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Which makes it all the more concerning that the MEA are working with BACME to produce materials for use in ME/CFS clinics Yes, of course I agree it will take far more than a letter to get fundamental change. Disbanding BACME seems to me to be the only real solution.

Apologies for getting the name wrong. Thread here: UK: ME Local Network

Thank you, @Simon M for the article and @chillier and Audrey for your work. It is such important work. We need to know whether the hopes that have been raised by several tiny studies about 'something in the blood' can be replicated. In terms of funding, I would hope that UK government funding...

Some posts have been moved to: Covid vaccination - bad reactions, vaccine injury, and access to paxlovid.

Some posts about a different type of nasal spray have been moved to a new thread Efficacy of a Nasal Spray Containing Iota-Carrageenan in the Postexposure Prophylaxis of COVID-19 in Hospital Personnel.., 2021, Figueroa et al

Efficacy of a Nasal Spray Containing Iota-Carrageenan in the Postexposure Prophylaxis of COVID-19 in Hospital Personnel Dedicated to Patients Care with COVID-19 Disease, 2021, Figueroa et al Abstract Background Iota-Carrageenan (I-C) is a sulfate polysaccharide synthesized by red algae, with...

They have not been on the forum since 2020, so you may not get a reply.

Altered X-chromosome inactivation predisposes to autoimmunity CHRISTOPHE HURET, LÉA FERRAYÉ, ANTOINE DAVID, MYRIAME MOHAMED, NICOLAS VALENTIN, FRÉDÉRIC CHARLOTTE, MAGALI SAVIGNAC, MICHELE GOODHARDT, JEAN-CHARLES GUÉRY, CLAIRE ROUGEULLE, AND CÉLINE MOREY Abstract In mammals, males and females...

This is where I think longitudinal studies are needed, with good quality wearable motion sensors and heart rate and hrv monitors, and apps to record easily symptoms and activities, including cognitive activity every day across months. If all the data is recorded instantly via the app, then it...

None as far as I know have broken ranks to tell us what's going on. We await Hilda's next move. If anyone on the IAG is reading this, perhaps you could have a word with Hilda asking her to post an update, even if it simply says she is still waiting for some specific action by Cochrane editors...

:laugh::ill::banghead:

Anyone fancy working on a letter to BACME spelling out all the problems with their materials and asking them to update them? Not me at the moment. I'm all out of energy for flogging dead horses.

The video is a talk Katie Johnstone gave to the Local ME network. Edit: correction - the ME Local Network. I started trying to watch this but the sound quality and my elderly hearing are such that I couldn't follow what she was saying, so I read the YouTube transcript. She picks up key point...

No.

Thanks for the notes, Hutan. I watched it too but rather inattentively. I was shocked to hear at the end Walitt recommending brain training even though he admits there's no research evidence.

Our aim here is to enable open discussion of any published science without fear or favour. That way we hope to help each other to understand how research works and whether published results and claims are well founded. It's not about whether we respect individual researchers or not, it’s about...

The sample sizes, especially once they are split into male and female subsets, are so small it's hard to know what to make of these results. I hope they will repeat with much larger cohorts. I wonder whether they could look at the effect of female hormones, and specifically where in the...

I think a model or set of models also has to account for those of us whose problems are more with physical rather than cognitive symptoms, or whose cognitive symptoms are noticeable mainly when the effects of cognitive fatiguability kick in, or when in PEM.

I completely agree with you, @tuha. Throughout my ME/CFS I have repeatedly pushed myself to and through exhaustion, pain, nausea etc etc., and crashed often as a result, especially while I was still working. They have no idea with their effort preference nonsense.

Given that several studies have found between sex biological differences in ME/CFS, I think it's possible we may need two separate models.