The following was released recently by the ME Association:

DWP draft guidance on ME/CFS to be rewritten

This is a fairly brief report on the DWP meeting that was held on Monday 17 October to discuss the latest draft of proposed new medical guidance on ME/CFS.

The purpose of this guidance is to provide information on ME/CFS to approximately 2,000 lay decision makers who are involved in assessing benefit claims for Disability Living Allowance and Carer's Allowance that are being made by (or on behalf of) adults of working age who have ME, CFS or PVFS. When the guidance is finally published it will be in electronic form - unlike the present outdated guidance that is in the (paper) DLA Handbook.

This new guidance is not specifically aimed at children and adolescents under 16. From the brief discussion that took place yesterday, it appears that separate guidance is going to be prepared for this age group.

The meeting was attended by charity officials from the 25% Group (Doris Jones) ; BRAME (Christine and Tanya Harrison) ; the MEA (Charles Shepherd); and Tymes Trust (Jane Colby). In addition to civil servants and doctors from the DWP, there were three representatives from the group of health professionals who prepared the draft under discussion.

We were also joined by three physicians - Dr Terry Mitchell, Professor Tony Pinching and Dr Nigel Speight - who all made extremely helpful and eloquent contributions to the discussion, and a representative for Professor Basant Puri (who was unable to attend).

The discussion that took place was robust and thorough. We went through the current draft paragraph by paragraph covering all the main issues: nomenclature; WHO ICD10 neurological classification (which is accepted by the DWP); research and clinical definitions; epidemiology; diagnostic assessment; the wide range of symptoms, their fluctuating nature and their effect of functional capacity; the wide spectrum of disability seen in ME/CFS; management issues and prognosis.

The crucial point repeatedly made by all those representing people with ME/CFS was that any new guidance must contain an accurate and detailed description of the spectrum of mobility and care problems faced by people with ME/CFS who decide to apply for DLA. In particular, it must contain a much better description of the level of disability faced those with moderate and severe ME/CFS - the main groups who are likely to be applying for DLA . And it must also refer to the physical nature of the symptoms that cause their disability.

Although decision makers clearly require some background information about ME, CFS and PVFS, patient group representatives made it clear that it is neither relevant nor necessary for them to be involved in the physical v psychological debate. Neither is it their role to come to conclusions about management, especially the role of GET and CBT, in any individual case.

All our points were carefully listened to and I believe that the many changes, additions and removals that were firmly but politely requested are now going to be addressed by the DWP in a further draft.

The MEA made it clear in our previous statements that a new group of health professionals should be appointed to take this work forward. When it became clear that the DWP were not going to move on this particular issue I stated that if the present group of health professionals is to remain then it would be unacceptable if it does not now contain medical representatives who are involved with, or linked to, the main national patient support groups. The DWP have agreed to look again at the membership of the group.

So we are now in a position where there is going to be a further major rewrite of this medical guidance. There will also be some input at this stage from lay decision makers to see whether the information being drafted meets their requirements. No definite date was set for when this further draft should be ready for consultation, but at a guess we are probably looking at early 2006. A further meeting will then take place to discuss the next draft.

This was the most important government meeting of the entire year for people with ME/CFS. My personal view is that it was a success - mainly due to the combination of very public campaigning via MPs, the internet etc that has been going on combined with careful 'behind the scenes' diplomacy - for which BRAME must take particular credit. So I would like to thank my colleagues from all the other charities who attended, the physicians who came along to speak up so well for their patients, and the DWP officials who listened and took very careful note of what was being said.

I believe the time has now come to give the DWP some space to get on with preparing a further draft. I do not therefore believe that it is either necessary or helpful to do any more letter writing to MPs, or anyone else, at this stage. Feedback on the meeting will be given to MPs at the next meeting of the All Party Parliamentary Group.


Dr Charles Shepherd
Medical Adviser, ME Association