NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

[lilpink]

It's very telling they haven't published or used that data as evidence to back up their claims.

They have been publishing NOD data tbh. There's an issue with that of course, because as has been acknowledged before the NOD is a 'service evaluation' and therefore should need extra ethical approvals to be used as 'research' and some of its offerings have even called themselves 'research' in their respective publications. Plus there is the issue of the REC reference which has been used, including for an adult NOD paper, which refers to a longitudinal paediatric service evaluation.

 

[anni66]

Enjoy

Is there a link for this- kind of post that would do well on social media

 

[Valentijn]

Is there a link for this- kind of post that would do well on social media

https://www.youtube.com/watch?time_continue=1&v=YHkM60tB_a0

 

[AndyPR]

Is there a link for this- kind of post that would do well on social media

Val has answered this already but for reference, in the post where the video is first shared, a curved arrow (Share button) should appear top right of the video, click on that and that will show you the URL for the video that can be copied.

 

[anni66]

Val has answered this already but for reference, in the post where the video is first shared, a curved arrow (Share button) should appear top right of the video, click on that and that will show you the URL for the video that can be copied.

Thanks- no coffee yet this morning .

 

[lilpink]

Times, today, 25th Sept. Tom Whipple seems to be one of the rare exceptions who doesn't simply spout SMC prescribed press releases.

 

[Mrs Sowester]

Did you see which page it was on @lilpink ?

 

[Ritto]

Did you see which page it was on @lilpink ?

Page 4 taking up about a third of the page. Lovely big headlines

 

[Mrs Sowester]

Thanks for that happy info @Ritto that's really prominent. Fantastic!

 

[Barry53]

View attachment 24050

Times, today, 25th Sept. Tom Whipple seems to be one of the rare exceptions who doesn't simply spout SMC prescribed press releases.

Well done Tom Whipple!

As always of course, claims for "evidence-based treatments" should come with a health warning that they can, and sometimes are, cr@ppy-evidence-based treatments; only as good as the quality of the evidence itself. The BPS proponents love citing their "evidence-based treatments", as if that says it all ... it must therefore be a "great great trial". But it is a subjective interpretation of the very word "evidence". They just love their subjectivity.

The above article is well balanced, and hopefully most people will see where TC is coming from in the last two paras.

NICE reporting back in 2020!!! I didn't realise it was going to take that long!

 

[lilpink]

CBT doesn't even work for 'mental health' issues ... so how it can correct an neuro-immune disease whoever knows?:

http://www.dailymail.co.uk/health/a...-term-solution-says-leading-psychologist.html

 

[Cheshire]

Trial By Error: NICE Rejects Current Guidance, Plans “Full Update”

Let’s give credit where it’s due. Apparently someone with decision-making authority at the National Institute for Health and Care Excellence (NICE) has a grasp on reality and is willing to challenge the claims of the biopsychosocial ideological brigades. That’s the only logical explanation for last Wednesday’s welcome but unexpected announcement that the agency would pursue a “full update” of the guidance for the illness it calls CFS/ME. From what I gather, that means NICE will essentially start the whole guidance development process from scratch.

http://www.virology.ws/2017/09/25/trial-by-error-nice-rejects-current-guidance-plans-full-update/

 

[Cheshire]

From David Tuller's piece:

I might be too optimistic, but I think the NICE decision is a game-changer. It suggests that the PACE authors and their colleagues, despite their enormous influence, have lost control of the narrative—even on their home turf. They can no longer count on those in powerful positions to provide monolithic support for their bogus claims that CBT and GET are effective treatments. That doesn’t remotely mean that the struggle is over. There are lots of remaining hurdles—especially the central task of ensuring that any new guidance is based on sound evidence. But this is still a significant moment in the ongoing demise of the PACE/CBT/GET paradigm.

The NICE decision is a slap in the face to the PACE authors and Sir Simon Wessely, who have routinely protrayed critics as vexatious, irrational and dangerous. It is also a possible set-back for Professor Crawley, who served on the 2007 guidance committee and believes PACE is a “great, great” trial. The consultation document highlighted Professor Crawley’s ongoing FITNET-NHS study of Internet-delivered CBT as an important future source of data. (Gee, I wonder who promoted the importance of FITNET-NHS to the surveillance team?) Since last week’s decision suggests that NICE is aware of and concerned about the methodological flaws afflicting the CBT/GET research field, FITNET-NHS could turn out to be irrelevant to the new guidance.

 

[Sean]

I might be too optimistic, but I think the NICE decision is a game-changer.

There isn't much comfort in it for the BPS crowd.

 

[may_days]

I admit I haven't the foggiest about the NICE guideline process, so I hope someone can set me straight. If the guideline is updated in 2020, does that mean any new research published before then won't be included? Or is research taken on board and added as it is published? My concern is if there is game changing research before then, will we be stuck with BPS CBT/GET recommendations until the formal review process is done? (Apologies if this has been answered, brain fog)!

 

[Invisible Woman]

I admit I haven't the foggiest about the NICE guideline process, so I hope someone can set me straight. If the guideline is updated in 2020, does that mean any new research published before then won't be included? Or is research taken on board and added as it is published? My concern is if there is game changing research before then, will we be stuck with BPS CBT/GET recommendations until the formal review process is done? (Apologies if this has been answered, brain fog)!

I understand it to mean that the review process & recommendations won't be completed until 2020.

So, presumably, until then the guidelines remain as they are.

 

[Binkie4]

@Invisible Woman

Unless we can persuade NICE that there is sufficient evidence that graded exercise is so unsafe that it should be withdrawn. We ( DH) wrote at the weekend to Sir Andrew Dillon.

NY Health Commissioner wrote to 85,000 doctors in May that CBT and GET should be withdrawn.

 

[Invisible Woman]

@Invisible Woman

Unless we can persuade NICE that there is sufficient evidence that graded exercise is so unsafe that it should be withdrawn. We ( DH) wrote at the weekend to Sir Andrew Dillon.

NY Health Commissioner wrote to 85,000 doctors in May that CBT and GET should be withdrawn.

Hi @Binkie4. Not sure why your response is directed at me?

I couldn't agree more - the sooner GET and PACE-style CBT are gone the better. I don't believe I have ever said otherwise.

Well done on the letter to Sir Andrew Dillon btw

 

[Binkie4]

@Invisible Woman

Apologies- I was just completing your sentence- our thoughts were so in line. It was probably clumsily written.

Am just coming out of a crash, and it's late.8pm!!!

 

[Invisible Woman]

No worries @Binkie4.

My own brain fog is probably not helping!

Time to put my keyboard up for the night too I think