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I have been very surprised to hear that NHS doctors are opting out on a wide scale of dealing with PwME because so many PwME hold to these theories, and I've been around a long time. I thought they just didn't want us because they thought it was all in our heads. That's why I think it would be...

I share the outrage that doctors are failing to care for me and other PwME because they don't like the theories that some other patients hold about their ilness - especially when those patients have been told those theories by other doctors. But if the beliefs of a substantial fraction of the...

S4ME doesn't have a big enough megaphone. The charities need to be persuaded of this and to be pushing this line. Thank you for your service. :arghh: Hope you get better soon. Can't believe that so little effort has gone into mitigation of Covid.

This looks really interesting. I wonder what they'd have got if they'd pulled out the data for PwME...

No control group?

Interesting! Thank you.

I don't think it does... The mechanical damping would mean that it wouldn't, surely. I agree that a cut-off is somewhat arbitrary but why would genes for, say, bone growth affect ME/CFS?

But why assume they all play a part?

How do we know that? (This is surprising to me!)

This is going to be an incoherent and pig-ignorant question but my (possible completely wrong) understanding is that lymph doesn't move around the body unless we're moving and our muscles are pumping it. According to Google AI, 'Lymph's main functions are to drain excess fluid from tissues...

My big tip for hairwashing is to have your hair cut short, but I expect everyone has already thought of that! Loads less effort.

Thank you for persisting. It's very much appreciated.

For quite a few weeks now, I've started up with a streaming nose as soon as I get up. I've also been sneezing more than usual. I do anyway have a chronically stuff nose and sneeze a bit but over the same period, I've felt a fluey aching. I'm still shielding and it would be extraordinary if I've...

Agreed, which is why a years-long study might not be suitable for answering the question of what the natural course is of ME/CFS when you don't intervene. It would be unethical to expect that people should not be treated for other conditions, especially cancer, during the observation period -...

Good point! If people are allowed to test treatments during monitoring, doesn't that negate the purpose of the study - to be sure that we're looking at natural variation? This is partly why I suggested a six-month monitoring period, because that seems a reasonable period for people to agree not...

I think what we're really looking for is the big shifts. I have similar shuffles in a few percentage points but larger shifts are rarer. I think we want to capture changes that are beyond the scale of what can be affected by management (i.e. pacing).

My thinking was that by snapshotting many people over 6 months (say), we'd capture how many people experience marked improvements over a six-month period. If each of us only has a marked improvement every ten years on average, for instance, you could capture someone having that improvement if...

Our surveys ever only pick up a tiny fraction of PwME and we're not normal PwME - we're likely a very biased sample of very ill PwME who have been ill for a very long time. I think we need (and deserve) proper data that indicate the full picture. I think there'll also be bias in who has chosen...

I think we need something that measures daily and doesn't rely on memory to provide data over a longish stretch - even a week. People aren't designed to remember how they felt a week ago.

I was hoping that by following a lot of people for a relatively short time, it would be like following a few people for a long time. I am willing to stand corrected! But I don't think we can expect people to wear actimeters for years. Questionnaires can be quite effortful and I don't know how...