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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 an judicial review but was unsuccessful.

The 2007 guidelines recommended graded exercise therapy (GET) and CBT. However, in 2021, NICE withdrew its recommendation for GET and downgraded CBT due to the poor quality of the research evidence and ‘considerable’ reports of patient harm.

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.

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). www.logo.de/mecfs-einfac...

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.

“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.

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

“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

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

TW: Assisted suicide “She did not want to die. She wanted to live. Just not like this.” Report on the devastating impact of severe #MECFS and how more and more people with severe ME are choosing assisted suicide in Germany.

People with #MECFS are 6.85 times more likely to die by suicide. A 2026 study examined memorials for people with #MECFS and noted contributing factors such as hopelessness, pain, social isolation, loss of independence, and dismissal or poor treatment by healthcare providers.

“I was a bit worried for her. I was thinking, how is she going to feel after that?” Dr Amir Khan talking about Miranda Hart’s appearance on Celebrity Traitors and how even small amounts of exertion can make her symptoms worse.

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

“This is a disease that's had a very controversial medical history… this put a very serious delay on making any progress with research into the illness.” Dr Charles Shepherd on #MECFS, the lack of treatments and the 5–10% chance of full recovery. Highlights BBC Radio Sheffield.

“To meet someone and just play and laugh, it’s all us humans need, you know? I’ve had times in my life when I haven’t had that through illness.” Highlights Miranda Hart reflecting on her experience of chronic illness on Celebrity Traitors. #MECFS

“It’s life decimating. I can’t even put into words. I feel like I’ve lost everything.” Beth Dobbin and her family describe the devastating impact of #ME, which has left the Olympic sprinter bedbound 22 and a half hours a day. #MECFS

“Just having a conversation… can impact you afterwards. When I say impact you, you feel like you're dying basically.” Former Olympic sprinter Beth Dobbin describing post-exertional malaise the hallmark symptom of #ME.

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

“These are some of the sickest patients I’ve ever come across in my life.” Dr @binitakane.bsky.social talking about #MECFS and the lack of research, specialists and services on yesterday’s BBC Radio 5 Live.

“I’ve gone from training five hours a day to being bedbound 22 and a half hours a day.” Former GB sprinter Beth Dobbin describes how #ME has changed her life. #MECFS

BBC article and full video (3 mins) www.bbc.co.uk/sport/athlet...

An early BBC report on long-term symptoms following Covid-19, from June 2020. Dr Charles Shepherd discusses the emergence of a post-Covid syndrome and its similarities to the post-viral fatigue syndromes that can lead to #MECFS. #LongCovid

TW: Suicide “So many people out there who are suffering, they choose to disappear forever… no one’s really speaking out for them.” Emma Donohoe talks about losing contact with members of the #MECFS community and finding out they had died by suicide.

References: Mortality www.thelancet.com/journals/lan... Analysis of memorial entries journals.plos.org/plosone/arti... The Memorial www.ncf-net.org/memorial Prevention of Future Deaths Report www.judiciary.uk/prevention-o...

TW: Suicide “So many people out there who are suffering, they choose to disappear forever… no one’s really speaking out for them.” Emma Donohoe talks about losing contact with members of the #MECFS community and finding out they had died by suicide.

People with #MECFS are 6.85 times more likely to die by suicide. A 2026 study examined memorials for people with #MECFS and noted contributing factors such as hopelessness, pain, social isolation, loss of independence, and dismissal or poor treatment by healthcare providers.

“The indifference is just unbelievable. It’s just incredible how people have shut their minds to the terrible suffering that’s going on.” George Monbiot on what needs to change for people with #MECFS, and the need for more advocates, journalists and politicians to speak up.

“The time in hospital was awful for her. She had a very severe crash and could not sit and because of that she was brought home lying down in an ambulance.” 9 year old Annabelle’s mum talking about her #MECFS which she developed following Covid. #LongCovid

A ‘crash’ is a delayed and prolonged worsening of symptoms following even minimal activity, known as post-exertional malaise (PEM), a hallmark feature of #MECFS. This can sometimes lead to a relapse and a long term reduction in a person’s energy limits. Image - NICE guideline

“I can’t even get dressed by myself anymore or press buttons or things like that.” 9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid

The worsening of symptoms after minimal activity is called Post-exertional malaise, and is a hallmark feature of #MECFS. In some cases it can lead to a relapse and a long term reduction in a person's energy limits. Definition from the NICE guideline NG206