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I don't understand the logic of your comment. Fluge and Mella were very clear that there should not be widespread use of Rituximab after their uncontrolled trial looked promising. They insisted that it was important to do their larger controlled blinded trial first. As it turned out they were...

It might be worth asking if there was any chance of an answer. We've asked the same question multiple times. They simply ignore it.

I guess this is what Cochrane calls keeping us updated. Posted on the letters thread:

I haven't seen evidence of this.

Those sound incredibly high percentages of widespread musculoskeletal pain in adolescents. How can it be called widespread if it's mostly neck pain? My inclination seeing a figure like that is to suggest it's not disabling pain, and may be related to posture rather than anything internal.

Back in 1989 my GP diagnosed post viral fatigue and said after 6 months its name changes to ME. I don't think PEM was mentioned back then, but I certainly experienced it.

It reads like a parody of something, not sure what. It deserves the most pompous parsnip award.

What is coherent breathing?

I was thinking of the same as for genetic predisposition, maybe also environmental predisposition, which might include insecure employment so not being able to rest while sick, dietary deficiencies, mouldy houses. So more from each group end up with ME/CFS first time. There is therefore a...

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.