NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

MEMarge said:
Exactly! I will try and find out roughly how many CYP were recruited, next Tues at AfME AGM. I have a nasty feeling it may be quite a small number, but the Parents' Facebook group have also conducted their own survey for submission to NICE.

I will also ask AfME re the ME info video by Emily Beardall and why it recommends GET.
They are sharing the results of their latest survey of PwME, which will hopefully show serious concerns re GET, so hopefully I can link in to that.
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The 2 year recovery period is also a misnomer and causes issues - Rowe et al and International paediatric primer suggest recovery over 4-6 years possible and not the 80% rate, If you could query this too that would be brilliant - thanks
 
A big thank you to everyone on the thread who have made suggestions.

Please note that MEAction UK is reliant on a small number of healthy volunteers doing this. Many of them have also been very busy with the survey for NICE and collating responses to very tight deadlines.

I have tried to help out by forwarding the relevant ones that were not already on their list, in the last couple of weeks. These may or may not make the final copy. With my limited available time and tech ability, I may have missed some, but have done my best.

As suggested earlier in the thread, please do submit your own suggestions, if they are relevant to the 3 areas mentioned in the initial post of this thread.

Let's all hope that the hard work done by patients and advocates to provide evidence for the NICE process makes a difference.
In particular, that those involved with clinics can begin to grasp why there is such a disconnect between their views and the lived reality of people with ME.
 
Got our submission in yesterday - phew. Rather glad it's done!

You can read the full thing here: https://www.meaction.net/wp-content...ICE-ME-CFS-call-for-evidence-consultation.pdf

And please feel free to share our article about it: https://www.meaction.net/2019/10/17/nice-called-for-evidence-read-meaction-uks-response/

Our full response totals 111 studies, surveys and trials. It includes 19 studies demonstrating exercise leads to abnormal physiological responses in people with ME. 18 surveys of people with ME, and one meta-analysis of surveys demonstrating the harms of GET and ineffectiveness of CBT. And more on impaired cognitive functioning, early mortality, monitoring of children with ME, comorbidities and common but under-investigated symptoms.
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Wanted to say another mega thanks to all those who proposed stuff to include - there's a thanks to S4ME in the article itself too.

Also got the survey results written up into a report and submitted, but will be launching those with a separate article properly later today (about 3pm). Sad findings, albeit mostly expected, and hard reading through so many comments of how people have been terribly treated :(

Been a lot of work and I'm gonna be taking some time hopefully away from my laptop after today, so probs won't be very responsive for a little while. Take care all.
 
Gecko said:
Got our submission in yesterday - phew. Rather glad it's done!

You can read the full thing here: https://www.meaction.net/wp-content...ICE-ME-CFS-call-for-evidence-consultation.pdf

And please feel free to share our article about it: https://www.meaction.net/2019/10/17/nice-called-for-evidence-read-meaction-uks-response/
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There looks like there is a lot of useful information in this. Thanks to everyone involved.

Minor point:
Everything seems to be called "published". I think by published they mean something that is in an academic publication e.g. journal or academic book (or perhaps any book). Items simply on websites such as those created by ME charities I think would likely be seen as "unpublished material".
It seems I was wrong about the "published" point, at least in this instance.
 
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Dolphin said:
There looks like there is a lot of useful information in this. Thanks to everyone involved.

Minor point:
Everything seems to be called "published". I think by published they mean something that is in an academic publication e.g. journal or academic book (or perhaps any book). Items simply on websites such as those created by ME charities I think would likely be seen as "unpublished material".
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Good point. We've sent a follow up email just to clarify and make sure they've got everything needed - no response yet but can't imagine they'd reject a submission because of that!

Thanks for the postive feedback all.
 
Dolphin said:
I think by published they mean something that is in an academic publication e.g. journal or academic book (or perhaps any book).
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I am not sure about that. Increasingly when a do a citation list in a paper I find myself just putting URLs. Key bits of information are not necessarily in journals or books. I think something on the net is 'published' although that may not be what was meant in this case.
 
Dolphin said:
There looks like there is a lot of useful information in this. Thanks to everyone involved.

Minor point:
Everything seems to be called "published". I think by published they mean something that is in an academic publication e.g. journal or academic book (or perhaps any book). Items simply on websites such as those created by ME charities I think would likely be seen as "unpublished material".
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I sent an email to NICE to ask just this question. The reply was that it is "published" if it appears on a website and is not restricted to medical journals.
 
Jonathan Edwards said:
I am not sure about that. Increasingly when a do a citation list in a paper I find myself just putting URLs. Key bits of information are not necessarily in journals or books. I think something on the net is 'published' although that may not be what was meant in this case.
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The trouble with using URLs is that they often change. I have found this in many reference lists, etc., that I have done.
 
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