Trial Report Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases, 2024, Wold

[Dolphin]

Free full text:
https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2370209

Research Article
Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases
Bjørn K. Getz Wold
K. Tveito
A. Angelsen
G. Bringsli
F. Berglund
M. Gustavsen
G. M. Andersen
and E. B. Strand

Received 08 Dec 2023, Accepted 14 Jun 2024, Published online: 26 Jun 2024

• https://doi.org/10.1080/21641846.2024.2370209

ABSTRACT

Background and objective
A range of diagnostic criteria are applied for the heterogenous patient group with fatigue or postviral fatigue syndromes with or without Post Exertional Malaise (PEM). We explored whether DePaul Symptom Questionnaires (DSQ) based symptoms reported in an open online survey called MECOV, served to identify more homogenous sub-groups.

Method
Patients living in Norway were invited to participate in an open online survey in 2022. The questionnaire covered diagnostic history, SARS-CoV-2, general health, RAND-36 and DSQ symptoms, treatments and background information.

Results
2362 patients responded to the survey. 1904 respondents had Fatigue or Postviral disease. 1026 fulfilled CCC criteria with multi-dimensional PEM and 14 h recovery period or ICC criteria for ME. 384 fulfilled IOM/NICE or CCC criteria with only less rigid PEM, while 494 respondents fulfilled only broad fatigue and Fukuda criteria. Self-reported health status, number of treatments tried, and reported effect of activity-based treatments varied significantly across the three groups.

Conclusion
DSQ symptom-based survey diagnoses served to identify more homogenous subgroups of patients with Fatigue or Postviral diseases (ME and CFS) and may serve as a valid supplement to standard medical examinations. Symptoms, treatment, management strategies and further research may gain from being tailored to the three sub-groups.

KEYWORDS:

• Online patient survey
• myalgic encephalomyelitis
• chronic fatigue syndrome
• chronic fatigue
• post exertional malaise
• Depaul Symptom Questionnaires

https://twitter.com/user/status/1806366896486289827

 

[Ravn]

Must have missed this paper earlier

It's a survey so has all the usual issues inherent in surveys but it's a large one so the absolute figures are still interesting and support previous surveys' results of GET/CBT/LP being associated with significantly more harm than good

An interesting difference to previous surveys is that they tried to establish 3 subgroups based on how strict a diagnostic criteria respondents met. They then looked at how the subgroups differed in other ways incl whether treatments tried had different effects in the different subgroups. The hypothesis being that this would be so, especially for activity-based treatments

It is essential to stress that this was only a hypothesis. If the hypothesis was valid, we expected the three groups to show different health status as measured by RAND-36, different number of treatments tried, different treatment preferences and different reported effect of various types of treatments. We used the MECOV survey data to test this hypothesis.

The definition and algorithms for these three groups were as follows:

• Group 1: ‘Fatigue’ with not lifelong fatigue, possibly fulfilling the Oxford and/or the Fukuda criteria, but not CCC, ICC or IOM/NICE criteria.
• Group 2: ‘ME with less rigid PEM’ fulfilling the CCC and possibly IOM/NICE, but not the ICC, nor the multidimensional PEM.
• Group 3: ME with multi-dimensional PEM’ fulfilling all diagnostic criteria from Fukuda to CCC with multi-dimensional PEM and long recovery and/or ICC.

less rigid PEM = PEM only after physical exertion and shorter than 14h recovery period
multi-dimensional PEM = DSQ-PEM

There were three major findings. First, Pacing below the energy threshold (3.70), Adapted diets (3.49), and Low dose naltrexone (3.33), all gave a reported positive impact on the symptoms and disease for all MECOV diagnostic groups. The reported effect of Pacing was significantly (p = 0.002) higher in the less severe diagnostic group, but gave a reported positive effect in all groups.

Second, a number of other treatments were reported to give a higher share of respondents an improvement rather than a deterioration: Amino acids, B vitamins / high dose B1 B12, Mindfulness, Physiotherapist, Minerals, Antibiotics, Nevro-/Chiropractor, D vitamins / Fatty acids / Omega3 / Q10, Qigong, Acupuncture, Nutrition with antioxidants, Rehab-centre, Homeopathy. But for all these treatments, the type value reported effect was no effect.

Third, each of the three types of activity-based treatments were associated with a deterioration of disease and symptoms for all three MECOV diagnostic groups combined, with strong negative net reported effects (1.95–2.11). There was a clear difference between Group 1 and the two other groups. Even for the respondents in Group 1, there was a reported effect of deterioration or no reported effect (1.95–2.11), but some experienced improvement. Respondents in Group 2 and Group 3 had a different experience. There was a significant difference across the three groups for CBT (p = 0.011) and for GET (p = 0.039). A mean of around 2 or even below showed that the average reported experience was a deterioration, with a large deterioration for a substantial share and no reported effect for an equal share. As revealed by the figures, a few patients (5-6%) in Group 2 and Group 3 experienced improvement, but a larger share (31-34%) reported a large deterioration by these treatments.

So the non-PEM group was the most different but even there close to half the respondents reported deterioration after GET/CBT/LP and relatively few reported improvement

There's a longer - 90 pages - report available as pdf and Nina Steinkopf has a blog post about it, both in Norwegian

 

[Utsikt]

GET makes 6 patients worse for every 1 patient that gets better. And that’s a generous estimate because it’s reasonable to expect that some patients dropped out before the treatment was allowed to to proper harm, and therefore ended up with no effect.

5 % is also the assumed natural recovery rate. So it very well might be that GET doesn’t help anyone at all.

If GET was a drug, the financial compensations for the harm done would be in the billions..