Obtained through a Freedom of Information request, this is the new training and information document on ME/CFS that has been prepared for people who are involved in assessing claims for PIP.
If you are making a claim for PIP, or challenging a PIP decision, you should find this information helpful.
MEA Comment
I have previously assisted the DWP in their preparation of training material and guidelines relating to benefit assessments for people with ME/CFS and other fluctuating medical conditions. However, I wasn't asked to comment on this one.
I will do so now:
Firstly, it is very frustrating to find that almost everything from page 20 onwards has been redacted and I cannot understand the legal reason for doing this. We will try and find out why….
In relation to the content that has been provided, much of it is satisfactory in relation to diagnosis, symptoms, flare ups, overall management and the basic presentation of severe/very severe ME – as the content has been lifted almost word for word from the 2021 NICE guideline on ME/CFS.
The information on prevalence (which now needs updating following publication of the Ponting and Samms paper which produces a figure of around 404,000 people with ME/CFS in the UK) comes from the MEA position statement that we published last year.
It is also good to see that the points that were originally produced by the DWP Fluctuating Medical Conditions group (which I was a member of) regarding the need for claimants to carry out the PIP descriptor tasks reliably, repeatedly, safely and in a timely manner is highlighted on pages 18-19
On the more negative side, had I been asked for input by the DWP I would have:
- requested changes to the sections on causation and prognosis
- added more information on the practical effects of several key symptoms – PEM, cognitive dysfunction, dysautonomia etc – on care and mobility needs, especially in relation to people with severe or very severe ME/CFS
- explained in more detail how symptoms such as cognitive dysfunction are going to affect the ability of many claimants to provide detailed information about their care and mobility needs
- replaced the symptom severity scale, which comes from the NICE guideline, with one that contains information that is more relevant to personal care needs and problems with mobility, which is what the PIP assessment concentrates on.
So, there are definitely areas where the content needs to be improved and made more relevant to the way in which a PIP assessment and decision should be carried out on someone with ME/CFS.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Further Information
