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My MP still isn't on here, I'm sad to say. I will fire off another (likely unanswered) email!

There's a catch in that #MEAction is part of Forward-ME now and so works with all those charities. IiME have said they do not want to work with AfME. I can't see how they can be included given that snag. But maybe this will be the impetus for them to extend an olive branch? Given that Caroline...

Reduced areas of blood flow and metabolism. Such as: 'CFS patients showed a significant hypometabolism in right mediofrontal cortex (P = 0.010) and brainstem (P = 0.013) in comparison with the healthy controls. Moreover, comparing patients affected by CFS and depression, the latter group showed...

This looks like an exceptional opportunity. Perhaps we could get someone with an interest in ME to apply? Link: https://jobs.exeter.ac.uk/hrpr_webrecruitment/wrd/run/ETREC107GF.open?VACANCY_ID=507368LZb4&WVID=3817591jNg&LANG=USA

Possibly. I don't know the exact reasons but it may follow. One of the rules of being part of Forward-ME is that you have to agree to work together, which I think is fair enough.

Frankly, I'm not a 'fragile' person, but I think they crossed the line. Some of the other replies to me have disappeared when I blocked them, so there's only the one reply to me, I think. I'm actually very upset at their response, however. Mostly the tone, but also calling my posts 'a joke'. I...

I think the time issue is a problem multiple people have raised, and is totally fair. Really, such a document, if it's to have support from across organisations, needs to be that way from the start. Meanwhile, I've found IiME's response on Facebook to me specifically to be personal and...

Yes, I have problems too. It's just not clever enough. We shouldn't leave doctors feeling aggravated and attacked. It needs to be smarter than this: pointing out that doctors want the best for their patients; that clinical practice is lagging behind the science; that new evidence suggests GET...

I should add: Invest in ME Research have been asked to collaborate with #MEAction UK multiple times, and either declined every time or didn't reply. That's why the charities involved in the Parliamentary screening ended up working together, and not IiMER. I should also add that the charities...

It was a good session. Not quite a debate, since everyone was in agreement, but definitely interesting and on-message. This is somewhat exciting news, I'm happy to say.

I think it's only being considered for the diagnostic part of the guideline. However, I suspect NICE will go with something easy and accessible like the IoM criteria. CCC would be nice, but I'm not sure how easy it is for GPs.

Exactly right. I think they've got it mixed up somewhat. Yes, I'm part of #MEAction UK, along with a few others on here. But I volunteer for a few charities, so I'm not exclusive to them (for instance, I'm on the management committee for Schools OUT UK, which is the charity behind LGBT History...

Yeah, it's not too bad, although it suggests most recover at the end. I think it should qualify that younger people have a much better chance of recovery than adults.

I should add that Science 4 ME contributed a section too, I think. Again, that was because someone volunteered/suggested it, I believe. In general, #MEAction produces the briefings on its own, because it's easier than negotiating between multiple charities. I think that in future that'll be...

As the person who drafted the NICE guidelines part of the briefing (which ended up getting revised quite a bit due to length), I know IiMER weren't specifically excluded. The briefing was originally just going to be written by #MEAction UK with help from the ME Association. It was never...

I sit mostly in a recliner, so feet off the floor! Like Jenny, I struggle with my feet flat on the floor for any length of time, so HUA might be a useful measure for me, personally. If we are supposed to keep our feet off the ground, though, it would be nice to have a study exploring that. Not...

Re: reduced outcomes on the CPET even though you weren't experiencing overt symptoms of PEM, this reminds me of the Ramsay wording. He didn't focus on PEM at all but on 'muscle fatiguability'. It seems like your experience was measuring that more than an increase in certain symptoms, per se? So...

I asked #MEAN what Klimas is blocking but they didn't answer, so maybe she didn't say. I don't think it's the same receptor as in GWI. I think the tweet is just ambiguously worded. My take away from it was that she's trying to block a different receptor for us, after identifying the GCR in...

The results are very weak indeed. And again, they assume causation rather than correlation. It's far more likely that minute differences in cortisol (and they are minute, if they differ at all), would be a consequence of HPA disruption, rather than assuming (as the authors do) that this is due...

To be clear: she claims the glucocorticocoid problem is in GWI, not necessarily ME. She doesn't yet have a mouse model for our illness, which appears distinct from GWI. I didn't read it as 'stress causes GWI', but even if she is saying that, it doesn't mean ME follows suit. GWI occurs in the...