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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These may be out of date, but they are the most recent of the files I have.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 I was trying to find out which were outdated and how exactly the documents worked.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

Both very welcome developments. A spark of hope.

Maximise exposure to patients maybe. But that's not really what I'm talking about.

I hope there is a bit of press for this. Obviously not a big story like the NICE shenanigans, but a story nonetheless.

Yes, the BBC story is quite strange, because it doesn't seem to link to a newly published paper. And no other outlet is running with this 'story'....

You might be best seeing a few different GPs in the practice before settling on the least worse! I was once thinking of changing practices and so rang the potential new place and asked if any of their GPs had experience or interest in ME/CFS. The answer was of course 'no'.