"New" Lancet Research

Following is an open letter to the Lancet, 19 Feb 2011

Dear Editor,
On February 18th 2011 the “Lancet” featured a major new medical trial, reporting that psychotherapy and exercise are “moderately effective” for treating ME. However back in Sept. 2001 the prestigious “Journal of the American Medical Association” had arrived at exactly the same conclusions. We ask, why was it necessary to duplicate ten-year-old American research in the UK, at a reported cost of £5m? To put this colossal waste of scarce resources in context - the entire budget for NHS ME clinics in England in 2003 was £8.5m.

In Jan. 2010 the suicide of ME patient Lynne Gilderdale received saturation coverage in the UK media. There are still thousands of other ME patients like her, housebound and completely neglected by the NHS and Social Services. A generous injection of £5m would go far towards meeting their needs.
It is said that treatments described in the “Lancet” are safe, and can cure some ME patients. However these claims are not actually supported in the published article.

A patient’s return to full-time employment is the most convincing proof that medical treatment has produced a cure. We know that the researchers originally collected information on “hours of employment/study, wages and benefits received”, but for some reason they have not published these figures. If they have found a cure, what pretext can they have for withholding these highly significant post-treatment employment statistics?
Far from the treatments being safe, they found that with all four approaches being tested, “non-serious adverse events were common”. (Their words). Their two recommended treatments had side-effect rates of 89% and 93% respectively. The real truth is that, until the pathological causes of ME are discovered, NHS doctors are groping in the dark. Patients are being subjected to primitive treatments, very often with unpleasant after-effects, for little benefit.

But the Medical Research Council, which funded this “Lancet” research, seems in no hurry to uncover the causes of this crippling condition. Until last year a young Belfast researcher was undertaking world-class research at St. George’s Hospital in London, into the genetic component of ME. Dr. Jonathan Kerr had hopes of reversing the debilitating effects of this illness with gene therapy. However the MRC refused him funding, and as a result his research laboratory has now been closed down.

Instead the MRC underwrote the salaries of a large group of psychiatric researchers for a total of 6 years, 2005-11, at exorbitant expense. These psychiatrists erroneously believe they can treat ME, without ever knowing the cause. Although they have monopolized MRC grants, they have produced a very poor return on investment. Rated on their 33-point and 100-point scales, their patients improved on average only 10% and 8.25% with the two recommended therapies. To describe these treatments as “moderately effective” is an exaggeration. It would have been more honest to admit the effects were marginal. The UK’s quarter-million ME patients are desperate for cure, and they deserve better than this.

The researchers have actually conceded that their treatments are “only moderately effective” and they suggest “research into more effective treatments is needed”. We agree. However that research should not be assigned to the group who have just published in the “Lancet.” They have demonstrably failed to meet ME patients’ needs. They have wasted very large amounts of time, energy and money. They should not be feather-bedded with any future MRC funding.

Sincerely,
Ken Hull, Chairman,
Horace Reid,
Northern Ireland ME Association,
28 Bedford Street,
Belfast BT2 7FE.