Health-related quality of life in adolescents with CFS/ME, a cross-sectional population based Norwegian study-Simila,Halsteinli,Helland et al Feb 2020

[Sly Saint]

Abstract
Purpose The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors initial to diagnosis, at time of diagnosis and at follow-up that were associated with HRQoL.

Methods In this cross-sectional population-based study, HRQoL was measured by PedsQL Generic Core scale (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimentional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from patient journals and patient interviews.

Results Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, CI (-27;-6)). There were positive associations between overall HRQoL and follow-up by school teacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.

Conclusion HRQoL in adolescents diagnosed with CFS/ME was low compared to healthy adolescents. The associations between HRQoL, healthcare provided, teacher follow-up, school attendance and participation in leisure activity may provide information of value when developing refined strategies for follow-up of adolescents with CFS/ME. Possible causal relationships must however be explored in future longitudinal studies.

https://www.researchsquare.com/article/2cbbe49c-bacd-499d-9b58-711c37b05aea/v1

 

[ScottTriGuy]

"There were negative associations between overall HRQoL and...having been to rehabilitation stay..."

Quelle surprise @andypants ?

 

[inox]

Good to have documentation on the negative impact of rehabilitation stays for children. Hopefully this could lead to some changes...? Not that I’m to optimistic.

For children in Norway, there is only one rehabilitation center available. And they are unfortunally heavily influenced by Cbt/Get, Wyller etc.

So many sad stories

 

[Kalliope]

One of the co authors is Ingrid Helland, leader of the national competence service for CFS/ME and known for her biopsychosocial approach to ME.
So interesting to see this passage in the publication (my bold):

Rehabilitation programmes with exercise, mobilization and body awareness typically delivered from physical therapists, are earlier described as effective in redusing medium and long term fatigue severity in CFS/ME patients [34].

These findings seemingly conflicts with our findings, i.e. that physical therapy or rehabilitation stay are associated with lower HRQoL.

We know that CFS/ME patients often experience PEM and relapses after physical as well as cognitive activities.

The lack of knowledge and disagreement about strategies to improve HRQoL in these patients might contribute to disruption in important therapeutic alliances with patients and parents, and to distrust in health care personell [33, 35, 36].

Our finding, that having been to a rehabilitation stay have negative association with HRQoL, may indicate a greater need of an individualized follow-up plan.

A long term follow-up plan with regular mapping of symptoms as earlier mentioned, could be helpful for health care personnel when planning individualized rehabilitation stays.

 

[rvallee]

It's not obvious how those relate to normal population, I could not find how they compare. This is the best I could find:

Now I'm terrible at maths so I need a responsible adult for this, but an average score of 50 means 4 standard deviations, except it's not a normal distribution so I don't know but this looks like bottom decile? Sounds about right as expected and is in line with every other such evaluation.

So this yet again confirms that there have been zero improvements to overall quality of life among the ME patient population. This is after roughly 2 decades of a psychosocial model promising a complete cure, which obviously should have made a dramatic impact. Except as it states in the abstract, patients who go to the standard psychosocial treatments actually fare worse. As expected and also in line with what we already knew and in complete contradiction to the claims.

 

[rvallee]

One of the co authors is Ingrid Helland, leader of the national competence service for CFS/ME and known for her biopsychosocial approach to ME.
So interesting to see this passage in the publication (my bold):

Rehabilitation programmes with exercise, mobilization and body awareness typically delivered from physical therapists, are earlier described as effective in redusing medium and long term fatigue severity in CFS/ME patients [34].

These findings seemingly conflicts with our findings, i.e. that physical therapy or rehabilitation stay are associated with lower HRQoL.

We know that CFS/ME patients often experience PEM and relapses after physical as well as cognitive activities.

The lack of knowledge and disagreement about strategies to improve HRQoL in these patients might contribute to disruption in important therapeutic alliances with patients and parents, and to distrust in health care personell [33, 35, 36].

Our finding, that having been to a rehabilitation stay have negative association with HRQoL, may indicate a greater need of an individualized follow-up plan.

A long term follow-up plan with regular mapping of symptoms as earlier mentioned, could be helpful for health care personnel when planning individualized rehabilitation stays.

Ooof. When ideology meets reality, the results are not pretty. Results clearly show the current model is a failure and the conclusion here is to... do more of the current model, earlier and with exactly the wrong idea of an individualized approach, which is exactly the problem.

Now those findings have been the only findings so far. There are no contradictory findings. There are contrarian claims from cherry-picked and methodologically flawed research, not findings. Those claims were always either aspirational or outright fraudulent, always detached from the underlying data, and in contradiction to the actual findings, to patient reports and to literally everything we know of this disease.

Blaming "lack of knowledge" and disagreement is just plain vile. This illness model was bullied through and was always contemptuous of all patient input, so obviously there is no trust. There long seems to have been this belief that bullying it through was worth it because it would somehow work so well in real-life practice, despite having never produced useful results in research.

So to blame the lack of trust on the poor results is plain absurd. There will never be trust and there cannot be trust in a therapeutic model that is deceitful, dishonest and indifferent to patient outcomes. The discussion of the results makes that very clear: that what happens to ME patients does not matter to the those ideologues, they will always defend their beliefs against reality.

This part is delusional:

Our finding, that having been to a rehabilitation stay have negative association with HRQoL, may indicate a greater need of an individualized follow-up plan.

Literally rejecting reality and substituting their own. It does not work, is in fact harmful, so the solution would be to do more of what is harmful.

So despite clear findings that this entire paradigm is in fact harmful, the conclusion remains that it should be beneficial and therefore there should be more of it? And these fools think there is a way to built trust when they completely reject the reality of terrible outcomes and prefer their own imaginary promises? These people are out of their damn minds and in complete dereliction of duty.

The language used shows a very clear, almost unlimited, allegiance to this treatment model. It wants this model to be true, in fact seems desperate for it to be shown true. This is exactly what is wrong with the psychosocial model: it is an ideological belief system in which the model itself is the end in itself. It produces nothing but harmful results yet must persist because belief in the model is the only thing that matters, at the literal expense of human lives and the creation and worsening of suffering.

 

[rvallee]

This is a doozy:

According to an earlier finding of no statistical evidence between depressive symptoms and low HRQoL in adolescents with CFS/ME [16], and that there is a lack of depression found in diagnostic evaluation of the patient group, it is tempting to assume that depressive symptoms may develope as result of living with CFS/ME

ME patients and advocates have only been saying that literally for decades but congratulations on being tempted by the most obvious explanation, I guess. It's also basic common sense and consistent with literally the whole of medicine, that illness, surprisingly, is terrible, and that the mix of severe illness with incompetent services built on ideology leading to systemic discrimination is also terrible for patient outcomes.

Today we still lack effective treatment of the fatigue in CFS/ME patients, and despite effort from health-services and schools, HRQoL in adolescents with CFS/ME is low

Stop obsessing over fatigue. We keep telling you it's not just fatigue. You never listen and this is why there are no treatments. You ask the wrong questions and don't care about the answers. Yes means yes. No means yes. Maybe means yes. It is in fact in large part because of those incompetent efforts, YOUR efforts, that there has been zero progress in this disease for decades.

 

[Sly Saint]

ME patients and advocates have only been saying that literally for decades

from interview with Dr Nina Muirhead

I’d delayed my own diagnosis for a good three months having had the positive glandular fever results in the April 2017, which I’d clearly had for about nine months before that, I then looked on the NICE website about M.E., Chronic fatigue syndrome, and I read that this was an illness that would get better with cognitive behavioural therapy and graded exercise, and I thought well that’s not what I’ve got because I’m mentally extremely strong, and exercise makes me worse. So I completely disregarded that diagnosis for myself for a good three months.

NM: So I have a lot of credit to hand to my fantastic GP, who in July 2017 , so nearly a year after I’d started getting ill, listened to me, I had to write everything down because I couldn’t even remember things . So I was in the consultation, my heart rate was 140, I couldn’t think straight, I couldn’t even make eye contact, but I’d written down things like, ‘I can’t read, I can’t concentrate, I’ve got these sore throats, every week I’ve got sinusitis, I’ve got muscle pain” and she said ‘I know what you’ve got’ within about five minutes.

I started reading about M.E. and I could really tell that there was a huge gap in knowledge between what the patient understands and what the general doctor, particularly my generation of doctors, understand. Some doctors don’t even know about it, others are completely misled and think there’s a psychological component to perpetuating the illness which I genuinely don’t believe.

The patients have been very constant with their story and I think that doctors and teachers everywhere need to listen to that.

 

[Sean]

Rehabilitation programmes with exercise, mobilization and body awareness typically delivered from physical therapists, are earlier described as effective in redusing medium and long term fatigue severity in CFS/ME patients [34].

These findings seemingly conflicts with our findings, i.e. that physical therapy or rehabilitation stay are associated with lower HRQoL.

Surprise!

Or not.

 

[Trish]

I don't know what Figshare is, but here's the link to the paper that is now published (the thread starts with a preprint that hadn't been peer reviewed).
https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01430-z