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Even as Cochrane falls to bits in some places, seemingly unable to effectively deal with complaints, the Larun et al review is still there causing problems. Cochrane Australia is based at Monash University. There's a contact in Austria - maybe someone active in the We&ME Foundation would have...

https://www.cochrane.org/about-us/our-global-community/geographic-groups Looks like there are contacts for a lot of countries including the UK.

I've been regularly sending similar emails to the Cochrane contact person for my country - e.g. petition updates and links to the petition. If you (the S4ME members) have the capacity to do so, you could find out who the Cochrane contact person for your country is, and contact them. At the...

Yes, me too. Thank you to Chris and Simon, and everyone who stands with us, even though it is not the easy road.

I've adjusted the thread's title.

Re ME/CFS is one group or multiple groups: I don't understand why people who are generally (and rightly) very skeptical of ME/CFS research findings don't apply the same skepticism to the 'twin peaks' incidence idea. The evidence for that idea is very thin.

Moderators have created a new thread: What needs to change to ensure better care for people with ME/CFS with feeding difficulties? for discussion about the policy and implementation environment that continues to influence management of feeding difficulties in people with ME/CFS. There will...

That's a useful summary. To some extent, we don't have to know for sure what went on in Maeve's case. If there is clinical guidance that is likely to be interpreted as making various forms of assisted nutrition off limits for people assessed by the treating clinicians as having 'functional...

Just on the 'trial report' prefix, a response from the moderation team: The trial report prefix is used for interventional studies, so, where a treatment has been trialled. It is fine to have no prefix, plenty of papers don't need a prefix. We understand that there is a grey area, where the...

Thanks for your replies @Jonathan Edwards and your ongoing work. Just as a side point on sectioning and capacity for decision making (sorry, taking the thread further off-topic): Practice varies, I don't think it is a big deal for some doctors. Having spent a lot of the last year sitting with...

But it's not just a perception of voluntary action, illusory or not. I over did it for a couple of weeks a few weeks ago, summoning the power to do things while knowing it would probably cost me. My face broke out in a rash of sores. I've had cold sores constantly on my lips, in just the last...

A subconscious learnt avoidance of unpleasant outcomes does not seem to be a likely explanation for what I experience. It doesn't explain the variability, how one day walking up the couple of steps in the back garden is easy and how another, the power is just not there. I have not had my...

That's a bit of a depressing read. It sort of gets some things right, but not quite. As you would expect from a resource for endocrinologists, there is a big emphasis on issues to do with cortisol and the HPA axis. It would be possible to address the many issues in this resource, but it...

That's really helpful information @horton6. I'm sorry that you are having to face such a big challenge.

Thanks to George Monbiot for the article and to those who continue to help inform him. I have already used the article in advocacy. I'm coming late to today's discussion and have only read the posts quickly. I'm sorry if I have misunderstood the arguments made, I'm left a bit confused. I feel...

It has been suggested that the tricyclic clomipramine is useful for treating hyperacusis. Has anyone else noticed tricyclics affecting sensitivity to sound (or other sensitivities)? Has anyone experience specifically with clomipramine? @wastwater posted a link to an article about clomipramine...

@forestglip has made a thread to discuss the presence or absence of fevers in ME/CFS here: Lack of fever during acute infections

Quoting two posts relevant to this:

I've just read this latest blog. It's very well done. The quality of your work (you write them in a partnership I think?) is very good, better than most papers we see.

I think your blogs deserve to be published, and I think they would be most useful published, as then they would be better able to be cited and would get a higher profile. Maybe you could join Jonathan in Qeios?