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Do we know what #ThereforME were requesting in terms of action?

Thanks, @Kalliope - I wonder if it's worth editing your post to make it clear that that's just the opening para of his statement?

How about the mysterious 'something in the blood'?

I think that if deep relaxation produced immediate remission, we'd know about it - lots of PwME have tried deep relaxation. Even sleep, which ought to be deeply relaxing, doesn't produce remission every morning (in fact, quite the opposite). I suspect lots of us feel better after deep rest...

Occasionally, I have to gently explain to well-meaning friends who only see me at my brief, fast-burning best why I wouldn't feel better if I 'just went for a short bike ride'. I'm gentle about it because I know they're trying to help me because they care, but of course they only know about...

I've been doing that but have realised that I can't hold my breath for long enough! If I think about for how long I can smell someone's perfume or cigarette smoke after I've passed them, it's actually quite a distance...

That's an amazing story! Immediate full remission of symptoms like that must surely be a gigantic clue to the mechanism of ME/CFS. And so must the nature of the things that immediately precede these instant recoveries. Any thoughts, @Jonathan Edwards? Would it be worth starting a poll asking...

Oh dear:

Very interesting! Is there any way of determining whether that is the case? For example, would the results of DecodeME help? Is there a restricted list of candidates that could feasibly be investigated? Is there any way of narrowing down on that unexpected thing? That's fascinating. If no...

From another thread: This reminds me of Ron Davis's idea (in relation to the itaconate shunt hypothesis?) that there could be an on/off switch for ME/CFS, and of sporadic reports from PwME of their illness abruptly 'switching off' (wholly or mostly temporarily, if I recall correctly). So, two...

Now that you mention it, I'm also surprised that I didn't include that question! I also ask family to do a lateral flow test on the same day before they visit. I think it's probably too late to add that question, because at this point, most people interested in the poll will have answered, so it...

@Jonathan Edwards - this is from another thread: This reminds me that before vaccines were available for Covid, there were a lot of reports that people would get an acute Covid infection and then about five or six weeks later would get hit really hard by it, even if it had seemed to have...

Thanks very much indeed to everyone who has replied so far. I started this thread to find out whether I was largely alone in still shielding, and it's both affirming that I'm not, and sad that I'm not. Even with all the precautions I've taken, I've had what was probably Covid twice now and both...

Would you like to explain a bit about this time window? Do you mean that there might only be a 5-10 year time window during which someone could develop ME/CFS? If so, why would that be the case, rather than a lifelong vulnerability? (I have a feeling I'm misunderstanding you!)

Pretty much word for word, this was me for 18 months after I got Covid pre-vaccine - then things improved a bit and now it seems to be happening again. I'm so sorry for the struggle that you and your family are facing, @Ariel - I hope it helps to know that you're not alone in your experience...

Thanks, @forestglip. I've read about exposure to various things being good for children but I wonder if it's different for adults, given that our immune systems have already had an education? I'm also wondering if it's a different picture for response to viruses, as opposed to allergies.

I came across this idea a few months ago - that continued low-level exposure to viruses helps to keep our immune systems trained, even as adults. Is it true? As someone who has been shielding since 2020 from Covid I'm wondering if I'm in some ways not doing myself any favours, and what would...

Same here, and the burden of it on researchers and reviewers that you describe is in no-one's interests if it's not actually adding anything. In ME/CFS, it's so easy to pull the wool over the eyes of gaslit patients. And no amount of PPI would have stopped PACE, no matter how expert the...

I was ranting on another thread about how crazy it is to involve local patients in trying to develop local ME/CFS services, when most patients don't have the necessary knowledge, or understanding of NHS systems, to do that. I think it's clearly a national issue that should have a national...

Peter Rowe in his new book about orthostatic intolerance says, 'Another time-honored recommendation is to elevate the head of the bed slightly by 10-15 degrees so that the head is higher than the feet [ref: MacLean and Alen, 'Orthostatic hypotension and orthostatic tachycardia'; Ten Harkel...