Rethinking ME: ‘These recommendations are considered the starting position for Government policy’ Carol Monaghan, MP

Rethinking ME' is an important report from The All-Party Parliamentary Group (APPG) on ME and was launched at a reception at the House of Commons yesterday afternoon

In attendance were MPs and Members of the House of Lords, representatives from The Department of Health and Social Care (DHSC), The Department of Work and Pensions (DWP), The National Institute for Health and Care Excellence (NICE), and other Government departments, charity representatives and health journalists. Carol Monaghan spoke about the report and there was a speech from the Sajid Javid – The Secretary of State for Health and Social Care. We will have more from the launch event with the full speeches later today.

“Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.

Sajid Javid, Secretary of State, Department of Health and Social Care

A short extract from the speech by the Rt. Hon. Sajid Javid, MP. We will report on the reception in more detail later today.

How was the report produced? 

After Carol Monaghan MP had successfully reformed the APPG on ME following the last general election it was agreed that the time was right to prepare a report that would cover all the key issues and concerns that affect people with ME/CFS.

As with many parliamentary reports it was decided that in addition to the information that is already available, the APPG would hold a series of hearings at which experts would present evidence and answer questions from MPs. The first hearing took place in January 2020 and discussed research. As a result of the Covid pandemic, progress had been slower than hoped, but the hearings continued via Zoom.

The following areas were investigated over the course of five APPG evidence sessions and in further correspondence with ME patients and relevant stakeholders:

  1. Biomedical Research and Research Funding.
  2. Condition Diagnosis, Symptom Management and Medical Services.
  3. Children and Young People with ME.
  4. Welfare and Health Insurance-based Benefits.
  5. COVID-19 and the ME community.

A great deal of thought was given to writing the report and the need to effectively implement the 2021 NICE Guideline recommendations and to cover the important links between Long Covid and ME/CFS.

Special thanks must go Carol Monaghan, MP (Chair of the APPG) and her research assistant Catherine Frazer for all the time and effort they have put into this producing such a powerful report, and to everyone who attended the reception yesterday. The ME Association was represented at the event by Nikki Strong (Associate Trustee).

What does the report contain and recommend?

The 40-page report makes a number of key recommendations that are aimed at research investment and discovery, health and social care, and generally improving the lives of people with ME/CFS:

  1. The UK and Devolved Governments must each conduct a comprehensive review of current ME service provision with a view to implementing the new NICE guideline on ME/CFS recommendations in full and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education.
  2. Coordinated research strategies must be developed to encourage high quality ME research. Areas should include:
    • biomedical research into underlying ME disease mechanisms,
    • clinical research and treatment trials,
    • support for the development and submission of high-quality ME research applications and,
    • incentives for the involvement of early career researchers.
  3. Government research bodies should ensure that there is a parity of biomedical funding between ME and other serious long-term conditions.
  4. Centres of ME research excellence should be established to drive forward the development of biomedical treatments, learning from the projects of other nations.
  5. Health professionals should follow the recommendations in the new NICE guideline and ensure that ME patients do not undergo any form of GET.
  6. Updated ME medical training should be provided by the Royal Colleges and medical schools to relevant health professionals and students.
  7. Health service commissioners should review the adequacy of current ME services and take steps to ensure that service provision is carefully planned, resourced, and implemented. 
  8. People with severe and very severe ME should be provided with a care package based on the basic care principles that are recommended in the new NICE guideline.
  9. Health commissioners should ensure that all children and adolescents with ME have access to correctly trained hospital paediatricians and long-term community services.
  10. The Royal College of Paediatrics and Child Health (RCPCH) should ensure that all paediatricians receive specialised training on recognising, diagnosing, and managing ME in children and adolescents.
  11. An independent second medical opinion obtained by a parent or guardian of a child with suspected or confirmed ME should be considered in any decisions regarding diagnosis, treatment, or welfare.
  12. The Chief Social Worker (or equivalent in the devolved nations) should ensure that the guide for social workers working with children and young people with ME (developed by social workers in partnership with Action for M.E.) or suspected ME is shared with all social care departments.
  13. All children and young people with ME should have a care plan, in accordance with national guidelines and/or statutory requirements, that combines education and health.
  14. Schools, colleges, and higher education institutions should make learning and assessment modifications for students with ME. 
  15. The DWP should ensure equity of access for people with ME to benefits assessments that ensures claimants are fairly assessed taking into account the impact of ME on their ability to engage with the process and the impact of the assessment which can, for some, cause adverse health effects.
  16. Health insurers should not require people with ME to undertake GET, CBT or health assessments that require levels of activity which could produce adverse health effects.
  17. Long-term health planning should consider the high number of individuals experiencing Long Covid following a Covid-19 infection. 
  18. Health service commissioners should ensure that there is cooperation between ME and Long Covid clinics to maximise patient benefit.
  19. Long Covid research projects should include ME patients as a comparative group.
  20. Further publicly funded biomedical and clinical research should be commissioned to investigate and compare a range of post-viral conditions, including ME. 

Who has received the report?

Hard copies of the report are being distributed to MPs, Members of the House of Lords, and people of influence at the Department for Work and Pensions (DWP), Department of Health and Social Care (DHSC), The Medical Research Council (MRC), The National Institute for Health Research (NIHR), The National Institute for Health and Care Excellence (NICE), etc.

If you would like to read and share the report – with local NHS commissioners or with your own MP to, for example, reinforce the need for effective implementation of the the NICE Guideline and the improvement or creation of appropriate ME/CFS specialist services – then it can be downloaded below.

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