On Monday 2nd November, The Times and BBC Sport reported that 360 professional sportspeople had written to Andy Burnham, calling on him to meet Olympian Beth Dobbin and commit to funding research for ME.
We reported in our last update on the impact of Beth’s interview with BBC Sport. Since then, Beth has published a brilliant open letter to Andy Burnham calling for more research funding, and to keep the momentum going, we created a template letter for you to write to your MP and a briefing to attach to the email.
With support from ThereForME, she has now rallied 360 fellow Olympians and sports stars to show their support in a letter to the Prime Minister. It describes how ME “has taken away not only Beth’s opportunity to progress in her athletics career, but more importantly, the ability to live any semblance of a normal life.”
Signatories include Olympians, Paralympians, world & Commonwealth champions, & sports stars from football, rugby, darts and more: Olympians Tom Daley, Dina Asher-Smith, Colin Jackson, Lioness Millie Bright, & Everton football manager David Moyes.
Beth’s fellow sports professionals stand behind her and urge the Prime Minister to “meet with her to discuss a much-needed way forward” on ME research.
The news received a hugely positive response within the ME community online, with people sharing comments about feeling seen, feeling supported, and welling up at so much solidarity from healthy allies. It has also been picked up by other outlets, including Joe and the New York Times.
![Pink background with 12 screenshotted comments. Caption: “Response to letter from 360 sports stars in support of Beth Dobbin’s campaign for increased ME research funding.” ThereForME logo. beingphoebee: This has made me cry, never in my 10 years of illness have I seen any kind of public support like this. This is life saving. THANK YOU @andy.burnham come on, do what you say you will, listen to the people!!!! alibarrett97: After seven years of living with ME, and 4.5 years of being bedbound due to the disease, this is the most amazing thing I have seen. Thank you so much to each and every person who has signed this letter. Many of you have been inspirations to me my whole life, now even more so. Beth, thank you for giving us hope. [heart] kathischx: I couldn’t hold back my tears when I saw how many people are standing up for us, especially when I realized that among the signatories are other people living with ME/CFS who had to give up their dreams and careers. It breaks my heart knowing how much we’ve all lost, how many dreams have been taken away from us, and how many of us are still waiting for help. But seeing so many people raising their voices for us gives me hope. Hope that we are not forgotten. Hope that one day, all of us will finally get the help, treatment, and future we deserve. We have to keep speaking up and keep fighting. [heart] theslowlane.me: This is so powerful [heart] As someone who’s had M.E. for 16 years, I can’t put into words how much it means to me to see this post and all of those names. Thank you doesn’t seem enough. What a star you are @bethdobbin wheelingalong24: I am going to pretend that I am crying because I’m tired, not because seeing all these people caring about M.E. (the condition I’ve had for 16.5 years and I was scared for years to even name irl because of the misunderstandings people had of it) is beyond overwhelming. mike_atk_99: Thank you Beth. My 28 year old brother has been stuck in bed after a massive crash with his ME since March. Ironically he lives in Culcheth in Warrington, which is where PM Andy Burnham is from. He’s had ME for five years and your support has cast a massive spotlight on a horribly neglected condition. I hope one day he’ll be able to go downstairs again and enjoy a sit down in the back garden. robinrory_ld: I have never seen so many people without M.E. supporting us so openly. I finally have some hope we might be listened to. eik8: Thanks Beth, I hope this matters. That they listen to all these famous people. I get tears in my eyes reading this. /Mum to a girl that lost 8 years of her life so far [crying face] Jess Sylvie: Wow [clapping hands] Think it’s the 1st time I see healthy people (aside from loved ones) taking a stand to help. The future will tell what this brings, but 360 healthy (and well known) people saying “act now against ME” is an achievement in itself. Thank you so much Beth [blue heart] mirrie_creates: [clapping hands] Thank you. It’s so moving to see so many supportive voices. I’ve had M.E. for 25 years and have been bedridden for 16 of those. I’ve felt so unheard and ignored. Thank you [praying hands] melmilesart: thanks for being our champion <3 silda_alen: This actually made me cry. This is what we need so much: solidarity, allies. Thank you so much Beth! Please take care! [black heart]](https://substackcdn.com/image/fetch/$s_!iPVV!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f0689cf-dd10-44dd-a773-dded61374a1e_1600x900.png "Pink background with 12 screenshotted comments. Caption: “Response to letter from 360 sports stars in support of Beth Dobbin’s campaign for increased ME research funding.” ThereForME logo. beingphoebee: This has made me cry, never in my 10 years of illness have I seen any kind of public support like this. This is life saving. THANK YOU @andy.burnham come on, do what you say you will, listen to the people!!!! alibarrett97: After seven years of living with ME, and 4.5 years of being bedbound due to the disease, this is the most amazing thing I have seen. Thank you so much to each and every person who has signed this letter. Many of you have been inspirations to me my whole life, now even more so. Beth, thank you for giving us hope. [heart] kathischx: I couldn’t hold back my tears when I saw how many people are standing up for us, especially when I realized that among the signatories are other people living with ME/CFS who had to give up their dreams and careers. It breaks my heart knowing how much we’ve all lost, how many dreams have been taken away from us, and how many of us are still waiting for help. But seeing so many people raising their voices for us gives me hope. Hope that we are not forgotten. Hope that one day, all of us will finally get the help, treatment, and future we deserve. We have to keep speaking up and keep fighting. [heart] theslowlane.me: This is so powerful [heart] As someone who’s had M.E. for 16 years, I can’t put into words how much it means to me to see this post and all of those names. Thank you doesn’t seem enough. What a star you are @bethdobbin wheelingalong24: I am going to pretend that I am crying because I’m tired, not because seeing all these people caring about M.E. (the condition I’ve had for 16.5 years and I was scared for years to even name irl because of the misunderstandings people had of it) is beyond overwhelming. mike_atk_99: Thank you Beth. My 28 year old brother has been stuck in bed after a massive crash with his ME since March. Ironically he lives in Culcheth in Warrington, which is where PM Andy Burnham is from. He’s had ME for five years and your support has cast a massive spotlight on a horribly neglected condition. I hope one day he’ll be able to go downstairs again and enjoy a sit down in the back garden. robinrory_ld: I have never seen so many people without M.E. supporting us so openly. I finally have some hope we might be listened to. eik8: Thanks Beth, I hope this matters. That they listen to all these famous people. I get tears in my eyes reading this. /Mum to a girl that lost 8 years of her life so far [crying face] Jess Sylvie: Wow [clapping hands] Think it’s the 1st time I see healthy people (aside from loved ones) taking a stand to help. The future will tell what this brings, but 360 healthy (and well known) people saying “act now against ME” is an achievement in itself. Thank you so much Beth [blue heart] mirrie_creates: [clapping hands] Thank you. It’s so moving to see so many supportive voices. I’ve had M.E. for 25 years and have been bedridden for 16 of those. I’ve felt so unheard and ignored. Thank you [praying hands] melmilesart: thanks for being our champion <3 silda_alen: This actually made me cry. This is what we need so much: solidarity, allies. Thank you so much Beth! Please take care! [black heart]")
Beth responded:
“I’ve been taken aback and extremely touched by how many of them - and so many others in the sports world - have jumped at the chance to help by signing this letter. It means so much to me. I hope that, with all of them behind me, Andy Burnham is listening and will commit to doing what’s needed to deliver real change for a community that has been neglected for so long.”
And our co-founder Karen Hargrave commented:
“Beth’s advocacy has been extraordinary, and today’s letter, with the incredible support behind it, will mean so much to so many people with ME across the UK.
Successive governments have failed people with ME, and we hope Andy Burnham’s government will finally change that. The Prime Minister can start by meeting Beth and closing the £15 million funding gap for Sequence ME & Long Covid, a vital first step towards putting ME research funding on an equal footing with other diseases.”
We’ve been blown away by Beth’s extraordinary advocacy and sincerely hope Andy is listening! We await a response.
Patients know more about ME than their doctors
A new research article argues that people with ME often understand the medical aspects of their illness better than their doctors. In Patient’s knowledge, doctor’s ignorance: The production of knowledge about myalgic encephalomyelitis, author Chloé de Canson writes that medical education does not do its job with regards to ME, referencing a 2022 study of medical students, 88% of whom said they had not been taught about ME.
As a result, De Canson writes, people with ME have had to create their own systems to produce and share scientific knowledge about their condition, becoming ‘lay experts’. These systems are often more effective than those within scientific and medical institutions. De Canson’s argument reflects our own direct experiences and so many stories we’ve heard from people with ME and their carers. Many read and share news, studies, and scientific analysis - and many find themselves having to educate their clinicians.
Overall, we think it’s a superb article. Although many of its main points will be all too familiar to people with ME, we hope it will be an illuminating read for those in the scientific and medical professions.
Talking of patient-led knowledge systems, Liam Rosen, an American former CEO with severe ME, recently shared some impressive advocacy projects. These include:
The United Nations of Long Covid / ME, a directory of patient communities across the world
medoctors.org a global directory of ME doctors
a free-to-use photo gallery of very severe patients, created together with @inasamuel_ and @nebulow. It’s intended for use by journalists, and advocates, and submissions are welcome
an interactive prediction model for when ME may be cured.
It’s unacceptable that people as ill as Beth and Liam are having to put so much effort into informing others about their illness. While we hope they put their health first, we commend their incredible efforts.
It’s also good to remember that, although science, medicine and the media have often failed people with ME, we have a growing number of allies within them. These people are helping to slowly build systems for creating and sharing accurate knowledge, and challenging stigma.
Where are we with the Delivery Plan for ME?
Chair of the APPG on ME Tessa Munt MP shared her thoughts on Bluesky in response to a letter from James Frith, Parliamentary Under-Secretary of State in the Department of Health and Social Care, giving update on the progress of the Final Delivery Plan.
We share Tessa’s concerns, namely the continuing lack of urgency and clarity on NHS care for people with very severe ME, and the update’s focus on delivery of activities rather than evaluating outcomes for people with ME.
Activities only matter if they create meaningful change for people with ME. We’re yet to see this happen, and we won’t accept anything less.
ThereForME Facebook birthday fundraisers
You can now choose ThereForME for birthday fundraisers on Facebook. Facebook typically sends a notification two weeks before your birthday offering to help you set up a fundraiser. To start one yourself, click the menu icon in the top right corner of your Facebook homepage, look at the list under ‘Create’, and you should see the fundraiser option at the bottom.
A big thank you (and happy birthday!) to Anna Wood, who organised a Facebook fundraiser for her birthday and raised over £140 for ThereForME.
If you’re thinking of fundraising for us, we’d love to hear from you! You can contact us on hello@thereforme.org.uk.
More to explore
Latest research on ME: A mini ME research conference takes place on Saturday 7 November 2-4.30 pm, organised by Oxfordshire Myalgic Encephalomyelitis Group for Action (OMEGA) and Professor Karl Morten.
Professor Morten and his colleagues will share their latest research, including a cryotherapy trial and studies on the role of the immune system, blood-brain barrier, and more.
It’s free to attend and can be accessed online via Microsoft Teams - you just need to reserve a spot through the link.
Long Covid & GLP-1 drugs: On October 21st, ThereForME ambassador Dr Binita Kane hosted a webinar on Long Covid and GLP-1 drugs, such as Mounjaro and Ozempic, with researcher Romina Foster-Bonds. It ends with a Q&A with Oonagh Cousins. You can watch the recording here.
George Monbiot: Watch David Tuller’s interview with George Monbiot on why he wrote his recent Guardian article about ME:
That’s all for now. We’ll see you next month. Until then, follow us on socials to stay updated.
Please correct the mis section piece on junior docs. It currently says “ 88% of doctors say they have had education on ME . Should say NOT HAD ! Warm wishes Mary