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If there is a drop off in probability of ME/CFS after successive Covid infections, the most likely explanations seem to me either a high proportion of those with a genetic predisposion to getting ME/CFS after an infection will ahve already got it after their first one, so the proportion...

Exactly this. When mild and still working, I had to lie flat for at least an hour before getting dinner. I resorted to taking a lay back garden chair to work to squeeze into the space behind my desk chair so if the urge to be horizontal came on me suddenly I could lie down for a bit. In PEM I...

Some people with Long Covid describe what sounds to me like more symptoms than months of exhaustion, including PEM that forces them to bed for days after they try to exercise or go back to work, but also fully recovering after a few months and up to a year or so.

It seems like you are describing a difference in severity levels, and the presence or absence of OI and of PEM. I can only speak from my own experience of two separate incidences.

Early 2023. According to the November 2023 update, there are multiple stages for the protocol to go through: https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-3 I...

A reminder of a few dates: In one week's time it will be 5 years since the review was published on 2nd October 2019. On the same day the editor in chief Karla Soares Weisser announced that the new review process would be set up early in 2020. It was expected to take about two years, with the...

Thanks @Peter Trewhitt. I have just come to this thread to do the same with my recent post on the Talkpage which still awaits moderation, and email to the IAG address. Copy of email sent on 18th September 2024 to cochrane.iag@gmail.com I have only received the standard automated reply.

More at link. https://precisionlife.com/news-and-events/precisionlife-and-metrodora-institute-share-first-insights-with-metx-study-participants Sounds interesting, even too good to be true?

I think you need to be careful with trying to make your own nasal sprays. Better to buy one recommended by a pharmacist perhaps. Another option is to wear a well fitting mask, open a window, and have the right sort of air filter running in the room.

See this thread: https://www.s4me.info/threads/usa-the-recover-initiative-long-covid-research.30525/page-10#post-548860 Agenda: https://web.cvent.com/event/11825c60-cdb2-446b-adcd-c1ea9e40368f/websitePage:52ef996b-aa85-48dd-860a-f4df948e7200?rt=Z9opfogxn0eAYYkLK-tbCg

I think the point of specialist nurses is they work in conjunction with a specialist doctor, not in isolation. This is what happens with MS and Parkinsons Disease.

I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had trained critical care...

copied from UK news I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had...

Lots of the things they are attributing to lockdown are unlikely to be related, for example, kids starting school now (aged 4 to 5) not being toilet trained. But they were babies during lockdowns, so wouldn't have been ready to be toilet trianed back then. Much more likely is the UK government...

My daughter was diagnosed by a rheumatologist and the same man did a good report that got me ill health retirement. He clearly believed ME was a physical disease. That was back in about 1998 and 2004, and he was quite elderly then, so his attitude had not been polluted by the 2007 NICE...

Moderator note While this hypothesis is interesting, it is as yet unproven, and the subtypes described are hypotheses, not a proven protocol for self diagnosis and treatment. Please be aware of this rule, and do not ask for, or offer, diagnosis of which hypothesised subtype you may belong to...

I think there's no better option than rheumatologists as things are at present. Neurologists will put us in FND and prescribe rehab, Rehab departments will prescribe rehab, psychiatrists will put us in psychosomatic and prescribe CBT... and so it goes.

Hi Karen, Welcome and I'm sorry you haven't been able to post yet. I've alerted the doorkeeping/mod team to see if we can sort out the problem. Thank you very much for responding fully and openly to concerns expressed on this thread. I am so far very impressed by the efforts of your small team...

That's a really good comprehensive report, @Hutan. I hope the people you submitted it to take notice.

Does it say what people should do if they are on ESA and don't receive a letter by the end of September?