#MEAction UK has sent out a press release to every major news outlet in the UK, emphasising the removal of graded exercise therapy from the National Institute For Health and Care Excellence’s draft ME/CFS guideline.
Read our press release below, or jump straight to reading the draft guideline.
Harmful exercise treatment for people with ME/CFS has been dropped from 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, who has ME herself, 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.”
As increasing numbers of people with long term symptoms after Covid-19 are being diagnosed with ME, this U-turn comes at a vitally important time. However, it is too late for the thousands of people with ME who have been harmed by this treatment over the past 13 years.
When 16-year-old Cherry from North London began the treatment prescribed for her ME in 2013, she was able to walk to her local hospital’s Fatigue Clinic. Her health significantly worsened after six months of graded exercise therapy until she became bed bound and had increasing neurological symptoms. Cherry’s deterioration after undergoing GET is a common experience in the ME community. An analysis of over 18,000 patient responses to surveys on management of ME symptoms over a five year period reported that 54%-74% deteriorated following GET. Research has shown that people with ME who were given a period of enforced rest from onset had the best prognosis.
Long Covid patients are saved from the harm suffered by people with ME
Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction said “There is strong evidence that many people who have long Covid will go on to meet the diagnostic criteria for ME. Regardless of their ultimate diagnosis, it is vital that people with long Covid listen to their bodies and pace their activity.”
Dr Amy Small, a GP in Edinburgh who became ill early on in the pandemic, commented, “Having always been a very active person prior to long Covid, running several times a week and doing other exercise, I have found it very difficult to come to terms with the post-exertional malaise I suffer now. I have, however, learnt, both from the ME community and the long Covid community that GET is potentially very damaging. It’s not in my nature not to ‘push’ myself but I’ve learnt that the key to recovery is through pacing. Pacing isn’t as straightforward as it would seem but I have gradually managed to pick up my activity levels slowly over the last few months with adequate pacing and rest.”
People with ME are expressing deep relief that long Covid patients with symptoms of ME will not be subjected to graded exercise therapy, which has harmed so many people with ME. Many long Covid patients are reporting ME-like symptoms, including post-exertional malaise, which is the hallmark symptom of ME.
Professor Brendan Delaney, Chair in Medical Informatics and Decision Making at Imperial University, who has long Covid, explains: “Graded exercise therapy assumes that fatigue in ME is caused by a maladaptive behavioural response that can be ‘pushed through’. Clinical studies have failed to account adequately for post-exercise malaise, where ME patients worsen significantly if they ‘push through’, something I have seen regularly as a GP. In the context of long Covid, many patients, including myself, suffer similar relapses of fever and muscle pains if we attempt to exercise (including cognitive tasks) outside our capacity. NICE will need to explore whether there are common biological determinants between some long Covid patients and ME, and suggest research and therapeutic avenues that may benefit both groups of patients.”
Post-exertional malaise (PEM), the cardinal symptom of ME, is defined as a “worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks.” NICE is now recommending that this feature is renamed post-exertional symptom exacerbation (PESE).
What is the evidence that graded exercise is harmful?
Accumulating scientific evidence has demonstrated that continuing to recommend exercise therapy can not only make symptoms worse, but also that pacing is the most helpful option currently available. Something those with ME have been able to help long Covid sufferers learn about. In a recent survey by Oxford Brookes University, about 80% of patients reported deterioration after GET, and this effect was even worse when receiving both GET and CBT together.
Jaime Seltzer, “While graded exercise may be useful in patients who are deconditioned after surgery or a severe illness, graded exercise does not address the metabolic changes and atypical reactions to activity that lead to symptoms in people with ME. Studies that follow patients long-term show no improvement after GET, and patients often report serious deterioration. Only wishful thinking or cost-saving could compel anyone to believe that exercise and positivity could cure a complex chronic illness like ME.”
#MEAction UK is an organisation of patients, carers and allies fighting for recognition and research for ME.
- Read the draft guideline: http://www.meaction.net/wp-content/uploads/2020/11/NICE-MECFS-guideline-for-consultation.pdf
- NHS Your Covid Recovery advises exercise: https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/
- “We’ve waited 13 years…” video on NICE (2 mins)
- Stop. Rest. Pace. campaign and “I got a virus, I didn’t die, but I never recovered” videos https://www.meaction.net/2020/10/21/sian-stop-rest-pace/
- The connection between ME and long Covid https://www.meaction.net/long-covid-me-understanding-the-connection/
- Graded Exercise potential harm to people with long Covid https://www.meaction.net/2020/07/15/take-action-graded-exercise-harming-people-with-me-and-covid-long-haulers/
- Letter to Matt Hancock https://www.meaction.net/2020/07/15/take-action-graded-exercise-harming-people-with-me-and-covid-long-haulers/
- Research showing majority of ME patients who received GET got worse https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
- Patient survey showing harm from GET https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/
- Research showing patients with ME who had enforced period of rest had best prognosis
- A study on Epstein-Barr virus, Q Fever, and Ross River virus showed that ~12% of subjects across the board met ME/CFS criteria at 6 months after clearing the infection. https://pubmed.ncbi.nlm.nih.gov/16950834/
- US Centre for Disease Control ON Post-exertional malaise: https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html
5 thoughts on “U-Turn on ME/CFS Guidelines Could Help Long Covid Patients – Press Release”
A lot of what’s in the draft is a monumental improvement, but there still seems to be great emphasis on increasing activity levels, which I find dangerous, even though it is peppered with cautions to do this with the patient’s agreement. I’d like this to be looked at.
The suggestion that severe and very severe patients might need adaptations and wheelchairs also hints that they could manage without and that moderate and milder cases probably don’t need them. I know that this is addressed later in the document, but the wording here concerns me. Such aids can be valuable over a wide range of severity as a way to conserve precious energy.
I…oh gosh! What can I say? This draft isn’t perfect – but I honestly think it’s the most positive move forward that the British medical establishment has made in at least twenty years!
GET is out! The Lightening Process is out! CBT is limited to helping people adjust to their new life with a chronic illness, and explicitly not permitted to make claims of a cure or push people into doing too much!
Meanwhile working within your energy envelope is in! Multidisciplinary teams and getting people recommendations for accessing practical help are in! And they’re even recommending a research push to find diagnostic tests!
Be carefull, GET is still there – now it is flexible increments:
„use flexible increments for people who want to focus on improving their physical abilities while remaining within their energy envelope“
Hello! Thank you for such helpful information. I was diagnosed with ME syndrome five years ago and now my health is constantly deteriorating. Now I spend 95% of my time in bed and my parents look after me. I used to do the exercises that NICE recommends, now I eliminate the potentially harmful exercises. God bless the staff and volunteers of MEAction, and all those who walk alongside those of us with ME / CFS.
My son (20) was diagnosed with ME/CFS in 2016. We have had no financial support, declined PIP twice. He spends days in bed. He can’t work but he can wash/toilet etc, that’s why we cannot get help. We need more Doctors, and financial support.
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