Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.
Scotland’s only specialist ME nurse, Keith Anderson, sadly died in 2023. Since then there have been no specialist ME doctors or nurses in Scotland, and services have been described as “at rock bottom”.
meassociation.org.uk/2023/11/a-sa...
www.bbc.co.uk/news/uk-scot...
Full video: #MECFS patient Emma Shorter, her mother Janet Sylvester, and Professor Chris Ponting giving evidence to the Scottish Parliament’s Public Petitions Committee in 2018
youtu.be/wDayJXxZSQE?...
Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018
“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”
1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for
ME/CFS into work on other diseases.
The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.
Correction it’s Nicky Proctor.
Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.
BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins)
youtu.be/Du4devaRH5w?...
Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.
Correction: The blog I cited was written by Steven Lubet and published on David Tuller’s Virology Blog (not written by David Tuller).
Full video (5 mins)
Will I ever get better? Dutch public broadcaster video on #LongCOVID (English automatic subtitles)
youtu.be/3HXnQxC7BxY
Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.
Link to the talk Chris Ponting Hope4MEFibroNI Collaboration for Change, Newry 2026
youtu.be/KHxzn3VFevw?...
Find out more about the study:
mecfsscience.org/decodeme-the...
Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”.
“We’ve had letters from GPs saying we have changed their minds”
Clip from Hope 4 ME & Fibro NI Collaboration
Unfortunately, not
Here you go www.youtube.com/watch?v=KHxz...
Link to the talk Chris Ponting Hope4MEFibroNI Collaboration for Change, Newry 2026
youtu.be/KHxzn3VFevw?...
Linked to the paper: Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity
link.springer.com/article/10.1...
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
Full talk: Dr William Weir - Hope4MEFibroNI - Collaboration for Change, Newry 2026
youtu.be/EjF5Unc3ZIQ?...
Dr Weir said Wessely argued “ME is simply a belief” at the 9th Eliot Slater Memorial Lecture in 1994. Link to a copy of Wessely’s lecture notes obtained by Margaret Williams
www.margaretwilliams.me/2003/prof-we...
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder.
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
There is no evidence in the parliamentary record that MPs accused Sharpe or his colleagues of being fraudulent during any of the debates.
Jan 2019
hansard.parliament.uk/commons/2019...
June 2018
hansard.parliament.uk/Commons/2018...
Feb 2018
hansard.parliament.uk/commons/2018...
Screenshot of tweet
In 2019, Sharpe claimed that one or two MPs used “parliamentary privilege to allege that we’re fraudulent scientists” during debates about the PACE trial.
www.theguardian.com/society/2019...
Screenshot of tweet
Screenshot of tweet
Screenshot of article
According to David Tuller, Prof. Michael Sharpe’s “unbecoming” comment to Carol Monaghan MP in 2018 was about “misrepresenting science in parliament”. David also reported there was nothing defamatory said in the debate.
trialbyerror.org/2018/06/25/t...
#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.
Reading the new OECD report on Long COVID as a clinician is a sobering experience. According to the model, most cases are mild, the average duration is two years, and prevalence will fall to around 1% in the coming decade. In daily practice, this does not reflect what many of us see. A substantial subgroup of patients remains significantly impaired well beyond the first months. Many fulfil criteria of ME/CFS, with post-exertional malaise, cognitive dysfunction and limited recovery over time. We need models that reflect heterogeneity, not just central estimates. Otherwise, we risk designing systems that work on paper, but fail the patients who need them most.
Reading the new OECD report on Long COVID as a clinician is a sobering experience.
www.oecd.org/content/dam/...
New research: first comprehensive estimate of the economic burden of long Covid across EU and OECD countries.
Long Covid is projected to cost OECD economies up to $135bn a year and the damage is expected to last at least a decade.
archive.ph/2026.04.08-0...
