(Coming) thesis: Tarjei Tørre Asprusten "Diagnosis of Chronic Fatigue Syndrome in Adolescents" - 2022

Kalliope

Kalliope

Senior Member (Voting Rights)
Tarjei Tørre Asprusten will be defending his thesis "Diagnosis of Chronic Fatigue Syndrome in Adolescents" for the degree of PhD 7th March 2022.

Principal supervisor is prof. Wyller.

Summary
Diagnostic labels as Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and Systemic Exertion Intolerance Disease (SEID) represent different approaches to the enigmatic phenomenon of long-lasting unexplained fatigue. More than 20 case definitions/diagnostic criteria for CFS/ME/SEID exist (further referred to as CFS). All are based on subjective symptom reports, and the details of symptom requirement vary considerably. No one has been thoroughly validated.

The overarching aim of the thesis was to investigate diagnostic criteria for CFS by:

1) Assess the descriptive, prognostic and construct validity of the Canadian Consensus Criteria (CCC) and the SEID-criteria in adolescent CFS patients, utilizing objectively defined disease markers.

2) Perform a cluster analysis on disease markers within a widely defined group of fatigued adolescents in an attempt to reveal subgroups not visible at the phenotypical level.

The present thesis shows that adolescent CFS patients fulfilling the CCC or SEID-criteria do not differ from adolescent CFS patients diagnosed according to broad diagnostic criteria regarding neuroendocrine, cardiovascular, inflammatory, infectious or cognitive variables. Furthermore, there appears to be no distinct subgroups within the overarching CFS label.

These findings question the validity of the CCC and SEID-criteria, and more fundamentally question the rationale of sub-classifying chronically fatigued patients based on clinical symptoms. Rather, the results seem to suggest that all patients with an unexplained chronic fatigue may be seen as one entity in a qualitative sense, albeit with individual, quantitative differences regarding symptom severity, functional impairments and pathophysiological aberrations.

https://www.med.uio.no/klinmed/engl...disputations/2022/asprusten-tarjei-torre.html
 
Kalliope said:
Tarjei Tørre Asprusten will be defending his thesis "Diagnosis of Chronic Fatigue Syndrome in Adolescents" for the degree of PhD 7th March 2022.

Principal supervisor is prof. Wyller.

Summary
Diagnostic labels as Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and Systemic Exertion Intolerance Disease (SEID) represent different approaches to the enigmatic phenomenon of long-lasting unexplained fatigue. More than 20 case definitions/diagnostic criteria for CFS/ME/SEID exist (further referred to as CFS). All are based on subjective symptom reports, and the details of symptom requirement vary considerably. No one has been thoroughly validated.

The overarching aim of the thesis was to investigate diagnostic criteria for CFS by:

1) Assess the descriptive, prognostic and construct validity of the Canadian Consensus Criteria (CCC) and the SEID-criteria in adolescent CFS patients, utilizing objectively defined disease markers.

2) Perform a cluster analysis on disease markers within a widely defined group of fatigued adolescents in an attempt to reveal subgroups not visible at the phenotypical level.

The present thesis shows that adolescent CFS patients fulfilling the CCC or SEID-criteria do not differ from adolescent CFS patients diagnosed according to broad diagnostic criteria regarding neuroendocrine, cardiovascular, inflammatory, infectious or cognitive variables. Furthermore, there appears to be no distinct subgroups within the overarching CFS label.

These findings question the validity of the CCC and SEID-criteria, and more fundamentally question the rationale of sub-classifying chronically fatigued patients based on clinical symptoms. Rather, the results seem to suggest that all patients with an unexplained chronic fatigue may be seen as one entity in a qualitative sense, albeit with individual, quantitative differences regarding symptom severity, functional impairments and pathophysiological aberrations.

https://www.med.uio.no/klinmed/engl...disputations/2022/asprusten-tarjei-torre.html
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Oh good grief! I am biting my tongue/holding back my fingers to refrain from saying/typing what I am really feeling about this.
(Perhaps it should have a warning that it may trigger elevated BP?)
 
Is it just me, or is that reasoning nonsense? He seems to be saying:

we looked at people diagnosed with CCC and SEID criteria and people diagnosed as 'fatigued'

We found no difference between groups on objective disease markers

- therefore they all have the same condition.

Why not conclude

- therefore the disease markers used are not effective for diagnosing ME/CFS.

That's why we need subjective symptom based criteria - precisely because there are no biomedical tests yet to diagnose ME/CFS.
 
One of the opponents is Charlotte Ulrikka Rask from Psychiatric Hospital for Children and Adolescents in Aarhus, Denmark. There's a long list of publications from her on functional disorders

https://pure.au.dk/portal/en/person...sk(1e308742-df61-47da-83ce-53d8a7c774c3).html

She coauthored a book with among other Per Fink on functional disorders as well as various academic papers on same subject.

ETA: Here are the titles of some of her publications:

  • Self-help interventions for young people with persistent physical symptoms: A systematic review

  • Adolescents with functional somatic syndromes: Symptom profiles, illness perception, illness worry and attachment orientation

  • Illness perceptions of youths with functional disorders and their parents: An interpretative phenomenological analysis study

  • Feasibility of group-based acceptance and commitment therapy for adolescents (AHEAD) with multiple functional somatic syndromes: a pilot study

  • Family-based interventions for children and adolescents with functional somatic symptoms: a systematic review

  • Impact of functional somatic symptoms on 5-7-year-old's healthcare use and costs
 
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The extract seems to suggest the author was also using an unexpressed additional definition of a condition best described as idiopathic chronic fatigue of unidentified aetiology, and ignoring the symptoms other than fatigue necessary for most of the more accepted definitions of ME/CFS.

I regard with concern anyone undertaking in-depth study of definitions and classifications that seems at risk of confounding the symptom of chronic fatigue with ME/CFS whichever definition you use.
 
Does the "lack of differences" also hold when PEM is objectively measured?

The IOM report concluded that PEM is the symptom that best helps distinguishing ME/CFS from other conditions. It would be interesting to compare the reasoning used by the IOM report and that of the author.

I find it really hard to believe that the case definitions are entirely useless and that we would lose nothing by lumping everyone with unexplained fatigue together.

If you measure irrelevant things then you'll find no difference between patient groups. That's one way to arrive at a lack of differences. The other is that the patient groups are identical but that seems a lot less likely.
 
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strategist said:
Does the "lack of differences" also hold when PEM is objectively measured?

The IOM report concluded that PEM is the symptom that best helps distinguishing ME/CFS from other conditions. It would be interesting to compare the reasoning used by the IOM report and that of the author.

I find it really hard to believe that the case definitions are entirely useless and that we would lose nothing by lumping everyone with unexplained fatigue together.

If you measure irrelevant things then you'll find no difference between patient groups. That's one way to arrive at a lack of differences. The other is that the patient groups are identical but that seems a lot less likely.
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In the late 80s Wessely and the others of his ilk chose to move from ME with its main symptom being an abnormal response to exercise to CFS by considering fatigue as the main (if not only!) symptom worthy of recognition and assuming that all fatigue is a single continuum of disease.

Was this useful? It did nothing to help patients. Even biomedical research was ineffectual because results were always inconclusive as there was no way of selecting a coherent group of patients. Some researchers chose patients who fit the ME definition but were forced to publish as using Fukuda. Others used simple fatigue so they could extol CBT as a cure all.

The only winners were the insurance companies and the people who were able to build a career despite not helping any patients.

The biopsychosocial people have taken PEM and twisted it so it does not mean the unique symptom that exists in ME then we can get this sort of travesty. I do not like to rubbish someone at the start of their career but the original pushers of this theory were cruel, anyone doing it nowadays is worse because they have thirty years of history to see it does not help anyone.
 
Mithriel said:
I do not like to rubbish someone at the start of their career
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He is 35 years old and currently working as a GP, so not at the very start of his career. Must be an old photo they've used where he looks much younger. But that just makes it worse. Had he been 10 years younger it might have been easier to excuse him for trusting his professor completely and not familiarise himself with the whole field of what he's chosen as subject for his PhD.
 
The thesis summary said:
Diagnostic labels as Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and Systemic Exertion Intolerance Disease (SEID) represent different approaches to the enigmatic phenomenon of long-lasting unexplained fatigue.
[...]
Rather, the results seem to suggest that all patients with an unexplained chronic fatigue may be seen as one entity in a qualitative sense
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"Immediate failure to defend thesis. The committee expresses its condolences for the wasted three years of your career."
 
Sphyrna said:
Not the first time Wyller engaged in this exact same sort of specious reasoning. It didn't make any sense back then, and it certainly doesn't now.
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Are there subgroups of chronic fatigue syndrome? An exploratory cluster analysis of biological markers, Asprusten et al, 2021

Forum thread here:

Sly Saint said:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02713-9
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Thread on the music therapy study here:
Dolphin said:
Free full text:
https://bmjpaedsopen.bmj.com/content/4/1/e000620.abstract
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And ...

Kalliope said:
Reposted at virology blog by David Tuller

Trial by Error: Tack's Take on BMJ's CBT-Music Therapy "Feasibility Study"
I have always made it clear that I pay attention when smart patients assess bad research. That’s how I stumbled into this whole mess in the first place–by reading what patients were writing about the PACE trial. (In that case, I at first dismissed the concerns when I read about how participants could get worse and still be counted as recovered. I figured patients must have it wrong. I knew no credible journal could have published such a study–much less failed to retract it when the problem had been pointed out.)

One of the smart patients whose analyses I pay attention to is Michiel Tack.
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Nina E. Steinkopf has written the following blog post about the dissertation providing more details and background:

Doctoral dissertation casts doubt on ME

Quote:
By casting doubt on whether the symptoms of ME are objective or if it makes a difference in which diagnostic criteria that are used for ME – as this dissertation does – the myth is maintained that there is no difference between ME and other fatigue conditions, and thus harmful and ineffective treatment can continue.
 
The public defence of the thesis took place yesterday.

Lightning Process coach Live Landmark says on twitter (quickly translated by me):

- Take home message after today's thesis on ME: not important to fulfil the "strict" criteria. No finding of sub groups. The diagnosis is regardless set based on the patient's descriptions and the doctor's gut feeling.

She gets a reply from someone who attended the public defence who says the following:

- It's difficult with diagnoses of exclusions lacking identified markers. The "kindest" public defence I've been at (I've attended quite a few). To collect many different cases into one umbrella term kan create as many problems as it solves, both for research and treatment. This study didn't find any differences in different sets of criteria. Fine. But from there to conclude that everyone with the diagnosis then are similar, and to describe the similarities with characteristics of the patients' attitudes and misconceptions - that's an incredible stretch. Here there were no input on alternative explanatory models, neither from the candidate or opponents. Undocumented prejudice doesn't belong in a public defence of a doctorate. In this milieu it's apparently accepted, even a "truth"? It's not trustworthy.



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