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Further on the Austrian Society for ME/CFS, the bits of that website I have seen look very good. There's information for doctors, research summaries, a record of media articles... There's a very recent report:

That's an interesting site, sympathetic to people with ME/CFS and mostly accurate. e.g. There are potentially useful links, including to the Austrian Society for ME/CFS.

The most annoying thing about this article, beating even the language that is used, is this idea of Long Covid being a 'new illness'. Putting the idea of Long Covid being an umbrella term for various sorts of post-infection issues aside for a moment, "post-infection syndromes that look like...

There are some body politics tweets from the conference discussed here: Oxaloacetate Structural spinal problems and ME - blogs and social media

We now have a thread for news from the 2021 conference here: IACFSME 2021 Virtual Conference

An advocacy project related to NICE's paused ME/CFS guideline is discussed here: 2021 UK: ME Association - NICE and the unpublished ME/CFS guideline - contact your MP

So, the hypothesis is that hypoxanthine is increased. The McGregor study associated lower hypoxanthine with PEM. And Andy tells us this one found lower hypoxanthine in pwME. It's interesting. Hopefully the study will tell us more. Possibly it will take some careful stratification of...

For those with visual issues, the Bodypolitic tweets in vsou's post are #135, as above in the first post of the thread #136 80% of participants show improvement. This is remarkable, he says. Dr Kaufman said patients speak of improvement in overall wellbeing and some describe brain fog...

The ICD-10-CM initiative is discussed further here 2021 US ICD-10-CM change proposal: addition of code for ME/CFS

The ICD-10-CM initiative is discussed further here 2021 US ICD-10-CM change proposal: addition of code for ME/CFS

The ICD-10-CM initiative is discussed further here 2021 US ICD-10-CM change proposal: addition of code for ME/CFS

Posts discussing oxaloacetate as a treatment have been moved to Oxaloacetate

I did this, although it took me a lot longer than 15 minutes. It's interesting; NICE seems to be testing out providing more information related to recommendations, and how the information is laid out. The example recommendation they gave for comment included a short sentence saying it was...

:rofl: just 'presenting' it at all would be a start. I would suggest that, for any recommendations of treatment or advice to be given to patients, there should be a statement about what level of evidence there is. My understanding is that there is some sort of code in the guideline language...

(Just thinking ahead, BAME isn't great as many would pronounce it 'barmy'. If they went for BAM, it would look great on the current front page of the website, especially with an exclamation mark, BAM!)

It would be great if that happened (at least, the UK members of those organisations). It's not very clear to me who can join, but it looks as though anyone 'with a specific interest in CFS/ME' can.

This is what I came here for: The following statement from (or at least attributed to) BACME has been posted and discussed on the guideline delay thread:

I was just checking out the BACME website. I've included the front page here just in thumbnail, because I don't want to inflict it on you if you aren't feeling up to it. I can not think of a less appropriate front page for a professional website related to ME/CFS. I mean, on another page...

No, most of the over-hyped studies come out of Griffiths University. Daniel is a member here and has taken the time to engage with us. He is part of a team that has done interesting work on mitochondrial dysfunction. We have looked at some of their published studies. (click on the missailidis...

I was idly googling and found this interesting tribute by a charity, Validity, based in Hungary focused on mental health advocacy, but clearly working in Bulgaria and very connected to the disability rights movement there. https://validity.ngo/2017/03/09/a-tribute-to-rusi-stanev/ Validity...