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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 I was trying to find out which were outdated and how exactly the documents worked.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'.

Yes, I noticed the link had been removed. You could always contact the person whose webpage it is, as he is the author of the document.

So the EHRC could have swapped 'ME/CFS' for 'long covid' in their tweet and it would reflect the status quo for ME/CFS...

I am wondering—because this is not an area that I have much expertise in—is ME/CFS classed as a disability in this context?

Although, again, the nature of the definition of long covid is an issue. For many, LC is not disabling, and they can work and live their lives as normal.

I don't think this article has been posted, but we have discussed earlier in this thread the EHRC tweet announcing this 'policy'. It is quite shocking, and must be fought. I have submitted a FOI request to EHRC request to ascertain whether this is now their policy and how they came to this...

I can raise this within FME. We are working on trying to improve NHS ME/CFS services' websites, and obviously this main NHS page is important.

This is just a copy of an article in local news, last week. I knew I had read it before. https://www.gazetteandherald.co.uk/news/20110501.saskia-james-immensely-proud-working/ I'm surprised BBC does that.

This is essentially the NICE long covid definition/criterion. My neighbour had covid a few months ago, and still has a cough that hasn't resolved. She has long covid according to the NICE guidance, and this is why I'm so adamant that unless people stop conflating these cases with the ME/CFS-like...

It's probably an accurate reflection of what they offer. Note they are talking about their in-house service (https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/), which I think is now managed by ex-ME Trust staff.