Note: The NHS Plus pamphlets in question can be accessed here:
Department of Health, Occupational aspects of the management of chronic fatigue syndrome (CFS), October 2006
Three leaflets for employers, professionals and employees
NHS Plus, Occupational aspects of the management of chronic fatigue syndrome, October 2006
Occupational Health discussions – MEA statement
Statement on 20th August 2007 by the Chairman of The ME Association in regard to a meeting with Dr. Madan as to the NHS plus pamphlets on Occupational Health
1. In October 2006 NHS Plus published three pamphlets which summarised the findings of a review of the scientific evidence on the occupational aspects of the management of chronic fatigue syndrome. Many of the organisations representing people with ME/CFS were greatly concerned at the language used and the advice given in these pamphlets.
2. In January 2007 I circulated, to some of those organisations, the first draft of a Statement setting out many of the failings of those pamphlets and asked firstly for their comments on the draft and secondly whether they would be prepared to sign up to the final version of the Statement. I was delighted by the response and the way so many people joined together and helped to develop the final version. It was a credit to all the ME Community and, I felt, strengthened the links between us.
3. In the event, 25 different organisations signed up to the Statement, which I then sent to NHS Plus and specifically to Dr. Ira Madan who is the Occupational Health Consultant leading on these pamphlets. Following the All Party Parliamentary Group for ME meeting in May, at which Dr. Madan commented upon the main points in the Joint Statement, she agreed to meet me and Peter Spencer of Action for ME .
4. The meeting with Dr. Madan on the 16th July went well. She was receptive to a number of our proposed amendments and certainly open-minded in our discussions. She agreed to send to The ME Association and AfME a revised draft of each of the three pamphlets. These have now been received.
5. Both Peter Spencer and I agreed that we should issue a Statement about the meeting with Dr. Madan.. There has been, during the last month, some exchanges of correspondence as to the content of that “Meeting Statement” and in particular the extent to which other organisations should be involved in the approval of the amendments proposed by Dr. Madan.
6. The view of The ME Association is clear. The original Statement on the leaflets was a joint response of 25 organisations and therefore we felt that any approval of Dr. Madan’s amendments must have the majority support of those organisations. The wording proposed by The ME Association to AfME was as follows:-
” Once the revised wording has been received we will consult with the other charities involved in the joint response to seek their views. If the revised wording remains unacceptable to the group as a whole we will seek a further discussion with Dr. Madan. The MEA and AfME will not endorse any revised wording unless it has the majority support of those who took part in the original joint Statement”
7. This wording was not acceptable to AfME. I was informed last Friday, 17th August, that:-
“AfME will not agree to be constrained to making comments that have the majority support of the organisations that took part in the original joint statement”.
That of course is its entitlement.
However, in the same correspondence I was also informed that AfME would now be making its own Statement on the Meeting and that it had indeed already been published on its website. This came as something as a surprise to me as I was given no prior indication that correspondence about the Meeting Statement was to be ended abruptly in this way nor that AfME intended to proceed alone at this stage.
8. The Statement issued by AfME intimates that it has throughout taken the lead in dealings with NHS Plus and that the evidence they produced has resulted in a revision of the text of the pamphlets. This is not the case. There is no mention of the joint approach by the other ME Organisations, nor the concerns voiced by me. There is also mentioned in its Statement that AfME:- “will take full consideration of the comments made by other ME Organisations”. It was these words to merely ” take full consideration” to which the ME Association would not agree. The ME Association believes those word leave room for someone to say “we took full consideration of your views but have decided not to follow them” In effect, reserving the position of AfME to decide as it thinks fit. In contrast The ME Association believes that any revisions to the pamphlets must have “the majority support of the signatories to the original joint Statement”. That is a firm commitment.
9. I believe that the ME Community gets strength from numbers and that we should all strive to work together. It may be difficult and laborious at times. Getting 25 different organisations to agree a draft has been described to me as like “trying to herd cats” but that is no reason not to try and make the effort. The ME Association is determined to make this effort. I personally have valued the input and support I have received over the past 8 months from so many of you. It is for those reasons that I believe that “The MEA should not endorse any revised wording unless it has the majority support of those who took part in the original joint Statement”. I believe that your views are important and that a combined response will be more persuasive to Dr. Madan than individual voices.
10. I have sent electronic copies of the pamphlets as revised by Dr. Madan. to all those who signed up to the original joint Statement on the pamphlets. If you fail to receive a copy within the next three days then do email me and I will resend.
Chairman of The ME Association
20th August 2007