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Sheffield ME & Fibro talk Caroline Dalton A short 12 minute video references this study from 6:51 with a view to revisiting it ( may need PEM samples on a bad day) Also refers to other studies- will attach title slide. Includes comments on PRIME NIHR applications near end. 5 groups...

Welsh debate feedback from MEResearch ME research note an interesting amendment to the motion. An extract from their summary: “However, Mr Price also asked for an amendment at the end of point 4 namely to “develop a strategic approach to research by supporting Wales to host one of the five...

LOCOME feedback webinar Action For ME posted this invitation today. Webinar on Monday November 24th at 3pm. Guessing this will follow the preprint publication. Text from website The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is...

Roadmap NIH transcript Michelle James and Vicky Wittemore discuss PET scan. Search document for “marrow” and it is discussed on page 10-11. Not much detail but they seem to think bone marrow and salivary glands are areas of interest.

Quickly reading through the thread and with reference to PET I think I remember in an earlier presentation (possibly in the MECFS roadmap series) by Michelle James that bone marrow showed signals. I forget the details. The healthy and MECFS weren’t well matched for BMI if i remember. Dr James...

Thank you @Joan Crawford for making an easier way to donate.

Article Oct 7th ME Research A quote: Notably, there is strong evidence for immune system involvement in ME/CFS, and although at present the exact role of Tregs in ME/CFS is unclear, a paper by Nuno Sepúlveda and colleagues, published in 2019, stated that: “Tregs show promise to be good...

What is happening with a US DecodeME cohort? Was that Lipkin and is his funding back on?

The blog entry is really helpful and understandable. I love the analogy of x and hidden treasure.

Thanks in advance to @Adam pwme!! One clip already out. Take care Adam

https://www.thepressawards.com/winners-2025 See “Campaign of the Year”

https://www.ninds.nih.gov/sites/default/files/2024-05/Report%20of%20the%20MECFS%20Research%20Roadmap%20Working%20Group%20of%20Council_508C.pdf Linking the NIH roadmap which could serve as a prompt. The video discussion that fed into this document started with a ‘what do we know’ outline for...

Amantadine is an NMDA receptor antagonist

Additional resource ideas Why Chronic Fatigue. (Full stop) can be problematic- a lot of mild ME patients do use this as a coping mechanism. A lot of people with CF label think that they have been diagnosed with ME. Also it is a symptom of many issues. Differential diagnoses eg low ferritin...

Just wanted to show appreciation to the #ThereForME team for the excellent advent calendar idea. Really encouraging to see so many allies have engaged with this behind the scenes. Quote from Substack: “We’ll be opening our advent calendar doors each morning at 9am on Instagram, Twitter/X...

Judging by my husband’s response, this video is right on target @Adam pwme (a few choice word's plus a “I don’t know how you cope” owtte) I think this hit home for him because statements were backed up with evidence onscreen. The long SW visual was scarily effective. The chronological order...

Thank you Adam. Brilliant.

I posted in 2022 about Liverpool Broadgreen MECfS service. Met my GP today and he has had a number of new ME patients and he has been informed by Liverpool that they are no longer taking patients out of area. There are no clinics taking patients from my health authority. Either Liverpool is...

Binita’s explanation I find useful as an interim, easy to use description for my family so I’ve sent them the clip. She speaks in a language they will grasp- I hope! I spend so much of my time living with the sense my family and friends think I am not trying despite desperately making every...

That was an outstanding interview by Sarah and Binita on BBC breakfast Tagging @Adam pwme