Patients with Chronic Fatigue Syndrome needed for new study - Keele University UK

adambeyoncelowe said:
I probably could get there, as it happens. But I dunno. Is it better to go and be heard? Or will they just twist what I say to their own ends, as usual? And how would they deal with questions such as, 'I think labels like MUS and FND actually obstruct patients from getting proper treatment and care. If patients with ME don't even respond to the same treatments, it's even more ridiculous to lump them in with patients from other diseases to give them all a one-size-fits-all treatment plan.'
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I could also possibly go to a meeting at Keele although 10am start really only something I consider doing for stuff like medical appointment if that’s the only time available or if I’m having work done at home when you have to go with builders hours

If they engage on the forum no need but if they don’t maybe would be worth trying to highlight reality at meeting. I don’t have any experience of ME Advocacy but prepared to give it a go if necessary maybe easier as a team @adambeyoncelowe. And if the meeting goes ahead let’s press for 12 noon start time
 
Esther12 said:
Chew-Graham was one of the FINE researchers, and pretty much everything I've seen from her on CFS has been terrible.

Here's Tuller's blog on FINE: http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/
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I find this perplexing, as in do they think everyone has to get permission to talk about PACE?
An update on something else: I want to thank the public relations manager from Queen Mary University of London for clarifying his previous assertion that I did not seek comment from the PACE investigators before Virology Blog posted my story. In an e-mail, he explained that he did not mean to suggest that I hadn’t contacted them for interviews. He only meant, he wrote, that I hadn’t sent them my draft posts for comment before publication. He apologized for the misunderstanding.

I accept his apology, so that’s the end of the matter. In my return e-mail, however, I did let him know I was surprised at the expectation that I might have shared the draft with the PACE investigators before publication. I would not have done that whether or not they had granted me interviews. This is journalism, not peer-review. Different rules.
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adambeyoncelowe said:
I probably could get there, as it happens. But I dunno. Is it better to go and be heard? Or will they just twist what I say to their own ends, as usual? And how would they deal with questions such as, 'I think labels like MUS and FND actually obstruct patients from getting proper treatment and care. If patients with ME don't even respond to the same treatments, it's even more ridiculous to lump them in with patients from other diseases to give them all a one-size-fits-all treatment plan.'
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I wouldn't bother. They can come here if they're really interested. And if they're not, there's no point in going there. I suspect they've made up their minds and are now looking for evidence for their MUS FND nonsense to further their careers. If you go you'll most likely be shoe-horned into whatever narrative of the moment they feel like assigning to you - vexatious for asking about PACE, criminal for throwing a coffee cup, asked to leave for "harrassment" as @dave30th was, etc etc.

Lead researcher, Professor Carolyn Chew-Graham said: “At the moment, there is limited understanding of how best to support patients with CFS/ME, whether it’s in medical consultations, social care or everyday life.
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The only people who have a limited understanding of how best to support patients with CFS/ME are those who've had their fingers in their ears for the last 30 years. The information is out there, listen to the sufferers or talk to the real experts, you don't need to fund a new "study".

At present, the condition is not well understood, and patients receive conflicting advice which can be very frustrating for them.
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There isn't really any conflicting advice, there's what sufferers and real experts have taught themselves over the years, and there's the noise from the discredited PACE trial. Let's not pretend that there's still a debate here.

“Involving patients in the study is vital to ensure that we gain a better insight into the experiences and needs of patients with CFS/ME
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Cancelling the study and taking your fingers out of your ears would be much more helpful.

I would have no part in validating this crap with my attendance, even if I could go.

The School of Primary Care Research is funding the study which involves looking at published studies that have used interviews and group discussions to specifically examine how people with CFS/ME experience different kinds of support.
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Interviews, group discussions, let me guess, questionnaires too?
 
TiredSam said:
I wouldn't bother. They can come here if they're really interested. And if they're not, there's no point in going there. I suspect they've made up their minds and are now looking for evidence for their MUS FND nonsense to further their careers. If you go you'll most likely be shoe-horned into whatever narrative of the moment they feel like assigning to you - vexatious for asking about PACE, criminal for throwing a coffee cup, asked to leave for "harrassment" as @dave30th was, etc etc.


The only people who have a limited understanding of how best to support patients with CFS/ME are those who've had their fingers in their ears for the last 30 years. The information is out there, listen to the sufferers or talk to the real experts, you don't need to fund a new "study".


There isn't really any conflicting advice, there's what sufferers and real experts have taught themselves over the years, and there's the noise from the discredited PACE trial. Let's not pretend that there's still a debate here.


Cancelling the study and taking your fingers out of your ears would be much more helpful.

I would have no part in validating this crap with my attendance, even if I could go.


Interviews, group discussions, let me guess, questionnaires too?
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As it happens, I'm in a crash at the moment, so I don't think I'll bother with this.
 
TiredSam said:
I suspect they've made up their minds and are now looking for evidence for their MUS FND nonsense to further their careers.
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No doubt true, but if I lived close to this study and wasn't too unwell, I think I'd probably go, just for the fun of asking questions. Maybe I'd put invitations to the forum on the seats.

The researchers won't be the only audience at the meeting.
 
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