Full text:
Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.
Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.2
A lack of understanding about the condition and the absence of a proper test to diagnose it meant that patients with ME, including his relative, had been let down by the NHS, he said.
Within weeks his relative had gone from being an active 12 year old—interested in sports, captain of her school netball team, and doing well academically—to one who struggled with fatigue and low energy. Doctors were unable to explain her illness or offer any treatment and had diagnosed ME.
“I just really felt like the clinicians weren’t doing their job—well, certainly not well enough—because it felt like it was like the default option,” said Javid. “When you just can’t really find out what the true cause is, let’s just call it ME/CFS [chronic fatigue syndrome]—that’s a sort of convenient bucket—and let’s just leave that child in that bucket.”
Medical shift
Unable to cope with the demands of a full school day, his relative found that her schoolwork suffered. She was held back a year and, now aged 18, has been detached from her friendship group, who have moved on to university and the workplace.
“There’s really no end in sight to this, and that’s the most frustrating and most worrying thing of all, for her and for her parents,” said Javid—“and that can’t be right.”
Although he told patients attending the launch that he could not “promise miracles” in finding a treatment, he pledged a new cross government approach to supporting people with ME, which would encompass not only healthcare provision but also education, work and pensions, and local government.
The all party parliamentary group’s report, Rethinking ME,1 says that the research focus on long covid provides an opportunity to develop a better understanding of causes and treatments for other conditions that may develop post-virally, including ME.
Collaborative research projects could “finally put an end to the narrative that these conditions are psychological in nature,” it says, adding that long covid research funded by the National Institute for Health Research should include groups of patients with ME as comparators.
The report also highlights last year’s publication of the National Institute for Health and Care Excellence’s clinical guideline on ME/CFS3 as “a turning point” that “sets the precedent for a medical shift away from a problematic behavioural or psychological understanding of ME and towards a more holistic biomedical or physiological understanding.” The report’s primary recommendation is “to ensure that the new guideline is swiftly implemented in full by relevant health services.”
Health service commissioners should also ensure cooperation between ME and long covid clinics to maximise patient benefit, the report advises.
References
↵All Party Parliamentary Group on Myalgic Encephalomyelitis. Rethinking ME. May 2022.
https://appgme.co.uk/.../Rethinking-ME-a-report-by-the...
↵Torjesen I. NICE sets out steps NHS must take to implement ME/CFS guidelines. BMJ2022;377
1221.doi:10.1136/bmj.o1221 pmid:35577360FREE Full TextGoogle Scholar
↵Torjesen I. ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE. BMJ2021;375:n2643. doi:10.1136/bmj.n2643 pmid:34716175FREE Full Text
So not quite the same.!
