NICE guidelines: Final scope and equality impact assessment published

I met Mike. He did a cytokine study, funded by the MEA, which is somewhat promising.

 

This is sensible.

 

Who knows if that is correct, in fact. The paper sounds like FITNET et al.

 

See my other thread Trish, https://www.s4me.info/threads/nice-...deline-committee-has-now-been-published.6197/

 

For avoidance of doubt my comment was meant to be read sarcastically, as in I have no faith that what might work for MS will automatically work for us.

 

Psychologist Jo Daniels was listed as supervisor on The Shopping Bag Trial.

https://www.s4me.info/threads/not-a...-investigating-chronic-fatigue-syndrome.3746/

https://web.archive.org/web/2018042...earch-investigating-chronic-fatigue-syndrome/

 

Primary Care Rheumatology Society wanted to add Fibro into the guidelines because they believe there is an overlap (not that Fibro shouldn't be treated seriously but that's like me saying Gulf War Syndrome should be included as I believe there is an overlap).

 

Our friends at Royal College of Psychiatrists

and

My interpretation: don't take our cash cow away from us, our careers have been made on useless treatments and we want that to continue.

ETA: South London & Maudsley NHS Foundation Trust submitted the same response as above - at the very least they did admit that the same person was responding for both bodies!

 

Some?!!!

Almost four decades of this shit and they still dont understand that the onus is on them to prove the treatments SCIENTIFICALLY. They have failed to do so and have sat by promoting junk science.

Why have you ignored them for decades then?

If that does happen the emperor will be revealed as naked. Its laughable that they don't realise that by doing a real scientific review of the evidence they loose hands down and will be shown up as snake oils purveyors.

MS has primary treatments fools. Lets see some data for CBT and GET alone in MS without primary biological treatments then you can compare efficacy in both. Not hocus pocus claims and even in MS with real primary treatments no one claims 30 -60% recovery rates by changing study protocols and redefining recovery to be worse than entry criteria.

Suddenly they dont want to drop objective measuring.

 

One of the things that is fundamentally flawed in modern science is claims like 'xyz is used in MS successfully'.

This kind of statement is an appeal to authority and can build an even higher house of cards.

Without examining every basic premise a slight of hand can be performed.

People like the BPS crowd like to obfuscate real issues and sidetrack to throw off real examination. If its the likes of them who are running the CBT and GET studies in MS that just about says it all.

They can just as easily say 'as we know CBT and GET work in ME it will most likely work in MS'.

Its just a circle jerk protected by the fact that all of their claims are taken in blind faith.

 

Just in case anybody gets the impression from the comments that I'm quoting that all the comments made were bad then that is definitely not the case. As I'm going through the 354 pages of them I'm just picking out those that stand out to me and those do tend to be the worse ones. This isn't meant to invalidate large donner's comments, I just wanted to add a bit of perspective to things.

 

No surprise that this comment comes from Royal United Hospitals Bath, NHS Foundation Trust (Bath being within easy reach of Crawley at Bristol).

Yeah, lets not be realistic about chances of recovery, as that might upset a few people. And no, recovery from ME/CFS isn't complex to define - if I recovered from ME I would not suffer from it, how is that complex?

 

Next, presumably unintentional, comedy moment from Royal College of Psychiatrists and South London & Maudsley NHS Foundation Trust

My interpretation: if we look at something different, but call it CFS, then we get magic recovery figures! Aren't we great!!

 

This one from The Ehlers-Danlos Support UK just plain confused me.

"ME/CFS-like illness", such as??

 

BPS-ers don't get things their own way.

Royal United Hospitals Bath NHS Foundation Trust commented

NICE answered

which suggests to me that they aren't keen for as broad a guideline as the BPS-ers would like.

 

From the trial registration for that MS study:

http://www.isrctn.com/ISRCTN25692173

Can anyone see the results for their MRI outcome? Looks like they only reported the subjective self-report outcomes in their paper: http://sci-hub.tw/https://jnnp.bmj.com/content/early/2018/03/16/jnnp-2017-317463.info

Rona Moss-Morris is the second author.

So they claim recovery is not unsual, and to support this claim cite a systematic review that says: "Full recovery from untreated CFS is rare."

"Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0-31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8-63%)."

https://www.ncbi.nlm.nih.gov/pubmed/15699087

I think it's fair to describe something that only happens in 5% of cases as 'unusual'. The Royal College of Psychiatrists have an interesting approach to stats.

 

'Heres all the sourced proofs that large numbers recover from our treatments.'

'I see, are these studies all subjective endpoints, non blinded, carried out by the same people with dubious criteria, hidden data, changed protocols changed recovery definitions, whereby objective outcomes are dropped and the treatments rely on telling patients to report their experiences positively or they wont recover'?

Errr..Ye.

Hmm, you do realise that's the very reason we are doing this review?

Well the treatments work in MS so why wouldnt they work in ME?

Do they work in MS? Wheres the evidence?

Our studies above that we sourced the ones you are reviewing in ME.

 

OK, finally reached the end. My overall impression is that there is a broadly unified message coming from the patient groups, even when different language is used. I also thought that there was far less comment from the BPS-ers, and related groups, than I thought there might be - if anything, it does make me wonder if the document shows all comments made to NICE, but I guess we have no way of knowing.

Other thoughts off the top of my head. Perrin makes an appearance promoting his diagnosis-by-poking-you, as well as his pet support organisation. And I was surprised to see no comment by either BACME or the Sussex & Kent ME/CFS Society as I'd thought they would be all over this.

As I mention earlier in this thread, I've picked out the bad stuff to comment on in this thread and it's nice to be able to say that the bad stuff is far outweighed by the good comments.

One final thought, given that we've got a least one example of a comment being mangled so that it's original meaning is lost, it could be worthwhile for someone to double check all S4ME's comments, if anybody has energy and inclination to do so.

 

Am only on page 197, but agree with @Andy's overall impression. Was actually just thinking I was impressed at how unified the message from patient groups was, despite being written by so many different people. (Unlike South London & Maudsley and the RCP with their one respondent replying as two organisations!)

I am however frustrated that NICE have decided to remove the sentence saying recovery is unusual based on this and 1 or 2 other comments from psychs.