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I've only been able to read this study now. Here are my thoughts. 1) 28% of the ME/CFS patients were diagnosed with POTS but the majority had a normal heart rate and blood rate respond during the tilt table test. Given that daily life orthostatic intolerance symptoms were reported by 78% of...

Cautionary note: we don't really know how reliable these lists are. We prefer to focus on the trending lists of Twitter itself where unfortunately we weren't listed in the UK yesterday. That could have been due to some fierce competition by Champions league football (the Spurs played yesterday).

Thanks @lunarainbows! This is horrible. I think it's important that ME advocacy distances itself from figures like her.

Do you happen to have a link for this? Thanks in advance,

How to join MEawarenesshour on Twitter For those who don’t have a Twitter account but would like to join us for MEawarenesshour, it’s really easy to get started! Creating a Twitter account only takes a minute (literally). You can find the full instructions with images on this website...

No. They've first sent an email that they would get back to me, but they haven't despite another reminder email sent by me. I'll keep trying and send another reminder email in a couple of days.

Agree, good point. Nonetheless, it looks like a good video and it's on the BBC. Many thanks to Lorna Bryson for speaking out and sharing her story.

I've previously posted a graph on Twitter that showed a stark increase in the number of MAH tweets since last time, but I think I made a major counting error. The number of MAH was probably similar to last week. That would explain why we were trending again in the UK, but not at a higher...

But if I understand correctly, this will just be an advisory group, so not the people who will actually be writing the new review?

I thought the paper wasn't that bad. It mostly explains how the term 'functional' has different meanings They give the example of tic disorders, to show that functional sometimes means psychogenic I think I remember a paper by Wessely's group where they argue that the ambiguity of "functional"...

Horrible news, my condolences to the family. This makes the recent interview with Anthony David in the Times very grim reading material. He talked about a girl diagnosed with severe ME and noted "these people suffer from real physical illnesses that have their root in the mind." The girls was...

It's MEawarenesshour again tonight. Last week the hashtag was trending in the UK. Patients could see it on number 24 in the trending list on their Twitter account.

I agree that listening to what Dr Bolognese has to say and whether it makes sense, is ok. But by posting a picture with all the OMF people listening to his presentation and with a comment suggesting they are collaborating, they are giving him undue respectability. I'm concerned that if this...

I have some concerns about this:

M commentary on this study has now been published: “Letter to the Editor: A misleading CFS prevalence estimate in DanFunD” https://journals.sagepub.com/doi/full/10.1177/1403494819893240 Thanks to @Graham and @Robert 1973 for their feedback on early drafts. Social media summary: It’s a...

I have little to no merit in this. I think @FMMM1 might be better able to answer your question.

Twitter thread: 1) 2) We often focus on the lack of funding from the NIH in the US but there are probably more ME patients in Europe where practically no biomedical research into ME is taking place. This has to change. 3) Some advocates are doing excellent work behind to scenes to put ME on...

https://www.meaction.net/2020/02/05/the-eu-committee-on-petitions-is-preparing-a-resolution-on-me/

I thought it might be useful to group our discussions and comments on academic publishing. This includes the role of scientific journals, the relevance of peer review, the use of preprints etc. I thought this comment on Twitter was interesting: