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Looking at the thread Endometriosis and ME/CFS I wonder if we could get a better idea of the crossover with ME/CFS and perhaps even Long Covid from DecodeME data? A high proportion gave permission to share medical record data IIRC

These are the sort of discussions, sharing of ideas and questions I’d hoped to help along. Lovely to see. Thanks everyone for joining in. Of course I’m in the fortunate position of not really being able to answer any of them with mechanistic detail, but maybe others are! Having space to...

Thanks @Jonathan Edwards I find it difficult to distinguish what information may be part of a bigger picture or seen in different light when we have more information and what isn’t. So appreciate the experience of all those with it on the forums in helping do so

It really is heartwarming to see. Both the responses and the use of and reference to the S4ME fact sheet. Congratulations everyone involved and especially Trish.

Absolutely fair :) Thanks Trish. It’s definitely something I thought about before sharing. It doesn’t add anything in terms of evidence or understanding. Just represents me getting my head around ideas floating around.

You say you want a revolution Well, you know We all want to change the world You say you got a real solution Well, you know We'd all love to see the plan

I have recently had thoughts organising in my head so wrote them down to help. This is maybe a continuation of discussions or ideas in A Thought Experiment on Muscles and possibly outright theft of other people’s ideas but maybe I can pretend I’m standing on the shoulders of giants or it helps...

Going over this again with a little more understanding (dangerous) and context of other studies and recent discussion. Is it fair to say there are some questions over some of the conclusions/interpretations here but the general picture of perhaps subtle shifts in the makeup or profile of immune...

I had some issues adjusting and had to tweak things until it felt right, I’m wary of giving advice for obvious reasons. There is a longish half life for ivabradine and any medication changes can take some time. But am glad to hear you have a cardiologist giving advice.

That’s the position I’ve moved to. Dying gasps of an old order under threat or even as it moves into irrelevance. Not to be panglossian, the path to change will be long and we’ll no doubt face obstacles. But it seems we’re moving to a point where we’ll have the tools to overcome them and the...

Exactly this. The political context and timing should not be underestimated.

What a tease! It seems there are at least useful results from DecodeME then, which there was never a guarantee of. That in itself feels like positive news. If the data can help to start to tie together things together in a bigger picture even better.

Development of myalgic encephalomyelitis/ chronic fatigue syndrome: A neurobiological construct Trond Myhrer Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling medical illness with unknown etiology and consequently without causal therapy. In the present study...

Great, thanks for the context @Jonathan Edwards that’s very useful. Most fields have their bibles, I hope this can become that for this field. Perhaps with an addition or two over the coming years!

Forgive me for my ignorance, can someone explain the significance of this? It looks to be a book describing methods of (largely already published) papers, is that correct? In which case what does this add? Is it more detail on those methods and how to reproduce them than is provided in the papers?

Interesting that there’s a new paper on this. I look forward to finding out what it says and if they replicated previous findings. Does anyone have access? Thread on the previous paper on this topic by this group Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood...

Has anyone heard any news out of the APPG meeting yesterday? Will be interesting to hear how it went and more detail on the discussions and presentations

Yes, there was some mention of this in papers I was looking at recently around a related area discussed on these forums. And it’s difficult because neuroplasticity is a thing, but gets distorted or used inappropriately into another thing by some people. Probably a wise way of looking at it. I’m...

It is, very! I was thinking along the lines of what people like Paul Cisek have argued, if you’re familiar with his work. If not I’ll dig out some presentation of his for you. All very interesting stuff. And yes, agree with your other points. I think there’s a few reasons for the push towards...

Thanks for the additional detail @Kiristar it and the rest of your work on this are very much appreciated