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Excellent idea.

Why is your sick child not behaving like an idealised perfect healthy child? Er, well, they're sick, innit. This stuff is so harmful to sick children.

Thanks Peter.

Thanks, @Dolphin. Does anyone know whether anything was published?

It's concerning that there's an LP trial happening and more planned.

Hi @MelbME. Thank you for your continuing engagement here and your willingness to listen to criticism and suggestions. All too rare among researchers, we find. Have I got this right? As a non clinician, the only way you could access a cohort of child patients for your omics study was through a...

I haven't read all the posts on this thread, I'm just responding to the abstract and media article. I guess people will respond differently to this. I can only speak for myself. My response is a resounding NO. Thus is not for me. The idea of being asked to write, draw and colour in on a...

I think the studies do show that non pacing is ineffective. If it were effective even a badly run study would have had better results than, for example PACE. And the surveys and published analysis of them show it's harmful.

I think the trials of exercise therapy are helpful in the sense that they only find small transient subjective improvements and no objective improvement, including no increase in return to work. The large surveys of patients experiences of treatments all show GET as the worst and most harmful...

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been intending to take part in an omics ME/CFS study and we'd been confronted with these questionnaires I would have withdrawn them from...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.