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Thank you, that will be good. But I'm not actually asking about processes here. You say that no one recommended Kay to you. And you say that the patient reps on the writing team needed to have a history of interest in research in ME/CFS. Therefore, I assume you found out about that history by...

Long bows can only be easily drawn where there is a space. And the information I'd like to fill that space is Kay's qualifications to be writing a review of exercise as a treatment for ME/CFS as a patient representative. I think that's reasonable. Perhaps she is eminently qualified, but all I...

I see that Kay's twitter name says 'Operations Manager, ARNORNOC (Association of Royal Navy Officers Royal Navy Officers' Charity). Which is obviously nothing to be ashamed of, I'm not suggesting otherwise. And her tweets suggest that the navy is still a very big part of her life. So, I don't...

To the contrary, if you told us something about her views and her knowledge e.g. what she thinks about the CFQ and what her thoughts are about subjective outcomes of recovery in unblinded trials I would give what you say a lot of weight. I believe you to be an honest person who would not...

Possibly the definition of 'activist' is part of the problem? It seems to me that any person appointed to the writing team to represent people with ME/CFS should have a strong background and demonstrated skills in evaluating ME/CFS trials, really good links with some ME/CFS communities and an...

I'm not suggesting people from the US don't understand the perspective on the issues expressed in this forum, but even Medfeb, as good as she is, has a different outlook about the fundamental importance of the issue of subjective outcomes in unblinded trials than most who are active on this...

I note Kay's declaration of interest It goes a good deal deeper than 'Royal Navy'. Please read this thread - Etherington, who co-wrote a defence of GET with White is a Defence specialist in rehabilitation. Adverse outcomes in trials of graded exercise therapy for adult patients with chronic...

Reposting this link to the Cochrane announcement for people's convenience, and I'll add it to the first post of the thread. https://community.cochrane.org/orga...h-profile-reviews-pilot/cochrane-exercise-and

It seems unlikely to me @Hilda Bastian, that it is a coincidence that the only person with ME/CFS on the Cochrane exercise review writing team, someone who has not previously expressed any interest or shown any expertise in evaluating GET trials, has publicly expressed her thanks to the team at...

Yes. As someone said to me recently, the members of Science for ME earned their place at the table, for this review. Current members and those no longer with us are the reason there is a review. No organisation has a higher concentration of expertise in the evaluation of relevant papers; that...

So, of the two consumer reps on the 8 person writing team, one is @Medfeb who is great but is not a person with ME/CFS. Therefore, the only person who can speak first hand about the impact of exercise is the person who was specifically chosen to balance Mary's view, Kay Hallsworth. Her views...

The aim in recruiting the consumer reps was to have someone actively supporting GET for ME/CFS, to balance someone who does not support it. I think there's a high chance that anyone in the ME/CFS community who actively supports GET and has a profile high enough to come to the attention of...

Just further on the selection of ME/CFS Australia - recent financials available on the Australian companies register show Emerge (edit - the largest Australian ME/CFS organisation) had an annual income of $897,000 and an annual expenditure of $650,000. ME/CFS Australia Ltd had an income of...

I think the key thing is the people involved: So there's a group of authors: For the consumer reps, the aim was to have 'Different experiences/beliefs about exercise' represented. It's nice to see @Medfeb on the team, but having consumers with different beliefs about exercise for ME/CFS...

It's up! https://community.cochrane.org/organizational-info/people/central-executive-team/editorial-methods/projects/stakeholder-engagement-high-profile-reviews-pilot/cochrane-exercise-and

Do any of you know Nathan Fielder and his series 'Nathan for You'? His comedy isn't quite my thing but there's something about Peter White that makes me think of him. I'm not sure if it's his ability to get people to say that they have appreciated his help when you can see that they are...

Yep, they wheel out all of the unevidenced stereotypes. The reference to 'specific personality types' was particularly masterful, as it can mean whatever personality type they need it to mean. If it becomes clear that the research suggesting there's no link between a specific pain condition...

From the chapter: "The fact of their frequent co-occurrence [multiple types of pain] has significant research implications as it requires an explanatory model that is broader than focus on a specific end organ (stomach, back, head etc). It is not only the frequency of overlap of these entities...

That's a useful report, there are some great comments. I recommend clicking through to it. I hope the dissatisfaction of so many is a big push for change.

I have some involvement with the Australian ME/CFS Biobank and have contacted the team there about this.