Journal of IiMER Volume 13 Issue 1 Invest in ME Research UK - Parliamentary Debate In UK a parliamentary debate in the main chamber held on 24th January 2019. The person responsible for getting all of this started, a supporter of IiMER, was a constituent of SNP MP Carol Monaghan who put forward the debate. This followed on from a previous parliamentary debate held in June 2018 on the PACE Trial. The debate was entitled - “That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.” IiMER made a document - The Debate is Over – Give ME Patients a Future - covering some of the issues relating to the parliamentary debate on 24th January 2019. This is available on our web site. In this summary the charity called for the following A Public Inquiry into ME Implementation of revised CMO Report Recommendations Removal of Existing NICE Guidelines for ME immediately An annual Report to Parliament of the Status of ME Transparency of Meetings Concerning ME by MRC Removal of Those Previously Responsible for ME from positions of Influence Research Funding - A five-year, ring-fenced budget of £20 million per year for biomedical research into ME should be allocated Guidelines for diagnosis must be as accurate as possible and must be up to date The CMOs of UK Must Report Annually on Prevalence of ME in UK Patients Diagnosed with ME Need a Regular Follow-up Pathway Invest in ME Research (Charity Nr. 1153730) In 2018, IiMER carried out an extensive correspondence with the then director of NICE guidelines Professor Mark Baker. We made the case for removing both Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as recommendations from the existing NICE guidelines immediately - whilst a new review was underway. This obvious necessity to remove recommendations which harm patients, something IiMER has called for consistently and which most now agree with, was met with disingenuous arguments from NICE as to why they would not be removed. The NICE review of guidelines for ME has now produced a guidelines working group. This has already been criticised by many for creating a “balance” between those who have a disposition to a Biopsychosocial view of ME, and those who believe ME to be a biomedical condition. The shambles of development group selection process reached farcical proportions during the setting up the group, with piecemeal announcements being made as to who had been selected for the development group and who had not, and background lobbying being conducted to get special places for certain individuals in this working group. The lack of transparency in the selection process was typified by the situation whereby some people who had applied to the working group and had been rejected could nevertheless conveniently be found a position connected to the working group. It demonstrates that the whole selection process is flawed. NICE has politicised this whole process where there was no need and really cannot be trusted. There are obvious conflicts of interest still left in place in this investinme.org Page 15 of 52 NICE Must Follow Department of Health View of ME A specialism consultant needs to be established for ME Medical curricula need to be revised education needs to extend to social care Schools need to be educated about ME There are some clear signals for what needs to be done – as always we look for actions to replace words.
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