Dear Dr Thomson

Invest in ME is a UK charity which promotes better education, more awareness of and the need for funding of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).

In the recent RCPCH submission to the National Institute for Health and Clinical Excellence
CG53: CFS/ME Guideline Review Consultation your organisation commented on page 3 the following –

Regarding the epidemiology of chronic fatigue syndrome: as a
psychological illness with physical manifestations, clinical experience suggests that the incidence appears to be falling in children and young people. We think a future update should address whether this is correct and, if so, why.
 

Invest in ME are concerned by this statement as it is at odds with the WHO classification of ME, PVFS and CFS as a neurological illness coded in ICD10- G93.3. The classification is also accepted by the UK government Department of Health.

If the RCPCH is viewing ME, PVFS and CFS as a psychological illness with physical manifestations then that perhaps explains why we are increasingly being contacted by parents who say their children are accused of not trying hard enough or not wanting to get well if they fail to recover on the strict activity management programmes on which they are placed - thanks in no small part to the failings of NICE. These families have also been threatened with child protection orders and are therefore afraid of putting in formal complaints.

Could you please confirm if this is the view of RCPCH regarding ME, PVFS and CFS and is this how paediatricians are trained to believe in their training?

If it is not please can you publicly state what the official view of the RCPCH is?

If the above statement does reflect the official RCPCH view then your organisation's seemingly woefully inept and erroneous view of ME (ME/CFS) needs to be urgently reviewed.

May we suggest you attend the 6th Invest in ME International ME/CFS Conference 2011 on 20th May in Westminster, London, as guest of Invest in ME? A conference programme is already available at this address (http://tinyurl.com/659edzr). At the conference you will be able to view the overwhelming biomedical research which the leading experts are performing in relation to ME, something which NICE and the RCPCH seem to be totally oblivious to.

Amongst the researchers is Dr David  Bell, a paediatrician with enormous experience of treating children with ME.

The RCPCH stated objectives are –

·        Educate and examine those concerned with the health of children

·        Advance the art and science of paediatrics

·        Raise the standard of medical care to children

·        Advance the education of the public in child health

We would respectfully submit that the RCPCH statement to NICE above fulfils none of these objectives and does your organisation enormous damage.

We welcome you to our conference where, perhaps, you would be willing to present an updated view of the RCPCH position on ME,

Yours Sincerely

Kathleen McCall
The Chairman and Trustees of Invest in ME
 

reference:

http://www.nice.org.uk/nicemedia/live/11824/53853/53853.pdf

National Institute for Health and Clinical Excellence
CG53: CFS/ME
Guideline Review Consultation Comments Table
1-14 November 2010