Background to Myalgic Encephalomyelitis

Have You Heard of ME?
One may read or hear that little is known about the cause of ME and that there are different opinions on the causes. To sufferers and carers/parents of ME sufferers these opinions do not coincide with reality. A lot is known about neurological Myalgic encephalomyelitis (ME). The opinions of those suffering from ME is quite clear - this is an organic illness. Invest in ME will join the many other organisations which are now campaigning for biomedical research into ME so that little doubt will remain that this is a biological illness which can only be treated and cured by science.

Background Information on ME
It is 50 Years since the first clinically documented outbreak of M.E. in the UK, at the Royal Free Hospital in July 1955, where Dr. Melvin Ramsay noted the symptoms that would lead to a definition of M.E. although historical figures such as Florence Nightingale are believed to have suffered with this illness and mention of M.E. in medical literature goes back as far as the 1930's.

More recently, the "ground-breaking" work by the University of Sunderland (Prof. Hooper), the University of Glasgow (Dr. Gow) and Imperial College (Dr. Kerr) had provided an excellent foundation but it has suffered due to the pitifully small amounts of funding that can be provided by charities and individual patrons alone.

Research grants from the Medical Research Council (MRC) are desperately needed to properly fund the research.

There are a significant number of both national and regional charitable organisations and support groups across the UK, all with different views on how to proceed in advancing the cause of M.E. sufferers.

However, a unified approach would be more powerful and we aim to bring like-minded people together.

ME Statistics
There are over 250,000 sufferers of M.E. in the UK (at a conservative estimate), with about 25% classified as being severely affected, i.e. bed- or house-bound. Each sufferer is a member of a family society that provides care and support, so for every sufferer there could be 2 or 3 other individuals affected by M.E.

Definition Problems
M.E. in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in M.E. sufferers not being identified correctly. Instead M.E. has been confused with other conditions that cause chronic fatigue. This obfuscation has lead to the psychiatric lobby being able to diagnose M.E. sufferers with "somatoform" disorders, such as "Faulty Illness Belief.".

Lack of Data
The UK Government does not collect statistics on the number of M.E. sufferers or the extent of the effects on the individual and their families and carers. Although it is noted that the National Health Service Primary Care Trusts (PCTs) could easily collect such data from GPs through the READ Code system, if they could be convinced that it was desirable to do so.

MRC Funded Activities - Psychiatric Approach
The UK Government, through the Medical Research Council (MRC), has invested some 8.6M in creating local M.E./CFS clinics that offer "management" of symptoms and lifestyles to help people suffering from chronic fatigue illnesses to cope.

A further 2.5M has been provided by the MRC for "Pacing, Activity and CBT: A Randomised Evaluation" (PACE) and "Fatigue Intervention by Nurses Evaluation" (FINE) evaluations of the CBT/GET activities.

Where is the biomedical research on the same scale?
A total of 12.1 million invested in ME - but not a penny to biomedical research. The MRC have not accepted any funding requests for biomedical research. Yet the World Health Organisation recognises ME as a neurological illness. The MRC have rejected high-quality biomedical research proposals but have agreed to fund research based on psychiatric therapies using flawed diagnostic criteria.


Last update: 09 November 2008