Is the role of the mesothelial cells lining the subarachnoid space and mediating the transfer of inflamatory molecules through the csf being looked at IYU?

Ten outstanding questions in Neuroinflammation and #LongCovid. Read the preprint here: www.preprints.org/manuscript/2... and check #UnitedtoFight videos from last year here www.youtube.com/@UniteToFigh...

💯 We need to keep sharing our experiences and observations as we see fit regardless of what others might choose to criticize.

You only fall into the crab bucket when you let them drag you in.

Calling this a policy is a little too generous IMO.

It's dog whistling.

It's difficult to understand someones motivations for doing that, but was it perhaps coming from the belief in the treatment he was offering, or was it more likely to be an external motivation?

i hope he came along to watch. I sort of feel a bit for genuine researchers/clinicians who were lead astray by the PACE trial. I think it is important that the record is set straight across the board.

Thank you for the clarification Doc, anecdotally peoples experiences with it have been very variable and I know it must be prescribed carefully to patients.

Personally it really helped with my brain fog and reduced how much I felt like sleeping during the day but I was already improving prior.

Hi Becky,

I've personally had some success with this medication for my long covid symptoms recently. It is one that @davidjoffe64.bsky.social mentioned in a space of yours and jelly.

I don't think it is a curative treatment but in some instances seems to be a good supportive one.

This is the one video I wish everyone could see to understand ME/CFS.

Honestly felt like it took me months to learn all of this info myself in bits and pieces.

Could you please write a book?

😢

Fairly costly option, but for occasional use I would recommend a battery powered chainsaw from a reputable tool brand like makita or milwaukee. They also make other garden power equipment which are better value if bought as a set.

Please get someone with ALOT of experience to teach you though.

Have there been any studies/clinical experiences attempting to identify persistent viral infections and employ "matched" monoclonal antibobies to compare this approach to treating with a "more broad spectrum monoclonal"?

I have LC like symptoms. One day there was some concern I had a blood clot in my leg. Mildly elevated D-Dimer. I was given a shot of clexane. I felt a great deal better generally, around the 6 hours mark.

People around me noticed this. I wondered, maybe it helped with the microclots....? 💙

The other answer I give is that I often visit my grandmother and that I am concerned about picking something up that would make her ill (which is true).

Although it isn't the only reason, it seems to be the most acceptable one to society.

If I believes someone cares about me or is genuinely interested why I tell them about long covid, but most of the time their problem isn't really anything to do with you as an individual, it's a set of perspectives and concerns that come from somewhere else entirely.

Hence my lack of seriousness.

I tell them I'm on my way to do some graffiti and ask them if they want to come along. "ask a stupid question get a stupid answer". don't know if my suggestion is a very helpful one sorry but gets a laugh out of people so it works for me!