'CFS/ME' clinics are inappropriate....

[Guest guest]

From: Ian

To: Des turner

A need of accountability

and a firm esolution: update

Dear Dr ,

Given the concerns that were raised within the

statement which was read out (and minuted) at the

APPG meeting in January this year, supported by 504

signatures, and bearing in mind the APPG's stated

purpose, it is clearly vital and appropriate that every

effort is made by APPG Officers to issue a clear

statement as to what the Inquiry into NHS service

provision will be looking to achieve, and which

illness is being Inquired into.

The CMO report recommendations may have been

accepted by government, but they were never fully

accepted by those actually suffering G93.3 Myalgic

Encephalomyelitis: neither did they have their

expectations raised that major improvements to the

provision of primary and secondary healthcare

services were going to happen as a result of the

reports publication. Seven years on those that were

accused of being sceptical and cynical at the time

have clearly been proven to be very astute.

Are those same people, who are again voicing similar

concerns, going to continue to be ignored, or will

they be allowed to play an active role? It is quite

clear that G93.3 needs to be stated in the Terms of

Reference for this new Inquiry, as does a need for a

biomedical approach. We draw your attention once

again to the statement that was read out and now

reproduced below:

STATEMENT TO THE APPG: ***

" We are a group of individual people suffering from

or closely connected to someone suffering from

Myalgic Encephalomyelitis, also known as Chronic

Fatigue Syndrome; an illness classified as

neurological by the World Health Organisations

ICD-10 under code G93.3.

We advise the APPG today of the following:

From the evidence available, it has become apparent

that the majority of NHS 'CFS/ME' clinics do not

adopt a suitably biomedical approach towards M.E.

sufferers. Instead, these clinics inappropriately focus

on a Cognitive Behavioural Therapy approach, some

combined with Graded Exercise Therapy approaches,

neither of which has been shown to be effective

treatments for M.E. sufferers, and for which there is

evidence of potential risk to patients from both

treatments.

We advise you that, by not focusing on a biomedical

approach to diagnosis and treatment/support, and

by focusing on controversial psycho-social

treatments, such clinics are causing M.E. sufferers

to be put at risk, both physically and

psychologically.

We therefore feel the approaches of these clinics are

inappropriate for M.E patients.

In addition we remind the APPG of its duty to

safeguard the interest of ME sufferers, and ask that

it immediately clarifies its ambiguous position of

supporting the setting up and continuation of the

CFS/ME clinics - especially as that support is also

being given on the extremely vague pretext that they

are " a base to build from " , despite all evidence to

the contrary. We also remind the APPG that their

remit is to support, only the WHO code G93.3 of

ME/CFS, and therefore believe an unequivocal

position of insistence on only a biomedical approach

should have been taken from the outset.

We trust that the APPG will now acknowledge that

there are, within the ME/CFS community, serious

concerns about and objections to the approaches of

the majority of the NHS 'CFS/ME' clinics, and have

this formally entered in the minutes.

*** STATEMENT ENDS

In the circumstances, we must therefore reiterate

and emphasise that, if an Inquiry into NHS service

provision is to have any relevance, the issues of:

1. The WHO ICD-10 status of G93.3

(neurological) having been assigned

to ME/CFS;

2. The need for a bio-medical approach

to this illness;

3. The objections made by people in the

ME/CFS community to the current

service provision, and exactly why

those objections are being made;

must form part of the Terms of Reference.

Yours sincerely

Ian McLachlan

Kennedy