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I found a pdf version of this great paper. The paper is short and summarises the problems with the BPS model as applied to disability, really well. https://ueaeprints.uea.ac.uk/id/eprint/58235/1/1351_Shakespeare.pdf

I was wondering what you folks think of this. It strikes me as the most comprehensive thing on ME/CFS I've seen to date ... and it's all in one place! I'm thinking of sending it to folk I know who are health professionals of various kinds. In your opinion, does this reflect well what we know...

If it is indeed referring to this paper from Kerr and Wessely: https://pubmed.ncbi.nlm.nih.gov/16049290/ "Association of chronic fatigue syndrome with human leucocyte antigen class II alleles", then Garner's position is very much in line with that of keeping his preferred group of researchers in...

Outstanding. Thank you.

The same person has posted under this thread that Garner has removed the post about Maeve.

I have just seen a very disturbing post from a Jenny Wilson on Dr HNG's Facebook page: "Yesterday, I read Prof Paul Garner's tweet that if only Dr Miller had been able to give Maeve CBT she would have lived! Today he is lecturing at King's College, London. Here is one of his slides."

Can anyone point me to some information on patient involvement in the design of the PACE Trial? I know Action for ME were involved (why them?) and were responsible for agreeing to waive the use of actometers part way through. Is there any info/links you could provide for me? Similarly, any...

Thank you Arvo, for taking the time to provide such a detailed and relevant response. I feel very reassured. You have raised some very good points and expanded my thinking a good deal. I will be having a conversation with Dr. Grama within the next couple of days. I now have many more questions...

Also, I think I'd struggle to facilitate any interviews with healthcare professionals. I tend to avoid them ... like the plague :)

Ileana did mention that it might be good for the student(s) to interview patient(s) directly. This project will be based in Amsterdam, The Netherlands. Later down the line, I might put out a call to our Dutch friends on here. I am less aware of the ME/CFS scene over there. (I'm from the UK.)

This has been SO HELPFUL. Thank you Arvo. You're so right. It does feel scary. I do feel insecure. I (probably) do know more than I realise. I am reasonably 'well' atm. I have time. (I don't have a formal job.) I would probably enjoy it and feel like I've helped to bring the field of ME/CFS...

Ileana is also interested in how such harmful practices affect women minorities neuro-diverse folk LGBTQ+ folk She is well aware of how quickly a person's real complaints can by circumvented if that person is a little different from 'the norm'. I think that this research project would like to...

Things Ileana and I have talked about over the years which piqued her interest: 1. Eminence over evidence How a powerful group of lobbyists managed to position themselves at the heart of ME/CFS research and hijack the agenda. How ME/CFS was reframed as a psycho-social (psychosomatic) ilness...

I was so hoping for a response like this. Thank you @Hutan !! I think this is a great idea. I will take this on if I have to ... but I still think I would be in above my head. Two options: A very knowlegeable person (better suited that me!) or A small team of folk who between them have a...

Here's the link (again) to the course: Participatory Action in Research and Education @adambeyoncelowe You would absolutely nail it! You tick all the boxes!

Someone I know, who is a lecturer and researcher at Amsterdam University, has asked me to be an external collaborator (‘co-creator’) in a course where students are taught to do research in collaboration with community members, tailored to actionable goals for the empowerment of the community. I...

Good point!

The article is so serious and heartbreaking. Yet in spite of this, this John Glasspool chap, still finds it in himself to provide a flippant comment: 'What about the people with “total allergy syndrome”. similar?' Seriously. What is wrong with these people? ... and he's not afraid to go on...

Greenhalgh really does avoid mentioning ME/CFS on purpose, doesn't she? The opening statement says unequivocally, "Long covid ... is a new disease", whilst she later cites Al-Aly & Topol. Both of these authors regularly reference the similarity with ME/CFS. She does some good work, but the...

More scholarly articles here: https://scholar.google.co.uk/citations?user=f9Hgom8AAAAJ&hl=en&oi=sra