire
spectrum of CFS/ME have many disabling physical abnormalities other than
simple 'fatigue' (which in itself fails to describe the experience). If we
continue to focus simply on 'fatigue' and to limit physicians to basic
tests, then as some biomedical researchers have pointed out, ME/CFS can only
effectively become a 'dustbin diagnosis'.

By way of example, an equally damaging illness Haemochromatosis also can
present with extreme fatigue, headaches, pain and other symptoms common to
CFS and has been mistaken for 'CFS', (according to one GP who diagnosed a
friend of mine). 'Fatigue' can be seriously misconstrued when only the usual
tests are applied - the Serum Ferritin testing he required is also not
standard - and patients are misdiagnosed. However, at least there is a test
for haemochromatosis and once identified, referral to a hospital consultant
and full biomedical treatment in specialist centre. Imagine if his GP had
stopped looking? One shudders to imagine the further damage to his organs
had only CBT and GET been recommended. If only CFS patients could be so
lucky.

Having worked previously as an NHS Staff Nurse (Coronary Care) and coming
from a medical family I truly believed that UK medicine in the NHS was
cutting edge. However once diagnosed with CFS/PVF/ME, I was shocked to find
that a highly trained group of professionals whose intelligence I had always
respected had no answers, but most damagingly, weren't prepared to look much
further for them (and was in one case breathtakingly dismissive). The
'pioneering spirit of the scientists of old' appears to have become bogged
down in 'legal guidelines' and even individual well intentioned doctors are
contrained by budgets, accepted treatments for accepted ICD codes, insurance
purposes and so forth. CFS patients find that in spite of their insistence
that something more serious and physical is afoot, in practical reality
there is so little help to get to the bottom of it. And once this happens,
the patient effectively becomes sidelined from the whole medical process.

What may not readily have been accepted by authors such as Santhouse and
colleagues, is that this is in some respects a new condition/s and set of
circumstances that transcends our previous knowledge base. It does not fit
into the old box, the old belief systems and we don't yet have all, if in
fact any, of the answers. ME/CFS now requires new and adventurous lines of
enquiry - but we are hardly likely to find them if we are clinging onto the
old unproven theories and not looking. For doctors and scientists this could
be an exciting moment of opportunity and outstanding discovery, and an
opportunity to listen to patients, to work with them and their experience of
the illness in the investigative process - not theorise wildly in spite of
them.

When I read articles singing the praises of CBT and GET as if they could
make any real difference in these conditions, I realise that it is not the
patients that are beset with 'mistaken illness beliefs'. However the authors
are right in one regard. There really is "A perception that this is an area
of medicine where contrary views are not to be voiced, and where scientific
enquiry is to be limited, [that] is damaging to science and harmful to
patients."

As a patient therefore, I would now like to finally add my voice. Patients
have been very patient with the tired CBT/GET mantra and have long been
swept along with the current state of affairs to the detriment of their own
health and in the case of Lynn Gilderdale and many like her, their lives. Is
it not time to admit it is not working as hoped? Is it not time to come up
with something more robust, or to leave the field?

If as a doctor you are 'reluctant to get involved', as the authors suggest
some are, we are equally reluctant to have you. ME/CFS patients do not need
fainthearted doctors.
Patients with this destructive illness have had to
withstand decades of social isolation, marginalisation and medical
mismanagement (however inadvertent or well intended), in addition to the
burden of being seriously ill. Any doctor who is unable to stand their
ground side by side with them in the midst of chaos and uncertainty is
unlikely to be suited to the rigourous demands and contradictions of this
budding field of medicine.

It is time to broaden the field, with fresh minds and fresh ideas and to
branch out into something new.

Competing interests: None declared

===================

CBT The Mythology
19 February 2010

Gerwyn j Morris,
Psychologist
SA16 OAZ,
Stephanie Fulton



I refer to the article "Air of defeatism exists within the medical
profession that chronic fatigue syndrome can be treated" This article
trivialises the severity of the illness and contains a number of factual
inaccuracies.

NICE is selectively quoted.Nice actually point out that CFS/ME is a very
serious real illness of yet unknown origin and can be more disabling as
multiple sclerosis or late stage aids---There is no known cure or effective
treatment.

This should have been quoted.

NICE specifically make the point that CBT is not a treatment for the
symptoms but an aid to help patients come to terms with their illness. Is
this what is meant by" working"?

CBT has never shown any objective benefit

Some studies, using self reporting, have shown a subjective benefit on
fatigue i.e as assessed by the patient, but no effect at all on activity
levels when measured scientifically.


The confidence intervals in these studies are so wide as to make
extrapolation into a general ME/CFS population impossible.The studies are
clearly underpowered.

Many sufferers take their lives because living with the symptoms is
unbearable These symptoms cannot be treated

There is no robust scientific evidence to support GET although there was a
recent heart attack!

Would any pharmaceutical product obtain a product licence based on patient
self evaluation----or with the confidence interval values associated with
CBT studies.The answer is a resounding No!

Why therefore are sufferers of ME/CFS classified by the WHO as a
neurological disorder only offered CBT

Why were NICE instructed to ignore all the biomedical evidence when
draughting their guidelines

Yours Sincerely,

G J Morris BSc(Psych) LLB(Lond) Dip Law

Competing interests: None declared

====================================

Re: I adore CBT
19 February 2010

Dr John H Greensmith,
Founder, ME Free For All.org
BS16 5SW



I fear that some advocates and practitioners of the CBT/GET monopoly
treatment recommended for M.E. (Myalgic Encephalomyeltitis) sufferers, by
the NICE (National Institute for Health and clinical Excellence) Guidelines
of 2007, may have missed a certain subtle irony in A.F. Andrew, the Dr From
Oz's, "I adore CBT" declaration of interest (Letters, BMJ.com, 18 February
2010, http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231561) and taken it
as an endorsement to continue and expand the sevice, for which they need
little encouragement.

May I, therefore, draw attention to the latest review study (Twisk and Maes,
September 2009) of the treatments Cognitive Behaviour Therapy (CBT) and
Graded Exercise treatment (GET) for people suffering with M.E., which
confirms the findings of every previous study - including those of the same
people advocating and practising these treatments - that CBT/GET is not only
ineffective but potentially harmful for many patients with M.E.?

So, I say hip, hip replacement for CBT and GET as treatments for M.E.
sufferers.

Yours sincerely
Dr John H Greensmith
ME Free For All.org

Competing interests: None declared

=======================

Shedding a little more light on 'Defeatism'
19 February 2010

Doris M Jones,
Researcher and carer of person with ME
Ilford, IG2 6DZ



The above Editorial (1) contains statements which require further comment;
they may also support assertions made in earlier responses on the complex
condition usually referred to as 'CFS/ME' these days.

Recent media coverage of the tragic death of Lynn Gilderdale and her
mother's acquittal for attempted murder of her daughter was widely welcomed
by the ME community and those who support sufferers. The reason is simple:
For the first time the potential full magnitude of suffering by those
severely affected was aired in public.

Controversies and uncertainties over a diagnosis of Chronic Fatigue Syndrome
(CFS) exist largely because this artificial construct was created and is
much favoured by certain psychiatrists - fatigue being the declared cardinal
symptom. This stands in sharp contrast to Myalgic Encephalomyelitis (ME),
which has been classified as a neurolgical disease by the World Health
Organisation for over 40 years (currently under G93.3 in ICD-10, as
regrettably is CFS). The manifold neurological, immune and endocrinological
manifestations and complications of ME are well documented (2,3), linked
particularly to enteroviral infections, as have cases of death due to
cardiac failure, rare tumours, severe neurological complications or basic
end-organ failure, apart from suicides. Some recent studies confirming such
findings have been mentioned in earlier responses.

These facts and others relevant to ME were brought to the attention of the
then Chief Medical Officer, Sir Kenneth Calman, at a meeting arranged by the
Countess of Mar in March 1998 and supported by a document entitled 'The
Organic Basis of ME/CFS' (4) that included a special section on Severity,
Chronicity and Deaths. A copy of the Hyde et al encyclopaedic volume (2) was
also left with Sir Kenneth and DoH staff on that occasion. The establishment
of the CMO's Working Group on CFS/ME was announced in July that year. This
same information and much more was made available to all Key Group members
of the CMO's Working Group on CFS/ME during its deliberations. Furthermore,
results of 4 surveys on over 3000 patients in total were supplied to that
group, which included psychiatrists who ardently advocated the benefits of
Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).
Survey results showed clearly however that these two approaches were the
least effective (CBT) and potentially most harmful (GET) to patients. These
same survey results were also repeatedly presented to members of the
Guideline Development Group who compiled the NICE Guideline on CFS/ME during
its deliberations, but who took scare notice of them. To treat depression
where it exists with common antidepressant drugs has been shown to result in
potentially severe adverse reactions, without bringing about any real
improvement in the underlying physiological problems these patients have.

Had decision makers given more credence to patient surveys and reports and
considered some of the documented readily available evidence of the
organic/physical basis of the disease, the current reported defeatism within
the medical profession and the desperate plight of patients might not have
arisen.

With regard to the specific case of Lynn Gilderdale, it should be born in
mind that here a vaccination as well as infections were linked to the onset
of her illness which resulted in progressive serious health problems. Her
condition was so severe that she was hospitalised 50 times during her 17
years' suffering, as the Panorama programme revealed. - The proximity of
immunisations with onset of ME or an exacerbation of the condition have been
documented (5,6). An earlier longitudinal study from the general medical
literature recorded the fact that most hospital patients with post-vaccinal
neuropathies had a concomitant illness (7).

To discount factors like infections, immunisations, antibiotics, oral
contraceptives for women and drugs in general, and/or exposure to toxic
substances (e.g. OP pesticides, toxic metals etc) in the aetiology of this
disease is tantamount to ignoring key factors in a complex equation, in my
opinion (see also response from Dr Ellen Grant). Of course life-style
factors like nutrition and stress also play a role. As Dr Melvin Ramsay said
in his booklet 'Myalgic Encephalomyelitis and Postviral Fatigue States - The
saga of the Royal Free disease' (8), reflecting on his experiences as the
Consultant Physician at that Hospital during the 1955 outbreak: "I had long
harboured a suspicion that the triggering factor of ME is to be found in the
immunological state of the patient and research is showing that this might
be the case" (p26). Dr Shepherd said in his contribution to a recent Times
article (9), what is needed amongst others is research into the role of the
immune response to infections. It stands to reason that an impaired or
dysregulated immune system cannot deal effectively with infections, and we
are all exposed to countless toxic substances in the environment and in
everyday life.

So can ME patients get better and what helps? In 2001 I carried out a
long-term follow-up study on patients who had earlier completed detailed
questionnaires (10). This was a contribution to the CMO's Working Group on
CFS/ME. 22/174 patients (12.6%) reported that they had either regained
normal health or had almost fully recovered. Most had adopted a combination
of approaches, consisting of pacing their activities, adjusting their diets
and taking various supplements; some had also availed themselves of
Homoeopathy or Acupuncture. Two had regained their health mainly by
allopathic therapies: one by taking Thyroxin for a non- functional thyroid
gland, the other by having long-term antibiotic treatment. In my view
therefore another research area that should be explored with urgency is what
has actually helped patients regain normal or near normal health, other than
CBT and GET, which have had more than their share of funding often
accompanied by misleading publicity.

References:

1. Editorial on: Santhouse A et al. Chronic Fatigue Syndrome - Defeatism is
undermining evidence that CFS can be treated. BMJ 2010;340:738 (11.2.2010)

2. Hyde BM et al (Editors). The Clinical and Scientific Basis of ME/CFS. The
Nightingale Research Foundation, Ottawa, Canada, 1992.

3. Richardson J. Enteroviral and Toxin Mediated Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. The
Haward Medical Press, NY, 2001.

4. Dowsett EG et al. The Organic Basis of ME/CFS. Presentation to Sir
Kenneth Calman, CMO, DoH staff and the Countess of Mar, Richmond House,
London, March 1998.

5. Hyde BM et al (Editors). The Clinical and Scientific Basis of ME/CFS. The
Nightingale Research Foundation, Ottawa, Canada, 1992. Chapters 4 (p29); 12
(p115), 43 (p392), 73 generally.

6. Leeming J. Risks and Benefits. Nursing Standard, 17.5.1995,
Vol.9;34:22-23.

7. Pollock TM et al. Seven Year Survey of disorders attributed to
vaccination in North West Thames Region. Lancet 1983;i:753-57.

8. Ramsay AM. Myalgic Encephalomyelitis and Postviral Fatigue States - The
saga of Royal Free disease. Gower Medical Publishing, London, 1988 (p26).

9. 'Doctors, school, friends thought I was faking it'. Times 2 (Health),
25.1.2010, p6+7.

10. Jones DM. Follow-up Survey of ME/CFS/MCS patients. Contribution to the
CMO's Working Group on CFS/ME. April 2001.

Competing interests: None declared






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