National Institute for Health and Care Excellence Guidelines for ME Correspondence with Professor Mark Baker Centre for Guidelines Director Whilst preparing for the planned NICE Stakeholders' Workshop in January to review the NICE guidelines for ME it was, in our opinion, necessary to make one request to NICE which we felt could not be delayed. We requested that NICE remove the recommendations for Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) immediately from the existing guidelines due to the possible deleterious effects on people with ME. All of the correspondence can be seen on our website here - http://www.investinme.org/IIMER-Newslet-180101.shtml. We felt that it must have now surely been realised by all that CBT and GET are inappropriate for treating ME and in many cases have proven to be deleterious to the health of patients. The PACE Trial, which was supposed to prove the efficacy of CBT and GET for ME, has been sown to be flawed and a complete waste of taxpayers’ money. Reanalysis of PACE Trial results by Matthees et al (once the data was forced to be released from the authors following a legal challenge) stated - "This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold." The PACE Trial is now being used as an example of how not to perform research – and it is widely seen as flawed and is ridiculed. Several articles by David Tuller academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, have exposed these flaws and demonstrated that the PACE Trial cannot be considered valid. We believe that a full review of the NICE guidelines, that may take two years or more, will leave patients exposed to these harmful treatments (CBT and GET) and it is not acceptable. By removing the recommendations for CBT and GET from the existing guidelines now, with an addendum or correction of some sort, it could go a long way to establishing some trust in NICE from patients that was forfeited when the previous guidelines were published and the views of patients were ignored. Thus began an exchange of letters between Professor Mark Baker of NICE and Invest in ME Research. The final letter from Professor Baker and our summary are illustrative of a system that has failed people with ME in the past and risks continuing to fail them in the future By retaining CBT as a recommendation then this only helps those organisations and individuals who continue to promote biopsychosocial theories about ME for their own vested interests and will continue the threat to the welfare of ME patients. CBT in the existing NICE guidelines is tightly connected to GET as it asserts that fear of exercise and false illness beliefs perpetuate the condition. If the treatments mentioned (CBT and GET) are already accepted to be “inappropriate”, “unacceptable” or “unsuitable” as recommended by the existing guidelines then your (and NICE’s) duty and obligation to sick and vulnerable patients is to remove them immediately. There is no other logical course to take. Summary from Invest in ME Research 9th February 2018 Following the exchange of letters with Professor Baker we have summarised our views on the statements we have received. The replies we have received force us to be very concerned about influences still affecting NICE guideline development for ME.  Professor Baker believes withdrawal of the guidelines would result in the entire support structure being removed. He has said that the services that are now provided to patients will be withdrawn if the existing guidelines are withdrawn immediately. Page 12 of 56 www.investinme.org Invest in ME research (Charity Nr. 1153730)

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