New Times article on NICE (mostly good)

[Jonathan Edwards]

What is not clear to me is whether or not there has in fact been any 'climbdown'. NICE have agreed to review but they may have done that assuming that there were going to extend the BPS agenda following new GET data. A longer period of deliberation can only be a good thing, I think. At least it has been acknowledged that the current guidelines need review.

 

[Hajnalka]

Good article but I can't comment either -I'm just a 'registered user' not a paying customer - grrrr annoying as there are some pretty crass comments I'm itching to respond to

@Hilary, had the same problem at first, but @AndyPR's trick (see above) worked!

 

[Valentijn]

NICE have agreed to review but they may have done that assuming that there were going to extend the BPS agenda following new GET data

I don't think so ... the documents published indicated that they are clearly hearing what patients and their organizations are saying. They were repeating those complaints very accurately, and already indicating that some of the evidence submitted in asking for a review also supports the call to potentially change NICE guidance. Most of the evidence which they rated as being relevant was contrary to the BPS view, often directly challenging it.

If there was an intent to maintain or strengthen the current BPS stance, I'd have expected them to play dumb in understanding the issues, or at least soften the criticisms. Instead, they seem to be endorsing the validity of the criticisms. It's still very preliminary of course, but they're starting off on the right foot.

 

[Solstice]

I don't think so ... the documents published indicated that they are clearly hearing what patients and their organizations are saying. They were repeating those complaints very accurately, and already indicating that some of the evidence submitted in asking for a review also supports the call to potentially change NICE guidance. Most of the evidence which they rated as being relevant was contrary to the BPS view, often directly challenging it.

If there was an intent to maintain or strengthen the current BPS stance, I'd have expected them to play dumb in understanding the issues, or at least soften the criticisms. Instead, they seem to be endorsing the validity of the criticisms. It's still very preliminary of course, but they're starting off on the right foot.

I'm guessing that this acknowledgement would mean accountability later on too. So it might be bigger than it seems.

 

[Valentijn]

I'm guessing that this acknowledgement would mean accountability later on too. So it might be bigger than it seems.

My main concern is that they'll only be interested in new evidence, and not logical explanations of why the interpretation of the old evidence was a complete clusterfuck. If that happens, a lot of bad stuff will stay, regardless of how poorly supported, simply because there's no new evidence to contradict it.

 

[Jonathan Edwards]

I don't think so ... the documents published indicated that they are clearly hearing what patients and their organizations are saying. They were repeating those complaints very accurately, and already indicating that some of the evidence submitted in asking for a review also supports the call to potentially change NICE guidance. Most of the evidence which they rated as being relevant was contrary to the BPS view, often directly challenging it.

If there was an intent to maintain or strengthen the current BPS stance, I'd have expected them to play dumb in understanding the issues, or at least soften the criticisms. Instead, they seem to be endorsing the validity of the criticisms. It's still very preliminary of course, but they're starting off on the right foot.

I hope you are right, Valentijn. I have been in the USA so have not been keeping up with the detail this last week or so. But until either Charles or I or someone like that is actually invited on to the committee I will wait till the fat lady has sung before raising my glass.

 

[Jonathan Edwards]

My main concern is that they'll only be interested in new evidence, and not logical explanations of why the interpretation of the old evidence was a complete clusterfuck. If that happens, a lot of bad stuff will stay, regardless of how poorly supported, simply because there's no new evidence to contradict it.

And that too.

 

[Sean]

Thank you to Tom Whipple.

+1

My main concern is that they'll only be interested in new evidence, and not logical explanations of why the interpretation of the old evidence was a complete clusterfuck. If that happens, a lot of bad stuff will stay, regardless of how poorly supported, simply because there's no new evidence to contradict it.

More generally, I want to know what happens to existing research 'results' when (if) medicine moves to a tighter p value (e.g. 0.001 instead of 0.05).

If it does then it makes no sense at all to let old results stand without re-assessment and be granted equal epistemological value to newer results using 0.001.

But that re-assessment is a massive task that will seriously impact virtually all clinical guidelines, to the point where many or even most of them will need to be rewritten more-or-less from scratch.

It will involve a huge time, energy, and financial cost, and a lot of people are not going to be happy with the downgrading and even dismissal of their life's work, which most of them did in good faith according to the standards of their time.

No excuse for not doing it, of course. It may well be the single biggest improvement in the history of medicine.

 

[Wonko]

I don't see why it would cost that much, if all the results are already digitised, as they must be for a previous analysis to have been completed, surely it's just a case of changing a threshold and looking at the results again. I'm not a statistician but that seems like a fairly quick, easy and cheap job to me.

 

[Valentijn]

I don't see why it would cost that much, if all the results are already digitised, as they must be for a previous analysis to have been completed, surely it's just a case of changing a threshold and looking at the results again. I'm not a statistician but that seems like a fairly quick, easy and cheap job to me.

The difficult task would be in reassessing the methodology of the trials. Some of that isn't too hard ... eg, Oxford is obviously shite. But there are trickier issues such as evaluating the reliability of a trial where randomization is removed for long-term followup, primary outcomes measurements are switched or set to different levels, objective null results are published separately, etc.

It requires a lot of close reading and a very good understanding of research methodology. I don't think most topical experts have the experience or time to fully discover and understand those sorts of issues. Hence the reliance on abstracts, which is being exploited by quacks in their publications.

 

[Wonko]

@Valentijn

Okay - Thank you.

 

[TiredSam]

True. But until we have breakthroughs (like Ritux, Cyclo or something else) or a biomarker, I was rather hoping for some very basic stuff that would already be revolutionary for us, like "Treat sleep, pain and POTS. Don't reject testing and referrals. PEM is real, don't make your patient with ME overexert. CBT is not a cure for ME, it can only be used as support to adapt to a new life."

They should at least change it to - "Tell the patient to rest until 2020."

 

[alex3619]

I was rather hoping for some very basic stuff that would already be revolutionary for us,

I do understand that, and agree its needed. However the thing about evidence based approaches is they are typically driven by only certain kinds of evidence. We generally do not have that evidence. So therefore they act to ignore all the other evidence we do have.

Evidence based approaches, in my view, have a high risk of failure and bad advice when there is inadequate research. Given the paucity of studies and funding for many decades we are still largely in the dark about ME. I very much doubt however that NICE would ever admit we simply do not know that much and have no high quality treatment advice using evidence based approaches. (Rituximab is pending.)

The issue with CBT/GET studies is they have the broad, rubber-stamp form of quality studies, while typically avoiding quality methodology. This is how the evidence base can be distorted. If enough poor studies are funded, but have the RCT stamp of approval, then the evidence base gets railroaded.

I have great sympathy for the view that one of the worst things that ever happened to ME was the rebranding as CFS. This despite that chronic fatigue, by itself, is not a mandatory symptom of ME. Energy and fatigue related symptoms and signs, and quite a few, are not the same as just chronic fatigue or even tired all the time.

 

[Hilary]

@Hilary, had the same problem at first, but @AndyPR's trick (see above) worked!

I know I have brain fog but I can't find any post by @AndyPR - where has it gone?? Have looked several times..

 

[Hajnalka]

I know I have brain fog but I can't find any post by @AndyPR - where has it gone?? Have looked several times..

Try reloading the page. I'm registered with the Times but not as a paying customer and initially I didn't have a comment box available to me, I clicked through to read their community guidelines and after using my browsers back button to return to the article the comment box was there, so it might be that a reload will help.

 

[AndyPR]

I'm not sure why but, while I can access the article still, I can't post any more comments. It might be that two is the limit for non-payers like myself so, in case that is the case, choose your comments wisely

 

[snowathlete]

I think we must do better at getting topic experts on board who actually know what they are talking about. I imagine the few good ppl we have in the U.K. do apply, but perhaps the community needs to be vocal and advocate for these ppl to be accepted by NICE.

 

[BurnA]

But until either Charles or I or someone like that is actually invited on to the committee I will wait till the fat lady has sung before raising my glass.

How can we make that happen?

 

[Hilary]

Ah that's better. It appears I was ignoring you @AndyPR - have no idea how that happened and can only blame user incompetence - nothing personal.
I need a biscuit.

 

[Jonathan Edwards]

I think we must do better at getting topic experts on board who actually know what they are talking about. I imagine the few good ppl we have in the U.K. do apply, but perhaps the community needs to be vocal and advocate for these ppl to be accepted by NICE.

As far as I know getting on to NICE committees is a matter shrouded in mystery. I guess you are invited. I doubt anyone ever applies. The people in charge of these organisations have to get to know who seems be informed and the recognition that there is disquiet out there about current advisors is at least a start. The fact that I have been asked to review by Cochrane is at least a suggestion that all the media coverage and JHP and maybe patient representatives are getting some sort of message through somewhere.