Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.

Joined September 2017
My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer👇
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Highlights from a BBC report on two ME patients who took NICE to court over its #MECFS guideline in 2007. Believed to be the first case of its kind, the challenge led to a judicial review but was unsuccessful. #MECFS
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Full segment BBC Breakfast (5 mins) Legal challenge to the 2007 NICE #MECFS guideline, featuring Dr Charles Shepherd, Dr Sarah Jarvis and a patient whose condition deteriorated following Graded Exercise Therapy. youtu.be/0uUxL9My1bc?si=9uVE…
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Links: Invest in ME – Comment on the case investinme.org/IIME%20Campai…⁠ MEpedia me-pedia.org/wiki/NICE_guide…⁠ High Court judgment – 2009 bailii.org/ew/cases/EWHC/Adm…⁠
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Short #MECFS explainer for children from German TV. Includes an explanation of post-exertional malaise (PEM), the worsening of symptoms after activity. Note: People can recover. Older studies suggest around 5–10% of adults make a full recovery.
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From the ME Association website: #MECFS often becomes a chronic and very disabling illness with complete and sustained recovery only occurring in a small minority of cases. Children and young people generally do ‘significantly better’.
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Source: This is ME/CFS! Few illnesses restrict quality of life as much as #MECFS. This video explains what triggers this disease and how it manifests. — German children’s news programme logo! (ZDF). logo.de/mecfs-einfach-erklae…
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“It’s a fluctuating illness, and you can’t just take a snapshot of it and think that’s what the person’s like all the time.” Jane Colby explains why #MECFS can be so easily misunderstood on the BBC Politics Show in 2009.
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BBC Politics Show report on #MECFS and disability benefits, 10 May 2009 (7 mins), featuring student Sam Brown and Jane Colby from the Tymes Trust. youtu.be/uBBFpawh-WM
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BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it. Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
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“You go out and you maybe do a lot more than what you should. And that’s when the next few days it really hits you and it wipes you out completely.” Farmer Andrew Jackson describing post-exertional malaise, the hallmark symptom of #MECFS
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Post-exertional malaise is a delayed and prolonged worsening of symptoms following even minimal activity. This can sometimes lead to a relapse and a long term reduction in a person’s energy limits. Definition from the NICE guideline for #MECFS
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Full segment: ITV Border News report farmer Andrew Jackson and the impact of #ME on his family, and his wife Yvette’s appointment to a national steering group. 22 October 2026 (4 mins) #MECFS youtu.be/eoabHhjk0ok
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Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - and to make things easier, we have a template for you.👇
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BBC Coverage of @BethDobbin letter to @andyburnham ! Thank you @KatieFalkingham The BBC have asked @10DowningStreet for comment. Note: Commonwealth diver Archie Goodburn received a swift & very positive response for brain cancer: 👉 National lead 👉 Immediate expert review 👉 A national action plan 👉 Faster regulatory reform 👉 National conference 👉 Improved clinical trial access Can ME & Long Covid diseases that predominantly affect women & NO NHS care for the severe expect a response that meets the need?! 🖇️👇
💌 Excellent letter by Beth Dobbin to @andyburnham Her post received 1.2 million views on IG! Andy we urgently need: 1) NHS commissioned care for severe ME 2) Select committee inquiry 3) National clinical lead/Tsar 4) Research funding + more
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