A safe and effective micro‑choice based rehabilitation for patients with long COVID: results from a quasi‑experimental study 2023, Frisk et al

[Sly Saint]

Abstract
At least 65 million people suffer from long COVID. Treatment guidelines are unclear, especially pertaining to recommendations of increased activity. This longitudinal study evaluated safety, changes in functional level and sick leave following a concentrated rehabilitation program for patients with long COVID. Seventy-eight patients (19–67 years) participated in a 3-day micro-choice based rehabilitation program with 7-day and 3-month follow-up. Fatigue, functional levels, sick leave, dyspnea and exercise capacity were assessed. No adverse events were reported and 97.4% completed the rehabilitation. Fatigue measured with Chalder Fatigue Questionnaire decreased at 7-days [mean difference (MD = − 4.5, 95% CI − 5.5 to − 3.4) and 3-month (MD = − 5.5, 95% CI − 6.7 to − 4.3). Sick leave rates and dyspnea were reduced (p < 0.001) and exercise capacity and functional level increased (p < 0.001) at 3-month follow-up regardless of severity of fatigue at baseline. Micro-choice based concentrated rehabilitation for patients with long COVID was safe, highly acceptable and showed rapid improvements in fatigue and functional levels, sustaining over time. Even though this is a quasi-experimental study, the findings are of importance addressing the tremendous challenges of disability due to long COVID. Our results are also highly relevant for patients, as they provide the base for an optimistic outlook and evidence supported reason for hope.

https://www.nature.com/articles/s41598-023-35991-y

Discussion
A highly pessimistic picture has been painted for patients suffering from long COVID. The current paper present results that are in clear contrast to this: Following a 3-day, micro-choice based group intervention, the patients’
level of functioning increased significantly and there was a rapid, significant, and clinically important reduction in fatigue at 3-month follow-up, in addition to significantly reduced dyspnea and improved exercise capacity.
Mean pre-treatment symptom duration was 10.2 months. There were no indications of post-exertional malaise or other adverse events.

 

[RedFox]

This is just inane.

 

[Trish]

The rehabilitation program is described in the protocol paper:
Evaluation of Novel Concentrated Interdisciplinary Group Rehabilitation for Patients With Chronic Illnesses: Protocol for a Nonrandomized Clinical Intervention Study

Abstract
Background:An aging population with a growing burden of chronic complex illnesses will seriously challenge the public health care system. Consequently, novel and efficacious treatment approaches are highly warranted. Based on our experiences with concentrated treatment formats for other health challenges, we developed a highly concentrated interdisciplinary group rehabilitation approach for chronic illnesses.

Objective:We aim to explore the acceptability of the intervention and describe potential changes in functional impairment at follow-up.

Methods:The cornerstones of the intervention are as follows: (1) prepare the patient for change prior to treatment, (2) focus on health promoting microchoices instead of symptoms, and (3) expect the patient to integrate the changes in everyday living with limited hands-on follow-up. The intervention will be delivered to patients with highly diverse primary symptoms, namely patients with low back pain, post–COVID-19 symptoms, anxiety and depression, and type 2 diabetes.

Results:Recruitment started between August 2020 and January 2021 (according to the illness category). For initial 3-month results, recruitment is expected to be completed by the end of 2021.

Conclusions:If successful, this study may have a substantial impact on the treatment of low back pain, post–COVID-19 symptoms, anxiety and depression, and type 2 diabetes, which together constitute a major socioeconomic cost. Further, the study may widen the evidence base for the use of the concentrated treatment format in a diverse group of medical conditions.

 

[Trish]

So the aim seems to be to get people to focus on changing activity patterns not on symptoms, and to see any improvement in symptoms as a bonus, not as the main aim. Given that, I assume the questionnaire results, particularly on CFQ, are simply about getting patients to recalibrate how they interpret their fatigue.

One of the main features of this novel cross-disciplinary concentrated intervention (lasting less than a week) is a shift in focus from targeting symptoms to targeting and monitoring everyday microchoices that facilitate increased levels of functioning. The intention of these microchoices is to break inflexible patterns of symptom regulation by “doing something different” whenever tempted to be guided by the symptoms. This approach enables the patient to systematically increase flexibility and their levels of functioning when symptoms and health challenges are present. In addition, a focus on deliberate behavior instead of symptoms implies that change is within reach and possible to control

Note they were only included if they were assessed as ready and willing to change.

Microchoices
Microchoices will be used as a term that refers to the moments when you discover specifically how and where in your everyday life the symptoms are making choices on behalf of you, and where you have an option to choose differently. Participants will be encouraged to do things they have avoided in fear of symptom worsening.

It will be emphasized that change is measured in behavior (what you do) and not in the reduction of symptoms. Symptom reduction, on the other hand, will be described as a positive and valuable side effect of behavioral change. This shift in focus from symptoms to deliberate behavior implies that change is within reach. Furthermore, participants will be challenged to do a value-based microchoice each day, for example, call a friend or relative whom they had neglected due to the health problems. During patient education, this concept is introduced and explained (ie, having health problems and symptoms may make people more self-centered and lose perspective, making them lose track of who they were, and value-based actions may help them get back on track and widen their focus).

And of course there's no control group.

 

[Trish]

Physical Activity
These sessions will vary across illnesses; however, common for all participants will be instructions to attempt making the physical activity relevant for their own challenges and fit into their projects of “breaking patterns of symptom regulation.” For some, this might mean to refrain from the temptation to overdo, and for others, it might imply to be more active or active in a different way. For patients with anxiety/depression, the task during the physical activity will be to “surprise themselves” by doing a little more when they feel they have reached their limit. Patients with low back pain will follow the validated ready-to-use program “GLA Back,” integrating patient education and exercise therapy [32,33]. For post–COVID-19 patients, the physical training will be a mix of high- and low-intensity training, focusing on increased exercise capacity and the restoration of trust in one’s own body. In the type 2 diabetes group, the main aim will be to experience how a diverse range of activities can be useful in order to maximize the effect of the body’s available insulin.

My bolding.

PEM doesn't seem to have been assessed, but since they did quite a lot of physical testing initially - CPET, stair climbing and sit to stand test I think they must have been relatively mildly affected or they wouldn't have been able to do these.

 

[Hutan]

This is just inane.

I thought the exactly the same.

this is a quasiexperimental study

Yes, it really is. Not sure if the researchers are stupid (with respect to this work) or they just think the readers of their paper are. Clearly the researchers think all their participants are - that it has not occurred to people to do a bit more, and push through the pain/fatigue.

• Self-selection of participants, as Trish said, people who are ready and able to do more.
• Natural improvement over time, and no controls.
• "sustaining over time" 3 months is too short a time for assessment in Long Covid with PEM. The effects of increases of activity accumulate over time.
• Chalder Fatigue Questionnaire is notorious for over-stating improvement from baseline, and not acknowledging worsening due to the ceiling effect.

 

[Andy]

pdf only(?)

No, open access at the link you give, https://www.nature.com/articles/s41598-023-35991-y

 

[Hutan]

Phase 2: The concentrated micro-choice based rehabilitation
The core element in this out-patient rehabilitation, delivered in groups of 6–10 patients during three consecutive days (8.30–16.00), was a shift in focus, from targeting and monitoring symptoms, to focus on micro-choices in order to facilitate increased levels of physical activity and functioning (Fig. 1).

The training included:

• Patient training
• Individually tailored exercise on breaking inflexible patterns
• Physical activity/exercise training
• Brief mindfulness sessions

3 days from 8.30 am to 16.00 pm, including exercise. That must surely have had a major impact on what sort of participants signed up. It's sounding a lot like the Lightning Process, perhaps without the high price tag. No coincidence that this is Norwegian research I think.

The first 3 weeks after the concentrated rehabilitation, patients answered two questions digitally once a day (0–100) regarding strategies for handling symptoms: (1) To what extent did you allow the symptoms to decide today,

"To what extent did you allow the symptoms to decide today?"
That could be incredibly harmful to people who are not able to improve.

I think the question has to be asked - is the psychological and potentially physical harm done to people who could not improve outweighed by the improvements in functionality over time of people who probably would have improved on their own anyway?

 

[Trish]

I thought of LP too. I didn't see any mention of PEM.

 

[DokaGirl]

This is a mind over matter approach, like so many others: don't let your symptoms guide your behaviour.

Except, one's legitimate symptoms may be smarter than one's belief that mind and behaviour can overcome a chronic debilitating illness.

 

[Hutan]

78 people started the training; 2 didn't complete it, supposedly due to some other illness.
5 more people dropped out, 4 because they didn't want to continue and 1 due to some new disease.

That left 71.

For some of the measurements there were some missing data due to technical problems, pain or other symptoms that hampered completion of the physical tests or questionnaires in the mobile application.

So, there isn't data for all 71 participants for all outcomes.

Table 2 shows the numbers of participants at baseline and at three months. There are huge drops in the numbers of participants at 3 months, and no consistency in how many people are included at baseline. It really is very shoddy, especially given there are no controls. How is it reasonable to include the data from people at baseline who weren't even able to complete the training due to illness? - it artificially depresses the baseline.
e.g. numbers of participants:
CFQ - at baseline 77; at 7 days 74; at 3 months 71
Sick leave - at baseline on sick leave 39 out of 62 (63%); at 3 months 23 out of 55 (43%)
VO2 peak - at baseline 77; at 3 months 67
Dyspnea 12 - at baseline 68; at 3 months 71

Re the sick leave, sick leave was measured for employed participants only. They say that 63% of the 62 employed participants at baseline were on sick leave (therefore 23 people were employed and weren't on sick leave at baseline), but only 43% of participants were on sick leave at 3 months. Given that only 55 participants were assessed for sick leave at 3 months, that suggests that 32 people were employed and not on sick leave at 3 months. That's 9 people out of 78 who went from on sick leave to not on sick leave between having the course and the 3 month followup.

The discussion says

A rapid return to work, as shown in our study, can reduce societal costs substantially and increase the quality of life for the individuals.

I don't think a rapid return to work fairly describes what we have seen here, at least not due to the 3-day course.

If we look at Figure 2 which gives the waterfall diagram for this 'quasiexperiment', 16 people out of the 120 assessed for eligibility are reported as improving between the assessment for eligibility and the baseline measures to the point where they became ineligible. Between the baseline and the course, which surely was not very long, another 3 out of 83 improved to the point where they became ineligible. Clearly, people were improving all the time, including before they attended the 3 day course.

Also, sick leave was self-reported by people who had had 3 days of being told that they should not let their symptoms dictate what they did - they would have got that message that people who took sick leave were not taking charge of their illness. That probably affected reporting rates.

Re the VO2 peak, the average VO2 peak for sedentary men is reported from google as 35 to 40ml/kg and just 27 to 30 for average sedentary females. Even with all those drop outs (77 to 67), there wasn't much of a change in VO2 peak/kg: from 30.8 to 31.5. It's worth noting that the VO2 peaks actually were pretty good, even at baseline, especially given 82% of the participants were female. Table 3 gives the data expressed as a percentage of expected value - from 92% of predicted to 95% of predicted.

Re fatigue, 99% of the participants reported fatigue at baseline. At 3 months, 77% still reported fatigue, 18% of them reporting severe fatigue, even with the problems with the CFQ.

(I'm tired, so I'm not going to check I have all the numbers right, but will just post this.)

 

[NelliePledge]

Sick leave is a fuzzy area if you’re on a phased return you’re not working your full time hours but are partially off sick, after 3 months could still be trying to return to full time.

Or still being in employment unless it means return to previous role/hours could mean people have formally reduced working hours by a change in contract, so aren’t technically off sick but are affected in terms of finances etc.

 

[Lou B Lou]

Method

'.... Diseases where physical activity was not recommended was also reason for exclusion.'

 

[rvallee]

If successful, this study may have a substantial impact on the treatment of low back pain, post–COVID-19 symptoms, anxiety and depression, and type 2 diabetes, which together constitute a major socioeconomic cost. Further, the study may widen the evidence base for the use of the concentrated treatment format in a diverse group of medical conditions.

This reads exactly like all those "imagine a world without pollution" scams about a device that makes cars run on water. While pretending it's the first of its kind, even though it's identical to every other scam model.

You can imagine any world you want. We need professionals who work with the world we have. This is foolish nonsense. The level of bias in medical research is insane, they need extremely strong evidence against their beliefs before they will even consider the mere possibility that they shouldn't just cherry-pick positive results they want every single time.

 

[Kalliope]

We are slowly getting some news coverage of Long Covid here in Norway. Sick leave due to "tiredness" is up with 26% and there are between 30 000 and 60 000 children with long term school absence. The clinic that offers the treatment from the study, Helse i Hardanger, is presented in the media as having developed a cure.

The clinic has been discussed at the forum before. it's same old, same old, with connections to some familiar names.

Here's from a forum post from 2021:

This is at a rehabilitation center in Norway called Helse i Hardanger. It's based on a four-day-intervention program against anxiety. They have expanded their treatment approach to several other diagnoses, and now obviously also to Long Covid. A psychiatrist who is working there says she recovered from ME/CFS by being treated by psychiatrist Bjarte Stubhaug with mindfulness. She is one of the leaders of Recovery Norge. The four-day-intervention program against anxiety was developed by Gerd Kvale, who coauthored an awful study by same psychiatrist Bjarte Stubhaug on a mindfulness-based CBT intervention program as treatment for CFS/ME (discussed in this thread).

 

[Midnattsol]

Forskning.no wrote about this study today, but unfortunately only mentions the lack of a control group/short timeframe as problems (rest is all very positive). They are going to do another study with one year follow up (not clear to me if it's a new cohort or a longer follow up of the patients in this study).

I think this sentence: "There are various treatment plans for people with long covid, while research is being done on what works best." really should say we don't know what works at all, not that we don't know "what works best".

Kan long covid behandles på tre dager i Hardanger?
Can long covid be treated in three days in Hardanger?

 

[Kalliope]

Forskning.no wrote about this study today, but unfortunately only mentions the lack of a control group/short timeframe as problems (rest is all very positive). They are going to do another study with one year follow up (not clear to me if it's a new cohort or a longer follow up of the patients in this study).

I think this sentence: "There are various treatment plans for people with long covid, while research is being done on what works best." really should say we don't know what works at all, not that we don't know "what works best".

Kan long covid behandles på tre dager i Hardanger?
Can long covid be treated in three days in Hardanger?

Yes, a very disappointing and naive article. A spokesperson from the clinic who offers this "treatment" says in the article that the patients are tested in the beginning in order to see if their health is good enough. "This in order to make them secure that there is nothing physically wrong from stopping them from being active and push themselves"

Gerd Kvale says that for some people good resting can involve increasing activity.

 

[rvallee]

that for some people good resting can involve increasing activity.

Spending money is a good way to save money. Turning on a heater is a good way to cool a room. Freedom is slavery.

These people are delusional. They say delusional things. They can't possibly not understand that this is delusional. And yet here we are.

in the article that the patients are tested in the beginning in order to see if their health is good enough. "This in order to make them secure that there is nothing physically wrong from stopping them from being active and push themselves"

They have no tests for this. They don't know what's wrong so they can't test for it, there is no such thing as a generic test for "you are healthy". But of course the problem is that they have always decided that there is nothing wrong, because they don't know what's wrong. This is all a bunch of inane, immoral BS.

 

[Kalliope]

Forskning.no wrote about this study today, but unfortunately only mentions the lack of a control group/short timeframe as problems (rest is all very positive). They are going to do another study with one year follow up (not clear to me if it's a new cohort or a longer follow up of the patients in this study).

I think this sentence: "There are various treatment plans for people with long covid, while research is being done on what works best." really should say we don't know what works at all, not that we don't know "what works best".

Kan long covid behandles på tre dager i Hardanger?
Can long covid be treated in three days in Hardanger?

The article has now been professionally translated into English:

Science Norway Can long Covid be treated in three days?

quote:

During the three days, patients learn about COVID-19 and how it affects the body.

“We combine teaching with a number of different types of physical training and introduce various attention exercises – all under professional guidance,” says Gerd Kvale.

“Instead of lying down to relax when you’re tired, it can be useful to look for alternative ways to deal with the symptoms,” she says.

 

[Hutan]

Instead of lying down to relax when you’re tired

My response to that cannot be written here. But it really shows that these people have no idea what they are talking about. Relax? Tired?

I know we've said it all before, but it's the sheer arrogance these people have, to think that we have not tried to ignore the symptoms and keep going. Eventually we learn - there are consequences. But even then, many of us keep trying to ignore the symptoms in order to do something we really want to do, and the consequences keep coming.