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If we got to choose, I doubt that any of us who voted 'yes' would choose every photo. It's about being pragmatic, sadly. A stopgap until we have something better. This is a real problem. The key consideration is that a picture is worth a thousand words. A photo showing someone not obviously...

We need your opinion on this pool of photos: > Proposed collection of ME/CFS images for use by the media < A group of forum members suggested and selected (here) the photos - as a resource for people who choose the images for stories in the media about ME. Everyone is fed up with the media...

I find it hard to imagine that they had done this but failed to mention it in the paper ;-). Perhaps I will simply ask if they plan to do this (or plan to test a significant number of ME patients who are not on medication.) good point.

If replicated, these findings are of huge importance, IMO. Over 80% of people with ME report cognitive issues yet research studies have never found very much (including the Cognitive Function Montreal test reported here). The biggest effect has been for reaction speed — and I've never heard...

Veronica, who is quite ill, asked me to post this.

My estimate: 80k cases of LC in the UK that might be ME/CFS. Comments on my assumptions are welcome.

Poll: what do you think of these possible images for a photo collection? VOTE! This thread has been discussing a possible collection of photos from the Getty Images photo library that is used by many media outlets. The thread largely reached a consensus but there was some debate about some...

Two more published poems from Veronica draw on her experience with severe ME. https://www.abilitymaine.org/bs2021fall/%22leo%E2%80%99s-bite%22-and-%22roar%22

I have lost touch with Omf research and with this specific research. But my impression, which may be wrong, is that the metabolic trap is a main focus if not the main focus at Stanford. And that OMF brings in $5 million a year. I don’t understand how that squares with somebody working part time...

There is a member-only thread looking for feedback on a selection of possible stock photo library images (and asking for better suggestions). What do you think of these photos to depict PwME in the media? Help us build a collection!

Jam tomorrow, and important general points Promising areas but no firm results yet... The importance of cell subtypes and subgroups Unutmuz stressed the importance of looking in detail at different immune types and subtypes, particularly for T cells. Nath found mitochondrial deficits looking...

not exactly. Many changes will be synonyms (changes in DNA sequence that either lead to the same amino acid being specified) or a similar one in non-critical parts of the protein. RARE variants won't necessarily be complete loss of function, but they are likely to have a significant loss of...

my understanding is that rare variants almost always occur in the coding region (i.e. affecting the protein that is made, not the quantity of the protein). This is because such protein-coding variants often have large effects. Most variants that turn up in GWAS are in non-coding regions and have...

not really. Most researchers believe that long co-is likely to be many different things. This still isn't the research to demonstrate that ANY of it is definitely ME/CFS, though it certainly looks that way (decodeme will be looking at the genetics of people who meet ME criteria after Covid...

whole genome sequencing remains very expensive at around £1000 per person. Decodeme only has funding to investigate DNA differences at close to million locations in the genome, which is very different. It plans to store part of the saliva sample (where people give consent) for future whole...

Six significant findings? Following a migraine interlude, I'm now focusing on what looks to me to be the most interesting findings and I will be interested to know if others agree with my choices. Metabolomics 1. PEM-linked metabolites. Dr Maureen Hanson highlighted work by Dr Arnaud Germain...

Merged thread There has been a lot of coverage of ME today with the release of the guidelines and a lot of really crummy photos illustrating articles, each one creating the impression that ME/CFS is a pretty trivial illness. I know there have been many attempts to tackle it on par in the past...

3,500 words, when I copied into Word so I could print and read more easily! Clearly, all of us here are very grateful to you for sharing your notes and thoughts. Thank you too to @Michiel Tack (and Evelien?) I have taken the liberty of summarising here what struck me as the most important...

Veronica is on a roll - she's just had another poem published, called Patient. It is about resilience: Patient, by Veronica Ashenhurst I felt muzzled in those flat, troubled years, A desert tortoise who knew secret burrow, Quiet’s heft, modest earth: I learnt the view from bed. ... She...