The NICE Guideline on ME/CFS, and the attitude of many health insurers towards people with the illness, came under withering fire from the Countess of Mar in a debate in the House of Lords yesterday (March 18).
The Countess said the Guideline was published amid "a barrage of criticism" from the ME community because the only two treatments it recommended – on the basis of very limited and strongly criticised scientific evidence – were Cognitive Behaviour Therapy (CBT) and Graded Exercise (GET).
The recent judicial review did not test the scientific validity of NICE’s recommendations. The Countess said the assertion made by Professor Peter Littlejohns, NICE clinical and public health director, after the legal challenge was rejected – he said this "means that the NICE guideline is the gold standard for best practice in managing ME/CFS" – was not accurate.
Speaking in a debate opened by Baroness Tonge on the cognitive therapy programme launched by the NHS. the Countess said: "People with ME already bear a great burden of disbelief about the reality of their illness from their closest relatives, their friends, the medical profession and other care professionals they encounter, as well as the community at large.
"There has been a preponderance of articles on “yuppie flu” in the press and broadcast media; research funding, other than that provided by the ME charities, has been exclusively weighted in favour of the psychosocial as opposed to the biomedical aspects of the illness; and ME patients seem to have to
But the Countess, who chairs a strategic ME planning group called ‘Forward ME’ comprising the heads of several national ME charities and voluntary groups, reserved her most intense criticism for the health insurance industry for their misinterpretation of the illness as a psychiatric condition.
"I have a quotation from Health Insurance News UK dated 22 February 2009. Under the heading,
- “Because of the NICE guidelines private health insurance companies are within their right to refuse cover if an applicant’s policy does not include psychiatric cover”.
"I have been dealing with ME sufferers for 17 years and I have never encountered a group of patients who are so maligned. The last straw for them is the requirement that they undertake a course of CBT and/or GET in order to qualify for benefits and private insurance payments.
"I accept that, in some cases, CBT alone may be beneficial. I suspect that in the old days it would have been called “grin and bear it”. However, CBT is rarely offered without GET and ME patients know only too well—and their views are supported by some 4,000 papers on scientific and clinical research—that GET makes their symptoms worse.
"The NICE guidelines lay great stress on the importance of shared decision making, working in partnership with the patient and the need for specialist expertise. Unfortunately, because this is a “Cinderella” condition, there are few specialists. Indeed, some of the specialist centres set up following the CMO report in 2002 have had to close because of a lack of funding and expertise. For this reason, “referral out of area” and “choose and book” should be available to all sufferers.
"The Department of Health and the World Health Organisation acknowledge that this is not a psychiatric condition. What action is the Minister’s department taking to ensure that people with ME are as respected as people with other medical conditions and that they are not forced to accept, as a condition for receipt of benefits and social care, “treatments” such as CBT and GET that, at best, provide no beneficial effects and, at worst, are positively harmful?."
Replying to the debate for the Government, Baroness Thornton said:
"The noble Countess, Lady Mar, made a very interesting and well informed speech about CFS/ME, whose sufferers she has championed for many years. I will be pleased to investigate the issues that she has raised about CFS/ME treatment, recommended by NICE. It is important to restate the value which the Government place on the independence of NICE’s evaluation process, but I undertake to follow up the disturbing point she made and see whether I can provide her with clarification."
To read the full debate in Hansard, please click here. The Countess of Mar’s contribution starts in column 317 and Baroness Thornton’s full reply to the debate starts in column 323.