The ME Association have recently published this statement below about ME/CFS and Disability Living Allowance. I have included it for your information:

MEA rejects new Department of Work and Pensions (DWP) benefit guidance on ME/CFS

Background information

The government's Department of Work and Pensions (DWP) is currently in the process of making some major changes to the way in which Disability Living Allowance, Attendance Allowance, and Carers Allowance will, in the future, be administered.

On Friday June 10th The ME Association was invited to attend a meeting at which it was explained how the various changes are likely to affect people with ME/CFS who apply for these benefits.

Many of the proposals that were presented at this meeting - eg more personalised claims; improved gathering of further information; proper explanations as to why decisions have been made - appear to be genuine attempts to try and solve some of the problems that everyone agrees are part of the current process of benefit claiming, assessment and decision making.

The DWP proposals also include the preparation of new guidelines on the medical and disability aspects of ME/CFS for use in the decision making process on individual claims. This new guidance will replace that which is contained in the current version of the Disability Handbook.

The MEA has not been invited to take part in this consultation process up until now. Neither have we had any opportunity to take part in the process of developing the revised medical and disability guidance on ME/CFS. And it was not until the close of the meeting that the latest draft of this guidance was presented. Consequently, there was no time available to either read or discuss the content, and no further meetings between charity representatives and the DWP are currently planned.

Having now had an opportunity to carefully consider the content of the proposed new guidance, The MEA believes that it is unacceptable. As a result, the letter below has been sent to the DWP today. We also intend to raise our concerns with the All Party Parliamentary Group (APPG) at their next meeting on July 6th.

The issue of benefits is of enormous importance to people with ME/CFS and The MEA is determined to do all it can to persuade the DWP to provide guidance that is going to be acceptable to people with this illness. We will continue to update the ME Community on further developments.

In the meantime would urge both individuals and local groups to do all they can to persuade their newly elected MPs to attend the APPG meeting in July.



Letter to the DWP from The ME Association

Mr Craig Isherwood
Customer and External Relations Directorate
Disability and Carers Service
Room 103, Government Buildings
Norcross Lane
Thornton Cleveleys
Lancashire FY5 3TA


20 June 2005


Dear Mr Isherwood


Re: Disability and Carers Service Transformation - Improving Decision Making Forum held on Friday 10 June 2005


Thank you for inviting me to attend this meeting on behalf of The ME Association in order to discuss the way in which the DCS is aiming to improve almost all aspects of the decision making process relating to claims for Disability Living Allowance, Attendance Allowance, and Carers Allowance from people with ME/CFS.

As I said during the meeting, the basic proposals put forward in relation to many of the practical aspects of the decision making process all seem very sensible.

However, the same cannot be said for the revised guidance on ME/CFS which was circulated right at the end of the meeting. Consequently, there was no time at all to comment on the actual content of this very important information.

I have now had the opportunity to discuss this draft with ME Association trustees. Our view is that the information and guidance provided is completely unacceptable in its present form. This is because the guidance:

a) contains far too much biased opinion presented as fact;

b) contains statements which indicate that the group who prepared the draft have a very poor understanding of certain aspects of this illness, especially in relation to the levels of disability and functional impairment that it causes - for example, the conclusion that severely affected patients are unlikely to require any supervision at home or out of doors since their impairment of cognitive function is usually only mild;

c) includes terms such as 'perceive as damaging', 'potentially disabling', and 'subjective' in relation to symptoms and resulting disability - all of which indicate that the group believes that inappropriate illness beliefs are far more important than any underlying disease process.

d) fails to take note of some of the key points relevant to areas being covered that were made in the 2002 Chief Medical Officer's report into ME/CFS.

So instead of helping to redress the current highly unsatisfactory situation whereby the only way for many people with ME/CFS to obtain any component of DLA is to take their case to Appeal, we believe this guidance is only going to make matters worse.

We could, at this point, produce a detailed critique of the draft, but given the fact that no further meetings are planned which will involve patient representatives, this is not a satisfactory solution.

We must also point out that if anything like this draft is eventually presented as revised guidance, then the DWP will inevitably find itself facing a political campaign from a group of people who believe that their views are just not being listened to on many key aspects of their illness.

As was speculated on during the course of the meeting, there appears to be a fundamental flaw in the way these guidelines have been produced in that the group who prepared them are clearly biased towards a psychosocial model of cause and treatment for ME/CFS. We are therefore calling for a complete rewrite of these guidelines by a new and more balanced group of health professionals (two psychiatrists and no neurologist is unacceptable), and certainly one that includes health professionals who accept - as does the Department of Health - the WHO classification of this illness (ie ME, CFS, PVFS) as being a neurological disorder. There is, incidentally, nothing whatsover in the guidance about reseach findings relating to the neuropathology of ME/CFS.

We feel it is only right to place this response in the public domain in order to keep our members informed and will therefore be placing a copy on our website today. We also intend to raise our very serious and urgent concerns about the proposed content of this new guidance with the All Party Parliamentary Group on ME/CFS when they next meet at Westminster on July 6th.

For your information, we shall be sending by separate post a copy of the May 2005 ME Alliance report on Early Diagnosis and the latest (ie July 2005 - due for publication shortly) edition of our guidelines booklet for health professionals as the information contained in these documents is relevant to the guidance on ME/CFS that needs to be given to the decision makers. If you would like further paper copies of either publication please let me know.



Yours Sincerely



Dr Charles Shepherd
Medical Adviser

ME Association
4 Top Angel
Buckingham
MK18 1TH