New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

[Wonko]

What are they even trying to say here? I read this over and over again trying to understand their reasoning and see it.

That certain illnesses don't have an objective diagnostic test doesn't mean that clinical trials of treatments for these illnesses don't suffer from reporting bias affecting the outcomes.

The situation is fairly simple.

Effectively they stole some land and put up a new sign to identify it. Whenever anyone says you stole that, give it back, they point to a deed they wrote and say 'look at the sign, look at the deed, it's ours'.

Up until recently the authorities when complaints have been made have replied 'look at the deed, look at the sign, it's theirs'. Of course there has been no conflict of interest in the fact that the authorities, and the 'experts' they ask for an opinion, have been the very same people as stole the land in the first place, or their mates.

Now, of course, someone has looked at the deed, and discovered it wasn't official, that in fact it was written in crayon, so handed a proportion of the land back to the original owners.

So the people with the crayon deed are basically going 'wah, wah ,wah!!' and claiming that people should look at the sign, and see it matches the deed.

Completely ignoring the facts that they stole the land, that the deed is fraudulent, and hence the sign is also fraudulent (ETA - and that anything that doesn't exactly match both the crayon deed, and the sign, are fake, or refer to some other bit of land, and therefore of no relevance)


Or that's my take on it

 

[Andy]

Reference 18 is a forum thread here: https://www.s4me.info/threads/nice-...deline-committee-has-now-been-published.6197/

Great, it's always nice (pun unintended) to receive confirmation that our efforts are worthwhile..

 

[Hoopoe]

The guideline committee decided to consider trial outcomes at the furthest time away from recruitment, overlooking data on end of treatment and the trial primary endpoint in the largest trial of CBT and GET.6 This omission contributed to downgrading for imprecision and the questionable conclusion in the new guideline that there was insufficient evidence for the efficacy of CBT and GET. Here, NICE did not account for cross-over between the intervention and the control group during long-term follow-up. Trials of COVID-19 vaccination might be illustrative: given the guideline committee’s principle of using outcome measures “furthest time away”, a long-term follow-up vaccination trial would probably show no beneficial effect of the vaccine because the control group would presumably have been immunised as well.

If I remember right, Wilshire et al looked at whether cross-over between treatment groups could explain the null results in PACE at followup and concluded it couldn't. Null results remained even if patients who crossed-over were excluded from analysis.

 

[Nightsong]

Unusually, the guideline committee decided not to include Cochrane reviews, because the review did not report one of the crucial outcomes determined by the committee, namely mortality. Mortality was not an outcome in any of the trials considered, however, because it is not relevant in studies of CBT and GET for CFS/ME.

This is a misrepresentation - the reviews were not excluded solely because of mortality. Three Cochrane reviews were excluded from Evidence Review G on grounds that were well-explained in s1.1.3.2:

Three potentially relevant Cochrane reviews were identified but were not included in this review due to differences in the review protocols. One Cochrane review of exercise interventions (Larun 2017) and one Cochrane review of cognitive behavioural therapy (Price 2008) did not include all critical outcomes specified in this review protocol and included study populations where not all participants had ME/CFS. Another Cochrane review of Chinese medicinal herbs (Adams 2009), which did not include any studies and which was later withdrawn included people with idiopathic chronic fatigue in the review protocol. All included studies with in these reviews were cross-checked for eligibility for inclusion in this review.

The committee's further explanation, in the consultation responses, of the exclusion of the Larun exercise-therapies review:

This Cochrane review looked at exercise therapy versus passive controls or other active treatments in adults with ‘CFS’. The main reasons for exclusion are as follows: The approach to meta-analysis was different to our approach. All exercise therapies were pooled regardless of the type of exercise therapy delivered, and comparators considered ‘passive’ control arms (treatment as usual, relaxation or flexibility) were also pooled. We did not consider this to be appropriate for the purposes of decision-making for this guideline. Additionally, the following critical outcomes were not assessed (not primary or secondary outcomes for the review): cognitive function, activity levels, return to school/work, exercise performance measures, and mortality. However, all studies included in this Cochrane review were included in our review.

We note that the Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ (Larun et al., 2019) is contested and that it ‘is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s’ (https://www.cochrane.org/news/cfs) The review is currently undergoing a full update.

and their explanation of the exclusion of the Price CBT review:

This Cochrane review looked at CBT versus usual care or other interventions in adults with ‘CFS’. The main reasons for exclusion are as follows: Studies with mixed populations where at least 90% of participants had a primary diagnosis of CFS were included. The committee agreed it was important that all participants in included reviews were diagnosed with ME/CFS. Additionally, the following critical outcomes were not assessed (not primary or secondary outcomes for the review): cognitive function, pain, sleep quality, activity levels, exercise performance, and mortality. It is also worth noting that Cochrane has stated that this review is no longer current and should not be used for clinical decision making.

Other than that, there are no particularly new arguments here; just more of the same special pleading.

 

[Kalliope]

The tabloid newspaper Dagbladet has written an article about the Lancet comment. It's paywalled, so here are some translated quotes::

Title: Fear ME sufferers will lose important treatment

Research director Signe Flottorp of The Norwegian Institute of Public Health believes the changes in the British guideline is a result of ideological opinions that the illness is exclusively physiological have been allowed to dominate. She thinks the advice from a committee in The National Institute of Health and Care Excellence (NICE) is not based on scientific knowledge about the illness and how patients best can be helped.

- The documentation for cognitive therapy and adapted exercise therapy can help patients with mild to moderate ME is better today than it was when the last guideline came, says research director Signe Flottorp and continues:

- The committee who made the new British guideline have chosen to look away from this and instead listen to anecdotical single stories and patient groups own surveys.

...

Recently the editors of the esteemed journal The Lancet invited Flottorp to write an article about her opinion on the British guideline.

The article is published in the publication released 12th February.
In the article, Flottorp, together with the Norwegian researchers Kjetil Brurberg and Vegard Bruun Bratholm Wyller, Danish Per Fink and Dutch Hans Knoop, takes a strong settlement with the British committee, which they believe has "shot itself in the foot".

- The result is that the British ME guideline now doesn't have any treatment offer to recommend. Despite there being treatment that is well documented can help, says Flottorp to Dagbladet.

The Brits don't agree with Flottorp, but think the advice are well reasoned for and documented.

- All NICE-guidelines follow the same procedure of evaluation and rules regarding evidence. This guideline was no exception, says communications manager Phil Ranson in NICE.

...

It is a misconception that bodily symptoms must be caused by a bodily illness, says Flottorp.

She thinks it's a paradox that the Brits believe ME should be diagnosed based on subjective outcomes, in other words based on how a patient experience symptoms, while studies based on subjective outcomes are not regarded as valid.

...

Flottorp, head of research at FHI, believes that what has happened in the UK is a result of some patient groups gaining an unbalanced amount of influence.

 

[rvallee]

These people are clowns but the bigger clown in this is Richard Horton. Rewarding failure is always a terrible idea, I don't understand how the man most responsible for the antivaccine movement can continue to have any credibility at all, but here we are, his history of failure continuing on its same path. This is what happens when politics and ideology dominate medicine.

Something amazing is that their argument is that this is both about ideology and capitulating to activist demands, negating the fact that we are patients. So obviously negating the reality that we are patients is necessary to maintain this vague claim of us having some ideology or another. Coming from ideologues, a standard strategy in reactionary politics to accuse others of what they are most guilty of, once more emphasizing just how heavily political medicine is.

What are they even trying to say here? I read this over and over again trying to understand their reasoning.

That certain illnesses don't have an objective diagnostic test doesn't mean that clinical trials of treatments for these illnesses don't suffer from reporting bias affecting the outcomes.

Don't bother, this is sophistry. They're throwing pocket sand because doing that has worked for decades, they don't even know how to argue for their stuff at this point. And of course they are the insisting that all of this disease can be summed up to the subjective symptom of fatigue anyway, they don't have to make sense, this is just about making noise and demonizing us.

 

[Wonko]

What has happened in the UK is down to some people losing unearned and unquestioned eminence because their prescribed, and legally enforced (in some cases, particularly where children are concerned, people have been 'removed' from home and family if treatment is refused, or if treatment doesn't work as 'expected' by 'experts') 'treatment' not only does not work, but has been shown to cause harm when followed, and also has absolutely no rational basis (e.g. ever increasing amounts of exercise to 'cure' a condition which has exercise intolerance as one of it's defining symptoms).

IMO by refusing to accept this, various people are simply showing their total unsuitability to practice.

 

[chrisb]

I see that Horton is an Honorary Professor of University of Oslo and has an Honorary Doctorate from Tromso. The Norwegian ties are quite close.

 

[rvallee]

This is a strong reminder of just how we had no chance whatsoever of making any progress if it wasn't for Long Covid. The die are completely stacked against admitting any failure, if anything the worst the failure is, the more incentive people feel maintaining it. Even when yet another rigorous process validates that we were right all along, somehow it can't be right since it's a truism that we're wrong.

I hope it's possible to communicate this to long haulers, just how much more there is to do, how none of this is guaranteed to end well for anyone, because of this rot that thrives on cheap BS. I see a lot of talk about hope and I don't feel it yet. I have zero doubt this is a problem that can be solved technically, but when politics want something buried the truth is irrelevant and right now the balance of interest is still heavily against recognizing anything that goes against psychosomatic dogma.

 

[Shadrach Loom]

Recently the editors of the esteemed journal The Lancet invited Flottorp to write an article about her opinion on the British guideline.

.

That’s interesting. Is that how the Lancet works? Or will they print anything that meets Horton’s editorial standards and happens to have been submitted?

Clearly Horton comes out of this badly, as he so often does, but I don’t know if this correctly characterises the editorial process. It might even be a translation issue.

 

[Kalliope]

That’s interesting. Is that how the Lancet works? Or will they print anything that meets Horton’s editorial standards and happens to have been submitted?

Clearly Horton comes out of this badly, as he so often does, but I don’t know if this correctly characterises the editorial process. It might even be a translation issue.

I read between the lines that they've tried to get an article published, but were asked to submit an opinion letter instead.

ETA: But it's nicer to say that the editors invited them to write, and I already see LP coach Live Landmark refer to the comment as published in the Lancet (as if it was a peer reviewed article)

 

[Shadrach Loom]

I read between the lines that they've tried to get an article published, but was asked to submit an opinion letter instead.

Ah, that makes sense! Thanks.

 

[Shadrach Loom]

Statement on Twitter from the ME Association on the Lancet comment.



And a comment from prof. Kunst reminding that it's not an editorial

That’s a really poor Twitter gaffe at a time when it would have been very helpful for their response to have been retweeted far and wide. Not impressive.

 

[Andy]

This is a strong reminder of just how we had no chance whatsoever of making any progress if it wasn't for Long Covid.

So the NICE guidelines changing wasn't progress? The funding of DecodeME wasn't progress? I won't deny that Long Covid is likely to speed things along, or at least I hope it will, but I think that it is incorrect to suggest that we weren't making any progress at all, and to do so demeans the efforts of many.

 

[Dolphin]

 

[rvallee]

I don't think that's a big difference but how does a "comment" differ from an "editorial" in Lancetspeak?

That they put it behind a paywall is such a perfect metaphor for how this scam has always been conducted: everything about us against us, in secret, behind closed doors/paywalls. The arguments have to remain within the confines of the medical bubble, discussion of the doctrine must be kept to the initiates.

 

[Midnattsol]

A number of posts have been moved into this thread from the UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion thread.

 

[Shadrach Loom]

I don't think that's a big difference but how does a "comment" differ from an "editorial" in Lancetspeak?
.

An editorial is the editor’s ex cathedra opinion. The difference between news, comment and editorial is taken pretty seriously in all periodicals.

 

[Wyva]

Btw, quite ironic how there is an article on the play titled Dr Semmelweis (currently playing in Bristol) in the same Lancet journal. It's paywalled, so I can't read it, but this is how it starts:

Adapting the life of one of medicine's most radical pioneers would be a challenge for any theatre company, but director Tom Morris, writers Stephen Brown with Mark Rylance, and the cast of Dr Semmelweis balance historicity and creative interpretation. Although the play takes a biographical approach to Ignaz Semmelweis's story, it also highlights the difficulties of communicating new discoveries and implementing clinical reform.

Wikipedia article on Semmelweis for those who don't know:

Despite various publications of results where hand washing reduced mortality to below 1%, Semmelweis's observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. He could offer no acceptable scientific explanation for his findings, and some doctors were offended at the suggestion that they should wash their hands and mocked him for it.

In 1865, the increasingly outspoken Semmelweis supposedly suffered a nervous breakdown and was committed to an asylum by his colleagues. In the asylum he was beaten by the guards. He died 14 days later from a gangrenous wound on his right hand that may have been caused by the beating. Semmelweis's practice earned widespread acceptance only years after his death, when Louis Pasteur confirmed the germ theory, and Joseph Lister, acting on the French microbiologist's research, practised and operated using hygienic methods, with great success.

(But maybe BPS people would read this as: "you see, he couldn't explain it and he was right, and we are the same type of pioneers", or something like that...)

 

[rvallee]

More of an idle thought and frankly I don't expect that there is answer to this but: we keep being misrepresented as activists, all to negate the reality that we are sick, so that we are not framed as patients, allowing authorities to be derelict in their obligations, since only patients have right and we are activists. Same process as negating the citizenship of someone: you are not a citizen, you are an enemy combatant, you have no rights, not even judicial or speech rights.

But what is supposed to be our activism? Since we're not sick? I've never seen any coherent explanation of what we are supposed to be about. Is our cause misrepresenting mental health as physical? That's just plain silly and inconsistent with reality. Not that it matters. Especially since each case is supposed to have its own... demons... I guess? Each case is unique and that's why nothing can be standardized. So there is basically no common ground between us from this framing.

It's clearly used as a slur, bigots always use derogatory terms against their target of hate, but it's still annoying how something so fundamental is completely brushed aside. It is, after all, literally the main explanation for why there is such resistance against psychosomatic medicine. More or less, none of it is coherent since no one really cares. But it's always made in a hand-wavy way, without putting any real thought into it, just convenient nonsense.

It would be nice to have it confirmed by multiple sources. Not that it matters, but with hindsight it will expose the complete moral and professional bankruptcy. But since a core feature of psychosomatic medicine is that they never say what they mean or mean what they say, I wouldn't expect a real answer here, it would have to be private thoughts in what they thought was a safe space.