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

[chrisb]

we keep being misrepresented as activists, all to negate the reality that we are sick,

Perhaps we should be pleased to see the intervention of Kunst

Projects

• APVIOLEXT - From apathy to violent extremism: Motivational foundations of political engagement
• Webimmunization. How can online social networks create collective resilience against misinformation

Jonas R. Kunst - Department of Psychology (uio.no)


Such resilience on display.

 

[rvallee]

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.

My Star Trek signature quote applies perfectly to this, we do everything right and still lose. Again and again, until we win we will keep losing a lot. Lots were accomplished, but it still makes no difference. This is not our failure, the patient community is doing everything right. This is a struggle for civil rights, we are considered wrong until it is accepted otherwise. We can't make the people in power comply to reality and they can invent an alternative reality, like dismissing us vaguely as activists without a cause.

The reaction to the guidelines says it all, it is unhinged to the level of fanaticism. But then medicine shrugging off the 2015 IOM report pretty much made it clear that this is a topic in which evidence and reality are irrelevant, this is 100% about perception and decades of beliefs applied without evidence.

I think there's a decent chance that DecodeME will be very useful, but 2 years of Long Covid and still medicine is largely indifferent or hostile and continues to bury the simple truth that has been known for decades and medicine was simply derelict, entirely of their own free will. If this didn't tip the scale, it's no wonder nothing we did could.

 

[Andy]

My Star Trek signature quote applies perfectly to this, we do everything right and still lose. Again and again, until we win we will keep losing a lot. Lots were accomplished, but it still makes no difference. This is not our failure, the patient community is doing everything right. This is a struggle for civil rights, we are considered wrong until it is accepted otherwise. We can't make the people in power comply to reality and they can invent an alternative reality, like dismissing us vaguely as activists without a cause.

The reaction to the guidelines says it all, it is unhinged to the level of fanaticism. But then medicine shrugging off the 2015 IOM report pretty much made it clear that this is a topic in which evidence and reality are irrelevant, this is 100% about perception and decades of beliefs applied without evidence.

I think there's a decent chance that DecodeME will be very useful, but 2 years of Long Covid and still medicine is largely indifferent or hostile and continues to bury the simple truth that has been known for decades and medicine was simply derelict, entirely of their own free will. If this didn't tip the scale, it's no wonder nothing we did could.

No, it doesn't. The new NICE guidelines were a win. The funding of DecodeME were a win. Did they mean the entire 'battle' was won? No, of course not, it will take winning a number of individual of smaller 'battles' in order to achieve 'victory'. The publication of this article, while irritating, is just more of the same and really doesn't represent anything new - this won't cause NICE to suddenly overturn the new guideline.

Implying that no progress has been made since 2015 is unhelpful. We do have a long way to go still but we are moving in the right direction, as this article shows.

 

[rvallee]

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

So a comment is... what... almost equivalent to a random person leaving a comment on a newspaper article? This looks like something that some journals call letters?

I mean in Lancetspeak, doesn't necessarily mean the same thing, it may be a special term they use.

 

[Shadrach Loom]

So a comment is... what... almost equivalent to a random person leaving a comment on a newspaper article? This looks like something that some journals call letters?

I mean in Lancetspeak, doesn't necessarily mean the same thing, it may be a special term they use.

Yeah, it’s essentially a letter, and there may well be a special term, but it’s definitely not an editorial.

Wasn’t it the ME Association twitter which was praising a pwME the other day for pushing herself through a daily half mile hike? If not, apologies to their socials team, but if so, this all seems sloppy.

 

[chrisb]

It may be a mistake, but it isn't the end of the world. The important thing is that it is something other than a peer-reviewed paper. Where would you get the peer reviewers?

 

[Kalliope]

Tuller comments on Twitter:
A whine of anguish from people confronting increasingly successful opposition to the ideological perspective they have been promoting for a long time. The arguments about patients and NICE ignoring the evidence are classic Freudian projections.

 

[Hoopoe]

Let's not get overly pessimistic. The authors are feeling threatened and are having difficulty making a coherent response. That suggests the criticism was on target.

 

[Lucibee]

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

I don't think there is any need to read between the lines. If she says that she was invited (commissioned) to write the article (comment), she probably was.

eta: I used to work for The Lancet, so do have some idea of how these things work!

 

[Medfeb]

This comment's author disclosure states:

• KGB reports "he is currently involved in the work with a review based on individual patient data that is about CFS/ME and exercise therapy.
• HK reports he "is currently preparing a review based on individual patient data of the outcomes of CBT for CFS/ME"

Does anyone know what that's about? I knew there had been a review of individual patient data a few years ago but thought that had stopped. Is it still ongoing? And are there two different ones?

 

[DokaGirl]

"The reliance on one subjective symptom"...., now where have we seen that before?

 

[Hoopoe]

"The reliance on one subjective symptom"...., now where have we seen that before?

The Oxford diagnostic criteria? It really is all projection in this article, isn't it?

 

[dave30th]

The important thing is that it is something other than a peer-reviewed paper.

Journals have different processes and names for different categories. This is clearly not an editorial written in the name of the journal. I don't know Lancet's procedure on these. just because a piece might be invited does not mean it is automatically not peer-reviewed, so best not to make assumptions. But whether it is peer-reviewed or just reviewed/edited in-house, it is fair to called it a "Lancet commentary" or "comment"--a comment that appeared in The Lancet. That is how I have referred regularly to the "Lancet comment" written by the Dutch team that ran alongside the PACE trial.

 

[rvallee]

Let's not get overly pessimistic. The authors are feeling threatened and are having difficulty making a coherent response. That suggests the criticism was on target.

The authors are irrelevant, it's that the fake controversy is still hot enough that this gets published in The Lancet, while the professional associations are all throwing a fit and playing politics behind the scene to prop this ideology up, that is annoying.

But make no mistake, this is a circle jerk:

INFORMAL
a situation in which a group of people engage in self-indulgent or self-gratifying behavior, especially by reinforcing each other's views or attitudes.
"those award ceremonies are big circle jerks"​

Basically the same (although this one is a gag):

 

[DokaGirl]

The Oxford diagnostic criteria? It really is all projection in this article, isn't it?

Agreed.

 

[Hutan]

It is uncontroversial that a diagnosis of CFS/ME rests upon subjective symptoms. But paradoxically NICE decided that evidence from clinical trials of CBT and GET showing improvement in subjective symptoms would
be considered unreliable.2–8 Given the first premise, subjective symptoms are the most valid endpoints, and interventions improving these symptoms are treatments, not only “symptom management”.

This seems to be a key argument that has been put around after the NICE guideline was published. I think many of the BPS proponents (and people who might regard themselves as neutral parties also) genuinely do not understand the enormous bias created by a combination of a questionnaire on 'how do you feel?', treatments that instruct that 'your assessment of how you feel is wrong', the natural desire to please a well-meaning friendly therapist, and the desire to feel that one's efforts to get better are bearing fruit.

Which is weird, because so many of these BPS proponents have had plenty of training in psychology.

We see, again and again, the characterisation of biased trials using only subjective outcomes as 'patient-centred', as being concerned with the patient's experience of their illness in a way that a trial with objective outcomes is not.

 

[Sean]

evidence from randomised trials.2 Since then, more randomised trials

Note the lack of 'controlled' in that description, as in randomised controlled trials. Which is the whole problem.

Let's not get overly pessimistic.

Yes, we have come a long way in the last few years.

Though let's make sure we don't get complacent either (not saying anybody is). This is not over by a long shot. The BPSers have made it abundantly clear they are going to go down with the ship.

So be it. Sooner is better.

 

[Barry]

...committee presented a new non-validated diagnostic definition of CFS/ME, making post-exertional malaise (PEM) a required criterion. This reliance on one subjective symptom for diagnostic purposes is inconsistent with the guideline committee’s downgrading of trials that use subjective symptoms as primary endpoints.

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

The ICC definition encompassed this back in 2011, so not sure where "new non-validated" comes from.

See "Postexertional neuroimmune exhaustion" in https://me-pedia.org/wiki/International_Consensus_Criteria.

 

[Barry]

This reliance on one subjective symptom for diagnostic purposes is inconsistent with the guideline committee’s downgrading of trials that use subjective symptoms as primary endpoints

It is uncontroversial that a diagnosis of CFS/ME rests upon subjective symptoms. But paradoxically NICE decided that evidence from clinical trials of CBT and GET showing improvement in subjective symptoms would be considered unreliable.

No it is not inconsistent/paradoxical. Diagnosis based on self reporting of subjective symptoms is likely significantly less prone to bias than trial outcomes are, especially when the treatments being trialled specifically operate via biasing of self reported subjective outcomes. Trials must utilise methods which minimise bias the very best that is scientifically viable, else they are worthless. Trials have the major advantage over diagnosis, that trial conditions can (and should!) be prescribed to best minimise bias; something likely not possible at the diagnosis stage.

Also, the controlled conditions of a trial provide a much more favourable framework for capturing differential objective data than at diagnosis time.

Also care needed to not conflate subjective outcomes with self-reporting of outcomes, although the two are related. If I walk a mile each day in a given time, then that is a pretty objective outcome. Providing I measure the distance and time to acceptable accuracy, then - assuming I don't actually lie - it is still objective even if I self report it. The problem would come of course if I just guess the distance and time, in which case it then becomes subjective, and would then be a self reported subjective outcome, not an objective one. But it should not be beyond the wit of trial investigators to deal with and control for such things. A diagnosing clinician will not have the luxury of such controls.

 

[Barry]

Let's not get overly pessimistic. The authors are feeling threatened and are having difficulty making a coherent response. That suggests the criticism was on target.

Agree. What else would anyone have expected from them? I see it as a clear stamp of success for the new NICE guideline. Our worst nightmare would have been if these people were showering it with praise!