The existing NICE guidelines have done nothing to legitimise or help ME patients and the services that are on offer are mostly inappropriate or sparse – influenced totally by the existing NICE guidelines. Professor Baker has stated that the existing guidance is carefully worded with the implication that doctors are somehow not only aware of the “nuances” mentioned by Professor Baker, but are also understanding them. We have to disagree. If NICE recommend CBT and GET and if these therapies harm patients then no amount of crafted wordsmanship in the world will avoid the situation where patients are harmed. We have stated that the “nuances” and “craftsmanship” of the wording in the existing NICE guidelines to which Professor Baker refers are lost on doctors, and on almost everyone, except NICE. Professor Baker states that the (existing) guidance is very carefully worded to protect patients and is "deeply concerned" at the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) which clearly do not represent the wording and intentions of the guidance. Professor Baker then states that this is not something which NICE has direct influence over and can only suggest that we direct our ire on those responsible for irrational decisions and the misquoting of our guidance. This is an astonishing statement to make - and far from true. Of course NICE directly influences what doctors prescribe. It is NICE who are responsible for the recommendations which doctors are compelled to take into account. This statement demonstrates that NICE still really has no idea at how much damage these existing guidelines have done, and no idea of what damage they continue to do. Professor Baker suggested that we direct our ire on those responsible for irrational decisions and the misquoting of our guidance. Our "ire" is actually directed at those responsible for irrational decisions or decisions that make ME patients worse. Page 14 of 56 www.investinme.org Professor Baker admitted that the guidelines would be replaced entirely. Professor Baker has agreed that CBT and GET are perceived and experienced by patients as harmful. We believe that Professor Baker accepts the claims that patients have been harmed by CBT and GET It therefore defies logic to retain harmful recommendations for two more years or morewhen it is clearly understood that patients are being harmed by these recommendations. Professor Baker stated that the PACE Trial has had no effect on the recommendations of NICE (despite last summer the surveillance review quoting the PACE Trial). In our letter to Professor Baker we did not refer to PACE as being the base of evidence for NICE guidelines. We only intended to refer to PACE in case Professor Baker came back to us to deflect our argument that CBT and GET need to be dropped by referring to PACE. Yet NICE did use it to base its decisions in the surveillance review of 2017 We have stated it is illogical, and harmful to patients, that NICE retain the existing guidelines when it is admitted they are not fit for purpose, are not what patients want and potentially harm patients, and will be discarded in any case. NICE must follow the USA and remove recommendations for using CBT and GET as treatments for ME with an addendum to the existing guidelines. We have requested that this addendum is communicated to other healthcare agencies around the world who have misguidedly used the existing NICE guidelines as any basis for their own treatment of ME patients. We began this series of letters to Professor Baker due to the comments attributed to him and NICE. These comments have made us wonder how these would be translated into action. Professor Baker’s reply to us – a few hours before the stakeholder meeting – clearly seemed to be contradictory to the comments that Professor Baker made to the participants in the stakeholder meeting and raised major concerns for us as to the actual way NICE were intending to proceed. Invest in ME research (Charity Nr. 1153730)
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