Ian Gibson MP

 

House of Commons

 

London

 

SW1A 0AA

 

 

 

12/12/05

 

 

 


Dr Gibson,


I am writing to you as an ME/CFS sufferer, regarding the inquiry that you are conducting about scientific research into the disease. Unfortunately the world of ME politics is murky, and the science complex (arguably more than it needs to be) so I’ll keep this letter simple, by focusing on one specific aspect of the illness.


My principle concern is that MRC funding has not only neglected research into the biological aspects of the illness, but that its promotion of Graded Exercise Therapy (GET) as part of the PACE trial is not just inappropriate to the needs of ME/CFS sufferers, but potentially dangerous. There has for some time been anecdotal evidence discussed among patient groups that exercise therapy can cause a worsening of symptoms, and in extreme cases, the death of sufferers from sudden heart failure.


There is now a growing body of scientific literature supporting the idea that people with ME/CFS suffer from potentially serious cardio-vascular problems, and that these problems are not only measurable (providing proof that the illness is indeed biological in nature, and not simply the product of feeble-mindedness or de-conditioning) but also give clues as to how to provide effective treatment, and thus should be a priority for ME/CFS research.


I enclose copies of two papers that support this idea, one from the Scottish ME charity MERGE entitled Standing up for ME, and a second by Dr Arnold Peckerman et al entitled Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome. I enclose the former as this is representative of the work of the only UK based ME charity (or any UK organisation) that seems to be doing anything productive. The latter I enclose as an example of work being led by cardiologists in the U.S. which is starting to gain influence among ME/CFS patients in the UK.


I would like to seek your assurance as Chair of this inquiry that the specific issue of cardiovascular problems in people with ME/CFS will not be ignored, and that the use of GET as an officially sanctioned treatment for ME/CFS (not to mention the poorly conducted “science” that supposedly proves it to be effective) be reviewed as a matter of urgency.


I wish you luck in chairing the inquiry. It will take the sort of energy that most ME/CFS sufferers simply don’t have.



Yours sincerely,




Phillip Pierce