Found Carmen Scheibenbogen’s talk interesting. About 50% her LC patients fit CCC for MECFS. Attaching screenshot of table of mechanisms...
(Full tweet in image) Amy Proal (I assume that the ‘we’ means Polybio) is helping Professor Pretorius with a plan to look at hyper coagulation in...
MEAssociation Facebook have a thread and a few interesting comments coming up. As with all ME avenues it may work for some and not others but fed...
https://www.resiapretorius.net/ Website of professor quoted above as planning an MECFS study. Collaborated with Beate Jaeger on H.E.L.P Apheresis.
@Adam pwme posted video clip of Dr Asad Khan BBC interview on Apheresis and microclots. (Apologies not a good day but I have some questions) Am...
Another brilliant video. These are so much appreciated especially with all the detailed references, evidence and transcripts. Thank you :thumbsup:
Very encouraging and I like how Phil humbly communicated this. I avoid most recovery stories. Interesting point about prioritising feeling...
As I have followed this thread I have not noticed many 'improvement' cases following the vaccine. The Healthrising poll suggests 23%, 184...
After initially thinking that I would wait for the vaccine or not have it due to risk of vaccine flare up I changed my mind. Anxiety over family...
@Simon M not necessarily existing registries or data but thinking specifically to the Decode ME study. 20000+ are about to receive a questionnaire...
Thoughts A life expectancy for ME in the mid 50's (3 studies?) many pwME onsets 1980's and earlier have died Time lag for diagnosis and...
I have little clue about immunology but here are some links to save time. InvestinME posted the Medium article of their FB page a couple of days...
In 2018 as records came online via Patient Access I found ‘CFS’ listed as minor symptom (past). I asked my GP to amend this. So important that...
With the poor understanding of immune effects with ME my view has been to avoid vaccinations. I don't see too many people. My healthy early 60's...
BBC video with Dr Shepherd saying LC and ME not the same. As per the above comments, how can he be so definite? Or was there some BBC editing? In...
Trazodone helped for 6 months then stopped. Even with a break there’s no effect now. Any thoughts?
Sleep score measured by a wearable HRV (I use App and phone camera) Hours of upright activity (can also be measured with a wearable) Cognitive...
Context P71 Draft “11 are not clearly defined. There is little pathological evidence of brain inflammation” Is there a study due out from...
Many US patients still face huge issues because the changes from 2017 haven’t filtered through. Compulsory Medical training is essential. Media...
After 6 months of Keto I experienced some benefit but not enough. I know children with epilepsy can tolerate this for quite some time and the...
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