After the debate - Call for Change

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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 can be viewed and downloaded here, though signatures are still being added and a cover page being designed.  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.

 

2. A full public enquiry on how ME has been and is being handled in this country.

  • 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 model of illness in scientific publications, improperly conducted research and peer review including Cochrane reviews, 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.
  • A close look at the phenomenon of so-called Medically Unexplained Symptoms (MUS) infiltrating our National Health Service, and the new Improving Access to Psychological Therapies (IAPT) programme.
  • Examination of the so-called “secret” files on ME/CFS, held by the Medical Research Council and the Department for Work and Pensions in the National Archives at Kew.
  • The persecution of doctors who have genuinely tried to help their ME patients with a biomedical approach to the illness.

 

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 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 for ME patients, social support and benefits payments.

  • 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.
  • Social welfare assessment that is not only fair to ME patients, but avoids exacerbating their illness and worsening their disability.  Assessment protocols and their evidence base should be made available for public scrutiny.  

 

6. Appropriate and adequate care and support for children with ME.

This means correct diagnosis and recognition, and 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.



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