Stacking the Deck - The systemic review recommending CBT & exercise for Long Covid.

A QUICK SHUFFLE

On Wednesday 27th November a new paper was released in The BMJ, ‘Interventions for the management of long covid (post-covid condition): living systematic review’. This is a meta-analysis of treatments for Long Covid or living systemic review as they call it. A living review is an approach developed by Cochrane to provide a continually updated process - bad news for Long Covid patients who now have an ever-relevant biased 'evidence' collection in the space. The conclusion, they state, is that the research points to two interventions that 'work'; CBT and intermittent graded aerobic exercise. Yes, we can hear you sucking air through your teeth and slapping your hand on your forehead. Maybe that’s why so many photos of people with ME and Long Covid look like we have our hands super-glued to our foreheads. It’s because we are so fed up with being told we need to do CBT and exercise?!

And yes, there are serious issues with this paper. This article will go through the review and we can explore on a journey of discovery at how bad science can be. Hurray! (irony).

AGENDA

Let’s first look at the authors. There is a unifying theme amongst these scientists and that is, a career-invested bias towards the belief that rehab (CBT & exercise) works. Busse, Garner and Flottorp, especially have past form, to the point where it becomes a conflict of interest. We see a strong Canadian presence; Zeraatkar, Ling, Talukdar, Shabab & Pitre. This is relevant for the Long Covid Canadian Guidelines coming, as several are involved. And of course, what is a paper on lifestyle interventions without Paul Garner?

To be honest, we could stop there. The adage of never trust a person when money, career or reputation is at stake is enough to load the deck. But where’s the gamble and fun in that? Let’s look further...

SEED THE PSYCHOLOGICAL

The paper begins by seeding the idea that there are psychological factors in the causation of Long Covid, “reported psychological distress.” This is, of course, necessary to justify pushing behavioural treatments. Psychological causes need psychological interventions.

Note the lean towards the hysteria model, in which the biopsychosocial is rooted in. It is mentally unstable women that are more affected and more at risk. O those poor weak, emotional creatures, they must need rescuing, even if they don’t want it.

Yet, as all good lies, it’s dropped in with many truths. We can see that established knowledge about Long Covid is mixed in; that severity of infection does not indicate Long Covid and that it can release and remit. More heartstrings are then tugged by describing the lack of research and care in low and middle-income countries. Hopefully, by now no one has noticed the joker has been slipped in the pack and they can’t possibly be bad people/scientists because they pay attention to those more vulnerable.

DOUBT

The paper then sets doubt in the reader's mind. This is doubt in forthcoming results and in any research that has been rightly prioritised and fast-tracked to meet the urgency of the need to solve Long Covid. This is quite bold. Whatever the issues of RECOVER, to essentially sideline a massive $1 billion effort, because they are published “too fast” is quite amusing really. Is there a magic time that results become valid?

There is also a pot calling the kettle black here. As yes, some intervention trials have been published. But so have all the trials that you are assessing in this meta-analysis. Have they also been published too quickly? Isn’t that what you are supposed to be doing here, clinicians ready to analyse updated research in a living review? The studies that they have included in this paper likewise produce conflicting results and the majority do not support CBT and exercise. It is in essence a biased review, as it self-selects the evidence it wants to include. Handy.

THE DROP

More doubt is planted as a blanket statement is made that there are no trustworthy, up-to-date summaries. (There are several well-recognised summary papers on Long Covid). Then we have even more doubt and fear sown by stating that patients may come to harm because their review hasn’t been available. Then, miraculously, the solution is given to us by the invested authors; their ‘trustworthy’ review. That it is a living review seems to mean it is inherently trustworthy. Really?

We seriously have to question their use of language. Trustworthy. What does this mean? Why is this paper inherently trustworthy? It’s written as a given. And we should understand that science is not based on trust, it is based on method and results.

The reason for this seems to be to try to hedge the critiques that will be applied to the interpretation of this paper. Yet surely that is what we are supposed to do, as indicated in the previous image? We don’t need to be emotionally coddled and reassured (Terence Stephenson’s favourite phrase) we need objective measures and effective treatments.

Remember, one can always find an ‘expert’ and a paper to justify any wacko belief. Climate denial & RFK are prime examples in our post-truth world.

STOOGE

Like a planted man in the audience of a magic show, Paul Garner shows up as the ‘lived experience’. With his extensive connections, bias and training, he is too ‘in-house’ to be regular joe public involvement. He's basically just another joker card that’s pulled out ad nauseum for any paper that wants to push a behavioural, somatic view.

Man, this is getting embarrassing.

UP THE CERTAINTY

To increase the assumption that your preferred intervention actually works, add a barely distinguishable colour scale & make sure your colour is a green associated with validity. It’s literally a subliminal traffic light system.

Note: 'Probably' isn’t an explicit term for a scientific discovery. Yet we see it littered through this paper. There’s too much at stake to risk people’s health on a probably. Yet, this is a common tactic of the BPS school. The preferred intervention or theory is suggested with a light, maybe, or probably, because in reality they can’t say for sure. But the damage is done, people and the press forget the uncertainty & the narrative is changed. Only the headline finding need to be clear.

EXERCISE

We can see from the above image that aerobic exercise x3-5 a week is going to decimate some people with Long Covid. This also validates the author’s ideology, as they do not mention PEM/PESE, CPET, NICE, other papers or patient testimony that counters their view.

And this is where the community is at a disadvantage, the lack of large-scale trials on PEM/PESE and the pathophysiology of Long Covid. Yet, the ethics of carrying out PEM/PESE trials at scale is unethical due to the harm they would produce (like masks). It’s a catch-22.

But this is where scientists should be evolved enough to listen to patient testimony.

CHERRY PICKING

We see that there are 8 trials selected about exercise. But only ONE gives moderate certainty that exercise can benefit. Note the PROM SF-36 is the subjective outcome used. The SF-36 is a Short Form of 36 items health questionnaire. It was used in the PACE trial and in many ME/CFS studies. One of the main issues with it is that it mixes the physical and mental, which allows one to misconstrue that there has been physical improvement where one might have only felt better emotionally.

We can see in this paper (Murdock et al 2016) which investigates PROMS (patient reported outcomes measures) that the SF-36 is questionable and has unacceptable internal consistency and ceiling effects. It also has significant problems in accurately measuring substantial reductions in functioning for people with ME/CFS. There are issues for the simple reason that this PROM was not designed for ME/CFS. With its focus on fatigue and that it does not distinguish PEM or fatigue present in other illnesses. Therefore, we have to conclude that the SF-36 is a poor PROM and far from a reliable picture. But it is an excellent PROM if you want to skew your results for an appropriate ranking score. But this is basically the history of, to borrow the phrase of Dr Tuller, crap ME/CFS research.

One can see a loading of the dice, as patients were given questionnaires to assess ‘disease perception’. What PROM was used, yes, the SF-36. (See above).

Patients were also offered “group exercise, medical training therapy, aqua fitness, terrain training/walking, and circuit training.”

Yet, weirdly, the paper concluded: “No significant differences between the training groups were detected with respect to anthropometric and clinical data, comorbidities and medication, or perceived disease burden."

The paper states there was “No correlation of exercise capacity was detected with the other questionnaires used.” Yet, when the SF-36 was used “As a response to the exercise-based medical rehabilitation, patients improved in all relevant domains from T0 to T1.” Wow, amazing, fireworks in the sky. A dodgy, internally inconsistent questionnaire finds across the board improvement, it must be true. Or is the SF-36 another joker?! Seriously, can the bias of these cherry picking researchers be any more blatant?

Two conveniently didn’t have the outcome measures they “were interested in”. The other 5 were of low evidence. That exercise is picked up by the press as THE cure is basically a joke and a stacked deck.

SLEIGHT OF HAND

If we look more closely at the exercise study (Mooren et al 2023). This is really quite something! 70 were allocated the interval training, yet only 45 were analysed! A drop of 25 people, 11 because the wrong training was given. Jesus, talk about inept. We are basing a recommendation to a global audience on a paper where the scientists couldn’t give the right intervention. The study also didn’t measure PEM/PESE, had no control group, and no group to compare it to rest or pacing. Sigh, more rubbish.

All of these issues in this study would mean it would be classified on the NICE ranking scale as very low to low. Yet, there are researchers in this study closely linked to Cochrane (Garner & Busses). Cochrane has redefined their grade tool to rate poor subjective based CBT & exercise studies as higher quality. Talk about loading the dice! There are still issues with Cochrane not withdrawing their harmful exercise review for CFS in 2019. Petition is here

CBT

Again, the conclusions drawn on the efficiency of CBT are only drawn from ONE paper. This is hardly a meta-analysis and practically needing resuscitation.

Dr David Tuller has already pulled apart this Dutch ReCOVer, (Kuuet et al 2023) paper. It’s unblinded and only reports on subjective outcome measures. They do not mention the one objective measure because it shows that CBT had no effect. Tuller rightly points out that this is research misconduct and fraudulent. Yet, we have a meta-review & global press reporting on this. Mainly because journalists do not look at source papers & assess them critically.

It also shows the old boys’ network at play, as Hans Knoop is a leading activist for the cognitive behavioural model of ME/CFS.

Again, we have the confidently placed assumptions about unhelpful beliefs and anxiety being factors in Long Covid. This is the paper claiming its loyalty to the biopsychosocial model.

PINCH OF SALT

The torment continues to the point they must be drunk on cherry brandy. We know there are a raft of studies on Long Covid. Half the paper is a detailed discussion of how they selected the papers for meta-analysis, which lures you into a false sense of authority. It’s a blind by science approach. Yet, to only choose 24 and base your discussion on 2 papers and inventions is just a joke. Talk about selection bias. Yet, if you only put cherry flavour in the slush puppy machine you are going to get cherry slush puppy.

Yet, they can still only claim the effects just reach the MID outcome and are modest. With the response bias from subjective outcomes and the fudging of the Cochrane grading this can only be taken with a pinch of salt. Note: Just repeating probably endlessly doesn’t increase the probability of it actually working.

BRAIN RETRAINING IS A DUD

The good news is that it found amygdala & insula retraining, which is what The Gupta Program & the other Brain Retraining programs are, to be non-effective. And if this group can’t find evidence for it, it’s likely no one can. So, why Garner claims that we need to research neuroplasticity is contradictory and shows his own bias. It can be quoted back at him, though!

RACKETEERING

Here, we moved fully to the dark side. This is a meta-review, yet it slides in research not selected in the paper. It is not even in the form of a literature review. Most of the discussion is a position stance, not a fair or critical analysis.

That CBT and GET have been found to be effective for ME is blatantly untrue. One can see this in the evidence here. We know this because of the NICE guidelines (that this group continues to try to dismiss because it doesn’t meet their agenda). It ranked all CBT and exercise interventions as low and very low.

The problem is that the people who can’t see this have the power to write papers. So it looks to the outsider that both sides are just flinging papers at each other like bullets.

How one actually determines what is accurate is to look at patients. We can see millions still with ME/CFS, we have testimony that CBT and GET are harmful. It is an old and outdated belief that won’t die because some career academics won’t admit they are wrong.

There are more dastardly shenanigans, as pointed out by Prof Brian Hughes, with the risk-of-bias assessments for CBT and exercise placed in an obscure 116p supplement on the BMJ website. These basically reinforce the risk of bias of using the SF-36, as discussed earlier, and other subjective PROMS, such as the CIS and MFI-20.

In short, based on the authors own risk-of-bias analyses (which are buried away in an online supplement), the findings of the latest BMJ long Covid review certainly fail to impress. Prof Brian Hughes

THE PROPAGANDA CONTINUES - PSYCHOLOGISATION

The usual tricks are played here too. This is a remarkable example of the Motte and Bailey fallacy. One places the Bailey, the actual controversial theory that Long Covid and ME have psychological factors, thereby psychologising the disease. They state that the illness is influenced by ‘unhelpful beliefs’ and ‘may’ (again notice the uncertainty but the plant is made) be deconditioning. And then offer a Motte or a distraction, as a more reasonable position to defend, or a reason to why you aren’t doing what you say you are doing.

This is exactly the same old crap ideology that has created decades of mistreatment & stagnation.

THE MOTTE

So, what is the Motte? What is the card switch? It’s the same old double negative, it’s not not real and that it’s biological. Yes, we know that, but notice it’s a distraction. It’s a common sophistry and persuasion tactic.

The problem is this argument is complex to unpick and most aren’t interested. No one is saying it’s ONLY caused by mystic, floating, non-physical minds creating delusive ideas of illness. No one is saying it is purely made up.

The reason it’s ‘contentious’ is because it doesn’t work and is harmful. Honestly, do they really think if ME and Long Covid could be helped by exercise and CBT we’d all be NOT thrilled and running around patting them on the back?

But, this is half the problem. They aren’t getting the praise and recognition they crave as career scientists. No one likes to be wrong, so they castigate and bite back in all too human, non-scientific behaviour.

There is then some general wittering about gut bacteria, to enforce the point about the physicality of Long Covid and how we cannot accuse them of psychologising the illness. But remember, they are casting the argument into black and white, this or that, when really it’s an unholy shade of grey, of influences, factors and a mess, it’s difficult to extract certainty.

As there is no bottom to this argument, as one cannot not prove, one cannot falsify that mental and emotional influences affect illness.

HEDGING

They hedge their bets, though, and sit on a very comfortable fence. They say it’s not psychological, but that it doesn’t rule out the possibility of a somatic cause. So either way, they can maintain their agenda.

The insertion of the possibility of somatic is important. Many BPS papers do this. It precludes that Long Covid can be perceived and even diagnosed as Somatic Symptom Disorder, which is where chronic illness ‘coincides’ with maladaptive thoughts, emotions and behaviours. It’s a disorder that can be diagnosed as a psychiatric disorder due to its highly controversial inclusion in the DSM-5. Controversial because the criteria were widened and broadened to such an extent by Michael Sharpe and his cronies that virtually any long-term illness can be grasped into psychiatry. It basically acts as a gateway to epistemic trespass and psychiatric overreach.

There is such toxicity about calling an illness psychosomatic that it’s hidden in the language. Psychosomatic (psycho = psychological & somatic = body) literally means the psychological affecting the body, which is what they are actually saying. But they tell you they aren’t because it’s “real”.

But they hide behind conjecturing, that it might be a way to help patients ‘cope’. False hope more like, and that’s worse than no hope because there aren’t any actual treatments that work.

BULLIES

One can see a prime example here from one of the authors. It won’t be linked, as it’s just vile. Resorting to an ad hominem attack to justify your paper just shows how weak the arguments actually are.

This type of framing is as old as the hills. Depending on the point of view, one can be a freedom fighter or a terrorist. But to use this political language to a lay person who does not agree with you is way out of proportion and deeply unkind.

This is a form of tone policing too (yes, also called gaslighting). It’s like saying, hey, you don’t want to be stabbed in the leg with a fork? Well, that’s a very strong view and because we have written a paper saying being stabbed in the leg with a fork is good for you, we know best. Now you might say, proportion, proportion, CBT and Exercise are not like being stabbed in the leg with a fork. Well, I, for one, would rather be stabbed every day in the leg with a fork than be made to do aerobic exercise several times a week with Long Covid. It is beyond irresponsible and highly highly dangerous. The level of suffering it would inflict is way beyond fork-stabbing.

They might dismiss criticisms of their work and say it’s worthless and irrelevant, but you can tell that it actually really bothers them, hits a deep vein, because why hit back so vitriolically if it doesn’t?

IDEOLOGUES

This comment actually raises an interesting point. Scientists can be very quick to point out facts in areas they don’t have training in. The fancy term is epistemic trespass. It’s also quite common for them to see science as a fully objective, unstained edifice. Thereby often trying to put themselves on an untouchable pedestal. Yet anyone trained academically in the history of science knows this statement, to put it in populist terms, is bonkers and, to be honest, a bit stupid. Historians would see this as an incredibly naïve statement, as science is inherently political and social and therefore influenced by ideology. There are so many examples of differing, contentious scientific views because of ideology it’s embarrassing; Copernicus’ heliocentric view, Darwin and evolution, the Climate crisis, Mesmer and Magnetism, the list is endless.

If science was pure and not made by the humans who design it, there would be no debate and no contrary views.

It’s also an attempt to ward off & invalidate criticism as ‘strong views’. If a scientist can’t accept critique without denigration, then that’s not exactly science. And let’s not even get started on replication, as they could only find one study for each intervention in a meta-analysis. That should stop the argument about science right there.

Much of the confusion around this meta-analysis is that it hasn't been able to accurately phenotype the different types of Long Covid. That people point this out isn't ideology it's science. Many of the issues in ME/CFS research come from the vast capture of illnesses that aren't ME/CFS because of the wide criteria, especially Fukuda and Oxford. What we need is to be able to effectively sub-group people with Long Covid to give them the most likely intervention that will work. To do this we need to do phenotyping biomedical research. Or, hell, even listen to patients who have PEM/PESE, ME and for whom these treatments are going to be harmful. What this paper is, is an inability to categorise all the suits of a deck of cards. It's whacked them all together and no wonder it's a mess.

PR’D TO THE HILT

We know that the Science Media Centre is deeply embedded with the biopsychosocial school. We can see its libertarian, right-wing influence in Monbiot’s ‘Invasion of the Entryists.’

Its anti-environmental & anti-trans stance aligns nicely with the light touch, dismissive and economical benefits for the state with the cognitive behavioural model of Long Covid and ME. And yes, we have old BPS timer Chalder picked as an expert opinion. Can there really be this many jokers in the pack?

It’s like playing an endless game of whack-a-mole when you think they are losing influence and out they pop again. It feels like a constant barrage of friendly fire, as these people are actually supposed to help us.

There are three expert opinions, two more from Dr Janet Scott and Dr Daniel Munblit. Each slam dunking the importance of the conclusions from the study: that CBT and Exercise are valid interventions for Long Covid. There are the usual protestations about holism etc and how CBT needs to be part of the package. But we know from on-the-ground experience that the medical profession can't handle the nuances in the practice of CBT for chronic illness. Having the rehab approach slipped in with multidisciplinary teams has created a disaster in real terms for patients.

And this is enough for the media, it is a fallacy of the appeal to authority. Of course, these people should have the epistemic authority to be trusted in what they say. But if we actually look at the two papers, the results are inferred from, we cannot, in faith or reason, come to these conclusions.

Yet, because of the connections between the BPS school and Garner, we see a mass flurry of headlines the world over claiming that cures, treatments have been found for Long Covid. And that’s really the point. It’s the narrative and the assumptions the public and the medical profession will make from seeing the headlines. The jokers are hidden and it's the title on the pack that creates culture and mass visibility.

MOTIVE

So, in the beginning, we saw that the Canadians are heavily involved with the indefatigable Garner. We know from the consultation of the Canadian Draft Guidelines that it’s a prime moment. Cochrane Canadand paper authors, Flottorp and Mbuagbaw, are involved in Canada's guideline process. And meta-analysis is key evidence for guideline committees. This timing is likely no accident and this paper will be keenly placed as an up-to-date review, ready to consolidate the key recommendations of the Canadian Draft Guidelines, CBT and exercise. It is interesting that this paper was released on the day the public consultation period ended. For a more detailed rundown of the serious issues, please see Prof Brian Hughes and Dr David Tuller’s analysis.

You see, one might think one is centre stage and the main player. Yet if we remember the wisdom of the Greek tragedy, it is the chorus who are the truth tellers. It is the chorus who call out and try to remind the protagonist of hubris, of falling off the path. So, maybe, just maybe, if there are thousands, nay maybe even more, calling out that exercise and CBT hurt people with Long Covid and ME, the main players should listen. Because the gods do not like hubris.

LIGHT AMONGST THE TREES

Yet, not everyone is taken in. Most know this is junk science. We can see this from Dr Natalie McDermott's response on BBC Radio Four.

It’s like saying to someone suffering a heart attack; we have no treatments but we’ll help deal with your symptoms by talking about it. Dr McDermott

On many fronts, battles have been won, to a certain extent. We can see this in the UK with the NICE Guidelines and the medical stance of the US. But it is like a multithreaded hydra, knock one head off and more just flipping grow. That we have to repeatedly deal with these repeated and poorly evidenced arguments is just beyond a joke. It’s incredibly draining on people’s energy, for people that don’t have energy. It is a deep epistemic injustice.

We would also like to ask Dr Eric Topol, who is a wonderful advocate and cheerleader for people with Long Covid and ME, to consider his reposting of this paper without a comment or analysis of the root papers. Exposure and engagement are important for people with large, trusted platforms.

A good place to end is this comment by Prof Danny Altmann.

Related Posts

Plato vs Paul - Is Dualism Dead?