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News:

Graded Exercise Therapy is out

ME Action Network UK have released a statement following the news that harmful exercise treatment for people with ME/CFS has been dropped from the latest NICE guidelines:

“After 13 years of recommending graded exercise therapy (GET) to people with Myalgic Encephalomyelitis (ME), a new draft guideline on ME/CFS from the National Institute for Health and Care Excellence (NICE) advises against “any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy”.”

#MEAction UK spokesperson, Sian Leary said:

“A national institution recognising there is no treatment or cure for ME represents a paradigm shift in the UK. This guideline is an improvement, but also highlights just how far we have to go. Removing graded exercise therapy from the guideline should end the institutional harm of people with ME, and work to ensure those at risk of developing ME after having Covid-19 are not made worse. Now, health professionals must do the crucial work of providing appropriate care for people with ME, and research funders must set about expediting research into this devastating disease.”

The full press release from ME Action Network UK is at:

https://www.meaction.net/2020/11/10/u-turn-on-me-cfs-guidelines-could-help-long-covid-patients-press-release/

Director of the Centre for Welfare Reform, Dr Simon Duffy commented:

“This is such good news. Many of the Centre's Fellows live with chronic energy-limiting impairments and can tell you the harm caused by GET and the harmful public policy which has been driven by false claims about its effectiveness. George Faulkner's report In Expectation of Recovery forensically reveals the bad science that supported false claims about GET. The work of Mo Stewart demonstrates how ideological and commercial pressures have driven DWP policy on disability and illness. Catherine Hale, Stef Benstead and Jenny Lyus, through their work with the Chronic Illness Inclusion Project, have shown the importance of listening to the voices of disabled people with energy-impairments and the need to properly recognise and support this group within the disability community. The Centre will continue to support this work and is thankful that NICE has also shown a willingness to listen to people's experiences and respect good science.”

Director and Lead Researcher of the Chronic Illness Inclusion Project, Catherine Hale commented:

“This welcome news is thanks to the dedication of patient-led organisations like ME Action Network UK. GET has caused untold harm to the physical health of people with ME and their quality of life, as well as causing trauma. Biomedical research now demonstrates the physiological effect of exertion in ME. If GET were a drug it would have been banned decades ago. The fact is that patients were silenced, ridiculed, and branded as dangerous activists for so long in order to conceal the sham research on which GET was based and preserve the reputations of those who promoted it. 

“The new draft NICE guidelines are good news for people with ME. But we must not lose sight of the bigger picture for disabled people with chronic illness that are hard to diagnose, poorly understood or contested by the medical establishment. Under the construct of Medically Unexplained Symptoms they are currently receiving the same potentially harmful therapies of CBT and graded activity or exercise, based on unevidenced psychosomatic theories. The Chronic Illness Inclusion Project aims to be a voice for disabled people with energy limiting chronic illness and chronic pain, regardless of diagnosis.”

The press release from NICE is at:

https://www.nice.org.uk/news/article/nice-draft-guidance

The draft new guidance is available to read at:

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

Read more about the work of the Chronic Illness Inclusion Project at:

https://inclusionproject.org.uk