The All-Party Parliamentary Group on Myalgic Encephalomyelitis will be meeting later this month, and we’ve submitted a short statement for their consideration, which is also pasted below.
Please urge the NHS to provide mandatory training on ME/CFS to doctors. Most doctors receive no training on ME/CFS, either during their time at medical school or after, and as a result patients wait years for diagnosis and receive outdated, inappropriate and harmful treatments. The consequences are unnecessary suffering, increased disability, and avoidable deaths.
Hospital doctors have no idea how to deal with patients with severe ME/CFS, and therefore fail to provide the appropriate care. Maeve Boothby-O’Neil died of ME/CFS in 2021 after hospital doctors repeatedly refused to provide enteral feeding, a simple, routine procedure that might have saved her life. More recently the case of Alice Barnett was in the news; Barnett’s family had to fight for her to receive needed medical treatment after hospital doctors refused to provide it, in violation of the NICE guidance.
Children and young people face particularly bad treatment as doctors who don’t understand ME/CFS push them into therapies and rehabilitation programs that are harmful for them, and make them sicker.
The doctors involved are not bad people, they simply don’t know anything about ME/CFS, and they assume (reasonably enough, one would think) that if ME/CFS were really serious, someone would have told them about it. So they fail to understand that the patients they see are in fact severely ill. Ideally when faced with an unfamiliar illness a doctor would take time to read about it (and strictly speaking they are obliged to do so under GMC rules) but in reality they are far too busy.
The 2021 NICE guidelines on ME/CFS have so far been ignored. The NHS has made no attempt to communicate the new clinical standards to doctors. Outdated and harmful medical treatments continue to be the norm. Health Education England, the NHS body responsible for ongoing medical education, provides no training at all on ME/CFS, despite a desperate need for it.
The NHS must urgently provide mandatory training on ME/CFS for doctors. This need not be expensive or time consuming: an excellent, free, one-hour, certified CPD course for doctors already exists, commissioned by the Scottish Parliament in 2021 and recently updated; it can be found here: https://www.studyprn.com/p/chronic-fatigue-syndrome. Requiring doctors to complete this training wouldn’t solve all the problems, but it would be a tremendous step forward, at very little cost.
ME/CFS Medical Education Campaign 