After the debate - CALL FOR CHANGE for ME patients
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The 21st June 2018 saw a truly amazing debate on ME research and treatment in the UK Parliament. Now with real hope for the first time, patients have got together to clearly lay out their hopes for the future, in a Call for Change to the UK government.
The full Call for Change submission can be viewed and downloaded here, though signatures are still being added. Call for Change document
Signatures are invited from the worldwide ME/CFS community. Signing this petition shows your support of the full content of the Call for Change document. Patient organisations may back this Call for Change by emailing your name, website and logo to RColourMusic@hotmail.com.
Let's unite with a powerful voice that cannot be ignored!
Here is a summary of the outcomes we call for:
1. Stop CBT and GET immediately.
This is most urgent and must be done without any further delay in order to stop further harming patients. A petition calling for this already has over 7000 signatures. Click here to sign that too. Thus far, NICE does not appear to be listening as patients have been calling for this for a long time. NICE - take CBT and GET out of ME/CFS guidelines NOW!
2. A full public enquiry on how ME has been and is being handled in this country.
Investigating the following concerns:
- The PACE trial and the conduct of its authors, the involvement of the Department for Work and Pensions and the insurance industry.
- The misrepresentation of science through the influence of the PACE authors and proponents of the biopsychosocial (BPS) model of illness in scientific publications, improperly conducted research, biased peer review including Cochrane reviews, national and international guidelines, and the role of scientific journals and their editors.
- The misrepresentation of science through control of the media.
- The unethical use of children in dubious clinical trials of dubious and potentially harmful treatments.
Modern day inventions and new diagnostic labels which classify ME and many other conditions as psychosomatic. This includes Medically Unexplained Symptoms (MUS), Medically Unexplained Physical Symptoms (MUPS), Functional Neurological Disorder (FND) and the new Improving Access to Psychological Therapies (IAPT) programme. The upcoming ICD-11 threatens to rediagnose CFS, ME, Fibromyalgia and Irritable Bowel Syndrome as Bodily Distress Syndrome or Bodily Stress Syndrome. Children with ME are being diagnosed with Pervasive Refusal Syndrome, an invention which does not exist in the ICD-10 or DSM-5.
The appointment of Professor Sir Simon Wessely as chair of the supposedly “independent” review of the Mental Health Act. He was closely involved with the PACE trial, and he classifies many conditions as “Functional Somatic Syndromes”. Mental Health legislation is already being (mis)used to deny basic human rights to seriously ill people. How much more power will BPS proponents now wield over ever increasing categories of sick and disabled people?
- The “secret files” on ME/CFS. These, and Emeritus Professor of Medicinal Chemistry Malcolm Hooper’s “MAGICAL MEDICINE: HOW TO MAKE A DISEASE DISAPPEAR” show how certain parties have influenced how ME is perceived and treated by our social welfare system, our health service, and our research funding bodies.
- The persecution of doctors who have genuinely tried to help their ME patients with a biomedical approach to the illness. Meanwhile, six months after the PACE authors were referred to the GMC for scientific fraud, the GMC still hasn't yet decided to investigate, and a Paediatrician who conducts unethical clinical trials on children receives a promotion.
3. Equivalent funding for biomedical research on ME.
This means stopping inappropriate "research" and having the funds diverted to useful research, providing commensurate funding based on disease prevalence and economic burden, and collaborating with existing important players in biomedical research on ME, such as the charity Invest in ME Research which is already setting up a Centre of Excellence at the Norwich Research Park.
4. Medical Education.
The subject of Myalgic Encephalomyelitis is completely absent in medical education in the UK. The online course on ME/CFS for GPs left one ME patient, a sick NHS Junior Doctor, with the feeling that it was written by people who have never met an ME patient in their lives. She states:
“Really, the course is useless. GPs would do better just listening to their patients, and the RCGP would do better just pointing GPs in the direction of some good quality resources such as these:- [ref 81-83] ”
Meanwhile the Royal College of Paediatrics and Child Health (RCPCH) supports Level 3 Safeguarding Training by the British Association for Community Child Health entitled, “Navigating the minefield: Medically unexplained symptoms and FII” (FII likely stands for Factitious and Induced Illness) for doctors and anyone in education, primary care or social work. Among the topics to be covered are Safeguarding children with Chronic Fatigue symptoms and Pervasive Refusal Syndrome.
The content of medical education on ME should be developed in collaboration with:
- Practicing ME physicians who take a biomedical approach towards ME.
- Medical professionals who have ME, some of whom also have a background in Medical Education.
- NOT Psychiatrists who call themselves CFS specialists.
5. Appropriate and adequate specialist and community services and social support for ME patients.
- Specialist services should be run by physicians taking a biomedical approach to ME, not Psychiatrists or Mental Health providers.
- Appropriate inpatient care when ME patients are admitted to hospital, appropriately designed nursing home placements where required, and adequate support for the severely ill who live at home, such as with self-care, shopping, cooking, cleaning, and in some cases tube feeding.
6. Appropriate and adequate care and support for children with ME.
The planned Level 3 Safeguarding Training by the British Association for Community Child Health on the 7th December 2018 entitled, “Navigating the minefield: Medically unexplained symptoms and FII” (see section 4 on medical education above) is of grave concern to the ME community. Among the topics to be covered are Safeguarding children with Chronic Fatigue symptoms and Pervasive Refusal Syndrome.
Children with ME need correct diagnosis, recognition and treatment, not false accusations and state sanctioned abuse and neglect. They need equal access to education. The Department of Health and Department of Education should speak to the UK charity Tymes Trust which has extensive experience in, and in-depth knowledge of, the needs of children with ME.
7. A social welfare system that works for ME patients.
The current DWP protocol on ME/CFS follows the NICE guidelines and advices CBT and GET which is harmful. The system needs a radical overhaul to provide
- An open and transparent protocol and assessment system that is fair to ME patients.
- A system which recognises the functional limitations of ME patients and does not further damage their fragile health.
- Completely impartial assessors, with no possible conflict of interest between their role and their remuneration.
- Thorough review of any evidence used. Only good quality evidence must be allowed. Simply quoting the NICE guidelines is no longer sufficient, nor should ME patients continue to be denied desperately needed social welfare for over two more years until the new NICE guidelines are available.
- All assessments to be routinely recorded and made accessible to claimants, at no cost to them, in case of dispute.
- Fair reassessment of all cases of dispute and due benefits repaid retrospectively.
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