UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

[AndyPR]

And AfME's response
https://www.actionforme.org.uk/news/nice-guidelines-on-cfs/m.e.-must-be-reviewed/

 

[Binkie4]

MEAction's response is proving difficult to read because each line takes more space than my iPad allows. Is this a formatting problem just on tablets, or does it cover all appliances?

Is there a way to rectify this for a technophobe?

 

[Valentijn]

Hope 4 ME & Fibro NI response:
http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf

Very impressive. I was nearly cringing on NICE's behalf

 

[Valentijn]

And AfME's response
https://www.actionforme.org.uk/news/nice-guidelines-on-cfs/m.e.-must-be-reviewed/

Wow, they actually come out against CBT and GET being recommended:

Our response to their consultation states:

• there is not a conclusive evidence base for treatments for M.E., including those recommended in the guideline, such as cognitive behaviour therapy (CBT) and/or graded exercise therapy (GET).
• the current evidence base has led major international health agencies, including the Centers for Disease Control and Prevention in the US, to alter their guidance regarding CBT and GET.
• NICE has an ethical obligation to present a full, accurate and balanced picture of current international clinical practice when it comes to managing and treating M.E.

This decision would have serious implications for patients’ access to medical care. Retaining the 2007 guideline would mean that:

• clinicians would not be informed of the inconclusive and disputed nature of the evidence on the effectiveness of CBT and GET
• therefore patients will not have equal access to other healthcare that could benefit their health, such as pharmacological treatments or other symptom management approaches.

 

[Valentijn]

Responses to NICE from IiME
http://www.investinme.org/IIMER-Newslet-17-07-04.shtml

They have a good summary, but for some reason I can't copy-and-paste it. So here's a screen grab:

 

[AndyPR]

They have a good summary, but for some reason I can't copy-and-paste it. So here's a screen grab:
View attachment 22628

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]

and MEAction
http://www.meaction.net/2017/07/23/nice-2017-response/

Very nice layout with lots of sources, charts, and tables to back up the points being made. Well worth a read, and easy to read. It really hammers home the biomedical evidence which NICE tries to ignore.

 

[Binkie4]

@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

 

[AndyPR]

@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

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?

 

[slysaint]

Hope 4 ME & Fibro NI response:
http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf

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.

 

[slysaint]

@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

Do you have a Reader View toggle (might look like a little open book)?

 

[Binkie4]

@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.

 

[Keela Too]

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.

LOL - I'm guessing most of our response will be cut... it did get long in the end!

 

[AndyPR]

Forward ME's response
http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf

 

[MEMum]

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

• 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.

 

[Deepwater]

LOL - I'm guessing most of our response will be cut... it did get long in the end!

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.

 

[slysaint]

Forward ME's response
http://www.forward-me.org.uk/Reports/10 year surveillance (2017).pdf

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.

 

[Keela Too]

Brevity in submissions for publication by entities that are less than wholly on our side is vital . . ..

There is a lovely quote from some author...

Sorry about the long letter, I didn't have time to write a short one.

I think that applied in this situation!

 

[Jo Best]

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.

Hope 4 ME & Fibro NI response:
http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf

 

[Jo Best]

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?