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I like what you did there. It is also interesting to think about the role of the IAG. If part of the role of the members of that group is to advise the review process, it is hard to understand how they can effectively perform that role if they feel gagged, unable to report to and consult with...

@Jaybee, for those of us not on twitter, how does this work? Is it a webinar type-thing, or just posting on twitter? Do you have to be signed up to twitter to participate?

In happier news, many thanks to Physios for ME for their support of the open letter and for their advocacy efforts. :emoji_bouquet: (added to the organisation list above)

The forum has had a reply from BACME, the British Association of Clinicians in ME: As far as I know, Cochrane has never said publicly that the review had been paused. Or, for that matter, restarted. So, if BACME is well informed, it seems that a review process that was aiming to be a model of...

Does anyone else find the choice of the word 'trait' rather odd here? * a distinguishing quality or characteristic, typically one belonging to a person. Similar: characteristic, attribute, feature, quality, essential quality, property, distinction, idiosyncrasy, peculiarity, quirk, foible...

I thought when I read the article that it didn't accurately represent the interview. But there was the odd questionable bit and some inconsistencies in the interview answers.

Could the issues not just be explained by a combination of ME/CFS (whatever the pathology of that is) and a lack of regular practice? (i.e. speaking with people, especially speaking with people you aren't familiar with and about topics that aren't every day ones). A family member had a vitamin...

Here's an up-to-date list of organisations who have supported the letter. It would be great to get some more. Many organisations can't make a decision until their next board meeting, so we may not hear for a month or more.

Yes, the idea of this isn't terrible. But even the gender ratio of participants points to a problem - 87.4% female. While females may perhaps be more likely to have a chronic health condition, I think that ratio suggests that males are a lot less likely to sign up for 'self-compassion...

The people at ANZMES mean well but the organisation has problems. That last video demonstrates some of them. It's old news, but what was Auckland ME is now ME Support and they clearly have big ambitions, including extending their influence beyond Auckland. They come across as professional...

There's just been an interview of Professor Lisa Sanders, of Diagnosis fame, who is now running the Yale Long Covid Clinic. Sunday 17 September Radio New Zealand - If I remember, I'll add a better link when it is up...

I assume the improved cost effectiveness is due to the lower number of sessions: In which case, the logical thing to do would be to see what happens if the number of sessions is reduced further... and further. Actually I can imagine this sort of treatment (the CBT and/or ADepT) being useful...

I'm curious why you are sceptical about the inclusion of Long Covid in the scope of an ME/CFS charity. For me, including it is warranted on both moral and self-preservation grounds. If Long Covid is excluded, then it's hard to see how an ME/CFS charity could survive in the medium term, as most...

Sounds fantastic, what a great resource

Singapore National Centre for Infectious Diseases, reproducing content from two Straits Times 2022 articles Hit by Long Covid Gives a list of clinics providing services. The information about Long Covid is a mix of good advice, graded exercise therapy and commercial exploitation of the...

On baricitinib for Long Covid:

Those references that are given to support the claim that 'excessive infiltration and accumulation of profibrotic monocyte derived macrophages have been reported in ..PASC'? 12. Phetsouphanh C, Darley DR, Wilson DB, Howe A, Munier CML, Patel SK, et al. Immunological dysfunction persists for 8...

What I like about this idea in terms of it being useful for thinking about ME/CFS is that it is the process of healing following infection-induced injury that causes the harm. From the discussion: The authors mention two drugs that they think could stop the pathological process they have set...

I haven't looked at the figures, but my impression is that these researchers did a lot of work, checking their assumptions in several ways. It seems like good work that should move the understanding of post-infectious lung fibrosis forward. I think it might possibly have some relevance to...

Analysis of gene expression seemed to point to highly active inflammatory responses in the areas of dysfunctional repair. There were a whole range of immune cells active in the areas of dysfunctional repair, including macrophages. A CD8+ T cell-macrophage axis induces IL-1β release to arrest...