UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.
- Thread starter Jo Best
- Start date
IiME's site is like that for all of their content, as far as I know - you can't copy and paste, you have to take a screenshot of what you want to share.
@Valentijn
You are obviously not having the problem I have with the MEAction submission in that each line of the document is taking two moves of the screen which is slowing down my reading considerably which is making it hard to engage with the content. Am not experiencing this with any of the other submissions.
Would you, or any one else, know how I can change this so that the pages flow easily? Apologies- computer skills very limited.
EDIT: added MEAction on line 1
You are obviously not having the problem I have with the MEAction submission in that each line of the document is taking two moves of the screen which is slowing down my reading considerably which is making it hard to engage with the content. Am not experiencing this with any of the other submissions.
Would you, or any one else, know how I can change this so that the pages flow easily? Apologies- computer skills very limited.
EDIT: added MEAction on line 1
I'm not having any issues with their submission. Can you tell if the page is taking some time to fully load, that could perhaps explain the issue that you describe?
Nice job!
I saw this at the bottom:
"PLEASE NOTE:
NICE reserves the right to summarise and edit comments received during consultations, or not to publish them at all,
if NICE’s reasonable opinion is that the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate."
It will be interesting to see what they cut out.
I saw this at the bottom:
"PLEASE NOTE:
NICE reserves the right to summarise and edit comments received during consultations, or not to publish them at all,
if NICE’s reasonable opinion is that the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate."
It will be interesting to see what they cut out.
@AndyPR @slysaint
Thank you both for replying.
Andy- page seems fully loaded, just requiring two moves to read a line. Surprising how this affects comprehension of the content.
slysaint- cannot see anything that looks like a little open book.
Will leave this for now. There is plenty else to read!
Also waiting for the MEA response.
Thank you both for replying.
Andy- page seems fully loaded, just requiring two moves to read a line. Surprising how this affects comprehension of the content.
slysaint- cannot see anything that looks like a little open book.
Will leave this for now. There is plenty else to read!
Also waiting for the MEA response.
Nice job!
I saw this at the bottom:
"PLEASE NOTE:
NICE reserves the right to summarise and edit comments received during consultations, or not to publish them at all,
if NICE’s reasonable opinion is that the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate."
It will be interesting to see what they cut out.
I saw this at the bottom:
"PLEASE NOTE:
NICE reserves the right to summarise and edit comments received during consultations, or not to publish them at all,
if NICE’s reasonable opinion is that the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate."
It will be interesting to see what they cut out.
Forward ME's response
http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf
http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf
This is weird @Valentijn,
Despite being very non tech I seem able to copy and paste! Still says the same as your screen shot.
Summary of Recommendations
Despite being very non tech I seem able to copy and paste! Still says the same as your screen shot.
Summary of Recommendations
- Oxford criteria and any research based on them must be dropped from inclusion in any review of ME.
- The PACE Trial has been shown to be totally flawed and any references to it must be removed from the NICE update review.
- CBT/GET must be dropped as recommendations for treatment of ME. Leaving CBT in and removing GET alone is pointless.
- Cochrane must not be used for any review of ME guidelines as it is seen as compromised and biased.
- An update to the guidelines must be made taking into account the above
or - A totally new set of guidelines must be created.
- In doing this it would be prudent to separate ME guidelines from idiopathic chronic fatigue.
- Failure to update or revise the NICE guidelines should be a cause for NICE to be investigated by parliamentary scrutiny.
Brevity in submissions for publication by entities that are less than wholly on our side is vital as otherwise the meat will be edited out, you can guarantee. Have seen this in the past with Prof. Malcolm Hooper's letters to newspapers in response to bad articles - he does (or at least used to) make them too discursive, so the papers were able to publish with all the main points removed.
I also suspect the lack of punch in the BBC's recent radio documentary on sectioning of children with ME was due to editorial decisions and was not the fault of the journalist.
I also suspect the lack of punch in the BBC's recent radio documentary on sectioning of children with ME was due to editorial decisions and was not the fault of the journalist.
I'm not 'blown away' by this response but then I suppose it was a 'group effort'.
Still think that a key point (which they sort of say) should have been that the whole NICE/NHS approach to treatment is based on a 'theory' of deconditioning (which has not been proven time and again) and which the patients/general public are not informed about.
eta: to me it comes across largely as a UK vs US thing.
Still think that a key point (which they sort of say) should have been that the whole NICE/NHS approach to treatment is based on a 'theory' of deconditioning (which has not been proven time and again) and which the patients/general public are not informed about.
eta: to me it comes across largely as a UK vs US thing.
This is like watching the Eurovision Song Contest (or maybe a general election!) with all the results coming in.
Great work @Keela Too and Team Hope 4 ME & Fibro NI!
I don't think it matters too much how much NICE decides to edit under the extraordinary circumstances.
The important thing is that all these submissions are available to be referenced online.
Great work @Keela Too and Team Hope 4 ME & Fibro NI!
I don't think it matters too much how much NICE decides to edit under the extraordinary circumstances.
The important thing is that all these submissions are available to be referenced online.
One of the links within the IiME submission was a salutory reminder that NICE has had the opportunity to be aware of alternative expert views from UK and other countries from the outset and just how political the guideline is, far removed from evidence-based clinical excellence: http://www.investinme.org/Article-361 Statements of Concern CBT-GET JR Feb09.shtml
I wonder how many more of their guidelines are so misguided or is CG53 unique in this regard?
I wonder how many more of their guidelines are so misguided or is CG53 unique in this regard?
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