UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for £20 million in funding for biomedical research for five years. The briefing also provides an excellent summary of the disease and the challenges patients face accessing appropriate care.
 
[maxbutton id=”16″ url=”http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf” text=”Read the briefing” ]

 

1. 1. Here is a summary of the briefing’s seven recommendations:

      1. A Public Inquiry into ME based on The Gibson Report,” which states:
         “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.”
         
      2. Implement the CMO Report Recommendations. The recommendations from the CMO Report of 2002 should be implemented.
         
      3. Removal of Existing NICE Guidelines for ME. As a stop-gap measure NICE can remove CBT and GET as recommendations for ME immediately and issue an addendum to the existing guidelines warning all doctors that CBT and GET must not be recommended for ME.
         NICE must also inform all healthcare providers around the world, who may be using the NICE guidelines for their own healthcare systems, that this addendum has been made.
         
      4. Annual Report to Parliament
         
      5. Transparency of Meetings – Full transparency of any meetings between NIHR, MRC, DoH, NHS
         
      6. Remove Those Responsible for Current Situation.
         All of those individuals who have been connected with MRC decisions on research into ME over the last decade, if still in positions of influence with regard to ME research, must be removed from having any influence on future decisions regarding ME. The people whom the MRC has made responsible have failed. Whether this has been on purpose or not remains to be seen. In any case, they should play no further role in influencing any policies relating to ME.
         
      7.  Research. Invest in ME Research propose ring-fencing funding of at least £20 million a year for five years for biomedical research into ME.