This is a summary of key points raised by The ME Association during the meeting at the House of Commons on Tuesday 6 February to discuss feedback to the Gibson Inquiry Report. A detailed summary of the meeting is being prepared for the March issue of ME Essential magazine.
MAY BE REPOSTED
Dr Charles Shepherd
Medical Adviser, The ME Association
1 THE MEA RESPONSE
The ME Association has already made it clear in our public statement that we welcome many of the key recommendations and conclusions in the report.
We have set up an archive blog for all the presentations to the five oral hearings (http://meagibsoninq uiry.blogspot. com) and a feedback blog (http://gibsonfeedba ck.blogspot. com) where anyone can post comments on the report. The feedback blog was set up following a request from Dr Richard Taylor MP for the MEA to act as a central collecting point for public comment. We hope that members of the Inquiry group will take time to read the comments that have been posted on the feedback blog.
We are also very keen to continue to co-operate with the Gibson Inquiry team regarding future initiatives, in particular the proposed Early Day Motion (EDM).
2 CONCERNS ABOUT SPECIFIC SECTIONS IN THE REPORT
We share some of the concerns that have been expressed by our members about a number of either unhelpful or inaccurate statements in certain key areas of the report.
SECTION 2.4 ME IN TEENAGERS AND CHILDREN
This section should have included specific reference to the important information given by Dr Nigel Speight in his presentation to the fourth oral hearing. The sentence containing the statement ….possibly in children is going to be interpreted as indicating that a diagnosis of ME/CFS is unlikely in children. It should therefore be rewritten.
SECTIONS 3.1 THE ORAL HEARINGS & 3.2 OTHER EVIDENCE WE RECEIVED
This should include a complete list of speakers (possibly as an appendix) from all five oral hearings
In relation to the evidence presented by Dr Byron Hyde (3.2) on neuroimaging studies (ie MRI, PET and SPECT scans), it is incorrect for the report to say that Again, others have yet to confirm or refute these observations. The results of a considerable number of published papers relating to abnormal findings using neuroimaging techniques add considerable weight to the classification by WHO of ME (and CFS) as a neurological disorder in G93:3 of ICD 10. Further evidence of neuroimaging abnormalities, including references to published papers, was presented to the first oral hearing by the MEA. A transcript of this presentation is available on the official Gibson Inquiry website: http://erythos. com/gibsonenquir y/PresDocs. html
SECTION 3.3.4 VACCINATION
We know of no evidence to support the claim that Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The evidence for vaccines acting as a trigger factor in ME/CFS is both theoretical (as the CMO report acknowledged) and anecdotal – with at least four physicians who presented evidence to the oral hearings (ie Drs Hyde, Shepherd, Weir and Professor Pinching) having experience of cases where vaccines have been involved – hepatitis B in particular. The statement that The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause is therefore most unhelpful and will no doubt be used to deny industrial injury benefits to people with vaccine precipitated ME/CFS who may well have a good case to make.
SECTION 4.2 EXISTING TREATMENTS
It is incorrect to include pacing (in 4.5) as the third of the three psychosocial therapies.
SECTION 6.0 BENEFIT ENTITLEMENT
It is incorrect to state in 6.1 in reference to the Disability Living Allowance that: Therefore claimants are not entitled to the higher level of benefit payments. People with ME/CFS do have great difficulty in claiming higher rate care and/or mobility component of DLA (as acknowledged in the ministerial reply from Maria Eagle quoted in 6.2) but there has been no statement from the DWP to indicate that higher rate claims cannot be made. A number of people with ME/CFS do, in fact, successfully claim higher rates of DLA. Unfortunately, this inaccuracy has now been repeated in the press (ie You magazine, Mail on Sunday, January 21) and this may well result in people with severe ME/CFS not submitting a claim for higher rate DLA because they assume they cannot do so.
Whilst appreciating that the report was finalised in very difficult circumstances in order to meet the deadline for submissions to the NICE guideline development process, we believe that these sections must be looked at again and some form of clarification or correction made.
3 HOW CAN THE REPORT BE USED TO CHALLENGE DAMAGING NEW GUIDANCE FROM THE DWP, NICE AND NHS PLUS?
Consideration now needs to be given as to how the key message in this report – ie that the past and current clinical and research emphasis on psychological and social factors in causation and management has been highly detrimental to patients – must be taken forward, especially in relation to unacceptable guidance on the illness that:
a.. has already been issued by NHS Plus in relation to employment
b.. is about to be issued by the DWP in relation to disability benefits
c.. is being proposed by NICE in relation to clinical assessment and management
NB Joint responses from the main ME/CFS support organisations have already been sent to the DWP and NICE. The MEA is currently co-ordinating a joint response to the NHS Plus guidance.
The ME Association
6 February 2007