Brief Outpatient Rehabilitation Program for Post-COVID-19 Condition, Nerli et al, 2024 - with comment from T. Chalder

[Kalliope]

Science Media Centre

Expert reaction to a study looking at a brief outpatient rehabilitation program (with a cognitive and behavioural approach) and self-reported physical function in people with long Covid

The expert is Prof Kevin McConway with declared interests:
"Previously a Trustee of the SMC and a member of its Advisory Committee.”

quote:

The researchers explain the theoretical reasons for the using CBT in general, and indeed for the particular CBT intervention they used. These reasons are to do with interactions between mind and body – though the researchers are certainly not saying they think that long Covid is ‘all in the mind’. But again, because this is a pragmatic trial, it doesn’t matter to the evaluation of the effectiveness of the CBT whether the researchers’ theoretical reason for using CBT are valid. The only point of the trial is to find out whether it works effectively, in comparison with care as usual at this centre.

 

[rvallee]

The nocebo effect (expectation of harm) is hugely powerful.

Evidence required.

Especially since the evidence is literally the opposite.

By definition the "placebo" is the smallest effect that can be reported, since every treatment has to be better than no effect.

So its evil twin can only be the smallest possible effect that can be reported. It can't be anything else.

It's institutional failure that nonsense like this can be repeated by professionals in what are supposed to be professional documents, and not only just repeated but here it's foundational to their model, along with other vague nonsense.

 

[ME/CFS Skeptic]

n the paper, they mention the 10-pt threshold only in discussing power calculations but not elsewhere, unless I missed it elsewhere.

In the protocol they state it a bit clearer:

The SF-36 subscale Physical Functioning (SF-36-PFS) will serve as the primary endpoint in the present study. A difference of 10 points is considered clinically significant. 43 Similarly, in a study of CFS/ME which shares similarities with post-Covid syndrome, the minimally clinically important difference of SF-36-PFS was reported to be 10.

 

[SNT Gatchaman]

The intervention was theoretically grounded in the CATS. In brief, CATS states that any stressful event (psychologically as well as biologically) necessitates an adaptive response, which may imply bodily symptoms. Normally, the adaptive response is brief and self-limited. However, a sustained response may have disadvantageous effects and result in a wide variety of bodily symptoms. Cognitive factors, such as subconscious expectancies, are key determinants of the degree and duration of the adaptive response and are themselves shaped by individual learning history. Of particular importance are the stimuli expectancies influenced by classical conditioning and response outcome expectancies that occur with operant conditioning. Altering these expectancies is thus the purpose of the intervention.

always included an explanation of normal responses to stressful situations, emphasizing that moderate stress may promote thriving, and how certain infections (eg, COVID-19) could trigger maladaptive responses and diverse, unpredictable, and bothersome symptoms (eg, fatigue, dyspnea, and brain fog).

Ah yes, those bothersome symptoms.

Three individuals diagnosed with PCC and receiving the routine outpatient program before the present study provided input on design in the planning stage of the project. Representatives from the patient organization Recovery Norway participated in discussions concerning the intervention, and the consumer group from the International Collaborative on Fatigue Following Infection advised on analysis and dissemination strategies.

 

[SNT Gatchaman]

Most secondary and safety measures favored the intervention.

Which safety measures didn't?

Well, if you note the framework the researchers believe to be true in the above post, then the following might suggest that safety data just possibly may be missing some signals.

Questionnaire results and spontaneous patient reports were used to monitor adverse events (AEs) and serious AEs (SAEs). Adverse event was defined as any medical occurrence in the follow-up period, whether or not attributed to or considered to be causally related to the intervention. Serious AE was defined as an AE meeting any of the following criteria: deadly, life-threatening, requiring hospitalization, or resulting in a major disability. Three physicians (T.F.N., J.S., and V.B.B.W.) rated independently whether an AE or SAE could potentially have been caused by the intervention and discussed discrepancies until consensus was reached.

So again a risk of marking their own homework.

 

[SNT Gatchaman]

A total of 17% of the individuals in the intervention group and 20% in the CAU group met the recovery threshold, defined as SF-36-PFS score at the population norm or higher at baseline

So either SF-36-PFS is meaningless or they're enrolling a proportion of healthy people (1 in 6 — 1 in 5) in the study.

On the other side, the CAU group included AEs / SAEs of "Major depression, received electroconvulsive therapy".

eTable 12. Decrease in SF-36 Physical Function Subscore from baseline to T1 in the intervention group, qualitative evaluation —

• Video only. No common ground for combined effort, ended therapy early. Further decrease from T1-T2
• Bad experience from before with "our" way of working, Symptom focused. Applied for permanent social benefits. Difficulties at work. Increase above baseline at T2.
• Described positive development, but challenges regarding family. Pregnant. Increase above baseline at T2
• Multiple new infections before end of treatment. Experiencing work as a negative factor. Increase above baseline at T2.
• Increased symptoms after meeting with the medical doctor. Wanted more tests and examinations, and declined further treatment because of this. Same score T2.
• Long time since acute infection. Vaccine reaction. Applied for permanent social benefits and had ongoing insurance case with the government. Referred to Mental Health Care because of trauma at work during the pandemic. Further decrease from T1-T2.
• Disappointed with our treatment, ended follow-up in the second meeting with therapist. Further decrease from T1-T2.
• Effect of treatment and permanently back to work at encounter four. New infection and menopause before end of treatment. Increase again from T1-T2.
• Severely ill. Previous treatments without effect. Ended treatment at third encounter with therapist. Same score at T2.

 

[bobbler]

Well, if you note the framework the researchers believe to be true in the above post, then the following might suggest that safety data just possibly may be missing some signals.



So again a risk of marking their own homework.

magicked away adverse events by insisting on consensus. It is outrageous silencing and disappearing of real things - and tbf I'd highlyg suspect that most were at risk of perceived threat in being honest and saying 'it makes me worse' so you come up wiht an excuse. This is a very bad habit in medicine if it is going to be introduced of allowing people to pick apart patients and make stuff up when things don't go their way.

 

[bobbler]

Ah yes, those bothersome symptoms.

narcissistic tripe: it's not what I did to you, it was how you decided to feel it.

 

[Maat]

Ditto to al the above. especially 'new and emerging' and 'effective and safe'. Don't forget UK Covid Inquiry (including Long Covid) still ongoing...

 

[Kalliope]

Enthusiastic article today about the study from the public broadcaster NRK with comments from researcher director at the Norwegian Institute for Public Health (FHI) Signe Flottorp.

Ny studie gir håp: Inger-Johanne ble frisk etter long covid

automatic translation: New study gives hope: Inger-Johanne recovered after long covid

quotes:

Here they have been concerned with what the patients are able to cope with, and not symptoms, says consultant Tom Farmen Nerli.

– We don't work on alleviating symptoms from hour to hour, but on functioning over time. Exploring activities and tasks in arenas that patients miss, or that they want to do more of.

To achieve this, it is important that patients are confident about their symptoms and what they represent. Then it becomes easier to let them go, explains Nerli.

– There is an understanding that activities are actually needed for this to happen. The body has a fantastic ability to sort things out when we make the arrangements for it.

Inger-Johanne Thorstein was afraid of doing anything that could make the disease worse again.

She was told to put those thoughts aside.

The doctor teaches patients that it is not activities or work itself that cause symptoms, but the aftereffects of the virus.

...

(Flottorp)

– It shows that cognitive behavioral therapy and various types of training approaches have a positive effect for people struggling with late effects of corona.

...

Last year, a study at Ahus was criticized for overly psychologizing the symptoms of long covid.

Recently, a professional network advocated for a more holistic approach to people with fatigue conditions such as long covid, ME and burnout.

 

[bobbler]

Enthusiastic article today about the study from the public broadcaster NRK with comments from researcher director at the Norwegian Institute for Public Health (FHI) Signe Flottorp.

Ny studie gir håp: Inger-Johanne ble frisk etter long covid

automatic translation: New study gives hope: Inger-Johanne recovered after long covid

quotes:

Here they have been concerned with what the patients are able to cope with, and not symptoms, says consultant Tom Farmen Nerli.

– We don't work on alleviating symptoms from hour to hour, but on functioning over time. Exploring activities and tasks in arenas that patients miss, or that they want to do more of.

To achieve this, it is important that patients are confident about their symptoms and what they represent. Then it becomes easier to let them go, explains Nerli.

– There is an understanding that activities are actually needed for this to happen. The body has a fantastic ability to sort things out when we make the arrangements for it.

Inger-Johanne Thorstein was afraid of doing anything that could make the disease worse again.

She was told to put those thoughts aside.

The doctor teaches patients that it is not activities or work itself that cause symptoms, but the aftereffects of the virus.

...

(Flottorp)

– It shows that cognitive behavioral therapy and various types of training approaches have a positive effect for people struggling with late effects of corona.

...

Last year, a study at Ahus was criticized for overly psychologizing the symptoms of long covid.

Recently, a professional network advocated for a more holistic approach to people with fatigue conditions such as long covid, ME and burnout.

Back to the old times

sounds worse than gaslighting it’s taunting snd disability bigotry by refusing to acknowledge people then I suspect a big dollop of refusing to be accountable or take responsibility for the declines in function and health they cause with all sorts of appalling weaponising if inaccurate suggestions for that

there aren’t words strong enough for these people but what they write isn’t clever

 

[InitialConditions]

https://twitter.com/user/status/1870410280221458439


She could at least tag Phil Parker as the creator of this brainwashing experiment.

 

[Trish]

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

 

[Kalliope]

https://twitter.com/user/status/1870410280221458439


She could at least tag Phil Parker as the creator of this brainwashing experiment.

Oh this is something completely different and brand new and groundbreaking! /S

LP takes three days and who has time for that? This cure only takes a few hours. In LP you shout "stop" at your symptoms, here you talk to the mirror instead insisting you're doing great. And most important of all, no more royalties to pay to Parker.

 

[Jonathan Edwards]

"For us, it is essential to foster a belief that the body has the potential to adapt, and that a positive adaption towards a normal health state requires an active pursuit of physical and mental tasks that are individualized, suitable, feasible, and enjoyable," he said. "We differ a lot from others with our way of working, but our experience over years has made us confident."

If you want an admission of an inability to understand how to apply science to medicine this is pretty good.

 

[Eleanor]

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

If the client gets better, the method is working; if the client gets worse, they weren't following the method properly. The method cannot fail, it can only be failed.

 

[bobbler]

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

It’s callous indifference ie they won’t look at or hear from those who get sicker that’s a common type and I suspect is going on. And goodness knows but I’d say it’s always all of the above and there’s no way they doing something that doesn’t make any money and/or enhance their own future prospects whatever they believe their justification to be - unlike for example someone scrabbling round trying to provide free books to children as a charity or taking loads of stray cats to help them there a kind of ‘intention’ that mixes up the meaning of the term ‘help’ with bigotry of assuming people are disabled because they mentally ‘choose the pit’ in the first place. And then sure as heck they don’t want to hear the disabled person talk back because the only kind of ‘help’ they want to deliver is what they impose not a generic offer should those people say ‘what we actually need is’.

Like people who think giving a poor person with a sick child a bad tempered lecture on ‘pulling themselves up by their bootstraps’ without stopping to realise whether the situation they assume is correct (‘when I was poor I could still x,y,z’ but not realising those things don’t exist anymore etc) , and call that help rather than an awful thing to do. I imagine this sells to the ‘third party’ of those who believe said lectures are ‘the way’ for those hard up and gets good feedback from them and neither are interested in the object ‘talking back’.

 

[bobbler]

Oh this is something completely different and brand new and groundbreaking! /S

LP takes three days and who has time for that? This cure only takes a few hours. In LP you shout "stop" at your symptoms, here you talk to the mirror instead insisting you're doing great. And most important of all, no more royalties to pay to Parker.

O wow that last line says it all then about how business-nosed this all really is.

 

[rvallee]

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

Their company has made millions from their lies. That's a very good motivator to someone who isn't burdened by ethics. Especially as they get much of their business straight from the government sending them patients.

But this is a departure from the usual "we don't mean a cure, we just mean this can be of help to some" while the newspaper headlines carry the lie that it's a cure. Not that it matters much, but other than Garner I don't remember any of the psychobehavioral ideologues publicly claiming they are offering a cure. They only ever hint at it, then privately say it explicitly with a wink and a nod when talking to reporters.

Even though yet again the study doesn't even come close to supporting this. Here again BMJ and the institutions involved in the trial deserve most of the blame. They weren't born yesterday, it's not credible that they don't know how it's completely distorted and misused, because they are fine with this disinformation.

Those institutions are completely failing at their paper obligations. It would be nice if those obligations weren't just words somewhere that people only care about when it doesn't matter to them or change the outcome.

 

[Sean]

And most important of all, no more royalties to pay to Parker.