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Should the question be restricted to fever during PEM?

The first DecodeME questionnaire has this item: Cold or flu-like symptoms 14. In the last 6 months, have you had any of the symptoms below often, repeatedly, or constantly? Please mark any that apply. If none apply, leave all the boxes blank.  Fever or chills But not in relation to PEM. The...

Any thoughts about how to put the question for a poll, @Jonathan Edwards? How about something as simple as, 'Do you experience fever during PEM? [Always/sometimes/never}'? Do you want a question in there about confirming temperature (I'd be a bit surprised if people measure it, though)?

I've never heard of this, but a quick forum search on 'fever PEM' brought up this from last Thursday (my bolding): That's a really big surprise to me. Worth a thread of its own or a poll?

This is the kind of thing I think it's worth thinking through. I'd been wondering about what monitoring might be necessary for safety and whether it would involve GPs. What sort of specialist would be needed to do a full pre-trial assessment, or could GPs do it?

Merged threads ------------------------ @Dakota15 posted about this trial on another thread but I think it's a very interesting example of an approach that could be applied to ME/CFS and worth discussing:

Thank you. It's so incredibly hard to be listened to by these people as a patient. It's important that they hear criticism from people within the profession.

Sorry you're feeling rubbish, Binkie4. When you say we don't have a member in ED's constituency any more, do we know that for sure? Might be worth starting a thread specifically asking that question, if you're looking for volunteers to contact him.

Does anybody know why the MRC is blocking?

I think we're both half-right! Age Concern says, 'The eligibility criteria changed on 1 September 2023. You’ll be eligible for a free shingles vaccine once you turn 65 following this date and will remain eligible until you turn 80. However, if you turned 65 before this date, you'll have to wait...

Do you think the drug targets will emerge from the genetic work specifically (and discussion arising from the genetic work) or from something else? I don't see a clear and rapid route from the DecodeME findings to drug targets.

. Would you like to expand on that? I noticed on another thread, you said: And here are a few of your quotes from that thread: Does this imply that tackling our sleep should be a priority? Does it suggest that some ways of tackling our sleep might be better than others (given that people...

The deadzone seems to be for people who haven't just turned 65 and are still under 70. It's crazy. I'm glad you managed to bag yours! I don't know why they don't just offer it to everyone over 65. I looked for info on age frequency for first shingles attack but couldn't find anything. I'd be...

Is there any indication that PwME are likely to get shingles earlier than the rest of the population? Would that be predicted by your proposed theory, @Jonathan Edwards? It sounds pretty nasty and I'm surprised that the lifetime risk is so high (about 30%). Google AI says, "In clinical...

I misread that as 'PERP1', which would have been a great name for an ME/CFS-causing gene. (Unfortunately, this is about my level of contribution to the discussion.)

Fair enough on the practicalities of ethics committees, and I can understand scientists wanting to keep their ideas secret in the competitive framework that we have for funding. But what about a requirement by the ethics committees that the scientists have to get their report vetted by a...

Presumably the lay members on ethics committees aren't necessarily people with health conditions, let alone the conditions that would be the subject of any particular research submission. I wish we could get well-informed PwME having input into ethics committee decisions on ME/CFS research...

Anybody got any idea what other conditions he's talking about? Do we know that there actually are any?

Haven't had a chance to dig properly through this but this MEpedia page refers to Dr Chia trialling interferon (not sure which kind), and Google turned this 1996 trial of alpha interferon on CDC-criteria PwCFS up. There may be more, sorry for the rubbish searching, not sure if even these are any...

Really is a sitting duck for FND, then. I feel the time is coming when every single thing you walk into a neurology consultation for is going to be all in your head. Neurologists seem bent on rendering themselves utterly pointless.