25% ME Group Press Release: RSM CFS Conference

In April, the 25% ME Group issued a Press Release in respect of their position on the Royal Society of Medicine’s “CFS” Conference, which was held on 28 April.  This Press Release has only just come to my attention and although the RSM’s conference has come and gone I am posting it, here, for the sake of completeness.

A Word doc of the Press Release can be downloaded from the 25% ME Group website here

For links to copies of the 25% ME Group’s position statement on the RSM “CFS” Conference and for position statements from Action for ME, the ME Association, The Young ME Sufferers Trust, Invest in ME and RiME click here

25% ME Group (Support for Severe ME Sufferers)


The Royal Society of Medicine Conference on “CFS” April 28th, London

Why is there an international outcry from patients suffering from Myalgic Encephalomyelitis (ME)?

It is because the Royal Society of Medicine is holding what should be an impartial conference in London, on Chronic Fatigue Syndrome (CFS), [often equated with Myalgic Encephalomyelitis (ME)]. Unfortunately it is only including information on psychiatric models of causation and treatment.

Sufferers in the UK have had to endure an unrelenting campaign by certain psychiatrists , some with connections to the medical insurance industry, to try to downgrade their World Health Organisation recognized neurological disease, to a psychosomatic disorder ; Chronic Fatigue,

Recent research by the 25% Group uncovered a shocking picture of severely ill ME sufferers being labeled as psychiatric patients, being treated with contempt by many GP’s, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong with them.

“I have had severe ME for almost a decade and a half and all that time have been severely disabled as well as chronically and constantly ill.” says Linda Crowhurst. “To my dismay and outrage, the situation which was dreadful when I first got ill has indeed worsened as the psychiatric lobby has got itself firmly embedded into the politics, culture and ‘treatment’ of ME.”

Calls from ME patients for a proper biomedical service continue to go unheeded, vital medical evidence is either ignored or suppressed and sufferers, many as ill as an AIDS patient close to death, are given a psychiatric label.

The upcoming RSM Conference is yet another example of how multi-billion dollar vested interests and corporate industry have managed to infiltrate almost all major institutions with the arrogant pursuit of a psychiatric construct for this serious life-threatening disease.

The Chairman of the 25% ME Group says: “The existing evidence from surveys of over 3,000 patients suggests that such regimes (e.g. Cognitive Behavioural Therapy/Graded Exercise Therapy), which are being discussed at the RSM Conference, are of limited value and at worst are harmful, leading to increased illness and disablement”.

The 25% ME Group stands uncompromisingly for the truth that ME is a World Health Organization classified neurological (ICD10:G93.3) multisystem, physical disease, not a subgroup of any fatigue syndrome. We cannot support any organisation that promotes or endorses the inappropriate and dangerous psychosocial model of M.E”.

Notes to Editors :

There is still much confusion and a lack of accurate knowledge about severe ME/CFS in the medical profession, leaving many patients dismissed and abandoned without support.

Variants of the term “M.E.” were first used following a series of repeating epidemics starting in May 1955 at the Royal Free Hospital, London. Recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME/CFS is currently classified under ICD code G93.3.

ME ranks second only to HIV as the cause of serious, long-term illness in the USA.

The following is a quote from Dr Marc Loveless under oath in testimony before Congress in 1995.

“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”

Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal. Two recent reviews have concluded that, “Substantial improvement is uncommon and is less than 6%”; and, “Full recovery… is rare.” According to the Chief Medical Officer, people with severe ME/CFS in the UK currently receive “seriously inadequate health care.”

25% ME Group (Support for Severe ME Sufferers)

21 Church Street
KA10 6HT

Email: enquiry@25megroup.org

Website: www.25megroup.org

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