5th May 2009

Dear Mr. Turner,

APPG Inquiry on NHS service provision for people with ME

Invest in ME have read the revised Terms of Reference of the planned APPG Inquiry.

We previously made comments in November 2008 regarding the terms of reference and are glad that some of those recommendations were acted upon.

However, we have some concerns both in regard to the planned Inquiry and the Terms of Reference.

In the Background the second paragraph discusses ME and the WHO definition and the comments therein underline what is wrong with this proposed inquiry.

The inquiry is entitled “NHS service provision for people with ME’.

We assume, and expect that ME does mean the World Health Organisation classification (ICD G93.3) classification.

To state that “to use only the precise WHO classification of M.E. above will impede access to information from the NHS” already shows the problem and any subsequent responses from NHS departments will undoubtedly be unreliable due to this very issue.

It is important to use precise terminology.

Any inquiry should make it clear it is for people with ME as in ICD 10 G93.3 and not for chronic fatigue as in ICD10 F48. 

Any inquiry has to be objective and there should be no expectations of the outcome being successful or not.

Many of the clinics mentioned as being established by the DoH are called Chronic Fatigue Services.

If this Inquiry aims to be precise it has to ensure information being collected is not relating to chronic fatigue patients.

A major concern amongst ME patients regarding services being provided is that there are no biomedically-led services for ME patients in the UK. 

Chronic Fatigue clinics offer CBT and GET which patient surveys have shown to be useless at best or harmful at worst.

On the specific areas of the inquiry we wonder whether data will be collected from clinics that call themselves Chronic Fatigue Services?

If so then that data is invalid for an inquiry discussing ME.

The planned inquiry Terms of Reference still do not ask how much is being spent on a biomedical approach into treating ME as opposed to therapy-led  approach.

This is especially important as many feel that money is being wasted on the current model of care, especially by the current CNCC clinics which offer only therapy-led approaches to ME.

The TOR do not ask how much is being spent on testing and ruling out other illnesses as opposed to management advice and CBT/GET?

Returning to our previous comments from last November which have been left unanswered -

There is no tie in with the Gibson report. Would it not be more important to investigate vested interests mentioned in the Gibson report which are stopping biomedical research taking place or why the substantial funding of biomedical research which the Gibson report recommended has not materialised?

It would be better simply to force the Secretary of State for Health to answer why he has stated that he will not consider the recommendations from the Gibson report and why he feels NICE supersedes the Gibson report when almost all ME patient organisations and charities are condemning the NICE guidelines.

Why doesn’t the APPG pick up the initiatives from the Gibson report, which are still valid, and force through these changes?

Asking SHA/PCTs questions regarding the information they provide or the treatments and interventions to be used for ME patients will likely only elicit responses based on the NICE guidelines anyway – and the NICE guidelines are unacceptable and have been rejected by the majority of the ME community.

We still believe there is unnecessary haste in performing this inquiry and will only divert people’s attention, resources and time – more time lost for many with this illness and their families.

What ought to be examined is the compete lack of funding for biomedical research to provide a cure for this illness?

Perhaps the APPG’s attention should be directed to forcing through change in government and MRC policy to allow biomedical research into ME to be performed which, in turn, would allow acceptable services to be developed.

Yours Sincerely

Invest in ME