18.1治療ガイドライン(案)に対する海外の意見③

ME/CFS治療ガイドライン案に対する、海外の専門医や患者団体からの意見の紹介③

国際CFS/ME学会副会長で米国Workwell FoundationのStaci Stevensと研究グループ(パシフィック大学のJ. Mark VanNessとTodd Davenport、Workwell Foundationの Christopher Snell)の意見

健常者と異なり、ME/CFS患者は心肺運動負荷検査を二日続けて行うと、二日目に著しい運動機能低下を示すことを証明し、この病気の中核症状である労作後の不調の理解を促進しているリハビリ専門家を含む研究グループとStaci Stevensから、 特に有酸素運動であるGETは、 患者の機能回復につながらないだけではなく、有害であることを示す資料を送って頂きました。さらに、日本のガイドライン案に対して見解をまとめて下さることになりました。

Our experiences working with ME/CFS patients are that graded exercise – particularly aerobic exercise–not only fails to improve function, it is detrimental to the health of patients. The rationale behind using GET as treatment for ME/CFS is that it can reverse a cycle of inactivity and deconditioning, and subsequently reduce the fatigue and disability associated with this disease. However, it seems counterintuitive at best to employ exercise as treatment when the hallmark of ME/CFS is a distinctive post-exertional malaise or PEM, whereby even trivial mental or physical exertion can cause a worsening of symptoms and reduced function . As further noted in the 2015 National Academy of Medicine (NAM, previously called the Institute of Medicine) report, ME/CFS is a complex, multi-system disease accompanied by neurological, immunological, autonomic, and energy metabolism impairments. It is not deconditioning nor are its symptoms explained by inactivity. As noted by NAM chair Dr. Ellen Clayton, the debility in ME/CFS is much greater than would be seen with deconditioning.

Scientific studies published by our group and other researchers have demonstrated that aerobic exercise exacerbates symptoms, a conclusion supported by the 2015 NAM report. This abnormal physiological response to exertion is so distinctive that many ME/CFS researchers, including the National Institute of Health’s Intramural Study and Cornell’s Collaborative ME/CFS Research Center, use exercise, not as a therapeutic intervention, but as a way to exacerbate the illness so that it can be studied.

Studies evaluating the use of graded exercise therapy (GET) to treat ME/CFS have been criticized in part for including patients with other fatiguing conditions. This led the US Agency for HealthCare Research and Quality (AHRQ) to conclude in its evidence review that once these studies were excluded there was insufficient evidence of efficacy for GET. Beyond lack of efficacy there is also concern about the harm done by GET. AHRQ reported that GET was “associated with higher numbers of reported adverse events.” A 2017 review of patient surveys by Geraghty concurred, stating GET “brings about large negative responses in patients.” In addition to research, our team has also worked for years with therapeutic exercise strategies in an attempt to help ME/CFS patients. We have tried to incorporate aerobic exercise training as a re-conditioning strategy for ME/CFS patients but it simply does not work. To the contrary, in nearly all cases, patient symptoms heighten after exercise.

http://www.virology.ws/2018/02/05/trial-by-error-letter-to-british-journal-of-sports-medicine-from-cpet-experts/
http://www.workwellfoundation.org/wp-content/uploads/2017/07/GETSET-Trial-in-MECFS-L1.pdf

ME/CFSのアドボカシーのMary Dimmock(米国)の意見

米国ニューヨーク州の医療関係者85,000人に送られた手紙を転送して頂きました。「過去にGETとCBTが推奨されていましたが、他の疲労病態の方を含む研究に基づいており、ME/CFSは労作不耐が顕著ですので、実際には多くのこの病気の患者は運動によって健康を害する可能性があります」

Dr. Lapp forwarded me a message about what is happening in Japan…I am including this link to a letter from the New York State Health Commissioner letter to 85,000 medical providers in the state of New York.”In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease.”

https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view

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