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Of the 892k who first caught covid at least 12 weeks ago, 178k report that the symptoms limit their activities of daily life a lot (for comparison with ME/CFS).

Poll closed, 90% in favour of the Getty Images collection put together by PwME Thank you to everyone who voted in the poll, which is now closed. 90% of you agreed that the photos are a worthwhile improvement on the ones currently used in the media. This means we can now pass on the collection...

Thank you to everyone who voted in the poll, which is now closed. 90% of you agreed that the photos are a worthwhile improvement on the ones currently used in the media. This means we can now pass on the collection of Getty Images photos to charities explained there were selected and approved by...

thanks. I think DecodeME got £3.2 million funding. I would need to check but actually, I think DecodeME might be doing whole genome sequencing and I think that costs about $1000 per person, so £10 million for a study of 10,000 people. I'm not sure on the numbers. But I think the timescale is...

Whoops, this somehow grew into a blog. Apologies. Like the DecodeME study, this exome study of UK Biobank data compares DNA between people with a condition (in this case ME/CFS) and healthy controls. Significant differences point to a cause of the condition. But the two studies go about this...

Sorry, I was mixing up my threads! Will delete my original post.

A key part of an ME/CFS diagnosis is that symptoms are not due to other causes. In the case of long covid, other causes seem very possible - regardless of matching ME/CFS symptoms. Many people in the ME/CFS field believe that some long covid is indeed ME/CFS, but that most cases are not. If we...

Lead-author replies to questions raised here about the study - cont... More detail 1. Could you comment on the apparently-odd fatigue scores? The lowest patient fatigue scores were very low (0 pre-test, 10 post-test) and the highest control score was very high (70 pre and post-test). These...

Answers from lead author Dr Inigo Murga to questions posed on this thread My thanks to Dr Murga for replying to questions I passed on. I don't have permission to share his email and so will summarise his points. Highlights The apparently-odd fatigue scores were accounted for by just a few...

The discussion (and voting) of and on possible images came up with a final selection of photos that we think are a worthwhile improvement on current media images showing the likes of yawning well-groomed office workers to represent ME. We now have a final selection of photos we think are a...

Good point, I will ask the researchers about this too. Though people who wind up in research studies tend to be hyper-educated (lest we ever think they are really random samples).

This study found a huge difference between patients and controls on a relevant measure People have made a lot of valid points about how difficult it is to produce a "fair" test of cognitive function in people with ME, including issues around time-of-day and state of health, and the best way best...

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