Turning the Tide

All over the UK, there are thousands of people debilitated and disabled by this horrific disease, some bedbound, some in wheelchairs, many in constant pain. But because their condition cannot yet be detected in a test-tube at the local pathology lab, all of these desperately ill and suffering people are labelled liars or loonies; all of the scientific evidence that there is a real illness at work is dismissed out of hand; and those who highlight this grotesque injustice are labelled paranoid and hysterical.

The history of the cover-up of ME by the Medical Establishment over the last 45 years is a nightmare story like no other. Quiet, painstaking scientific research has been stonewalled by the Medical Establishment in favour of contemptuous power-politics : denigration by design. If this were a scientific debate, there would be no contest. ME Denial is a political issue.

What makes the battle over the recognition of ME so significant is that we seem to have a situation where the majority of the medical profession have lost the humility to say "we don't know", and are prepared instead to defend against any suggestion that there might be any ailment that they cannot yet detect 'in a test tube' on a per-patient basis. Technology has not only come to dominate intellectual endeavour in the field of medicine; it seems to have displaced it. 'Somatoform disorder' (psycho-somatosis or now, 'functional somatic syndrome') is the dustbin diagnosis at the end of a battery of tests. Any other diagnosis requires positive evidence; the diagnosis of somatoform disorder requires none. This is not science, and should never be allowed to masquerade as such.

It seems to me that the only way out of the present impasse is to ensure that every study into the cause or treatment of ME is conducted exclusively with the most severely disabled sufferers. We have to get back to basics : back to the original definition of ME - Melvin Ramsay's. I am sure there are many people whose lives have been devastated by this disease who would yet fall outside Ramsay's narrow definition of ME. Many would fall within it in the morning, and outside it in the afternoon, or vice-versa; my own condition used to fluctuate between extremes.

But the more exclusive our definition, the more the psychiatrists' absurd, nightmare bangwagon will be confronted with reality. Let's make them face the truth. Let's put those in wheelchairs first.

Chronic Fatigue Syndrome is a term introduced in 1988 (32 years after the discovery of ME) by the U.S. Centres for Disease Control (CDC). It was felt at first by many British ME sufferers to be transparently contrived in order to denigrate our illness and downgrade its priority below a level that might warrant serious funding of research. Unfortunately, the two major British ME charities were of another opinion.

Everything that has happened since then has confirmed this first grassroots impression. The new name was followed by new and broader diagnostic criteria, until it became possible to conduct a study into CFS that might include not one single genuine ME sufferer. Now there is a move to group a whole host of ludicrously unrelated conditions (IBS, CFS, PMT, FMS, Temporomandipular Joint Pain, Tension Headache, Atypical Chest Pain, MCS and Globus Hysterictis) together under an even larger umbrella - "functional somatic syndromes". It's high time we threw a spanner in the works of this drivel-factory; it's time we returned to Ramsay.

Magna est veritas et praevalebit
(great is truth, and shall prevail).

Del Kennedy