Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalomyelitis (ME) should increase their movement, counter to research and people’s lived experiences.
People with the disease say Riley belittled the reality of severe ME and made statements that go against the science of the disease.
The article caused ME advocacy groups and campaigns including Long COVID Advocacy and #ThereforME to suspend their support of the ME Association. Alexis Gilbert, a doctor with ME from Leeds, England, also penned a retraction letter that more than 1,000 people have signed. Others on social media have called for Riley’s resignation.
“How are we supposed to maintain support for a charity when we know their chair has a completely inadequate understanding of the very disease he’s supposed to be advocating for?” Gilbert wrote in an email to The Sick Times.
In the article, Riley expressed his opinions about movement as a “remedy” for ME, suggesting that it may help some people improve from the disabling and energy-limiting symptoms of the disease.
“I believe that, if we stop moving, then, like all animals, we are on a dangerous slope to a predictable end,” the chairman wrote in the op-ed. “There are some with ME who are extremely ill, confined to bed and for which my remedy would be totally wrong. But for many, I think it’s worth a go.”
People with ME and many with Long COVID experience post-exertional malaise (PEM), also called post-exertional neuroimmune exhaustion (PENE). This disabling cluster of symptoms can be worsened after pushing beyond even small limits of physical, mental, or emotional activity.
According to research in Nature Communications, muscle abnormalities have been shown to worsen in PEM/PENE. ME experts recommend adapting to lifestyles that do not trigger PEM/PENE, which is often a challenging task due to changing baselines, other uncertainties of the disease, and a lack of social and economic support systems. This often means rest and pacing, a technique that helps preserve energy and avoid PEM/PENE.
Over the decades many people with ME have been prescribed potentially harmful treatments like graded exercise therapy (GET), despite overwhelming evidence the disease is biophysical and is not improved by exercise or increasing activity levels. GET isn’t recommended as a therapy for ME by major health organizations like the U.K.’s National Health Service (NHS) or the United States’ Centers for Disease Control (CDC). Experts of ME and Long COVID denounce GET, and many people with ME and Long COVID who have undergone the treatment say it decreased their quality of life and further disabled them.
After receiving backlash for the op-ed, Riley published a follow-up statement on November 19. The ME Association’s X/Twitter account shared the link to the statement but turned off comments to the post.
“First and foremost, I apologize wholeheartedly for any undue upset that the article caused,” Riley wrote. Riley clarified that he was not advocating for graded exercise therapy and stated that rest is “crucial,” writing, “Otherwise we go beyond our energy envelope and relapse.” Yet, in a 2019 opinion piece in the same ME Association magazine, Riley expressed a similar message to his 2024 op-ed.
“It does worry me that some people with ME think that total bedrest will bring a cure… ‘Rise from your bed and walk’ would be my advice, once the initial illness has passed,” he wrote in the 2019 op-ed. “With a chronic illness you can either get bitter or you can get better. You either take what’s been dealt to you and allow it to make you a better person or you allow it to tear you down. The choice is yours.”
Many people in the ME and Long COVID community were not convinced by Riley’s follow-up statement or of the ME Association’s handling of the criticism.
“His ‘apology’ can be pretty much summed up as ‘sorry, not sorry’”, Alexis Gilbert, the organizer of the retraction letter, wrote to The Sick Times. “In his statement he apologies if he caused “undue upset” suggesting he thinks the reaction is unjustified and over the top.”
Gilbert explained that Riley’s message mocked people with severe ME and put people at risk of worsening their condition. “[Riley’s] words aren’t just read by patients who may read it and second guess their need to rest and pace, but by carers and family who could then go on to push the patient to overexert and decline,” he wrote. The op-ed could contribute to mistreatment from caretakers, Gilbert said.
Many on social media claimed that Riley was aware of the ramifications of his op-ed when he wrote it. “This Editorial contains words that some might find disturbing. Those of a sensitive nature should look away now,” Riley wrote in the introduction of the op-ed.
“Movement is good for you! There, I’ve said it. My dear friends on social media will be reaching for their keyboards as I write, pronouncing me a bio-social psychic proclaimer, a danger to the ME community and, oh horror, a follower of Wesely, White, et al.”
[Riley’s] words aren’t just read by patients who may read it and second guess their need to rest and pace, but by carers and family who could then go on to push the patient to overexert and decline.
Alexis Gilbert
The op-ed and charity’s response have since led to advocacy groups and campaigns suspending their ties with the ME Association.
“In good conscience, we cannot continue our collaboration with the ME Association until the community’s valid concerns have been sufficiently addressed,” advocate Oonagh Cousins of #ThereforME shared on Twitter/X on November 18. “We have made clear to the ME Association the actions we believe are necessary for collaboration to resume. The door remains open, and we hope they will take sufficient action.”
The group Long COVID Advocacy also issued a statement expressing similar concerns, calling the op-ed, “deeply inappropriate, potentially harmful, and out of touch.” The organization stated they would remove all links and associations with the charity.
“The ‘othering’ and stigmatization of ME patients as ‘difficult’ can only be concluded to be abusive and reflective of how many people with ME are often demeaned by the medical profession,” the advocacy group wrote. “Strong action is needed from The ME Association to restore trust & repair reputational damage; an apology for “undue upset” is not an apology.”
The Sick Times has reached out for comment from Neil Riley and the ME Association but has not heard back from the organization at the time of publication.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
Leave a Reply