Journal of IiME Volume 9 Issue 1 “Many patients with ME/CFS are misdiagnosed and treated erroneously with potentially toxic therapies that may cause harm. “Current research has neglected many of the biological factors underlying ME/CFS onset and progression. “ME/CFS is a chronic, complex condition…with no cure…..Nothing has improved the lives of the patients. “fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS. The Conclusions of the draft report reiterate key findings: “Specifically, continuing to use the Oxford definition may impair progress and cause harm…Thus, for needed progress to occur we recommend that the Oxford definition be retired”. May 2015 ●● ● there are new rules of consent and doctors are legally accountable for informing patients of any material risks in any recommended medical interventions (BMJ 2015:350:h1481). This means that psychiatrists who recommend graded exercise therapy for people with ME/CFS must warn them of the potential risks of deterioration with exercise, or be in breach of the law. To many people, it also means that having to inform patients with ME/CFS of the risks of GET (because of the increased cardiovascular risk, which would have to be explained to patients) invalidates the belief that patients are suffering from a behavioural as opposed to a physical disorder. “psychiatrists who recommend graded exercise therapy for people with ME/CFS must warn them of the potential risks of deterioration with exercise, or be in breach of the law” ●● ● https://prevention.nih.gov/docs/programs/mecfs /ODP-MECFS-DraftReport.pdf Since such strong doubts have been raised about the Oxford criteria, the question again arises about the validity and safety of the NICE Clinical Guideline on ME/CFS (CG53) which relies so heavily on Oxford criteria-based research and which promotes directive (not supportive) CBT and GET as the primary intervention for those with ME/CFS. In the light of current knowledge, whether or not clinicians should rely on the NICE Guideline has become ever more imperative, especially in the light of the recent UK Supreme Court ruling that overturned the long-held Bolam principle (a test used to assess medical negligence; it held that a doctor was not negligent if his actions would be supported by a responsible body of medical opinion; indeed, the accused doctor needed only to find an expert who would testify to having done the same thing). This has now changed: The latest NIH draft Statement confirms the long-held belief that the NICE Guideline on ME/CFS should be withdrawn because, as many have claimed from the time it was published in August 2007, it was never fit for purpose, and further doubt must now arise as to how safe it is. Indeed, this has now been acknowledged: in June 2014 Professor Mark Baker, Director of the Centre for Clinical Practice at NICE, said at the Forward-ME Meeting at the House of Lords that the NICE Guideline was no longer meeting the needs of people with ME/CFS and should be replaced. (2) After publication on 10th February 2015 of the Institute of Medicine’s Committee’s report (Beyond ME/CFS: Redefining an Illness), the US Centres for Disease Control decided to archive its CFS Toolkit that recommended CBT and GET as interventions for ME/CFS. The conclusion of the IOM Report states: “It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (http://www.cdc.gov/cfs/toolkit/archived.html). The “behavioural” school continues to ignore the evidence (not hypotheses) documented for ME/CFS. The evidence is now so strong that Invest in ME (Charity Nr. 1114035) www.investinme.org Page 20 of 57
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