Action for M.E. in the news
August 25, 2021
In the three weeks since our press briefing to journalists, we’ve received an unprecedented amount of coverage from all kinds of news outlets. Our intention from the briefing was to make sure the media spotlight was on M.E. as well as Long Covid and we’ll continue to work with journalists to ensure people with M.E. are not forgotten.
It started with a piece in the Scottish Sunday Express with an article by Paula Murray titled, ‘We may see kids lose ten years development.’ The piece quoted our medical adviser Dr David Strain, our Chief Executive Sonya Chowdhury and Alec Finlay, who is living with Long Covid and M.E.
Next was Chris Riches in The Daily Express with an article on how Britain could be facing an avalanche of cases of M.E. sparked by Covid. “Experts fear after three gruelling coronavirus waves, the numbers of Long Covid patients could dramatically rise by this winter. Now charity 'Action for M.E.' are saying boosting research into ME/CFS could also help the 385,000-and-rising Long Covid sufferers in the UK.”
We were also quoted in an article by Lucia Osborne-Crowley for Refinery 29, a global media company focused on young women. There are some great quotes in the piece, including, “Women who suffer from ME have been dismissed by the medical establishment for decades. Now, many of the symptoms associated with the condition are in the spotlight under a different name: Long COVID.”
We’re grateful to have made it into The Times several times over the last few weeks. Please note that the following links are behind a paywall.
There was an interview with actor Jennie Jacques, who was speaking about her M.E. for the first time. "The first and the second year, for me, were the worst and I’m lucky to have seen some improvement in my third year. But my life is still limited and I am a shadow of my former self physically. There have been times when I couldn’t even get outside in a wheelchair or to my front doorstep. Any exertion or ‘efforts’ to get well only pulled me backwards. Whether it’s mild, moderate or severe, ME has the ability to turn a person’s life upside down."
Followed by a piece called ‘Link between long Covid and ME could transform the lives of sufferers’, by Sean O’Neill. It details the long history of M.E. being misunderstood and misdiagnosed and includes infographics on the similarities in symptoms and numbers of those affected. A compressed version appeared in the print edition of The Times on Saturday 21 August.
Then a Q&A with our Chief Executive Sonya Chowdhury, who together with Dr David Strain, Dr Nina Muirhead and Claire Hastie, founder of Long Covid Support, answered readers’ questions about the links between M.E. and Long Covid.
NICE guideline coverage
We were also quoted across multiple outlets in response to the delayed publication of the National Institute for Health and Care Excellence (NICE) guideline; The Guardian quoted our Chief Executive Sonya Chowdhury, as did Medscape, The Daily Mail and Huffington Post. Our organisation, as part of Forward ME, was mentioned on the BBC.
Sonya also appeared on BBC Radio 4’s Today programme (listen from 07.53) urging NICE to publish its new guideline. Refuting a claim by Dr Alastair Miller, also interviewed by Today host Sarah Smith, that the opposition to graded exercise therapy (GET) and cognitive behavioural therapy (CBT) comes from a small number of patients and charities, Sonya explained that the embargoed guideline did in fact retain CBT but “acknowledges that CBT is not curative; it has a place in supporting people to live with the illness, and cope with the symptoms but is not a curative treatment. And it’s not just patients and charities that are saying we don’t want it – the evidence shows that it is not effective.”
Responding to the idea that GET and CBT are the only effective treatments, and without them patients will be left without nothing, Sonya said:
“We frequently hear from children and adults who have been made worse by GET, but also those who have been able to better manage this life-changing condition because their GP listened to them and worked with them to manage symptoms through careful energy management, which is what the draft guideline recommends. This guideline was produced on the back of evidence, by an expert committee, who worked for three years and responded to every single piece of consultation, including from the Royal Colleges. We just don’t understand why the guideline has been delayed now.”
Our Medical Adviser Dr David Strain and our partner on the Learn about ME programme Dr Nina Muirhead appeared together on Woman’s Hour on Tuesday 24 August. It was a brilliant discussion that covered the symptoms of M.E., patients experience of doctors, why three-quarters of people with M.E. are women, the differences between CFS and M.E., why exercise makes it worse, the NICE guideline delay, pacing and what the NHS needs to do differently. Listen from 16.30.
The 28 pieces of coverage we’ve had in August have reached 21,492,855 people.
We’re continuing to raise awareness of M.E. with new audiences, calling for equity for M.E. in terms of access to healthcare and calling for more investment in biomedical research. Our social media has been a hive of activity, 1,179 people reading one single article.
We’re doing all we can to sustain media interest in M.E. and will keep this page updated with new articles.