The ME Association believes that the vast majority of people with severe ME/CFS are so ill that they should be entitled to the care and mobility components of the Disability Living Allowance (DLA).
We also believe that a significant proportion of people with moderate ME should be entitled to care and/or mobility components.
Medical guidance that is prepared for DLA decision makers should, therefore, reflect this fact and help to ensure that people with moderate or severe ME/CFS do not have to go to appeal in order to obtain DLA – as is far too often the case at present.
For the past two years we have been in negotiation with the Department of Work and Pensions (DWP) in order to try produce new medical guidance that will be free from psychiatric bias and will properly reflect the spectrum of ill health and disability that is experienced by people with moderate or severe ME/CFS.
During this period the guidance has gone through 10 drafts. Draft 10, the final version, will now be published on 20 July without any further consultation with charity representatives.
Although some of our suggestions and criticisms have been accepted by the DWP, and a number of changes have been made during the drafting process to try and soften the bias towards a psychiatric explanation for ME/CFS, the ME Association still regards the final guidance as unfit for purpose.
This is principally because the guidance fails to provide an adequate description of the range of symptoms and disability that is likely to occur in moderate or severe ME/CFS.
Moderate ME/CFS is dealt with in 8 carefully worded lines in section 29. The clear implication here is that most people in this group will not qualify for either care or mobility components of DLA.
Severe ME has 6 carefully worded lines in section 30. While implying that some people in this group may be eligible for either or both components of DLA, it is still a very inadequate description of severe ME/CFS. As a result we believe that a significant proportion of people with severe ME/CFS will have their applications refused.
In addition, there is no mention of the fact that ME (and CFS by link) is classified as a neurological disorder by the WHO in ICD10. Neither is there any mention of the more severe neurological symptoms – blackouts, atypical seizures, speech, swallowing and visual disturbances – that were carefully noted in section 18.104.22.168 of the Chief Medical Officer’s report.
We are also very concerned at the way in which the guideline provides an uncritical and consequently unbalanced review of behavioural approaches to management (ie cognitive behaviour therapy/CBT and graded exercise therapy/GET). These two approaches have not been subjected to clinical trials in people at the severe end of the spectrum. And in questionnaires submitted to the CMO report by this group of people with ME/CFS, they have been shown to be of either no value or even result in harm in a significant number of those questioned.
We fear that this new guidance is going to make the current unacceptable situation even worse for people with moderate or severe ME/CFS.
We cannot therefore endorse the new medical guidance.
It remains unfit for purpose.
The ME Association
11 July 2007