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April 20th 2008.

Dear Mr. Balmer,

I am writing you from Canada in response to your letter about the upcoming

RSM conference on “CFS”, copied below. I am sure you are well aware, as all

of us who suffer from the WHO-defined, disabling neurological disease ME are

aware, that the research supporting the NICE Guidelines’ primary therapies

of CBT/GET are based on broadly defined population of patients who are

simply fatigued for a variety of reasons. The “evidence-based medicine” you

speak of in your letter is derived from research into this heterogenous

group, and thus inappropriate and inapplicable when applied to PWME.

Therefore it has everything to do with distortion, and is at the least

unscientific if not immoral (your words). Deliberately ignoring over 50

years of biomedical research into ME, much of it British, is patently

criminal towards this population.

ME and “CFS” are not the same, they are not defined in the same way, and

research carried out on this broad patient demographic have little to do

with those who have ME. So please, do feel free to have your conference on

“Chronic Fatigue”, but please do not apply your discussions and findings to

the neurological disease of ME. You cause us all great harm when you ignore

and undermine all biomedical research into ME. You effectively deny us

access to actual medical care for the disease we have, while recommending

therapies that are actively harmful to us, as is repeatedly shown in studies

of people with ME as vs. those with generalized multifactorial fatigue.

Sophie Mirza is not tired, she is dead from ME.

I have had ME since November 1st 1986, when I awoke with a high fever that

persisted for 3 years. Then, ME was a recognized entity internationally,

with only the US opting out of the international recognition and definition

of this disease. I did receive a proper diagnosis and such treatment as was

then available, but now I cannot find a GP who does not believe that it is a

“somatisation syndrome” despite all evidence to the contrary. Thus I am now

housebound with very low stamina, cognitive deficits, and a host of

disabling immune and neurological symptoms, but effectively no medical

treatment.

This disease has had a heavy negative impact upon not only my life but the

lives of my children. My son was also bedridden with ME for three years, but

recovered due to appropriate care (the cognitive impacts persist however,

impacting his access to education and career training). But my ability to

parent, to work outside the home, to have recreational activities and

interests, a social and intellectual life – in fact, to have a quality of

life and contribute to society, have been obliterated by this disease. A

small research study shows preliminary indications that the average age of

death in PWME is 25 YEARS earlier than the general population.

Britain was formerly a leader in the area of ME research, and now the world

is looking to you for guidance. Your conference is a malignant entity,

spreading disinformation about a nonexistent disease into the previously

healthy “tissue” of biomedical ME research. You seen to forget that MS,

Polio, and even AIDS were seen as being conditions of psychiatric origin

before the causative mechanisms were found. Don’t make the same old

mistakes.

Sincerely,

AJ Catchpole,

BC Canada.

I write in response to Dr Greensmith's letter

(North Devon Journal, 17 April 2008) criticising the

Royal Society of Medicine over supposed bias of a

forthcoming conference on Chronic Fatigue

Syndrome.

The RSM holds over 400 meetings a year as part of

its programme of medical education for doctors. A

small number of these are aimed at the general

public but our conference on CFS is not such a

meeting.

It has been set up to contribute to health

practitioners' understanding of this debilitating and

distressing condition.

The causes of CFS are not clear and our agenda was

drawn up to reflect current thinking on its diagnosis

and treatment, as outlined in the National Institute

for Health and Clinical Excellence (NICE) guidelines.

We are aware that Dr Greensmith and some

sufferers of the condition are unhappy that

psychiatrists will be giving presentations at the

meeting. This has nothing to do with distortion, nor

is it immoral or unscientific. The content of the

meeting is, instead, well-grounded in evidence-based

medicine and has been planned by a broad-based

academic planning group.

Dr Greensmith does not make clear what he means

by censorship and selective editing but his

accusation of inappropriate association with an

insurance company is completely untrue. No

representative from any insurance company was

invited to speak nor involved in the programme

planning. Nor has any insurance company contributed

any sponsorship to the meeting.

There are many groups aimed at sufferers of ME/CFS

and their carers. There is no way that our conference

- aimed at doctors - could include representatives

from so many organisations. We will be holding a

meeting for sufferers of CFS as part of our Medicine

and Me series, which aim to bring together patients,

carers, researchers, doctors and other health

practitioners to discuss care and research issues in a

particular condition.

Yours sincerely

Ian Balmer

Chief Executive

Royal Society of Medicine

1 Wimpole Street

London W1G 0AE

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