I have taken my ill health retirement case to appeal within my pension service. The position of the original decision not to award me the higher rate pension has been upheld on the grounds that I have not completed CBT and GET. which takes around three hours to get me ready for, with lots and lots of assistance from my wife, who is also my carer and carer to our 18 year old disabled son. My pension provider will now escalate my appeal to stage two of the process. However, the decision makes it clear that, in order to succeed, I need to prove that I have completed CBT and GET. I am faced with a position that is unfair and takes away any right I have not to undergo treatment that exacerbates my illness. I have had support from my union (name provided), however they aren't familiar with the fight that M.E. suffers like myself face. Please please continue the fight for those of us struggling to do it for ourselves I often find it difficult to construct challenges around my illness as i simply can't find the words due to my diminished cognitive functioning. This is one of the hardest symptoms to deal with. The loss of intellect. It's in there somewhere, I'm in there somewhere, but I just can't get the words to make sense. It is imperative that someone listens to our voices and I am so thankful for your determination in challenging the medical profession around our treatment options. It will probably be too late to make any difference to my case. I have previously had a life where i travelled up and down the country for my career, helping to make a difference in the lives of vulnerable children. I had authority and was very much a professional. I have always worked within the public sector, both local and central government. I had a lively social life, always on the go with my partner and family. Now my life revolves around my bedroom. I rely on pillows, blackout curtains and strong medication to try and control my pain. If I journey out, it is to visit my G.P. I hope that in the future no one will be penalised for not undergoing treatment that is harmful to their health as a result of your campaigning; that CBT and GET will be removed from the guidelines with immediate effect, rather than waiting for years while the guidelines are revised. Please please continue the fight for those of us struggling to do it for ourselves Little more needs to be said. IiMER Conference DVDs The Invest in ME Research conference DVDs are professionally filmed and authored DVD sets consisting of four discs in Dolby stereo and available in PAL (European) or NTSC (N. America) format. They contain all of the presentations from IiMER International ME/CFS Conferences (2006 – 2013). Also included in the DVD sets are interviews with ME presenters, news stories and round-table discussions. The Invest in ME Research conference DVDs have been distributed to more than 20 countries and are available as an educational tool – useful for healthcare staff, researchers, scientists, educational specialists, media, ME support groups and people with ME and their carers/parents. Full details can be found at http://www.investinme.eu/IIMEC13pastconferences.shtml or via emailing Invest in ME Research at info@investinme.org Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 17 of 56

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