The PACE authors had the advantage of all being excellent second hand car salespersons.
I am not sure that this team is going to get very far trying to re-market a diesel Honda Prelude from 2004 to a post-Covid world.
Sadly, I suspect that they will do just fine. With financial support from the Australian NHMRC and ZonMW, that's useful branding. And they are selling something that a lot of people want - people who don't have the time or inclination to look under the hood*.
* the covering of the car engine - I think there might be regional terms. Bonnet?
What clearly matters most is the null hypothesis testing i.e. this:
"Patients who received CBT were significantly less severely fatigued across follow-up assessments than patients receiving CAU (-8.8, (95% confidence interval (CI)) -11.9 to -5.8); P<0.001), representing a medium Cohen’s d effect size (0.69). The between-group difference in fatigue severity was present at T1 -9.3 (95% CI -13.3 to -5.3) and T2 -8.4 (95% CI -13.1 to -3.7)."
We need to understand how they came to these figures, particularly the confidence intervals on these group differences. I suspect they are wrong!
I’d be eagle-eying the drop-outs on that one. To see whether what they achieved was using CBT as krypton factor to wheedle out the most severely fatigued.
which achieves of course the same as the stats they’ve stated BUT the REAL effect if this IS what they’ve done would be the opposite to the claim: using CBT to make the most fatigued drop out (potentially due to illness worsening)
Sadly, I suspect that they will do just fine. With financial support from the Australian NHMRC and ZonMW, that's useful branding. And they are selling something that a lot of people want - people who don't have the time or inclination to look under the hood*.
* the covering of the car engine - I think there might be regional terms. Bonnet?
Yeah there's not a lot of work involved in selling cars that have already been pre-sold.
It's about the same level of difficulty as selling clean water in the desert. It's probably harder not to sell it, as you'd pretty much have to fight off everyone grabbing it while ignoring all the money they're throwing at the wind.
We can't have these people decide our fate. They will sell us off at every opportunity, can't even pretend to give a damn about what happens after they sell us off to the lowest bidder. And really, it is the lowest bidder, not the highest. Trading lives for money in an exchange barely morally better than human traffic.
That is exactly what she is doing. Framing/priming to poison the whole thing from the start. She may or may not realise what she is doing, but the people who fed her with this line certainly do.
Ellen Goudsmit has been saying for 30 years that patients need to engage via the peer-review journals to be successful. And she was and still is correct. Getting stuff into that arena is where all this starts to work for us.
Shades of Wessely saying that he wishes we could all find a bit more of that dour Gaelic forbearance of life's inconveniences and troubles.
Yeah, that is the problem. We are all just whining pathetic little snowflakes, who retreat permanently to our beds at the slightest sign of difficulty in life. Not big brave tough manly men like Sir Simon Says, heroically soldiering on against the organised campaign of vicious harassment and threats from desperately sick bed-bound people, so cruelly limiting his advancement and due recognition and rewards from life.
History will show that Wessely is no victim, let alone a hero.
I don't know whether this has been posted elsewhere on this forum, but here's the questionnaire used for the primary outcome - Checklist Individual Strength.
Items on the fatigue subscale (True >>> Untrue) are as follows:
I feel tired.
Physically I feel exhausted.
I feel fit.
I feel weak.
I feel rested.
Physically I feel I am in a bad condition.
I get tired very quickly.
Physically I feel in a good shape.
Scale range is from 8 to 52 (each item scores from 1 to 7, where higher score = more fatigued) - so a score of 32 is midway. In the validation study, the average score in a white-collar population sample was about 20 on the fatigue subscale. Those with a "mental reason for fatigue" (whatever that might be) scored an average of 39.
If an intervention is targeting "unhelpful thoughts" around fatigue, then I would have thought it's fairly easy to move a point or two on each item in a more favourable direction just simply by reframing.
I don't know whether this has been posted elsewhere on this forum, but here's the questionnaire used for the primary outcome - Checklist Individual Strength.
Items on the fatigue subscale (True >>> Untrue) are as follows:
I feel tired.
Physically I feel exhausted.
I feel fit.
I feel weak.
I feel rested.
Physically I feel I am in a bad condition.
I get tired very quickly.
Physically I feel in a good shape.
Scale range is from 8 to 52 (each item scores from 1 to 7, where higher score = more fatigued) - so a score of 32 is midway. In the validation study, the average score in a white-collar population sample was about 20 on the fatigue subscale. Those with a "mental reason for fatigue" (whatever that might be) scored an average of 39.
If an intervention is targeting "unhelpful thoughts" around fatigue, then I would have thought it's fairly easy to move a point or two on each item in a more favourable direction just simply by reframing.
As the original CBT manual for CFS, Fit after COVID is based on a cognitive behavioural model of fatigue [26]. According to this model, a disease or stressor (here: COVID-19) initially triggers fatigue while cognitive behavioural variables perpetuate fatigue. The seven perpetuating factors addressed in Fit after COVID are (1) disrupted sleep-wake pattern, (2) dysfunctional beliefs about fatigue, (3) low or unevenly distributed level of activity, (4) perceived low social support, (5) problems with processing the acute phase of COVID-19, (6) fears and worries regarding COVID-19, and (7) poor coping with pain.
The module on graded activity contains a version for relatively active participants and a version for low active participants, based on the activity pattern assessed with an actigraph [53]. Participants with low activity pattern immediately start with a gradual increase in their daily physical activity, while participants with a relative active activity pattern learn first to evenly distribute their activities during the day and then subsequently gradually increase their daily activity. As the second way to personalize the treatment, participants only follow the optional modules aimed at fatigue-perpetuating factors that apply to them. The modules are selected based on their scores on baseline questionnaires and on information collected by the therapist during the intake session. Questionnaires indicating whether optional modules are relevant are the Van Sonderen Social Support Inventory Discrepancy scale (SSL-D) and Interactions scale (SSL-I) [54, 55] for the module on perceived low social support, the Impact of Event Scale (IES) [56, 57] for the module on problems with processing the acute phase of COVID-19 and the subscale pain of the SF-36 [40] for the module on poor coping with pain. For the selection of the module on fears and worries regarding COVID-19, the Cancer Worry Scale (CWS) [58] was adapted to the COVID-19 Worry Scale (COWS).
(Just as an aside "Covid-19 worry scale" - COWS? Shades of "MUPpets")
So, the protocol said that the result of the actimetry would put participants into low and high(boom and bust) activity groups, with low activity participants being helped to increase their activity, and "relatively active" participants being helped to reduce their activity in order to learn to evenly distribute their activities and then build back up. The results of the paper tell us nothing about what they found.
The protocol notes that dysfunctional beliefs about fatigue are part of the model the CBT addresses. But, they don't seem to specify a tool for determining who has dysfunctional beliefs about fatigue, and how they will know if dysfunctional beliefs about fatigue have been fixed. With no such tool, they have no way of checking if the people whose dysfunctional fatigue beliefs changed the most had the most reduction in fatigue. Presumably just reporting that you have debilitating unexplained fatigue indicates a dysfunctional belief about fatigue?
It would be great to see the actual content of the training about this.
I've said it already, but how can these people not see that manipulating people's attitudes to fatigue like this utterly biases any follow-up survey to find changes in fatigue? It's surely not difficult?
Any chance of an FOI request getting all the raw data from this? It looks like a trial that many health services will use to justify directive CBT for LC, so is worth challenging.
Oh my! So they actually designed it for "chronic fatigue syndrome", and then make no mention of the fact that it then couldn't discriminate between "CFS" and "mental reasons for fatigue" in the validation study.
Ha!
Unless of course they include CFS in "mental reasons for fatigue" of course. Silly me.
Out health minister has been stalling endlessly on all things Long Covid (not even counting number of patients), and then recently started to say that he could say more in May, with a focus on expertise centers and European collaboration. Today the government advisor selling our herd immunity by infections policy started to say that it was important that Long Covid patients were counted, and it was a "serious problem" -if you know what this man has been up to these last three years this sudden outright statement is remarkable to say the least.
I hope I'm very wrong on this, but I fear the expertise centers will be like -or even a branch of- Knoops Dutch expertise center for chronic fatigue (NKCV), and the "European collaboration" with the psychosomatic movement, the project @Grigor posted on the ZonMw ME/CFS funds thread; if it has broad political backing then it might roll on for a while unless properly scrutinised, despite its rickety setup. Especially as the dutch are very focused on their own science and less so on abroad.
Any chance of an FOI request getting all the raw data from this? It looks like a trial that many health services will use to justify directive CBT for LC, so is worth challenging.
There's a link to the data set at the end of the paper but it's currently dead (I assume it will go live when the paper is published). But I think it will be aggregate data.
Any chance of an FOI request getting all the raw data from this? It looks like a trial that many health services will use to justify directive CBT for LC, so is worth challenging.
The protocol notes that dysfunctional beliefs about fatigue are part of the model the CBT addresses. But, they don't seem to specify a tool for determining who has dysfunctional beliefs about fatigue, and how they will know if dysfunctional beliefs about fatigue have been fixed. With no such tool, they have no way of checking if the people whose dysfunctional fatigue beliefs changed the most had the most reduction in fatigue. Presumably just reporting that you have debilitating unexplained fatigue indicates a dysfunctional belief about fatigue?
They are defining dysfunctional as an arbitrary cut-off point on a scale that doesn't define or measure dysfunction, just levels of self-reported fatigue.
That isn't how you measure, define, or explain a profound global change in health status.
They really are a protected species. I am not feeling any sense of general interest or urgency in medicine and politics to deal with this appalling problem promptly and effectively.
They have had enough time, even with the pandemic, to take on board the clear findings of various authoritative reports on the matter, from IOM to NICE, and act upon them. It is time to make the hard decisions. Any further delays are just cruelty.
It's bothering me that it looks like this study has changed it's research aim. (Knoop was very specific in emphasising it was about prevention,
…”A novel approach will be applied in which an evidence-based intervention for chronic fatigue will be delivered timely in order to test its efficacy to prevent, rather than treat, chronic fatigue. This has never been studies before and if this proves to be effective, it could be beneficial for patients with fatigue after other infections. ………The research group is experienced and well equipped to implement the timely iCBT, if shown to be effective, for COVID-19 patients in the near future. …
this text was changed a bit for the final grant application, but it still names it as the goals, including the title.)
So I was collecting everywhere where it was clear that this was originally supposed to be about prevention (FOI files, ZonMw page, project recruitment page). There's much to find in the FOI docs (link here). I really encourage people so inclined to look through them. There's dutch content, but the project plan and the grant request with elaborated plan are in english and contain a lot of relevant info.
Page 17 starts the project idea forms sent on the 13th of May 2020
The 4th of June, Knoop gets a positive recommendation from ZonMw for his project idea with the title: : "ReCOVer: A randomized controlled trial, testing the efficacy of cognitive behavioural therapy for preventing post-infectious fatigue among patients diagnosed with COVID-19 disease", and gets invited to create a grant request out of the project idea. His project idea at this point is already converted to a grant request by ZonMw, ready to be edited. This grant request has to be sent by the 15th of June 2020. (22nd of June Knoop gets the assessments of this, he has until the 24th of June to respond, then will follow an assessment by the committee and he’ll hear the result mid July.) He does has to address certain points in his elaborated plan, which I'll detail below.
He sends this grant request/elaborated plan on the 16th of June (a day late?), which starts on page 35.
Knoop was requested to substantiate and elaborate on certain things in his plan:
He got a list of point that should be addressed (page 33):
[*]The commission requests that you further substantiate why you expect that the problem of chronic post infectious fatigue is going to appear in COVID-19 patients
[*]The commission requests you to substantiate why you expect cognitive behavioural therapy to be a good treatment, as it is to be expected that a lot of the damage in covid patients will be of a fysiological nature.
[*]You are requested to indicate how lung damage, which is seen as a confounder, is dealt with.
[*]You are requested to expound on the feasibility of the number of patients to be included. [There was a chilling comment by one of the reviewer regarding feasibility that said: “Only with a new peak in infections can this study take place”]
[*]You are requested to consider to also research on the long term the effects that are measured on the short term .
[*]The committee poses the consideration if it’s ethical to not give the treatment to part of the patients by means of the RCT setup of the study.
He has woven these through the forms, but also addresses them separately in an appendix (page 51). I want to focus on the answer of the second item:
The Committee asks you to substantiate why you expect cognitive behavioral therapy to be a good treatment, as it is expected that much damage in covid patients will be of a physiological nature.
Knoop answers:
Post-infectious fatigue is a common complaint after an infection. Relationships have been found with behavioral characteristics rather than with physiological parameters. This is a more general characteristic of chronic fatigue: in the acute phase of a condition there is more often a relationship between tiredness and somatic variables, once the fatigue becomes chronic, the relationship with somatic variables is limited or even absent. The behavioral factors related to tiredness can be influenced through behavioral therapy. Cognitive behavioral therapy that focuses on this shows to lead to a decrease in tiredness in post-infectious tiredness and tiredness in chronic diseases (including MS, muscle diseases, rheumatism, type 1 diabetes). It is expected that this will also be the case in post-COVID-19 patients, although there will also be physiological damage (e.g. lung damage). This is no different from chronic diseases where behavioral therapy also has a positive effect on severe fatigue.
Also not unimportant, both in the grant request and in Knoops response (where it's partially blacked out, but they forgot an earlier one) it says that if the treatment is proven to be effective, Stichting Nederlands Kenniscentrum Chronische Vermoeidheid (NKCV) agreed to consider a proposal for additional funding (p43) and fund a 12 month follow-up (T3) (p52). This organisation is headed by Hans Knoop. Given that the project plan elaborately explains how the research team is already very experienced in providing CBT to chronic fatigue, and that "The research group is experienced and well equipped to implement the timely iCBT, if shown to be effective, for COVID-19 patients in the near future."[bolding theirs], this seems problematic. NKCV would be funding research into the efficacy of the treatment they plan to offer on a large scale. Also note they colaborate with COFFI (p46)
(Btw., I am repulsed by much of the text - speaking of how COVID forms a "unique opportunity" while expecting great numbers of Long COVID patients, and how they clearly see this as an opportunity to further speed up their process of expansion and to lump together all post-acute infectious illness as one CBT-consuming blob. What makes it extra distasteful is that they heavily use Q-fever as a template. Q-fever was another fiasco caused by government neglect and focus on industry interests, much like Long Covid, see an english summary here. The Ombudsman advised apologies and a financial compensation for the victims.)
Edited to change a couple of "fatigue"s into "tiredness" in Knoop's reply, as that's a better representation of what he says, using the word "moeheid" instead of "vermoeidheid".
Damn, I can't go on with the doc, but the reviewers for ZonMw noticed problematic stuff (like when you're recruiting beyond 6 months then it's no longer about preventing chronic fatigue, there's no patient participation, CIS target not very concrete etc.) Answers from the research team/Knoop look at quick skim interesting.
I'll leave you with this whopper:
"Evidence-based behavioral interventions (read CBT) for fatigue are only used to a limited extent in the Netherlands and there are no or limited referral options in the regions where we recruit."
Really.
I guess if your aim is to treat every illness with CBT, then the fact that an enormous group of people with undiagnosed & unrecognised illnesses and post-acute infectious diseases (often conveniently stored in the MUS bin, 80% of whom are women) already gets this shit offered widely as "treatment" indeed seems "limited".
Also:
"Our research group has now developed 8 internet interventions, tested 6 of them in RCTs, and published the results of 5 of them in high impact journals."
"Our research group is now conducting a nationwide implementation study for iCBT for tiredness in MS with implementation in more than 10 rehabilitation centers in the Netherlands. We can use this experience and infrastructure in the implementation of iCBT for COVID-19 patients."
"The evidence based face-to-face CBT and iCBT for the chronic fatigue syndrome/ME is reimbursed via the GGZ" [=mental health care]
Any chance of an FOI request getting all the raw data from this? It looks like a trial that many health services will use to justify directive CBT for LC, so is worth challenging.
It's hard to straddle that line without hitting the limits of political discourse but... this is the same problem with terrorism. It's not possible to attack an ideology head on. People can be defeated. Ideas endure beyond people. When an idea has captured a culture, people will line up to praise it so they can get the spoils of getting out on top if there's a realignment of eminent poo-bahs.
We are being oppressed by an idea. The people involved are interchangeable and barely matter as long as the ideology continues to dominate. And from the looks of it, medicine is simply incapable or unwilling to accept any responsibility for building and unleashing a dystopian nightmare, and would rather choose to keep expanding it, to make sure it keeps doing more harm, than face any accountability that could bring down the ideology with it.
Over time it actually made me think differently of the BPS overlords, the main people involved. They are completely interchangeable, and truly if it hadn't been them, it would have been other people doing exactly the same because their incentives are dictated by the ideology and how it operates within the profession, far more than their individual motivations.
Long Covid has made it very clear that the underlying incompetence and failure of reasoning is evenly distributed in the profession. At best 1% can see through it, the rest are just as unable to challenge the ideology than any of their predecessors were capable of seeing through how the Humours were complete BS.
It's kind of the opposite of "just following orders", which in most cases isn't so much about the threat of consequences, rather it is "do you want benefits to be showered on you or not? then be a team player and play along". There is no need to order anyone here, no need for a stick, there are carrot stacks and they're up for grabs. All it takes is complete shamelessness and that's way too easy to find.
The perpetuating factors of fatigue according to BPS people.
It looks like thinly veiled patient blaming. Or at least sets the stage for it.
And I doubt that there's any real evidence behind it. It's probably all the usual deliberate confusion of correlation with causation that we've seen so many times in their papers.
And one can be sure that someone who acts this way towards patients has no respect whatsoever for them, and maybe even despises them secretly.
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