Full video, David Tuller interviews Adam Lowe about the NICE guideline
youtu.be/yAe4k8KG-ng?...
NICE committee member Adam Lowe says one person left for personal reasons. It’s not clear why the other two left, but Adam suggests it could be due to external pressure. For example, one member was asked to account for a patient refusing GET because of the draft guideline.
Also worth noting, the claim the NICE guideline was “controversial” because committee members resigned is misleading, because the committee agreed and signed off the whole guideline before the anyone resigned. See the round table minutes.
www.nice.org.uk/guidance/ng2...
The Royal Australian College of GPs double down defending Graded Exercise.
Responding to criticism of the 2024 HANDI guidance, they dismissed harm as biased surveys and attempted to discredit the UK NICE guideline.
Good summary from @davetuller1.bsky.social #MECFS
virology.ws/2026/03/09/t...
Link to the original program.
Broadcast 19 Feb 2026 | ORF 2
on.orf.at/video/143119...
TW: assisted suicide
30 min interview with Samuel’s mother and doctor.
Samuel developed #MECFS after a Covid infection and chose assisted suicide. Before his death he asked for his story to be used to raise awareness.
English Subs (edited with ChatGPT)
youtu.be/_w0v7he88Uo?...
Just giving page
www.justgiving.com/page/robandf...
Full video (8 mins)
youtu.be/ugfaTZS3Xqs?...
#MECFS “is a real hidden illness and it can shrink lives”
Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association.
They are taking on the challenge for their daughter, who lives with #MECFS
Tessa Munt MP’s new blog highlights the case for change for people with #MECFS. Numbers have risen with COVID and #MECFS is now thought to cost the UK around £22 billion a year. £50M has been ring-fenced for MND research, so why not ME?
www.thereforme.uk/p/the-case-f...
Full video (3 mins): BBC Look North report 6 years on from Covid-19. BBC reporter Cathy Minton says the story is personal as her husband Tom has #LongCovid. Also featuring @franhaddock.bsky.social, who lives with long Covid and and ME/CFS.
youtu.be/H_HpW0P8R0o?...
6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.
Full video (3 mins): BBC South report on an ME/CFS Alliance event on the future of research. Chris Ponting discusses findings from DecodeME, while patients describe living with the condition and their frustration at the lack of further government funding.
youtu.be/mUetU91KW98?...
Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.
Sharon’s official title is Parliamentary Under-Secretary of State in the Department of Health and Social Care.
She reports to Health Secretary Wes Streeting and her portfolio covers Public Health and Prevention.
List of responsibilities
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.
Full video: Dr Binita Kane on her journey from NHS respiratory consultant to setting up an ME and Long Covid clinic (52 mins).
youtu.be/pk00btt7CVs?...
Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.
The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
Update:
Savannah self-discharged again & has been admitted to Royal Devon & Exeter (4hrs from London) which has a formal Severe ME pathway following the death of Maeve Boothby O’Neill.
Pain relief has been increased and care is described as kind and compassionate.
www.gofundme.com/f/severemerg...
Clip from BBC Radio Sheffield :
@franhaddock.bsky.social calls in to speak to Paulette Edwards about #LongCovid, #MECFS, post-exertional malaise, and why being “deconditioned” is not the cause of her condition. (10 mins) Aired yesterday.
youtu.be/uNbKpnxX3jU?...
Clip 3 BBC Politics North:
Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.
Clip 2 from BBC Politics North:
Dr Margaret O’Hara of Long Covid Support warns the condition is being “swept under the carpet” as clinics in the North East are set to close. Long Covid expert Dr Rae Duncan says Covid is not over and cases of long Covid are rising.
Thanks That wasn’t my intention, but I can see how it can be read that way. Appreciate it could’ve been worded more clearly.
BBC Article
Former GP with long Covid says people with the condition are being forgotten. MP Luke Akehurst described the closure of dedicated clinics as “shocking”, while long Covid expert Dr Rae Duncan warned: “Covid isn’t over.”
www.bbc.co.uk/news/article...
Full video (8 mins)
BBC Politics North - Long Covid patients being forgotten as the last NHS clinic is set to close in the North East and Cumbria. Features former GP Susannah Thompson, Dr Margaret O’Hara, Dr Rae Duncan, alongside a number of MPs.
youtu.be/ay_2M9fI3z8?...
Clip from BBC Politics North:
A GP describes how #LongCovid ended her career after she needed a wheelchair within a year of contracting the virus.
She says patients are being forgotten by politicians and the NHS as the last dedicated clinic in the area prepares to close.
Full video (120 mins)
1993 #MECFS awareness video including the documentary Living Hell.
youtu.be/SyB49g_l9Sg?...
Intro to a 1993 documentary on #MECFS
When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.
Link to the original broadcast
Hello Lower Saxony | February 22, 2026
www.ardmediathek.de/video/hallo-...
