Journal of IiMER Volume 13 Issue 1 Invest in ME Research for some other causes in parents or patients (Munchausen’s by Proxy, Pervasive Refusal Syndrome and so on ) despite the CMO report recognising ME as an organic illness - Good doctors who kept children safe from the threat of child protection orders have now retired or passed away so the parents have nowhere to turn to for support - OTs were helpful but in their experience GPs had been terrible - Advice/information given by unhelpful GPs and consultants, paediatricians over the years included removal of parental support, physiotherapy, stating that ME is not a real disease, that it was an illness caused by exam nerves etc. - GP visits were unannounced, and the family was reported to social services for neglect and the family were then asked to leave the GP service - In 2012, after a fairly stable period, tooth surgery caused a severe relapse and the GP decided to resurrect the earlier accusations - The family had kept quiet for 12 years but felt now that enough was enough. They had sent complaints to PALS. The doctors had refused to comment. This representation was enough to convey what many in the UK had felt for a generation and for which little has, or is being done. Dr McShane commented that to change the quality of life with long-term conditions we have to accept what we do not know. IiMER felt this was not good enough. We explained how we had sat in countless meetings, with words said, promises made and nothing ever changes. It was unacceptable. Empathy was fine, and we were grateful for Dr McShane’s acknowledgement of the poor service given to ME patients and their families. However, we needed to progress – and we had ways, proposals which could be used to progress this. Invest in ME Research (Charity Nr. 1153730) IiMER pointed out the difficulties in getting anything done and we did not want to go away from yet another meeting with nothing, and no action plan. The local commissioner at the meeting had promised education of GPs. However, we all felt that there is a major problem in the lack of accountability. Nobody seems to want to take responsibility - and this extends from the local level right the way up the chain to the CMO and the Minister for Health. (IiMER mentioned that CMOs had been invited to every single one of the eight (at that point in time) IiMER annual conferences - without any sign of leading or an agenda for ME) IiMER suggested using this area (ME) as an example of a difficult area of medicine and use it as a model for nationwide services. Dr McShane promised to promote Dr Terry Mitchell’s approach (kind, caring, patient centred). Whilst we felt Dr McShane was genuinely empathetic to the plight of ME patients and their families we saw no appetite from any direction in the NHS to invoke change, to rectify the inadequacies in the NHS or to initiate any visionary approach to progressing ME. And so it proved to be. At the meeting our overriding feeling was that we would have to continue to make the changes necessary ourselves. And so it proved to be. “The carer of an M.E. loved one is like no other carer. Not only is it imperative to learn about myalgic encephalomyelitis in order to give the specialist care required for M.E. (to avoid causing them further harm), it is also necessary to become their protector” Dr Amolak Bansal spoke at the #IIMEC8 conference in 2103. After the conference Dr Bansal added the following especially for Invest in ME for a forthcoming news article (which subsequently was not used), explaining severe ME in the following way - “While it is presently very difficult for modern medicine to fully explain all severe ME symptoms, disordered neural function within the brain and spinal cord would come close. How this occurs is unknown but there are counterparts in certain newly described autoimmune conditions and viral infections of the nervous system. In addition to a direct stimulation of neurones in different parts of the brain and spinal cord there is investinme.org Page 31 of 52

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