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It is now seven years since Sophia died from the physical disease Myalgic Encephalomyelitis (M.E.). We miss her; oh, how we miss her!
In her last days I promised that her life would help others. She replied “Then it was all worth it.” I created her website www.sophiaandme.org.uk to keep my promise to her, to shine a light on the realities of how she and thousands of others suffering from M.E. are being systematically abused by a significant number of doctors and how those in high places close their eyes to such cruel practices and keep silent.
Recently it has been announced that doctors have to undergo a yearly or five yearly appraisal. Given that for decades the majority of doctors and psychiatrists, together with The General Medical Council have refused to implement the rulings of the World Health Organisation, I think that this is an ideal opportunity for everyone to write to their M.P. to put pressure on the Government to ensure that all doctors are legally obliged to treat the disease M.E. as a physical disease as defined by the WHO.
It needs to be made transparently clear to all, that this historical abuse of the most vulnerable by the most powerful, the doctors, must not be allowed to continue unchecked by those at the highest level: the Government.
Please use the proforma letter provided below, just copy and paste it, or write your own, and send it to your Member of Parliament. Together we can change attitudes and practices.
I suffer from the physical neurological disease Myalgic Encephalomyelitis (M.E.). Although the World Health Organisation classifies this as a physical neurological disease, many doctors and psychiatrists ignore this classification and treat it as a mental illness.
On 28th June 2001 Andre L'Hours, the Technical Officer at the World Health Organisation (WHO) headquarters in Geneva, who was responsible for the International Classification of Diseases (ICD), confirmed that it was "unacceptable" if the same disorder had been included in two places in the ICD-10 and that the same disorder could not be differently categorised under the one WHO banner ....he confirmed that the ICD classifications are approved by the World Health Assembly and therefore take legal precedence over unapproved modifications made by a WHO Collaborating Centre ...he stated that if a country accepts the WHO Regulations concerning nomenclature (which the UK does), then that country is obliged to accept the ICD classification. For the avoidance of doubt, the UK has registered no reservations about the ICD-10 and therefore formally accepts it.
I understand that despite the rhetoric of various Government and Medical bodies, on this subject, doctors are still not fully accountable to any organisation, body or Government department. Perhaps you could have a quick look at a page on the web-site, www.sophiaandme.org.uk that is entitled "WHO cares?"
Interestingly, I read that doctors must now have yearly appraisals. Can you tell me if this means that the Government will ensure that the General Medical Council will be legally obliged to follow the World Health Organisation's guidelines on ME (G93.3) in practice? If so, would this also mean that only doctors who treat ME correctly (as the physical neurological disease which it is) will be allowed to manage the treatment of patients with ME and that those who do not will be required to undertake appropriate training?
In recent weeks, abuse and cover-ups within the police force and the BBC have begun to unravel, thereby revealing the horrors perpetrated for decades by authorities who have included the police at Hillsborough and the shocking abuse of children by Jimmy Savile. I can see parallels with what has happened to many sufferers of M.E. where some court cases have been reported in the press.
Don’t you think it is time that the cultural infrastructure within the medical profession should become more transparent to reveal the blatant abuse of power by many, (usually psychiatrists), but not all doctors, on those most vulnerable: children and adults suffering from ME?
If, as I hope, you agree with me, perhaps you would be so kind as to advise me what you propose to do to change the status quo. I would like you to:
1) Ensure the application of the WHO G93.3 definitions for ME throughout the NHS.
2) Define and differentiate the cohort of patients who are suffering biomedical ME from other fatiguing conditions.
3) Mandate the use of a Read Code specifically for ME within GP practices.
4) Ensure that medical researchers are funded to investigate the aetiology of ME and also develop treatments/interventions that can ameliorate (if not cure) the symptoms.
With kind regards,
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