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I'm happy to answer on this thread any questions you might have. And I'll try and make sure this thread is updated into the future with any updates.

Mod note: There are three groups in the UK government's ME/CFS Delivery Plan of which the Research Working Group is one. The other two groups, and the Delivery Plan as a whole are discussed on this thread: UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group...

What do you think it would tell us that we don't already know/suspect? Because tinnitus is not well understood at all. I have read some of the main papers and theories, as I have with ME science, and there are some parallels in how the symptoms/conditions are understudied and not well...

I don't think Richard is suggesting that OP doesn't get it checked out, particularly as OP seems to be recovered/in remission. There is limited data on the prevalence rate of tinnitus in ME and LC, but they do suggest that tinnitus is common in both. The Dowsett paper in 1990 had auditory...

Sorry to hear you have developed tinnitus. I have severe tinnitus, with onset over ten years ago. If it's just starting, my advice would be don't panic and try and remain stress free. Not easy with such a horrendous symptom. But stress and anxiety can make tinnitus worse. There is no cure for...

Full text: Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said. Speaking at the launch of a report by the All Party Parliamentary Group on...

I have been off the forum for a few days, but I can say there was press lined up for Wednesday, but the Partygate stuff scuppered some of that.

Now received.

I am wondering if anyone has access to the Benefits & Work PIP Guide. I have an older version from when I subscribed, but would like to get hold of the newest version (version 55, April 2022) given some changes to the PIP2 form. Please message me if you can help. Thanks!

Yep. Seen a lot of this recently in the more vocal parts of the LC community. It's not helpful. I like this sentence from John Ioannidis. One study does not establish scientific fact. It's the start of the journey, not the end.

Someone is continuing to conflate their role in DwME with their personal interests and professional/corporate experience in unrelated sectors.

Yep, I use cognitive dysfunction/impairment.

These may be out of date, but they are the most recent of the files I have.

https://www.nice.org.uk/guidance/ng206

I have several files. I was trying to find out which were outdated and how exactly the documents worked. It's not straight forward. But here are two of those files.

I quite like the term post-acute infection syndromes, as opposed to post-viral or post-infection syndome/fatigue. The former leaves open the possibility that the virus/microbe is still active or present in the body.

Tony from MEA looking for someone to do a TV piece to go out with APPG release.

Just say what's in the product for god's sake. Is it just mag. chloride? A quick google shows it seems to be mag. chloride with B6, so how can they be sure any effect is not due to B6...?

Pleased to see the APPG has a new website. https://appgme.co.uk/

Early day motion. Posted elsewhere on the forum, but part of government advocacy/announcements. https://edm.parliament.uk/early-day-motion/59735/me-awareness-day-2022