Letter to Mrs. Ann Keen at APPG for ME/CFS 22 January 2008

Invest in ME have sent the following letter to Mr Des Turner MP and asked that the enclosed questions be put to Mrs Ann Keen at the forthcoming meeting of the All Party Parliamentary Group on ME/CFS which is meeting at the British Parliament on 22nd January.

We received no reply from Mr Turner.

18 January 2008

Mr Des Turner, MP
House of Commons
London SW1A 0AA

APPG for ME/CFS Meeting 22nd January 2008

Dear Mr. Turner,

Invest in ME is a UK charity which is campaigning for more informed education and a national strategy for biomedical research into Myalgic Encephalomyelitis (ME/CFS).

Unfortunately we will not be able to be present at the APPG meeting on 22nd January 2008.
However, we would appreciate the following questions being addressed to Mrs. Ann Keen on behalf of Invest in ME and our supporters.

Please would you allow these questions to be put to Mrs. Keen?

1.  Mrs. Ann Keen has declined to come to the 3rd IiME International ME/CFS biomedical research conference on 23rd May in London, as has Mr. Alan Johnson, the Secretary of State for Health. Despite being invited to present or to participate in all three Invest in ME International ME/CFS conferences since 2006, the Health Ministers and the Department of Health have refused to send anyone to listen to or discuss with the experts who are speaking or participating in the conferences.

Yet the minister and the DoH regularly send out template letters to people with ME/CFS and their carers stating that there is little knowledge of the illness.

Can Mrs. Keen answer why it is possible for the DoH to decline to be represented at these conferences and yet still produce these statements despite the overwhelming evidence supporting the case for more biomedical research into ME/CFS in order to produce proper treatments and, eventually, a cure?

2.  Will Mrs. Keen be sending a representative or representatives from her department to the Invest in ME conference in London on 23rd May in her place?

3.  Can the minister state categorically that those ME/CFS patients who attend any of the 13 CNCC clinics, to be examined, that they will not have a label of being mentally ill on their records due to their attendance at these clinics?

4.  The WHO recognises that ME/CFS is a neurological illness. Will Mrs. Keen re-affirm that the government supports this classification?

5.  The DoH regularly states that the MRC is an independent body responsible for research into ME/CFS. When there is clearly a bias toward funding of psychiatric paradigms for research trials into ME/CFS by the MRC does Mrs. Keen not feel that it is in the nation's interest, and part of her responsibility, to enquire why more funding is not being spent on biomedical research despite the fact that there is overwhelming evidence of the organic nature of ME/CFS?

6.  Will the DoH recognise the Canadian Guidelines as the default clinical guidelines to be used to diagnose ME/CFS? NICE described the Canadian guidelines as ' the most stringent'. Why then are these not adopted as standard for diagnosis of ME/CFS?

7.  Mrs. Keen has stated to one of Invest in ME’s supporters that her department was not invited to contribute to the Gibson inquiry and that there are no plans to implement recommendations from the Gibson Inquiry. Will the minister state why she feels it is not necessary to implement recommendations from the Gibson inquiry such as - 

  • the call for ME/CFS to be given due recognition, alongside heart disease and cancer
  • the call for ring-fenced money for bio-medical research as happened with AIDS.
  • the call for biomedical research to be made a priority and that 11 million should be made available for biomedical research to redress the balance in an illness where too much emphasis has been put on psychological “coping strategies”.
  • the call for the UK to take this opportunity to lead the way in encouraging biomedical research into potential causes of ME/CFS.

Mr. Turner, Invest in ME will be holding our third annual biomedical research conference in London on 23rd May and we invite you to come to the conference and meet the expert clinicians and researchers who will also attend and present at the conference,

Yours Sincerely,

Kathleen McCall


Invest in ME                            

Charity Number 1114035

Last update: 09 November 2008