Life stolen by Myalgic Encephalomyelitis. Waiting to be rescued by science. Science waiting to be funded by governments. #MECFS
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ALT rial By Error: Some Recent Observations from Alem Matthees Leave a Comment / By David Tuller / 30 October 2026 By David Tuller, DrPH In one of past year’s more amazing developments in our domain of interest, Alem Matthees has been actively communicating again. On December 10, 2025, I received my first e-mail from him in almost ten years. He has also been expressing himself publicly with multiple posts on Blue Sky. Quick background: Alem Matthees managed to “liberate” the key raw data from the fraudulent PACE trial by pursuing a Freedom of Information request against Queen Mary University of London, the lead sponsor. In 2016, a tribunal ordered the university to release the data. They revealed how pathetic the trial’s reported results would have been had the investigators not dramatically weakened their main outcome measures. (Alem and I were both among the co-authors of the paper that rebutted the PACE trial findings by analyzing the released data.) After all the effort Alem invest
ALT Screenshot of a BBC Sport article headlined “Olympian Dobbin writes to Prime Minister over ME funding.” The article features a video interview with British Olympic sprinter Beth Dobbin, who developed severe ME following Covid-19 and glandular fever infections. The video thumbnail shows Beth seated indoors, wearing a pale blue sweatshirt. A caption beneath the video quotes Beth: “It feels like you're days away from death.”
ALT Image of an open letter from Olympic sprinter Beth Dobbin OLY to Prime Minister Andy Burnham, calling for urgent action on severe ME. Beth describes going from training five hours a day for the Tokyo Olympics to being bedbound for 22 hours a day following Covid-19 and glandular fever infections. She highlights decades of medical neglect, psychologisation, inadequate biomedical research funding and the absence of specialist NHS provision for severe ME patients. She also argues that investing in biomedical research could reduce long-term disability and welfare costs, and urges the government to fund research into ME so patients have a chance to regain their health. The letter closes: “From a fellow Northerner, Beth Dobbin OLY.”
ALT Emerge Australia graphic for POTS Awareness Day, 25 October 2026, promoting a new resource. It features a patient decision aid titled “Orthostatic Intolerance: Should I be tested?” for shared decision making, supporting people with ME/CFS, long COVID and their health professionals.
ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"
ALT NY TIMES Long Covid as Russian Roulette Doctors tend to be more concerned about the chance that someone will develop long Covid from repeated infections than they are that a person will get very sick in the acute phase of the illness. Covid can cause long-term damage to nearly every part of the body and repeated cases can compound those harms. A number of studies have shown that each time someone contracts Covid introduces an opportunity to develop long-term symptoms. Researchers often compare it to Russian roulette: Any infection could be the one that leads to long Covid. “Every time there’s a wave, there’s another wave that’s going to follow with patients developing new onset long Covid,” said Akiko Iwasaki, an immunologist at Yale University.