 This, and further replies to our initial request to remove CBT and GET from existing guidelines, baffled us.  The fact that Professor Baker has stated that the existing NICE guidelines will be torn up indicates this realisation that NICE and the existing guidelines have failed.  What patients have said has proven to be true. Yet NICE did not listen.  We detect even now that these messages still have not been taken on board.  Comments such as “we will tear up” the existing guidelines need to be translated into immediate action.  We have words from NICE - but no action.  NICE must separate the decision on the continuation of the existing guidelines from the review of them. These are two separate matters – linked by the fact that NICE has already decided to tear up the existing guidelines and that Professor Baker accepts that CBT and GET are harmful to ME patients.  The existing guidelines must be withdrawn or NICE must add an addendum that CBT and GET are no longer recommendations.  The refusal to add an addendum to existing guidelines to remove BOTH CBT and GET is illogical in the context of the remarks made by Professor Baker/NICE. To avoid further harm to patients they would remove the drug immediately.  This is the same situation that NICE now face with CBT and GET for ME.  Professor Baker has written to IiMER that he “will discuss at the highest level at NICE what remedial action to help patients we can take in the meantime.” We hope that this will result in issuing the addendum to the existing guidelines that removes CBT and GET as recommendations for ME – or otherwise the withdrawal of the existing NICE guidelines for ME immediately.  We do not share the euphoric tributes to NICE for arranging a workshop where the audience is told everything that they want to hear. Our recommendation to ME patients and their families is not to trust comments by NICE and not to trust NICE at all – until the day arrives that NICE actually deliver and The refusal to withdraw the existing guidelines whilst they are torn up and new guidelines are developed carries a level of illogical reasoning. Professor Baker has admitted the existing guidelines are unfit, he has accepted the horror stories of patients being coerced into trying CBT and GET and being harmed by them, he has heard of insurance companies denying benefits when people refuse to agree to try these flawed theories recommended by NICE. operationalise guidelines for ME that really do reflect the reality and needs of ME patients and their families.  Years of experience of establishment tactics involving wasting several years on initiatives that are already designed to deliver nothing of consequence have made us wary of the corrupt systems in place.  Based on their track record NICE do not yet deserve any such trust.  ME patients have had very little bargaining power over the last decades thanks to the insidious and immoral network of BPS protagonists who have influenced all policies on ME in the UK and taken over decision making in weak and apathetic research councils and government departments. In all of this how can it be logical, or moral, or safe, to retain these existing guidelines, and especially the disastrous and damaging recommendations for CBT and GET? If a drug is recommended by NICE for a disease and some time later the drug is found to be harming patients then surely NICE would take steps to remove that drug. They would not retain it as a recommendation, to be in use for two years whilst they developed a new guideline for the disease. Invest in ME research (Charity Nr. 1153730)  What patients have been able to retain is the ability to give or withhold their trust in new initiatives that promise change to improve their lives. In the world of social media, where the playing field has been levelled in recent times and allowed patients to challenge biased research, this provision of trust by the patient community can be a useful commodity.  We therefore do not give NICE our trust. Our recommendation to ME patients and their families is not to trust comments by NICE and not to trust NICE at all – until the day arrives that NICE actually deliver and operationalise guidelines for ME that really do www.investinme.org Page 15 of 56

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