Do diagnostic criteria for ME matter to patient experience with services and interventions?, 2023, Kielland et al

Full title: Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway

Abstract:
Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients’ experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise. We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group. The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and “do-no-harm” should be a guiding principle in all practice.

Full paper:
https://journals.sagepub.com/doi/10.1177/13591053231169191

 

I'm happy to see this published, the results have been mentioned in various talks by the researchers already. I don't have the energy to read it now though.

 

Thanks for adding Kalliope!

This image from the article at FaFo's own page of what experience pwME have with various treatments they have to do is quite damning.
Translated color scale: "Very negative", "Negative", "Neutral", "Positive" "Very positive"
Translated y-axis (from the top): Gammanorm, Coping course*, Psychologist, Low Dose Naltroxen, Physiotherapist, Psychiatrist, Cognitive Therapy, Rehabilitation, Lightning Process, Work training**


*Mestringskurs is a course that should be about an individual disease, providing information about the disease to better understand what is going on and help adapt to living with the disease
**Arbeidsutprlving is trying out different type of work to see if one is able to do it. In the case of NAV/Disability, one can unfortunately experience being pushed to make onesself worse "to prove a point", as otherwise the disability may not be believed.

Edit: Changed the wording to make it clear this is the patient's experience of the treatment in question, not necessarily "a response" as was first written.

 

That is, a cult.

 

This does look like an interesting and useful study. I haven't read the paper yet.

I just would like to point out, in a pedantic way, that the wording in the article i.e. 'what proportion of patients benefit from a therapy' is not an accurate description of what has been measured here. The abstract is more careful but even there, there is a suggestion that the patients experience benefit as a result of a therapy.

Actually it is 'patients reporting experiencing a benefit' as a result of the therapy. They may not be experiencing a benefit (or harm) because of the therapy. They may not even be experiencing a benefit (or harm) at all, they may just think that they are.

For example, that 9% of people who report experiencing a benefit from the Lightning Process will consist of some people who have in fact improved, but the cause of that improvement is almost certainly not due to the course they did. And it will also include people who think they have benefited when they actually haven't improved at all. It might also include people who benefited from the therapy because they had a chance to interact with other people with ME/CFS and found some new friends - so the benefit may not have anything to do with increased function.

The reason for the pedantry is that I would not like BPS people to use this study to point to the 16% of people who report benefitting from cognitive therapy and say 'look, these therapies are effective for some people! They are valid useful therapies. Why would you deny people with ME the opportunity to undertake them by not including them as options in ME/CFS information materials?'

 

Gammanorm?

What organisation is offering this therapy?

 

There is nothing more to be read, I think they really only meant to have a link to the article in that space.

I dislike how some are arguing that CFS is different from ME, and maybe those with CFS may benefit. Some even go so far as to say that those with burnout and similar WILL benefit from CBT/GET. To me the repetition of "some may benefit" is damaging to us, as that it what is sticking in people's head, and I don't think everyone with say burnout will benefit from CBT anyway.

There has been doctors that have provided gammanorm off label, but I don't know how common it is/has been.

 

Forskning.no have finally written about this study, it was no surprise who the author was (have written many pro-cbt/get/"holistic" articles previously and not least added fuel to fire about patients harming research). So of course patients only "have an opinion" they have been made worse, and the fact that people who have not become healthy are not part of the patient set is a draw-back worth focusing on. Silje Reme is interviewed and gives her opinion on "fatiguing illnesses" and how "some patients" experience stigma and lack of knowledge. I don't quite see why it seemed more relevant to get a knowledgable fibromyalgia patient to talk about the study than an ME patient, except of course make everything the same in true FND fashion.

Halvparten av ME-syke mener de ikke får hjelp av helsetjenestene og NAV
Half of ME sufferers believe they do not get help from the health services and NAV

Some quotes (not in order they appear in the text)
Author of this piece have supported Live Landmarks LP study, so not surprising she does not mention that Lightning process was asked about, instead writes this on alternative treatments:
"The researchers also asked about alternative remedies. Many had tried one of them, and of these, 60 per cent thought it had a positive effect on their health, despite the fact that there is no scientific documentation that it has an effect on ME, according to the ME association ."

Throughout the text, the author is careful to use "believe" about ME patients experiences, ie. "believe they become more sick". Contrast with FaFo researcher that says:
"It is particularly disturbing that so many ME sufferers find that their health gets worse during Nav's work trial, she said further."

I'm glad FaFo included this finding that it seemed more help that health care left you alone rather than trying to "help":
Ten families with young people with ME were followed up after three years.

- Here we saw improvement, but they were not back in full time work or studies. And it appeared that the improvement came from the fact that the health and welfare services had withdrawn, rather than as a result of measures, writes Kielland.

And in contrast to those worried about the patient that has recovered not being part of studies on patients, FaFo is more worried about that the severe is not able to take part

 

The study is discussed in forskning.no today.

Dispute over Norwegian ME study.
What does it actually show?

The "dispute" is that proponents of a (bio)psychosocial model of the illness have critiqued the study. Only a recommendation for a view into the double standards on display.

Criticism that is discussed:
Criticism 1: Does not show whether the patients have become healthier or sicker
Criticism 2: Contrary results from other studies
Criticism 3: Unclear when the patients were in treatment
Criticism 4: Benefit of a treatment is not the same as perceived health effect
Criticism 5: Unclear presentation of the data

 

Does the translation using the term “rig” to describe how to design research reflect the original Norwegian in the quote of Helland. In English usage one meaning of to rig is to falsify eg to rig a vote.

 

That said, the authors of the study have been accused of rigging the results due to selection bias, even if it is not done here.