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Posts copied from The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS...

https://www.omfcanada.ngo/study-of-thrombospondin-1/ Just adding for information. A cluster of pwME have elevated TSP 1, another reduced and another no change after provocation.

https://www.tlcsessions.net/episodes/episode-18-professor-resia-pretorius-microclots Podcast from The Long COVID Sessions Episode 18 with Professor Resia Pretorius. She interviews well and explains many things from the research in a way I could understand. Brief mention of MECFS and Amy...

In the video intro it is highlighted how heterogeneous LC is. The same issues we see with MECFS where there are ‘layers’ or comorbidities that give everyone a slightly unique experience. Dr Khan noting that the strongly dysautonomia subgroups seem less responsive. Around 50-60% are reportedly...

The video and the FB group say that Professor Pretorius is going to Germany this month and testing new patients before, during and after. Dr Khan and others (?) also going to measure anything measurable starting within next two weeks. There’s over 7000 on the waiting list mostly self funded so...

Update from Dr Asad Khan (AK) who is a respiratory consultant in Manchester and he fits the MECFS criteria. He is in Germany undergoing HELP apheresis. This YouTube channel is good and MECFS has featured a lot. Rough timeline for video: 0-4 mins problem of identifying LC drivers 4-7.15 AK...

Copied post Update from Dr Asad Khan (AK) who is a respiratory consultant in Manchester and he fits the MECFS criteria. He is in Germany undergoing HELP apheresis. This YouTube channel is good and MECFS has featured a lot. Rough timeline for video: 0-4 mins problem of identifying LC drivers...

https://clinmedjournals.org/articles/jmdt/journal-of-musculoskeletal-disorders-and-treatment-jmdt-7-090.pdf @Arnie Pye Heparin: a few blogs out there. The paper above has a table of treatments reviewed for MECFS. I’m not sure about the data such as time for remission etc (to my untrained...

Thread split from The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS ***************** https://www.nature.com/articles/s41380-021-01148-4 Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis? 2021

Dr CS from MEA states (above) that the mitochondrial function for AXA1125 will be tested with MRS and he was tested nearly 40 years ago in the same way. Article in Lancet 1984. (Abstract Below) https://www.sciencedirect.com/science/article/abs/pii/S0140673684918713

@Perrier MEAssociation post https://www.facebook.com/171411469583186/posts/4502171409840482/?d=n HELP Patient initiative https://www.facebook.com/groups/659008718403141/?ref=share

Did anything happen with Nurses For ME? Generally a good article in nursing times including quotes by Caroline Kingdon...

A Facebook group exists -Patient initiative Apheresis for long covid This group seems to be run by a successfully treated Long Hauler and has the purpose of sharing on the ground information from the clinic in Germany. Dr Asad Khan is a member of this group. They also use the Telegram Messenger...

Found Carmen Scheibenbogen’s talk interesting. About 50% her LC patients fit CCC for MECFS. Attaching screenshot of table of mechanisms identified plus next steps.

(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 MECFS and have submitted a grant. This was retweeted by Pretorius

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 up of waiting for a universal (without risk) treatment.

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 I posting a relevant/best thread? Is venous oxygen saturation testing he mentioned easy to do. Any ME studies use this measure? This is H.E.L.P...

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 better…he explains it well and as simple and as obvious as it sounds I haven’t really grasped that. We tend to measure improvement more by what we do...