Solid! Just pure sharpened steel.

And we are seeing exactly that happening with LC. Clinics are pushing GET and when questioned quickly insist it's not GET, even though they do GET because of trials that used GET, which would be like using a drug because of trials that used a different drug, makes zero sense. It's literally the modality of increasing activity that is critical to the claims, but it shows they don't even care because they insist they're not doing what they're doing but also they do it because there's good evidence for it.

At what point does this qualify as misconduct? Seriously, when does pushing a treatment on false pretenses become unethical? Seems like when they have to insist they're not doing what they're doing, consciousness of guilt, is really far into that point. I don't get it, the complete lack of accountability for something that is clearly dysfunctional.
In the meetings, I said this too. At one point people were saying, "GET has evolved from the trials. We do it differently now." To which I pointed out, "So you're basically offering an unevidenced treatment, then?" The point sunk in and we moved on.

I'm glad @Adam pwme found the bit in the roundtable minutes where NICE confirmed the GL was signed off before the resignations. That's crucial info. It also states it was an iterative process, which is important.

Every page was written by consensus, so was, in effect, signed off as we went, then signed off in total as the draft, and signed off in total again as the final version.

And their response to Cochrane (all valid, but I didn't have time to tackle Cochrane as well as PACE in my review) is concise and incisive. We noted that they pooled all exercise interventions, and that some of them were more like pacing than GET, so the results were uninterpretable.
 
In the meetings, I said this too. At one point people were saying, "GET has evolved from the trials. We do it differently now." To which I pointed out, "So you're basically offering an unevidenced treatment, then?" The point sunk in and we moved on.
The very fact they could not see a blindingly obvious trap of their own making they were blundering into here, shows their blinkered ineptitude. And that these people of science could not perceive this until pointed out to them by a savvy lay member of the committee. So very glad there were people like you to call these people out.

I find it very interesting to see the way this kind of forum (i.e. the NICE guideline committee discussion environment) gave people no option but to rely on evidenced argument, rather than fact-twisting and ad hominem attacking of legitimate critics.
 
I think the Countess of Marr and Carol Monaghan MP would be able to claim defamation. We, as a community, sadly, would not.

However, it would be the ultimate response to FF's silly scribblings if they were smacked down in a court of law. I would definitely chip in to support Margaret and Carol's case, if needed.

It does feel time. Sometimes there are points where people go so far over the line that they are trying to set new precedents about what is acceptable and what truth is. My gut says we need to be smart here, but that highlighting this - certainly from the perspective of history once those radicalised by the lockdown (am I the only one who has noticed this) have calmed from being a bit brainwashed into thinking they did it only for vulnerable people - can only reflect badly on those who wrote all of this stuff.

Once a group culminate in writing a whole chapter with Nazi inferences, you'd hope the ruse is up that it is 'in the best of intentions' or that 'they are just quiet nice people trying to do a hard day's work'.

And particularly their idea that 'patients are only taking offence because we are from psych and they must be anti-mental health'.

If we inform the SMC and have no response then we can assume that an organisation - whatever it wants to term its mission in its statement vs its minutes regarding strategy and 'setting narratives' - is behind writing and publicising this. And the usual suspects are intricately involved with what is written and the organisation so should be firmly tied to it.

I think with a properly taking it seriously and realising it has to be done right approach (and gaming out all of the sophist retorts of victimhood), that this is the one.
 
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Here's my review of Fiona Fox's book. Please rate it as helpful if you think it provides extra context: https://www.amazon.co.uk/gp/aw/review/1783966173/R1XYSNLD2KQJ38?ref=pf_vv_at_pdctrvw_srp

I added a lot that Fox (and people like Garner) haven't mentioned about the NICE process. I also explain why the evidence was rated very low or low, and why we made the recs we did.

Be warned: it's long!

It's spot on. I hope it felt as good writing it as it did reading it
 
That is a fantastic review, and account of the situation very succinct considering how much it covers. Accessible to all too, i shall be referring people to it. Thank you so much

I'll probably do the same (not that I think anyone I know would actually follow-through, but one can but hope)

@adambeyoncelowe is there already a copy on here? just thinking for posterity in case it disappears down the reviews or anything dodgy happens..
 
Thanks, Adam. I added a shorter review, focusing on Fox’s history and emphasising the contrast between her views and those of NICE, the CDC, APPG, Javid etc.
https://www.amazon.co.uk/gp/custome...=cm_cr_getr_d_rvw_ttl?ie=UTF8&ASIN=1783966173

Terrific review @Robert 1973, I've taken the liberty of copying it here, given its coverage is very relevant to this thread. Thanks to all who have written those great reviews. I do hope people will click through to vote up their favourites.



"Fiona Fox first came to my attention in a Guardian article by George Monbiot entitled “Invasion of the entryists,” which I would recommend to anyone who is considering buying this book.

In the introduction to her book, Fox confesses to have joined a “far-left revolutionary group in [her] college days” but she attempts to pre-empt any criticism based on that by claiming she was “never a very dedicated communists and always much more interested in pursuing a career in media relations.” Like so much of Fox’s writing, this is misleading. The truth is that she was a leading member of the Revolutionary Communist party (RCP) and a regular writer for its magazine, Living Marxism (later called LM), which eventually folded after it was successfully sued for falsely claiming that ITN had deliberately misrepresented the atrocities of the Bosnian war. While some members may have considered themselves to be left-wing, despite its name, RCP/LM was more of a libertarian, controversialist organisation, which shared many positions with the right and has been likened to a sect. Although Fox implies that her membership of this group was confined to her youth, the truth is that she was still writing regularly for LM under the pseudonym Fiona Foster well into her thirties, when, according to Monbiot, she “generated outrage among human rights campaigners by denying that there had been a genocide in Rwanda”. (See also “Genocide? What Genocide?” by Chris McGreal in the Guardian.)

Given the extreme and bizarre views she expressed in LM, and her lack of science qualifications, it is unclear why anyone deemed her an appropriate choice to become director of the Science Media Centre. And her unsuitability for that role is laid bare in the title of the chapter of this book about ME/CFS: “First they came for the communists”.

For those who are not aware, this title alludes to a poem by Martin Niemöller about The Holocaust, which begins: “First they came for the socialists, and I did not speak out – Because I was not a socialist”. In other words, Fox is comparing patients and academics who have criticised poor quality ME/CFS research to Nazis. It is hard to imagine a less appropriate title for a chapter about a group of patients who are widely acknowledged to have been institutionally mistreated for decades. But it is not inconsistent with Fox’s history as a writer for LM, or the smear campaign which appears to have been orchestrated against people with ME during her tenure as director of the SMC in an attempt to deflect valid scientific criticisms of methodologically flawed psychosocial research.

Meanwhile, it should be noted that the psychosocial ME/CFS research and therapies which Fox promotes (primarily CBT and graded exercise) have now been rejected by NICE, the Institute of Medicine, the CDC, almost every ME charity and organisation in the world, the All Party Parliamentary Group on ME, and the UK Secretary of State for Health and Social Care.

It has taken thirty years, but it seems that health agencies and politicians have finally woken up, largely thanks to the work of the few heroic patients and academics who Fox treats with such contempt. If you are interested to understand more about the scientific arguments which led to this awakening, I would not recommend this book. Instead, I would suggest reading “Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT” in BMC Psychology, which can be accessed online for free."
 
This quote from Andrew Gelman's blog reminded me of this whole episode with Fiona Fox and her comparison of ME activists to Nazis:

"Science is kind of like . . . someone poops on the carpet when nobody’s looking, some other people smell the poop and point out the problem, but the owners of the carpet insists that nothing has happened at all and refuses to allow anyone to come and clean up the mess. Sometimes they start shouting at the people who smelled the poop and call them terrorists. Meanwhile, other scientists carefully walk around that portion of the carpet: they smell something but they don’t want to look at it too closely."

Source: https://statmodeling.stat.columbia....h-time-talking-about-cheaters-and-fraudsters/
 
Can't find the quoted passage but in the book at some point Fox claims that the PACE follow-up papers were not publicized at the demand of the researchers, or something like that, because of all the harassment. Nothing to do with null results, of course.

In the end, the disclaimer in the book about how none of this is factual, merely her recollection, is going to do a lot of work.

 
Can't find the quoted passage but in the book at some point Fox claims that the PACE follow-up papers were not publicized at the demand of the researchers, or something like that, because of all the harassment. Nothing to do with null results, of course.

In the end, the disclaimer in the book about how none of this is factual, merely her recollection, is going to do a lot of work.



"I have had many moments of despair on this issue over the years, but one I particularly remember was when we learnt that a scientist who had authored an update on PACE had asked the Lancet media team not to publicise the findings because of the potential backlash. Not wanting to do media interviews is one thing. Actively suggesting that new research findings are not put into the public domain because of fear is another. Surely anyone who believes in the scientific endeavour can see that this situation is untenable."
 
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