reflect the reality and needs of ME patients and their families. Currently that date would be somewhere in two years time. NICE can bring forward that date by acceding to our request to add an addendum immediately to the existing guidelines to remove recommendations for BOTH CBT and GET - or by withdrawing the existing guidelines for ME immediately, and issuing a press release to doctors in UK and abroad that NICE has found the existing guidelines to be unsatisfactory, that they are going to be torn up and completely revised. If NICE do this then trust will surely be given by ME patients. Sir Andrew Dillon might even find it within himself, on behalf of NICE, to issue an apology to ME patients for the wasted years and the distress and the harm which the existing guideline recommendations have caused. If NICE do not take this eminently logical and fair decision immediately then there is no reason to give that trust. We really do hope that NICE now act in a logical and fair way with the patients in mind - uninfluenced by the evil of the BPS network that has been allowed to flourish over the last decades. Add the addendum to remove CBT and GET – or Tear It Up! Now! Finally, look at a communication below, from a patient, that has come to Invest in ME Research in the last month - a letter which neatly describes the appalling consequences of recommending CBT and GET - something for which Professor Baker and NICE cannot pass on responsibility to others. This is the result of NICE's recommendations in their existing guidelines - and this just underlines everything we have been trying to make Professor Baker, and NICE, understand. This letter alone is a testament to the failure of NICE to help people with ME and their families - and a decade on from the creation of the existing guidelines there is enough of an indication that no lessons have been learnt - or any real intent is underway to correct the failings. Throughout our correspondence it seems clear that Professor Baker is oblivious to the elephant in the NICE room - no matter how much damage it is doing to patients. NICE must serve the needs of patients. Page 16 of 56 www.investinme.org Unfortunately, we fear that NICE will not do as we suggest and will not act for the interests of patients. We can only surmise that more influential forces are still present, continuing to force more CBT and GET on to patients. If that were so it would be shameful. NICE, and those deciding on the future for people with ME, must be held accountable if more people are harmed by retaining the existing damaging recommendations for using CBT and GET for another two or more years. Further Reading 1/ 2/ NICE Campaigning Notes on BPS Model From a Patient: To Invest in ME Research I have been closely following your continuing correspondence in relation to the call for revision of the NICE guidelines. In particular the removal of CBT/GET. I have had M.E. for almost four years and am quite severely affected. I am housebound most of the time and often bedbound. I was previously a 'high flyer' (my neurologists' words) and a civil servant with a social work background. Due to my illness I am no longer able to work, and have just been through the very painful process of applying for ill health retirement. My pension provider (through the (name provided) pension scheme) has a two tier system for pension awards in the circumstance of ill health retirement. I have undergone five medical assessments during the process and have been assessed as permanently incapacitated in terms of employment. However, as I have not completed the treatment, as recommended in the NICE guidelines, I cannot obtain the higher rate pension. The treatment namely being CBT and GET. I have engaged with the specialist M.E. service in (location provided) but was unable to continue as attending sessions made me more unwell. I tried CBT through my local mental health service, attending three out of six sessions, this made me more unwell and put me back into bed for weeks. I am in receipt of the highest rate of both ESA and PIPS. These were both awarded following the first medical assessment, which I understand is not the position for far too many M.E. sufferers. Invest in ME research (Charity Nr. 1153730)
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