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Unpublished: Published on their website under a short introductory article headed: Standing Strong: Global ME Community unified in support of NICE 2021 ME/CFS Guideline World ME Alliance Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline The World ME Alliance...

This is the article the letter above is responding to: Rixon M, Clarke K, Hernandez S, et al. Characteristics and Multidisciplinary team management of FND. Progress in Neurology and Psychiatry 2023 Abstract Care of patients with functional neurological disorders (FND) is complex, often with...

Hi Chesley, welcome and thank you for joining us. I'm not clear about whether you are making a film about ME/CFS, your and others' experiences etc, and the One name idea came up in your discussions as a handle to use for publicity for the film, and to attract people interested in the other...

Todd Davenport continues: Active research funding for ME/CFS this fiscal year is under $10 million. That’s less than 8% of what may have gone to *one institution* to do *one Long Covid project* — not even covering the actual costs of the people and materials for doing the research. When we talk...

Yes, it is awful. Glasziou should be ashamed of himself for playing the victim of social media comments he didn’t like. And for talking rubbish. I have never heard any defenders of the CBT/GET approach explaining how patients are supposed to make informed choices about whether to do CBT/GET...

The article linked in the above tweet is https://www.statnews.com/2023/08/09/long-covid-nih-trials/ Stat news ‘Underwhelming’: NIH trials fail to test meaningful long Covid treatments — after 2.5 years and $1 billion RECOVER funding has primarily gone to observational research The article...

I hope you are able to stay safe, @Midnattsol and all our other members living in the affected area. :hug:

Excellent work, Lucibee. It seems the more we dig into the research on fatigue and ME/CFS, the worse it looks. As a side issue, but I think and important one, they seem to use the words fatigue and tiredness interchangably.

It could be a mistake. I had a phone call a few weeks ago telling me I would be visited the next day for a covid booster. I asked if my daughter was on their list too. They asked her age. The response was that they were only doing the spring vaccinations for over 75's so she didn't qualify. I...

I saw the comments on Twitter. How do you get his newsletter? By the way there's a typo. It's Yong, not Young.

When you subtype by biological features in the lab, do you also have data on clinical features for each individual that could usefully be compared. I'd love to know, for example, whether it turns out that those with a predominance of gut problems in addition to core ME/CFS symptoms have a...

Paul Glasziou, one of the 51 signatories of the White et al paper posted a link to it on Twitter and insisted anyone replying should link references to support any criticisms. There were lots of replies, all those I've seen polite and many with evidence links. He has now tweeted on that thread...

I think they make a reasonable point about Cochrane reviews normally being for estabished treatments where there are multiple studies to review, not early stage research on small samples. I was confused too by the Cochrane team's reference to plasmapheresis rather than HELP apheresis.

I would suggest we remember that at the centre of this is an individual with ME/CFS whose motive is to do something to help people with ME/CFS and other diseases. It's not her fault people at SOLVE and OMF misled her into thinking she had support from major US ME organisations, and on that...

Ah, OK, sorry, I missed your point.

Carmen Scheibenbogen has been running an ME/CFS clinic at the Charite for quite some time and has published research papers. She's well known as the leading German ME/CFS researcher. If you do a search on the forum you'll find lots of research threads. They also ran a conference a few months...

Excellent response. Thank you to the authors. If only one of the responses we've seen so far is to be published, I think this one is the most effective because it focuses, with evidence, on specific failings in the White et al article. I wonder whether they will respond or ignore it.

Thank you so much Anil. It's a wonderful interview. You are brilliant at explaining what very severe ME is like.

Easy to guess this comes from a department of Sports medicine and is published by a sports medicine journal. Exercise is, of course, the prevention and cure for everything. So they extrapolate data from healthy sporty people without Covid and ignore any contraindications provided by Covid...

I assumed #notonename meant: not one name.