Journal of IiMER Volume 13 Issue 1 Invest in ME Research medical schools expressed an interest in receiving videos, e-learning and lecture materials on ME/CFS. 2) Thematic analysis of 38 written responses from PWME identified three key themes that PWME believe medical students should be taught about: i) the definition and diagnosis of ME/CFS; ii) treatment options; and iii) the ways in which ME/CFS affects quality of life (QoL). Conclusion: The creation of e-learning or a short video to introduce ME/CFS followed by lectures or a teambased learning approach are suggested to improve teaching of medical students on the topic of ME/CFS. It was also concluded that a comprehensive basis for medical student ME/CFS teaching relies on a curriculum that encompasses accurate up to date information on the epidemiology, terminology, aetiology, treatment and effect on QoL of ME/CFS. presented with evidence of the damage caused, is negligent. There are also doctors who clearly remain ideologically challenged by this disease and continue to harbour false views about ME, fed by a Biopsychosocial (BPS) influenced healthcare system. Above all doctors seem to have lost any ability to say, "I don't know what is wrong" - as though this may be a shortcoming. So much easier to assign a diagnosis of the spurious Functional Neurological Disorder (FND). If only doctors would say, "I don't know what is wrong but will work with you to find answers". If only patients were believed. Much of this can be traced back to negligent policies from governments, health departments, research councils and clinical care organisations, and research funding bias that discourages biomedical research into ME. Doctors and Patients Many ME patients, at least those who are still being treated by a doctor, often comment on how doctors do not understand the disease. This itself compromises the future prospects for a patient to receive anything approaching adequate care. The reasons for this may be that doctors receive no training on ME - either during medical school due to flawed and sparse contingency in the medical curriculum for ME - or later during their career where there is little on offer. Invest in ME Research has, since 2006, been arranging CPD-accredited conferences for professionals in London and the participation of doctors has been gradually increasing. Yet there remains a great deal to do. Medical education about the realities of ME is essentially missing - with what is on offer being either inadequate or incompatible with the true requirement to understand this disease and be aware of what can make patients worse. Doctors also may be constrained by NICE guidelines in what they feel they are able to offer. NICE guidelines are currently being reviewed yet the farcical set up of the guidelines development group augurs badly for any positive outcome. NICE’s refusal to remove CBT and GET immediately from the existing guidelines, despite being Invest in ME Research (Charity Nr. 1153730) Despite this, there have been signs of light coming through as more education and more research, funded by organisations like Invest in ME Research, changes the barren landscape that has existed in the UK healthcare system. And there are doctors who think for themselves and listen to their patients. And there are pioneers in treating people with ME. Two such doctors were Dr John Richardson and Dr Irving Spurr. Dr John Richardson had a distinguished career as a physician and published numerous papers. He was a founder member of the Newcastle Research Group in which he was very active and the primary organiser of their annual international conferences. He was also a member of the Melvin Ramsey society and the Environmental Medicine Association as well as other medical research organisations. Following his retirement from the NHS, he continued to see patients privately on a voluntary basis regularly seeing in excess of thirty per day. Many travelled considerable distances from the UK investinme.org Page 23 of 52

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