Letter to the Lancet from Northern Ireland ME Association

by Nicola Karen Reiss on Monday, February 21, 2011:

PERMISSION TO REPOST

Jo Calder of NIMEA sent this letter to the Belfast dailys and the county weeklys this morning.

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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 assignedto 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,
28Bedford Street,
Belfast BT2 7FE.

Database: 1435/3457 - Release Date: 02/21/11