Review Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

[Kalliope]

The review got referred to in a big newspaper in Norway the other day. It's about a rehabilitation clinic for LC with a GET/CBT approach (AiR). The article is paywalled, but here are a few auto translated quotes:


– What have they done to you?

– A lot of it is about the mental side, but also that I was ready to accept the information and knowledge they gave me at AiR. I asked myself: Do I want life to continue to be about dwelling on Covid, or do I want to do something about it? I had to make that choice myself. I like to use a metaphor: You can lead a horse to water, but it actually has to drink itself.

...
Psychologist Lars Gregorius Røv holds classes with the participants.

– I try to help people get out of a rut. Many are depressed, you don't really like being out of work and social life. We talk about focusing on all areas of life, not just the difficult ones, says Røv.

...
Physiotherapists Sara Chopra and Hugo Øren help participants at AiR's outpatient clinic get started with physical activity.

– Many people struggle with post-viral fatigue – they feel tired. What is special is that many of those who come here have actually not been very sick. They may have had a mild course of the disease, and yet they struggle with late effects. Often, these are people who are actually well accustomed to exercising, says Chopra.

...
Another recent study published in the British Medical Journal at the end of November concludes that cognitive behavioral therapy and a combination of physical and mental rehabilitation are probably the most effective for late effects after COVID, but the effect is moderate.

The authors of the article have analyzed data from 24 different controlled studies that included a total of 3,695 participants.

 

[rvallee]

I wonder if the fact that they called it a "living" systematic review is exactly because they have insufficient crumbs to use for the interventions they want to promote (CBT & exercise). So that when the inevitable criticism comes that bringing in 1 study for each main conclusion is not a "systematic review" they'll go: "Well, duh, it's living, it will be updated with additional publications."

Which would still make no sense for an organisation for which creating "living" systematic reviews can be appropriate (like Cochrane), and would be utterly ridiculous for what is just a journal publication.

(Handy if that's allowed if you want to produce smoke & mirror reference fodder for the promotion of your preferred intervention though.)


Edited to add: sorry if this has already been mentioned - I'm following this thread a bit, but haven't read it all.

It would make some sense, but as I copied from the description of what a living systematic review is, it's for issues that are rapidly changing and for which evidence will rapidly change, on the order of weeks or even days. Think early months of COVID, when they were trying lots of treatments and losing a lot of patients.

So it doesn't apply at all to this. But of course there is one set of rules for general medicine, and there is the set of fuck-you-that's-why for psychobehavioral woowoo. So of course they can use that excuse, and it will be allowed, but it's not meant for this at all. They are simply lying and cheating because they are allowed to by the very institutions that are supposed to not allow this. Because enforcement isn't even 99.9% of a system of rules, it's 100%.

 

[Kalliope]

The newspaper Morgenbladet has an article about the review with comments from co-author Signe Flottorp who is also research leader at the Norwegian Institute of Public Health (FHI).

Ziad Al-Aly is also interviewed. The article is paywalled, but here are a few auto translated quotes:

– There are so many strange things being sold to these desperate patients, and we must remember that medications can have side effects. As long as there is no scientific basis for using them, patients are wise to stay away. They should instead try what now has some documented effect, such as cognitive behavioral therapy and physical rehabilitation, says Flottorp, who also emphasizes that many people recover completely on their own.
...

Rather than assuming that the long-term ailments are primarily due to biological conditions specific to Covid-19, this school of thought, which also includes Flottorp, is concerned with complex interactions between the body and psyche. For example, the symptoms may be related to the brain and nervous system having learned to react in certain ways while you were acutely ill. In this case, it may help to change fixed stress responses and thought patterns through psychological and behavioral treatment. For example, psychology professor Silje Endresen Reme, who is an expert on stress and pain, has recently launched a course she calls “Mind Body Reprogramming”. Doctor Vegard Bruun Wyller, known for his controversial ME research, has collaborated with Kysthospistalet to test short-term cognitive behavioral therapy and graded exercise on long-term Covid patients.

The systematic review will be updated as new studies are published, but Flottorp says that the results so far are completely consistent with established knowledge about other fatigue conditions that are typically triggered by infections, including what is called chronic fatigue syndrome or ME (CFS/ME).

– For CFS/ME, there are also systematic reviews that show that cognitive behavioral therapy and adapted exercise reduce symptoms and improve function, while no other treatment has yet been found that works. These findings about "long-COVID" are therefore completely as expected, says Flottorp.

Therefore, she believes that the vast majority of clinicians will agree that the approach to patients with fatigue can be the same regardless of the specific diagnosis or what has been the triggering cause.

...

– The review ignores the very important evidence that points to how biological processes are disrupted after infection. It is by understanding how to use this knowledge therapeutically that we will make progress, says Al-Aly.

– Do you see any place for behavioral therapy in the treatment of long-term COVID?

– That is an idea that I hesitate to embrace. This is a biological, infection-triggered disease. A heart patient with a blocked artery may feel a little better after behavioral therapy, but the underlying blockage will still be there. As long as the treatment does not attack the root cause of the problem, it becomes more like a cosmetic treatment, says Al-Aly.

– In Norway, several people have believed that talking too much about the danger of long-term COVID itself can exacerbate the problem – because it is a disease that can be partly driven by fear and expectations. What do you think about that?

– There is no empirical evidence for such a thing. Surely people don't get more cancer or heart disease because we talk about it more? This is the problem with the other camp in this discussion – they have all these ideas but no evidence. We do experiments and publish the results. But just making hypotheses and teaching people that long-covid could be a self-fulfilling prophecy… No, that’s an archaic way of thinking.

 

[Snow Leopard]

Rather than assuming that the long-term ailments are primarily due to biological conditions specific to Covid-19, this school of thought, which also includes Flottorp, is concerned with complex interactions between the body and psyche. For example, the symptoms may be related to the brain and nervous system having learned to react in certain ways while you were acutely ill. In this case, it may help to change fixed stress responses and thought patterns through psychological and behavioral treatment.

I've had enough of these people's vague speculation. Show us some actual science please or GTFO.

 

[SNT Gatchaman]

I might put that on a T-shirt.

 

[Midnattsol]

I was so happy when Al-Aly showed up in the middle of that text as at the beginning I was worried Flottorp would get to tell it all her way. Too bad she still got the last word, but Al-Aly was good in the middle

This part:

– There are so many strange things being sold to these desperate patients, and we must remember that medications can have side effects. As long as there is no scientific basis for using them, patients are wise to stay away. They should instead try what now has some documented effect, such as cognitive behavioral therapy and physical rehabilitation, says Flottorp, who also emphasizes that many people recover completely on their own.

Is tragicomic seeing she mentions lightning process.

 

[Arvo]

It is also a decades-old argument from the CBT pushers, used from the beginning. We're so worried about the effect of alternative treatments desperate ME patients are trying! Anyway, they should be treated with our thing based on what we just made up: graded exercise, cognitive indoctrination, isolation from medicine and encouragement to ignore their symptoms.

(And it's probably no coincidence that it's also an antique from the history of hysteria when fans of the "nervous" explanation expressed their worry about "unnecessary operations" [hysterectomies] on women.)

 

[Midnattsol]

I was talking to some non-Norwegian friends yesterday about reverence for doctor's in different cultures and I was reminded that in Norway we have the "superhero" doctor surgeon Jonas Fjeld from ~1920, that was made into audio plays in the late 1980s-early 1990s. Around the same time we had the Knut Gribb (detective) series. In both of these series, hypnotism is super effective. Maybe there was something in the water around that time that made this very impactful in Norwegian thinking.

 

[Jonathan Edwards]

Maybe there was something in the water around that time that made this very impactful in Norwegian thinking.

Would that be the water around the Norwegians when they jump in a freezing lake after a sauna - or is that the Finns?

I have always thought you would need to be hypnotised to try that. I don't mind the flagellation with birch twigs so much.

 

[rvallee]

says Flottorp, who also emphasizes that many people recover completely on their own

A fact that completely nullifies all their claims of effectiveness, since they only ever barely show anything a single hair above minimum statistical significance, never anywhere close to the natural rates of recovery, and especially nullifies some of the claims made over the years, especially by the likes of Crawley and Chalder IIRC, who made a lot of noise about how odds of recovery are only good with their treatments. Even though the UK fares no better than every other country that doesn't even acknowledge the existence of ME/CFS at all.

This should matter a lot. In a sane world it would be very significant. But as evidence that we are not in a sane world, if not the whole world, at least this bunch of ideologues, it doesn't matter one bit.

 

[Nightsong]

Two more rapid responses have been added, including one from a British GP with LC and, interestingly, a methodological critique from the authors of the REGAIN trial, who complain that the authors do not use their adjusted analyses & also used the wrong timepoint, leading to a potentially misleading representation:

https://www.bmj.com/content/387/bmj-2024-081318/rapid-responses

 

[SNT Gatchaman]

interestingly, a methodological critique from the authors of the REGAIN trial, who complain that the authors do not use their adjusted analyses & also used the wrong timepoint, leading to a potentially misleading representation

Overall, this means that the interpretation of the REGAIN trial presented here is potentially misleading. We look forward to seeing these issues addressed in the next iteration of this living review

LOL, a bit awkies for this "gold standard review". @dave30th

 

[Robert 1973]

Meanwhile, still no sign of the open peer review document.

Spoiler

They won’t be published. At least, not unless someone like @dave30th holds their feet to the fire.

 

[Robert 1973]

LOL, a bit awkies for this "gold standard review". @dave30th

Fool’s gold standard?

 

[rvallee]

Two more rapid responses have been added, including one from a British GP with LC and, interestingly, a methodological critique from the authors of the REGAIN trial, who complain that the authors do not use their adjusted analyses & also used the wrong timepoint, leading to a potentially misleading representation:

https://www.bmj.com/content/387/bmj-2024-081318/rapid-responses

The comments from the REGAIN co-authors really show the deep issues with so-called evidence-based medicine. They are arguing over trivial details, such as whether an analysis that strictly uses fuzzy subjective ratings in an open label heavily biased trial that isn't even properly randomized reaches the barest minimum for a blip, or misses it by a hair. In an unrepresentative cohort, no less. All of which ignores the fact that this treatment model would never be able to scale to anything more than 2-3% of the patient population, from what at best can be argued to minimally "help", in secondary analysis, at most 1/7 people using some generic misleading definition and an obvious misunderstanding of what PEM is. What ridiculous nonsense.

And their argument over the choice of timepoint is very weak, but also makes the whole thing a complete farce. Regardless of which way it influences the conclusions. To argue from this that supervised rehabilitation is a true universal cure, and this is exactly what gets argued when the details are removed, is basically insane. What a joke industry.

 

[rvallee]

Fool’s gold standard?

That's not fair. Pyrite can be useful.

This? This is no such thing. Mostly just fools and the hill they choose to leave us to die on.

 

[Robert 1973]

Meanwhile, still no sign of the open peer review document

I’ve submitted a brief Rapid Response highlighting the absence of any peer review documents and asking for that to be rectified.

 

[rvallee]

As I have previously noted, COVID minimizers, LC deniers and Internet trolls love to use the garbage produced by the psychobehavioral ideologues to justify the same conclusions they started with. Yesterday a tweet from a HCP who had to retire from the NHS because of LC got a lot of coverage with 22M views on Xitter, and some users decided to reject reality and substitute their own, including one "Community note" that cites this study as evidence that LC is a psychological disorder:

A study in the BMJ https://www.bmj.com/content/387/bmj-2024-081318 concludes “Moderate certainty evidence suggests that CBT and physical and mental health rehabilitation probably improve symptoms of long covid.”

The study also concludes that there is no evidence that non-psychological have any impact.

https://x.com/i/birdwatch/t/1869655890204442643

(You need to be enrolled in Community notes to see this, so most users won't but providing link for reference, and advising people to mark it down as unhelpful)

One major issue with how evidence-based medicine fails is over language. People read "probably improve" and think it's probably in the 60-80% range. Even in the case of PACE, the very best they can boast of is 1/7 reports some sort of minimal subjective benefit with no objective equivalent. That's enough to warrant a "probably improve" label. And of course this deceitful language is explicitly abused to create false impressions, as many newspapers have covered this review hinting at a complete and total cure.

The tweet itself is, predictably, filled with trolls and deniers mocking and dismissing his account.

 

[SNT Gatchaman]

The tweet itself is, predictably, filled with trolls and deniers mocking and dismissing his account.

Contrast the same user's post on Bluesky https://bsky.app/profile/greendarrenshipley.bsky.social/post/3ldnghte7lc2e

 

[Robert 1973]

I’ve submitted a brief Rapid Response highlighting the absence of any peer review documents and asking for that to be rectified.

My Rapid Response has not been published, and there are still no peer-review documents on the site.

The BMJ website was lagging a lot when I submitted my RR. The first time it lagged for so long I gave up and re-submitted it. I think I got a green message on the screen saying it had been received, but I've not received an email confirmation, so I'm wondering if there may have been a technical problem. Can others who have submitted RRs to the BMJ remember if they received email confirmations of receipt? @ME/CFS Skeptic @InitialConditions @dave30th