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

[Keela Too]

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 miguided or is CG53 unique in this regard?

Jo reading this document it is clear NOTHING has changed. No logical arguments have been heard. Everything that is being said now has been said before...

... which was actually before I even came down with ME!

It's a bit sad, cos we all scribble away at our responses, fine-tuning those arguments, hoping that we can weave exactly the right combination of words and facts to bring about change....

... but years afterwards ME peeps are still doing the same thing. Hoping, just hoping that some-one in the right place will recognise the truth.

 

[slysaint]

Tymes Trust to post their contribution soon...........looking forward to it!

Tweet from Jane Colby a couple of weeks ago
Jane Colby‏@JaneCColby

"TREATMENT" FOR ME : (#CBT & #GET) WHAT DO WE THINK OF IT SO FAR?

98% Rubbish
2% Superb

101 Votes final result

7:41 pm - 13 Jul 2017

She has also posted this link to research they funded in 2010:
http://www.tymestrust.org/pdfs/ttmeisphysical.pdf
"
Biochemical and Vascular
Aspects of Pediatric
Chronic Fatigue Syndrome"

Don't want to take this thread off topic but had not heard of this research.

 

[Jo Best]

She has also posted this link to research they funded in 2010:
http://www.tymestrust.org/pdfs/ttmeisphysical.pdf
"
Biochemical and Vascular
Aspects of Pediatric
Chronic Fatigue Syndrome"

Don't want to take this thread off topic but had not heard of this research.

That study was used as an example of 'new evidence' provided to the ethics committee when raising concerns about Esther Crawley's SMILE trial. It's also an example of promising studies never apparently followed up.

 

[Jo Best]

Jo reading this document it is clear NOTHING has changed. No logical arguments have been heard. Everything that is being said now has been said before...

... which was actually before I even came down with ME!

It's a bit sad, cos we all scribble away at our responses, fine-tuning those arguments, hoping that we can weave exactly the right combination of words and facts to bring about change....

... but years afterwards ME peeps are still doing the same thing. Hoping, just hoping that some-one in the right place will recognise the truth.

Sally, I think it a lot of them recognise the truth, they're just either too tightly bound by the system or protagonists within the system. The 'Wessely school' have had some 30 years to weave their web. It is very sticky and woe betide the unwary that get caught in it. I was astonished to find out just some of the extent of this by seeing the establishment close ranks in defence of the SMILE trial. I think we will win though and the end is sight. I often think of the Gandhi quote, "First they ignore you, then they laugh at you, then they fight you, then you win."
They've been fighting us for a few years now and we will win. Then they'll make out like the heroes after all. They're very good at playing twist and spin. That's ok I guess, as long as patients will no longer have to suffer.

 

[Jenny TipsforME]

@Binkie4 sorry you're having trouble

There are two versions on the MEAction website (PDF or HTML)

What about this? This was how we actually wrote it

https://docs.google.com/document/d/1oGY2Ybtmo96OiKW3xVu6fXEqLPWDH7hHIW0bL4RzzKg

 

[Binkie4]

@Jenny TipsforME

Thank you hugely. Can read it clearly now. More study tomorrow.

 

[Barry53]

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

We were disappointed when reviewing the evidence for this surveillance document, to find that the review panel only assessed the abstracts of the publications they considered, rather than the full documents. The quote below demonstrates that the team were not even prepared to look beyond the abstract when they had a question in mind about one of the studies. Quote from page 12 of 56 of the document21: “However, it was not clear from an assessment of the abstract if diagnostic validity and reliability were tested.” This lack of curiosity would not be acceptable in a student essay, so why it is acceptable here is unclear. This suggests that the decision not to review CG53 is based only on a shallow review of the evidence, and that little effort has gone into the appropriate investigation of the situation surrounding ME. Therefore, a more thorough and meaningful review is required.

These comment forms are impressively educational in their own right, though when it comes to NICE the corollary is that education is only as good as the student's willingness to learn. Dead impressed with this response @Keela Too. And the above is spot on ... how dare NICE make such life-impacting decisions on behalf of so many thousands of sick people with such callous and casual disregard for vital detail, possibly even lacking the competence to attend to the detail. It just beggars belief ... or should do. And recognising a clear failing, then themselves failing by not following it up. The lack of public accountability is astonishing. How do these people get themselves into such positions of power anyway? Feels like there should be some form of publicly visible election process or something.

 

[Deepwater]

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!

NICE says: "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."

If NICE wishes to be able to demonstrate that editing has really been done on grounds of volume, then NICE should be prepared to tell stakeholders the upper word limit (total and/or limit per section) to which they are working. The relative voluminosity of the various responses is not a matter of "reasonable opinion" but is measurable. Claiming to have made a "reasonable" guestimate is not acceptable as it is open to abuse and is likely to result in unfairness even if not deliberately abused.
Any stakeholders willing to ask the question?

And, to take NICE's excuses for doctoring responses a little further: any stakeholders able to get a good legal opinion as to whether publication of their material would be lawful?

As for NICE's third excuse for snipping text - that they deem it "otherwise inappropriate" - that is simply a charter for unbridled censorship and should not be accepted.

 

[Jenny TipsforME]

@Deepwater and @Keela Too

Love that long letter quote. I think it particularly applies to ME. I don't really find my ability to write is impaired in volume but reading and editing definitely is.

I did query the voluminous thing asking for indication of the real word count. They didn't give one, as long as what we wrote was concise. I think it might be aimed at repetitive, unstructured feedback. We'll find out!

Another member of our team checked previous consultation responses on the NICE website. Invest in ME had a 29 page one on there apparently without having been edited.

 

[Jenny TipsforME]

BTW you can get gist of the ME Action response from

 

[Keela Too]

. . . Dead impressed with this response @Keela Too. . . . ..

Thank you.. I did wonder for a moment if the reference to student essays was a bit cheeky, but decided in the end it was the truth. I was a biology lecturer in Further Education prior to ME

 

[Jenny TipsforME]

NICE are asking for feedback on a new conflict of interest policy, I thought everyone on this thread might like to give feedback

https://www.nice.org.uk/news/articl...ial&utm_source=twitter&utm_campaign=coijuly17

 

[Barry53]

Thank you.. I did wonder for a moment if the reference to student essays was a bit cheeky, but decided in the end it was the truth. I was a biology lecturer in Further Education prior to ME

It was, but just the right amount! And exactly the truth, which is why it had to be said. Something needs to make them stop and get their heads out from you-know-where.

 

[Barry53]

NICE are asking for feedback on a new conflict of interest policy, I thought everyone on this thread might like to give feedback

https://www.nice.org.uk/news/articl...ial&utm_source=twitter&utm_campaign=coijuly17

I'm glad to see the draft still includes:-

14. Interests that are not relevant, or could not be perceived to be relevant to NICE’s work, need not be declared. This could include, for example, membership of sports and recreation societies, or local community groups. For the avoidance of doubt, the fact that an individual is living with a disease or condition relevant to the matter under discussion, or has a family member who is in that position, is not regarded as an interest and does not need to be declared. Where there are no interests to declare, a ‘nil return’ should be made.

[My bold]

 

[slysaint]

NICE are asking for feedback on a new conflict of interest policy, I thought everyone on this thread might like to give feedback

https://www.nice.org.uk/news/articl...ial&utm_source=twitter&utm_campaign=coijuly17

This is a Snap survey; no need to register and when it gets to the what organisation bit you can just put patient.
https://www.snapsurveys.com/wh/s.asp?k=149848269919

 

[Keela Too]

NICE are asking for feedback on a new conflict of interest policy, I thought everyone on this thread might like to give feedback

https://www.nice.org.uk/news/articl...ial&utm_source=twitter&utm_campaign=coijuly17

Interesting that the draft also includes

" Non-financial professional and personal interests:
Where an individual obtains a non-financial professional or personal benefit, such as increasing or maintaining their professional reputation. This can include situations where the individual:
 Is an advocate for a particular group or is a member of a lobbying or pressure group with an interest in health or social care.
 Holds office or a position of authority in a professional organisation such as a Royal Collage, a university, charity, advocacy group or any other organisation in the health, public health or care sector.
 Has published a clear opinion, reached as the conclusion of a research project, about the effectiveness of an intervention under review.
 Has expressed a clear opinion about the matter under consideration, which could reasonably be interpreted as prejudicial to an objective interpretation of the evidence.
 Has authored or co-authored a document submitted as an evidence publication to the relevant NICE advisory committee."

I think this would mean that as a simple patient who has never before expressed an opinion, you have no interest to declare - but I think I would tick quite a few of those boxes.

 

[JohnM]

I wonder how many more of their guidelines are so miguided or is CG53 unique in this regard?

A question I've been asking myself since starting to read through the manual for developing Nice guidelines -
Process and methods [PMG20] - and found the following extracts which may provide an answer to your question:

13.1 Checking that published guidelines are current
..
When safety concerns are highlighted, the need to update recommendations is assessed on a case‑by‑case basis without the need for a formal check.
..
The process broadly relies on assessing 2 elements that influence the decision to update a published guideline:

• 
  
  
  • intelligence gathering on the perceived current relevance of the guideline, which may include responses to questionnaires, information on guideline and quality standard implementation, external enquiries about the guideline recommendations, internal intelligence (such as NICE's guideline issues log), related NICE guidance and quality standards (including placeholder statements in NICE quality standards), medicines licensing information, relevant national policy, and
  • abstracts of primary or secondary evidence that has been published since the end of the search period for the guideline, with critical appraisal of key papers.

At each time point, decisions on the need to update a guideline are based on a cumulative assessment of the relevant research evidence published since guideline publication.
..

Note the reference to 'critical appraisal' is applied to key papers only. I missed that on my first reading.

I also posted a similar comment a couple of days back on David Tullers article - Trial by Error: The NICE guidelines, and more on the CDC - sufficient to say that I believe NICE guidelines, and by extension NICE, are not fit for purpose. As many have noted, consideration of an abstract, without critical appraisal of the full paper, is no way to conduct and proclaim they are promoting evidence-based guidance with regards to health and social care.

Many guidelines will have been developed prior to the latest update to PMG20, but the potential for updated guidance for other conditions to be 'misguided' would not make CG53 unique, as it may be now?

Been skimming through the full guidance document CG186 (October 2014) for the management of multiple sclerosis in primary and secondary care, by way of comparison to CG53 .. eye-opening to say the least. It would appear that the CG186 CDG did review and critically appraise many of their full papers, not just 'key papers'. I would hope that the apparent rigour shown in the development of CG186 is not lost, next they review their guidelines.

Wishing everyone improved health and every happiness, John

 

[JohnM]

I think this would mean that as a simple patient who has never before expressed an opinion, you have no interest to declare - but I think I would tick quite a few of those boxes.

https://www.nice.org.uk/news/articl...ial&utm_source=twitter&utm_campaign=coijuly17

“To maintain people’s trust we need to manage interests and identify potential conflicts of interests effectively. We need to make sure that members of committees declare relevant interests so that any possible competing interests or risks of bias can be identified. This is an essential part of our process to develop robust guidance of the highest quality.”

Only applies to members of committees on my reading .. would like to see that conflicts of interest are more robustly applied to topic experts in the same manner.

Edited: to upload current 'Conflicts of Interest Policy'

 

[Keela Too]

Well there you go @JohnM
I'm secretary to the charity Hope 4 ME & Fibro NI (and yeah I think we could also be a lobby group )
Have submitted a response to NICE - just yesterday as the named commentator &
I have expressed some clear opinions on these issues when writing on my blog.. which is in the public domain...

So I have interests I would have to declare...... if I were in that position of course... but there it is.

 

[Jenny TipsforME]

I don't have the energy to give feedback/read properly myself right now, but I wonder how you can successfully deal with conflict of interest in a polarised field? If everyone declares their interests you get two camps. Potentially everyone has a bias either way. I doubt any experts escape conflict of interest in terms of professional benefits.