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Lovely to hear @DMissa and I really enjoyed the talk. One of a number of great communicators and caring researchers we’re lucky to have. Looking forward to what comes out of the current project particularly in conjunction with all the other studies (obviously especially DecodeME). Pulling...

Should we consider the audience that isn’t deep into this? I wonder what someone unversed in all the history would make of this and if they’d grasp the point about things having been found but there being no reliable evidence for causal mechanisms? I suppose it depends on the target audience and...

Looks great in dark and light modes. Thanks @Tao Fogger glad you got to the bottom of the issue.

Given I had a serious kidney infection around onset or at least that was involved in my significant worsening I had repeated urine tests then and in the time after (along with the usual blood tests). There were nothing flagged. At least some of these, if not all, would have been when I was at or...

Oh I agree. And may have explained poorly. I was thinking maybe if your wider framework is changing, why would you announce changes for a particular disease before announcing that wider framework? One needs to fit within the other, so they’d logically come together or with the framework first...

To be clear, that’s not what I was implying at all. I understand and accept people’s cynicism, but I simply meant announcing a plan for changes to how care is delivered for a condition make sense to come in conjunction with an announcement about wider changes to how all care is delivered.

Not sure if this is the right thread but apparently the wider NHS 10 Year Plan is now scheduled for July, see this Times article. Whether this will impact the DHSC ME/CFS Delivery Plan I do not know, they’re not formally linked but it could make sense for them to come together.

I’m not sure if it’s the new forum software or how it was copied and pasted with formatting included, but FYI @Tao Fogger the last post is unreadable in dark mode (the text remains dark as well as the background). It’s fine in light mode but quite a few people browse using dark mode. Previous...

That reputable clinicians disagree on what inflammation is. Or as @Eddie says what various things mean. I do think it’s understandable that some are responding in the way they are, we saw some of these concerns here, there have been studies that show ‘things’. But I also think it misses the...

I and I’m sure others really appreciate the ELIABFs too!

I’d go for a bunker. The Hobbit hole is just a slightly fluffier version. But I’ve fantasised about both for years too. Maybe one day…

I think we should just all move into Hobbiton, underground homes all on one level with nice even temperatures, not too cold, not too hot. And Hobbits tended to have plenty of nice food and pretty gardens too. Sorry not very practical… but I can recommend the good quiet fans you can get. I...

Sorry to hear that @Yann04 summer always breaks me too. I’ve not tried phase change material, just things like ice packs and frozen hot water bottles, which can obviously get quite damp, even if wrapped in tea towels.

https://www.actionforme.org.uk/the-uk-government-sets-out-its-spending-review-our-response/ The issues highlighted are being discussed in other threads but thought people would like to see what AfME posted.

I think the “yes you are really quite ill with a real thing” will change how we are treated quite noticeably, even with people who are not full on ME/CFS deniers, just ignorant. But people will always vary. And like @Kitty said things like masking vary enormously. I just ask people to do so...

Maybe it’s a tonal thing? A lot of the paper is rightfully clear about what is not known, so sentences which seem to more firmly discount an area perhaps stand in contrast to that? I’m not sure ‘consistent’ alone conveys that uncertainty. The paper referenced had a little discussion here in...

I assume they mean sufferers That’s all they say about conflicts… I hope no patient is embarrassed, desperate ill people will try all sorts and being open to ideas is good, as is changing your mind when new evidence appears. I know I’ve been through various ideas about this illness. Those...

Here’s what the Altmetric stats say It seems to have more views, downloads and a higher attention score than the Concept of ME/CFS paper. It would be interesting to hear what all those outside the forum reading it think though.

I absolutely agree. I was more contrasting with banana diet in terms of, bananas didn’t make some people worse and some people better. But I absolutely agree vaccine reactions or more generally immune reactions hold an important clue. And it’s one of the aspects that has been so frustrating to...

Others have covered my feeling that pacing is different in important ways, specifically it’s not a treatment, but I suppose you could see both as management techniques to avoid getting worse. Viruses or vaccinations are different too in that people do talk of periods of feeling better, but...