Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

What I find amusing (in a warped kind of way) is that nowhere in this, that I recall reading - albeit this morning - do they seem to say that they are writing this piece, acting in the best interests of patients, that patients are being harmed by the new NICE GL. It's just, NICE didn't agree with us, here's why we think this, and we are throwing a tantrum again as a result. Which essentially weakens the point.

If they had a genuine case to raise, they would surely make much more of the harm that they felt was being done to patients by not being able to do CBT/GET, or, they would (as I'm sure I've said before in other threads) go out on a proper limb and re-do PACE, to current scrutiny levels, to prove beyond reasonable doubt, once and for all, that their assertion that these treatments work.

But, of course they won't, because they can't. And, that won't sit with their narrative that 'they' are the wronged party in all this, they are the ones hard done by, not the patients left without any meaningful treatments as a result of their dogma over the last couple of decades..it's nuts!
 
Trish said:
These are the 8 major errors they claim are in the NICE guideline, copied from the screen shot of Box 2 in one of the tweets. They are listed as bullet points. I have numbered them:

The NICE committee's eight major errors in the CFS/ME guideline process and outcome

1. Created a new definition of CFS/ME which automatically downgraded the certainty of trial evidence

2. Omitted data from standard trial endpoints used to assess efficacy

3. Discounted trial data when assessing treatment harm in favour of lower quality surveys and selective comments from qualitative sources

4. Downplayed the importance of fatigue as an outcome, even though it is the primary symptom of CFS/ME

5. Failed to synthesise and GRADE trial evidence adequately

6. Misrepresented Graded Exercise Therapy as mandating fixed increments of change when the major trials defined it as collaborative, negotiated and symptom dependent

7. Deviated from NICE recommendations of rehabilitation for related conditions such as chronic primary pain

8. Recommended an energy management approach in the absence of supportive research evidence.
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Gosh this is just devious rhetoric. Shows how confident they are that if they feed the (poor and transparent) words and excuses to someone senior they'll give them those to hide behind. Sounds very familiar to that FOI text where someone from RCPsych was telling Nice how they could change the decision and get rid of the evidence in tone: https://www.s4me.info/threads/foi-r...lay-publication-of-the-final-guideline.23023/

It would be interesting to compare that one to this list of orders.

Isn't this just a wants list of what they road-map did in the first place to get their 'results' as needing to change (for a start) in order to game the outcome, rather than well-explained methodological points. They need to add in making sure drop-outs aren't counted, and PEM isn't defined and measured - which I guess is point 1 and point 4: make sure that you recruit people with fatigue and let the treatment itself filter out those with PEM.

You'd hope anyone with science background would ask 'is fatigue the primary symptom of ME/CFS? and so why do they use CFS/ME when they are talking about a ME/CFS guideline' (I have a feeling we need to drop that name - or the parliamentary group discussions are going to have to bring it up - as it is being used in order to continue this fatigue clinics stuff and create deliberate confusion).

In summary when ME/CFS was confirmed - which it was pretty convincingly probably from 2017, certainly by 2020 - as being PEM/PESE as the cardinal symptom and then the guidelines started to come out this lot were making comments along the lines of 'what about those who 'just have CFS''. Which was in the hope of trying to sell this idea that PEM/PESE ME was a niche and their clinics were servicing the majority. Another RPsych FOI was all about being outraged 'this is a guideline for PEM/PESE'.

Certain clinics (King's I believe) now, when contacted by MEA as they had not updated in line with guidelines, replied to say they don't treat people with ME/CFS 'just those with chronic fatigue (but then on same page they say all treatments are found to be effective for CFS/ME)' (EDIT: sorry it is a bit more fuzzied than that but posts on page 5 have the fuller responses and posts) which made it clear they were setting their stall out to try and pull off this type of stunt. Funny that the 'fatigue clinics' want the condition to be redefined as 'only fatigue' isn't it.

So why are they really so bothered about keeping the CFS/ME moniker and don't just relabel their research as 'fatigue' (as well as their clinics) is what any sensible funder or planner of services might surely be asking? Maybe those funding those conditions will be really excited to focus on the 'just finished CBT telling you to answer positively about your symptoms' data points over those at the standard follow-up timings for Nice when a bit more time has passed - I still don't get how something is a cure or recovery simultaneously with you not wanting how people are 135weeks on looked at?

Point 6 seems to be full stop untrue given they had a PACE manual that anyone can look up. Even if just before the guideline release Sharpe et al wrote a paper trying to rewrite history with 'only ever rehab' I don't believe he even managed any new reference to any other type of specific evidence it existed - but I suspect this is the one where they will use contrarianism to get people to argue on it then do a double yes, yes to claim a 'compromise' is right. Bottom line is no reanalysed data proves whatever they did with GET did it improve the lot of those with PEM/PESE. And the logical opposite is not pushing through/upwards.

And I think the point 7. about 'other guidelines such as chronic pain' needs an answer of 'what has that got to do with the price of eggs' (it's a different bunch of people and a different condition for a start). Which to me indicates desperation if you are having to call on the 'and look it doesn't match with this' grasp.

Of course this is the one that should matter most, and that I can't help but notice they've struggled to get the wording to make grammatical sense on (which with BPS normally means it is deliberately ambiguous and not making sense in order to promote confusion on that area because the point goes against them and they want to muddy it - so they just write something adamant in tone but with garble in word order and most assume the content must match and back up the assertion):

3. Discounted trial data when assessing treatment harm in favour of lower quality surveys and selective comments from qualitative sources
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Which to me says: THIS is the one that they are now feeling vulnerable on. And they should. They never checked for harm and never did sensitivity analyses on drop-outs. Yellow card systems would work retrospectively when harm occurs in areas that are licensed - how does this compare as a 'best we have' vs their suggestion of 'trust us we checked, but can't show you the evidence'.

Responses relating to the comment about the Kings clinic have been moved here.
 
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Sly Saint said:
thats what a lot of the therapy manual (PACE) makes it out to be (but it makes it very clear throughout that the theory behind it is deconditioning) until you get to this bit:
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I feel cagey on this one. Have you ever argued with someone where it is (them) "yes" --> (you) "no" --> (them) "yes" --> (you) "no" --> (them) "no" ... in order to lead you into saying the opposite.

What these guys want is for their 'apparently new' rehab GET to be OK'd. Whatever that actually is. I'm guessing what it really is (going by Sharpe's paper in Spet/Oct 2021 just before guidelines claiming 'it was only ever meant to be rehab but therapists did it wrong' angle) when they got a new partner of rehab during long covid they were happy to sell down the river 'the therapists who used to do GET' being why it didn't work.

These guys had a lot of funding, a lot of research, many many clinics over more than a decade and there is no paper they are pointing to of any kind of GET (with whatever protocols they want to claim) fixing people. And their pretence of not having been the ones in charge, controlling the paradigm and what could be tried - as someone said pretending it is just 'gizza chance' as if they aren't the ones who had all the chances before and all the other paradigms not having them - makes me think they want people to walk right into that 'pretend it's a compromise/new thing/as if they've seen the light'.
 
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Hutan said:
I have a bit of sympathy with that point too. I think the NICE Guideline made energy management/pacing sound a lot more like a therapy, a lot more scientific, than it is. That was a product of the therapists wanting to be needed, wanting to be the experts, wanting to write energy management plans for patients, with careful schedules of activity and rest.

It should really have just been something more like 'Advise patients to organise their life so that they can mostly avoid PEM. This may involve cutting back or stopping paid work and education, in which case help the patient to liaise with their employer or school and apply for various assistance. Put patients touch with patient organisations who can offer practical advice and support.' That sort of practical advice doesn't need evidence. 'PEM is awful and debilitating, pushing through PEM doesn't make ME/CFS get better, so avoid PEM'. Not rocket science.

However, if the BPS people try to suggest that the PACE trial assessed 'pacing' and found that it didn't help, I would point out that most patients who have had ME/CFS for more than maybe 6 months end up doing a form of pacing just to get through the day. Therefore, most of the participants in the trial were already pacing - limiting their activity levels so that they could prioritise the things that they felt were most important and not end up in bed in agony for three days. So, it's hardly surprising that the outcomes of the so-called Adaptive Pacing treatment looked a lot like Standard Medical Care.
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Indeed - it should have focused on providing support to get adaptations and enable patients to be able to live within their energy limits as much as is possible for them... which could include.. and then a really helpful list of things (which it feels we still need)

I'd add to this 'get good rest' so that things like beds and noise etc are on the list of important aspects to help someone have a chance of not going downhill with.

It would transform the way we were helped if the section focused on 'lists of things to look into in order to reduce exertion on PwME', 'list of things to support PwME in being able to get good recovery rest' and they were OT focused and not 'therapised'. For us you 'don't stop a fall' only by putting a rail up, you do it by making sure they aren't exerting themselves so much walking from the carpark into the office that they collapse eventually or by providing support that means they aren't having to do other things that leave all their energy used up/are in PEM by the time they need to do something essential to life.

But I'm sure in this instance they've deliberately made 'pacing' sound like a treatment-mode (whether that is what the guideline says completely or not) because it works best for their argument to say it this way - which is insightful as I'm sure there is a reason for them choosing to go this way.

Whilst we are all distracted arguing on the minutiea of a dead paradigm still energy isn't going into and laypersons are distracted from hearing the pretty simple paradigm of 'these people are just dog-ill like you are when you have your worst days of flu....and you wouldn't think pushing yourself to do x, y, z whilst you shake will speed up your recovery then... this isn't really some 'removed illness'' - and people hear 'therapy' rather than 'ill' - because that voice of sanity never gets a look in between their constant articles.

- so I agree I think it is just that at the heart of all this, trying to make this sound like a 'compromise is needed' because it is between two therapies rather than the utter polar opposite stuff that this really is vs quite a straightforward concept everyone knows and understands if they get a pause to think about that 'just ill' alternative. Pretending the question is about 'who and how much' rather than 'no thanks therapists not required because we are ill'.

It's like reframing the diabetes debate to 'who does the sugar therapy' so everyone gets distracted into thinking it is about 'which therapy' instead of realising the straightforward default is 'sugar=harmful' and at best a list of diabetic foods is actually the relevant issue. Of course there is no such thing as 'the diabetes debate' but that's the technique to make it exist and seem real.
 
The same pattern everywhere: political medicine. It's the only way the biopsychosocial model exists at all, constant politicizing of the entire medical profession. Literally the old pre-science way of doing things.
Dr Keith Geraghty on Twitter said:
This week we learnt of a group of drs & academics, led by a PACE trial author, who oppose the 2021 @NICEComms guidelines on ME/CFS. As it happens, in 2018 some of the same influential figures also opposed a NICE treatment guideline for depression. Raises an interesting question..
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The irony....

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It would be too much work for us, but I'm pretty sure it wouldn't be hard to find quotes from them that contradict every one of their claims. And some that don't. And some that agree. But there are many where they said the exact opposite, especially the further you go back in time. Not hard, just very time-consuming and requiring too much reading.

This is the kind of use I'm looking forward to with AI. Right now it's too labor-intensive to do this. Soon enough it will be trivial to basically produce a kind of montage where you show them say one thing and other times where they contradict the same claims or make different ones entirely.

It will be so damning and it's just a matter of time, probably next year.
 
cassava7 said:
Interestingly, the authors of this letter — including Wessely — blamed NICE for not using long-term follow-up data (1 to 2 years post-treatment) in the depression guideline, but Wessely, White and co-authors are now blaming NICE for using the longest available follow-up data for the PACE trial (134 weeks).
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Of course. It even criticizes the focus on symptoms when the entire BPS basis to declare us as depressed is by asking about symptoms and declaring them as the symptoms of depression. And of course as far as Wessely is concerned, fatigue is basically depression. Zero need to be consistent since lies don't even matter.

Seriously even politics is usually not as bad as this. This is all as bad as the conspiracy fringes filled with shouting liars. Truly the worst thing to have happened to mental illness is the mental health profession. What a mess of things they've made over there.
 
cassava7 said:
Interestingly, the authors of this letter — including Wessely — blamed NICE for not using long-term follow-up data (1 to 2 years post-treatment) in the depression guideline, but Wessely, White and co-authors are now blaming NICE for using the longest available follow-up data for the PACE trial (134 weeks).
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Be an interesting one to look into in more detail to work out who is on the correct side methodologically etc here for sure and see if we are looking at the same issues being replicated but from whom

@Simbindi do you know any more context about where/how patients feel on this 'issue' and where those who might be the science equivalent in depression might be standing on this one?
 
cassava7 said:
Interestingly, the authors of this letter — including Wessely — blamed NICE for not using long-term follow-up data (1 to 2 years post-treatment) in the depression guideline, but Wessely, White and co-authors are now blaming NICE for using the longest available follow-up data for the PACE trial (134 weeks).
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Apart from Wessely, is any other signatory of the 2018 letter also author of the 2022 article?

Anyway, in principle it seems Wessely et al got that point right in their 2018 critique of NICE but Wessely and the other 'et al' from the 2022 critique now got that point wrong.

I find it difficult though to gauge whether anything the signatories of the 2018 letter say makes sense as they don't mention anything concrete about what those methodological issues refer to (which treatments recommendations, which evidence of which benefits or harms?) and how the alleged errors by NICE would impact patients.

I wonder if it had anything to do with this:

MSEsperanza said:
Wendy Burn: Medical community must ensure that those needing support to come off antidepressants can get it (BMJ Blog)

The BMJ Opinion, September 25, 2020









https://blogs.bmj.com/bmj/2020/09/2...port-to-come-off-anti-depressants-can-get-it/
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https://www.s4me.info/threads/medic...can-get-it-wendy-burn-bmj-opinion-2020.17119/
 
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About conflicts of interest, the PACE trial investigators (and possibly FND leaders) have done paid consultancy work for health insurance companies.

In this 2019 Nature news article about CoIs in psychological research, Alan Carson is quoted twice as associate editor of the JNNP, advocating for more transparent declaration of CoIs:

“Anything you get money for, beyond about £200 [$255] or £300, you are expected to declare: certainly fees for speaking,” says Alan Carson, a neuropsychiatrist at the University of Edinburgh, UK, who is associate editor at the Journal of Neurology, Neurosurgery and Psychiatry and an editorial board member for the journal Brain Injury.
(…)
Even proponents of declaring COIs in publications say that it won’t prevent some potential problems, especially as much consultancy work might be done after a paper is published. Carson, the neuropsychiatry journal editor, points out that it is not just the existence of income but also the level of it that is important. “Whether it’s £100,000 or £10,000 or £1,000 makes a difference,” he says. He thinks that the reader needs to know in order to make a decision on whether to trust the research. And no journal requires that level of transparency.
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It will be interesting to scrutinize the conflicts of interest statement once the article is published, and to send a letter to the editor if it is incomplete.
 
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