‘Flawed and harmful’: Scientists lash out at exercise ban for chronic fatigue

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There is no cure for ME/Chronic Fatigue Syndrome, which is estimated to affect about 20,000 people in Scotland. A new review says the 2021 guidance that concluded that graded exercise regimens are harmful is flawed and unscientific <i>(Image: Getty)</i>” src=”https://s.yimg.com/ny/api/res/1.2/7nLt17Iabs4JPL9KRddNCg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MA–/https://media.zenfs.com/en/herald_scotland_359/07b21ec25f67384a04befc80cdbda2a3″/></div>
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<p><figcaption class=There is no cure for ME/Chronic Fatigue Syndrome, which is estimated to affect about 20,000 people in Scotland.A new review says the 2021 guidance that concluded that graded exercise regimens were harmful was flawed and unscientific (Image: Getty)

Researchers said a “flawed” review that concluded that graded exercise regimens were unsafe could “harm more than help” patients with chronic fatigue syndrome.

a New evaluation A long-running debate has reignited over what interventions physicians should prescribe for patients suffering from chronic fatigue syndrome, also known as ME.

Landmark guidance released in 2021 by NICE, the body that advises clinical practice in England and Wales, says that progressive exercise therapy (GET) should not be recommended.

It also revised the view that cognitive-behavioral therapy (CBT) should only be used to manage symptoms and distress, not to aid recovery.

Read more: Long novel coronavirus, wakefulness, and the mystery of post-virus illness

Instead, NICE recommended energy management, known as “pacing,” and advised patients on how to appropriately adjust their activity levels to avoid exacerbating symptoms.

The U-turn, overturning the 2007 guidelines, was hailed as a victory by campaigners who warned that it was dangerous for the majority of patients and was causing symptoms to worsen rather than improve.

In February this year, the Scottish government incorporated the NICE update into its own policy document on ME-CFS treatment, known as the Scottish Statement of Good Practice.

But a new review of NICE guidance for 2021, published in the Journal of Neurology, Neurosurgery and Psychiatry, has rekindled the controversy.

Herald Scotland:

Herald Scotland:

The study was co-led by researchers from the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, with input from over 50 international experts, including academics from the University of Edinburgh’s Center for Clinical Brain Sciences. He said the 2021 guidance was “problematic”.

They state: “The original 2007 guidelines that recommended CBT and GET (research evidence has strengthened over the next decade), removed GET, accredited CBT, and called them “energy.” There is little evidence for “management,” which makes it difficult to understand the disconnect with recent guidelines that replace it.

“We believe that this new guideline effectively denies clinicians the ability to offer GET and evidence-based CBT to patients who desire it, at the risk of chronic ill health and permanent disability. I am concerned.”

NICE rejected the findings and promised a “detailed response.”

Read more: Warn of ME ‘Tsunami’ after Pandemic

There are about 20,000 people in Scotland with ME/CFS, a postviral condition characterized by chronic long-term symptoms such as debilitating fatigue, muscle pain, brain fog and insomnia. It is estimated that

Symptoms can fluctuate over time, but there is no cure and many patients are bedridden.

A new analysis claims the 2021 NICE review was flawed.

These include the use of the definition of ME/CFS as ‘post-exertional symptom deterioration’, which was not mandatory in previous studies, and the ‘ignoring’ of treatment outcomes in some previous trials.

The researchers further said the 2021 review “prioritized evidence from qualitative studies and patient tissue studies” to conclude that GET causes harm.

HeraldScotland: Development of ME/CFS usually follows viral infection, but the exact mechanism behind this condition is still unknown

HeraldScotland: Development of ME/CFS usually follows viral infection, but the exact mechanism behind this condition is still unknown

Development of ME/CFS usually occurs after viral infection, but the exact mechanism behind this condition is still unknown (Image: PA)

However, they say, “a rigorously conducted systematic review, including gold-standard randomized controlled trials, found no evidence that GET causes harm.”

Furthermore, “after downgrading the clinical trial evidence for CBT and GET, NICE recommended the use of ‘energy management,’ also known as pacing, which encourages patients to stay within the energy limits imposed by their disease.” added.

“But there is little or no evidence to support such an approach.

“The only substantive trial of pacing in CFS/ME published to date suggests that such an approach is no more effective than specialist care alone and no more effective than CBT or GET. shown.”

READ MORE: Dundee Long’s COVID-19 Clinic ‘Completely Overwhelmed’ by Demand

Co-author of the review, Paul Garner, Emeritus Professor of Evidence Synthesis in Global Health at the Liverpool School of Tropical Medicine, said: It leads to instructions that can harm patients rather than help them.

“The implications of this are complex.

“These deficiencies really undermine the credibility of this 2021 update of CFS/ME’s NICE guidelines.”

Herald Scotland: Outside the Scottish Parliament, MEAction Scotland activists protest graded exercise therapy as part of the #MissingMillions campaign, raising awareness for people confined to their homes because of symptoms

Herald Scotland: Outside the Scottish Parliament, MEAction Scotland activists protest graded exercise therapy as part of the #MissingMillions campaign, raising awareness for people confined to their homes because of symptoms

Outside Scottish Parliament, MEAction Scotland activists protest graded exercise therapy as part of #MissingMillions campaign to raise awareness for people stuck at home due to symptoms (Image: MEAction)

A NICE spokesperson said, “We do not support the conclusions drawn by the authors of this analysis, particularly that NICE did not follow international standards for guideline development, leading to instructions that may harm patients rather than help them.” categorically rejects,” he said.

“In developing our guidelines, we not only compiled the best available scientific evidence, but also listened to real world experiences and testimonials from patients with ME/CFS, and sought a balance that puts their health at the center. I have created a set of guidelines.

“We plan to provide a detailed response to this analysis, and in the meantime we hope that our system partners and the ME/CFS community will continue to work together to ensure the key recommendations of the guidelines are implemented. I am convinced of

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