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I am sure I’m not the first Dr who has stumbled upon the scandal of MECFS - due to developing it themselves. I’m sure I’m not the first to learn from others in the community about the history of the condition. In sure I’m not the first to use their limited energy to hunt 1/

#MECFSAwarenessMonth – Day 12 2011: Ian Gibson MP highlights a high-level block on biomedical #MECFS research. A study also reveals nurses’ frustration delivering psychological treatments — one supervisor reported a feeling of, “the bastards don’t want to get better.”

Glenys Rumsey, and ANZMES President Fiona Charlton on Breakfast today (9 mins), talking about what is needed for people like her daughter Tammy who has #MECFS in New Zealand. youtu.be/G7atNubdhL8?si…

#MECFSAwarenessMonth – Day 13 2015: A landmark report in the US reviews 9,000+ studies and concludes ME/CFS is a “serious, chronic, complex” disease — not psychiatric. It identifies post-exertional malaise as a key diagnostic feature and helps shift understanding.

#MECFSAwarenessMonth – Day 14: 2015: Long-term PACE trial results show no long term benefit from CBT or GET compared to standard medical care. Yet authors still claimed effectiveness. The Science Media Centre backed the findings, and media reported success despite criticism.

#MEAwarenessMonth – Day 15 2016: ME patient Alem Mathees wins a court order forcing Queen Mary Uni to release the PACE data. The uni’s harassment claims are found to be “grossly exaggerated.” The 2 year ordeal contributed to a severe relapse, and Alem remains bed bound today.

#MECFSAwarenessMonth – Day 16 May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.

Excellent response to Miller et al.'s The BMJ commissioned "opinion" piece from Dr Katharine Cheston. 👏👏👏 bmj.com/content/389/bm…

#MECFSAwarenessMonth – Day 17 2017: The CDC drops its recommendation for Graded Exercise Therapy and CBT — a major step away from the psychological model. An analysis of multiple treatment surveys finds over 50% of #MECFS patients report Graded Exercise Therapy made them worse.

"Ignorance about post-exertional malaise and continued conflation of #ME/CFS with chronic fatigue harms patients and stymies research progress" - Dom's brilliant rapid response to the Miller, Garner + opinion piece in The BMJ #pwME bmj.com/content/389/bm…

From Instagram Paul Garner speaking today at the SIRPA conference NICE

#MECFSAwarenessMonth – Day 18 2018: MP Carol Monaghan leads the first of 3 UK Parliament debates on ME, including one about the PACE trial. She highlights patient harm and flawed research, calling it “one of the biggest medical scandals of the 21st century.”

#pwME please help me with a brief anon survey. DWP’s response to my FOI request 👇🏽implied that v few #pwME access PIP DLA and many will lose this with the cuts. To act, I’d first like to understand what’s up… focussing on severe ME. Thank you! forms.gle/tqnzRUAki1nUiN…

'Six new board members appointed to Advisory Council on National Records and Archives' 'Sir Simon Wessely, regius chair of psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, is one of six new ACNRA board members'. artsprofessional.co.uk/magazine/faces…

Alistair Miller was Action for ME’s Medical Advisor 2010-2015 He promoted GET and CBT as a cure and was clinical lead for one of the most notoriously poor CFS clinics in the country. Much patient blaming. forums.phoenixrising.me/threads/psychi… web.archive.org/web/2022102208…