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I agree questionnaires designed to elicit data on the listed psychological and behavioural characteristics of a child are totally inappropriate and intrusive for pwME. We haven't seen the questions, just the aspects they expect to elicit from them. It seems likely they were not designed to be...

They're in the Long Covid news subforum: Long Covid in the media and social media 2022 Long Covid in the media and social media 2023 news10.com Meet the Americans who still take COVID-19 precautions seriously If you mean this one, news from the USA, or if it seems significant new news, a...

So as not to divert this thread, I've responded in a spoiler.

@MelbME. I share Hutan's serious concerns about using psychobehavioural questionnaires on children with ME/CFS and their families. If my child had been intending to take part in an omics ME/CFS study and we'd been confronted with these questionnaires I would have withdrawn them from...

An important question. This reissuing a 5 year old review as if it were a new version (which is itself a minor revision of an older review) shouldn’t be allowed. It's unethical and surely fraudulent.

I don't think I've come across anyone else who describes PEM as you do. Of course I respect your diagnosis and description of your symptoms, I just think people should be aware that most people's descriptions of PEM, or a crash, include major reduction in the ability to function, not just not...

Threads here: Protocol for a scoping review of how people with ME/CFS use the internet (2024) Shortland et al. Lots of concerns expressed in the discussion. Review A systematic scoping review of how people with ME/CFS use the internet, 2023, Shortland We didn't discuss the paper.

Hi, welcome to the forum. Can you please give us more information on who is supervising this project and what their and your interest is in ME/CFS? From my understanding of social science research, mainly from reading published papers, it seems that in order to be regarded by supervisors and...

Sonya has made it clear to us that if someone wants to contribute to review of AfME materials, the best option is to put themselves forward to be on AfME's own patient advisory group. AfME have neither the staff time nor the inclination to run a separate advisory process on their drafts via S4ME...

That's why I suggested joining the forum before submitting their essay for publication. I think we have been quite helpful to students who ask questions and want to understand more, especially if they tell us what stage they are in learning. The problem comes when journals publish student...

Perhaps you might want to wait for the committee to get the project for producing S4ME resources launched, which is imminent, before suggesting more for us to do. Let's see how that goes.

Perhaps students in this situation could be encouraged to share their learning process and review writing process here, so we can give feedback before it reaches publication stage. They could do it on a members only thread if they don't want to make their learning process public. We all want...

There's also a problem of local and national groups 'going rogue'. My local group which I haven't been involved with for years, used to employ a part time benefits advisor who would visit at home and help fill in forms and attend appeal tribunals in support. I can't remember their funding...

I think we need to avoid confusing two issues. Yes, it's accurate to say pwME experience brain fog. But no, that doesn't mean the cause of that brain fog is inflammation. We don't know the biological basis of brain fog. There is a risk if we go to the doctor and say we have brain inflammation...

Oh dear, I do hope it turns out not to be BPS, it's concerning that they won't reveal to you want the recommendations are yet. Well done for fighting on.

@Oni, this post from @obeat on another thread may be helpful for you. It seems very sensible to have a list of your specific needs in such brief and clear form to take with you to discuss with the staff...

I don't think the focus in this article is on the unhelpful beliefs aspect of PACE and other trials. I thought they were focusing on the fact that pwME who adhere to GET therapy very well still don't get fitter or stronger, unlike healthy people who follow similar regimes. So the reference to...

I find it refreshingly readable. I didn't notice the grammar.

There weren't any healthy controls in PACE. It was a trial of CBT, GET and Adaptive Pacing. The control group was people with only standard medical care. All participants were diagnosed with CFS using Oxford criteria (disabling fatigue), they were randomly allocated to the 4 groups.

Me too. Members might not believe this, given how much I post, but I quite often delete my long incoherent rambles without posting them.