Preprint Development of Epidemiological Research Guidelines for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in Canada, 2024, Nacul

[Dolphin]

https://www.preprints.org/manuscript/202405.1571/v1

Development of Epidemiological Research Guidelines for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in Canada

Enkhzaya Chuluunbaatar-Lussier
Travis Boulter
Carola Munoz
Sunita Vohra
Rahul Shetty
Sharon Houle
Riina Bray
Kathleen Kerr
Luis Nacul *

Version 1 : Received: 23 May 2024 / Approved: 23 May 2024 / Online: 23 May 2024 (14:17:58 CEST)

How to cite: Chuluunbaatar-Lussier, E.; Boulter, T.; Munoz, C.; Vohra, S.; Shetty, R.; Houle, S.; Bray, R.; Kerr, K.; Nacul, L. Development of Epidemiological Research Guidelines for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in Canada. Preprints 2024, 2024051571. https://doi.org/10.20944/preprints202405.1571.v1


Abstract

The Interdisciplinary Canadian Collaborative ME Research Network (ICanCME), established in 2019, aims to foster research in Canada and contribute to finding the causes and possible treatments for myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS), thereby reducing the impact of ME/CFS on the health of Canadians.

The main objectives of this paper are to suggest standards for ME/CFS research for the collection of data from participants (Recommended Data Elements) and to consider other factors, such as design, language, cultural issues, equity, and diversity.

Consensus of the relevant contents of this research guideline was reached during the ICanCME working group meetings and were based on existing guidelines.

Members of the working group contributed to guideline development based on their respective expertise.

The proposed research guidelines could improve research quality and advance knowledge in the field of ME/CFS, and ultimately benefit ME/CFS patients.

Keywords
myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), research guidelines, standardization of data collection, Canadian

https://twitter.com/user/status/1794722513844588784

 

[Creekside]

language, cultural issues, equity, and diversity

That makes it sound like a Liberal handout project that will gush about diversity and culture, and offer nothing for science. I expect they'll continue to use labels such as "fatigue" and "unrefreshing sleep", even those are misleading.

 

[Hutan]

The Introduction:

The etiology of ME/CFS is not fully understood, however determination is multi-causal, like in other chronic diseases.

I don't know what 'determination' means in this context.

In Canada, there are no population based prevalence rates available, but survey data from 2017 suggested the prevalence of self-reported physician diagnosed ME/CFS as around 1.5%, or 561,500 people [7]. According to the 2015-2016 Canadian Health Survey on Seniors, 3.0% of women and 1.5% of men aged over 65 years old reported a diagnosis of ME/CFS, [7].

1.5% of people with ME/CFS? The reference is the Canadian Community Health Survey statistics for 2015-2016. So, that's not quite 2017 data. I looked very quickly at the 2024 survey. It doesn't refer to ME/CFS, it refers to CFS. And it doesn't talk about a physician diagnosis. I can't imagine the 2015 survey asked about ME/CFS. Asking people if they have chronic fatigue syndrome will of course result in relatively high rates. I'm too tired to double check, things are taking too long to download. But, if I am right, the fact that this project had the outcome of Recommendations on epidemiological Research on ME/CFS is rather ironic.

The outcomes of WG5 to date are the development of two recommendations: Recommended Data Elements and current paper, and Recommendations on Epidemiological Research on ME/CFS, which would benefit researchers, clinicians and patients in terms of standardizing diagnostic criteria and efficient research in ME/CFS.

Later in the document, it is actually noted that asking about 'self-reported CFS' will result in an over-estimate of prevalence.

For example, First, while ME/CFS carries a high disease burden, there are no specific biomarkers for diagnostic confirmation, no clinically approved treatments, or permanent cure [10].

What's the temporary cure?

There are still some typos.

The rest of the document looks to have some good things and some that need a bit of further looking at. I think it is worth going through this in detail, as the recommendations for outcome measures may be influential. There doesn't seem to be much justification given for the outcome measures chosen.

Hours of Upright Activity (Good Day, Bad Day Questionnaire)

That outcome measure seems to suggest that people should be asked how many hours of upright activity they have on a good day and a bad day. I think that's pretty hopeless; I don't think I could estimate that very accurately.

 

[Kitty]

That outcome measure seems to suggest that people should be asked how many hours of upright activity they have on a good day and a bad day. I think that's pretty hopeless; I don't think I could estimate that very accurately.

I'd find it hopeless too, but for a different reason: the answer's the same whatever sort of day it is.

If upright means standing up, I can't do it any longer on a good day than a bad one.

If it means sitting up, I do it every day anyway. I can't imagine having to lie down on a bad day—hideous muscle pain as well as PEM! Sitting comfortably with my feet on the floor reduces my pain levels by 80%, which is very welcome when I feel rubbish.

 

[ME/CFS Skeptic]

For diagnosis they recommend the IOM, CCC or NICE criteria.

For PEM they recommend the PEM section of the DePaul Symptom Questionnaire PEM section.

For anxiety they recommend the Generalized Anxiety Disorder 2-item (GAD-2) which asks two questions: Over the last 2 weeks, how often have you been bothered by the following problems?

1. Feeling nervous, anxious or on edge
2. Not being able to stop or control worrying​

For depression they recommend the Patient Health Questionnaire-2 (PHQ-2) which the questions: Over the last 2 weeks, how often have you been bothered by the following problems?

1. Little interest or pleasure in doing things
2. Feeling down, depressed or hopeless​

I assume this was a deliberate choice because other and longer depression/anxiety questionnaire often ask about physical symptoms that ME/CFS patients will always have to say yes to, even if they are not depressed and anxious.

If a patient scores positive on the 2-question scale, they recommend using the longer version. For the PHQ-9 that would mean that questions such as 'sleeping too much', 'feeling tired' and 'trouble concentrating on things' would be asked, which are all core ME/CFS symptoms.

 

[rvallee]

For anxiety they recommend the Generalized Anxiety Disorder 2-item (GAD-2) which asks two questions: Over the last 2 weeks, how often have you been bothered by the following problems?
1. Feeling nervous, anxious or on edge
2. Not being able to stop or control worrying
For depression they recommend the Patient Health Questionnaire-2 (PHQ-2) which the questions: Over the last 2 weeks, how often have you been bothered by the following problems?
1. Little interest or pleasure in doing things
2. Feeling down, depressed or hopeless
I assume this was a deliberate choice because other and longer depression/anxiety questionnaire often ask about physical symptoms that ME/CFS patients will always have to say yes to, even if they are not depressed and anxious.

I can't say those are particularly pertinent questions and certainly should not be actionable on their own, but this is light years better than the full ones that ask weird questions or explicitly ask about symptoms. But of course dysautonomia easily overlaps with the anxiety questions, for the wrong reasons, and so it doesn't discriminate. But the people behind those questionnaires think that it should so we are stuck with a failing system that refuses to self-correct, or even self-reflect.

I'm certain there are better, and not much longer, ways to ask about anxiety or depression, but even then the problem is mostly that both concepts have been stripped of all relevant meaning in recent years. Every slight displeasure is borderline major depression or crippling anxiety that can cause any and all symptoms for any duration imaginable, for the same reason that PACE lowered the threshold of recovery: otherwise they'd have nothing.

Medicine has convinced itself that there is a huge crisis of mental health that explains why they're doing poorly at solving the remaining problems they face, and by his great noodly appendages they will make sure that they find it, then not actually solve it because they have no idea how to do that, but will say so anyway. Even as they will keep on reporting on an ever-growing crisis of mental health, never pausing for a second about why this crisis keeps growing as they throw more and more attention and resources at it.

And I remain fully convinced that eventually it will be AIs who basically take the necessary step of pointing out that it's all a bunch of nonsense, and the profession will be faced with the impossible conflict of reconciling how this technology that does better than them at every turn must be wrong about this and only this.

 

[Simon M]

For depression they recommend the Patient Health Questionnaire-2 (PHQ-2) which the questions: Over the last 2 weeks, how often have you been bothered by the following problems?
1. Little interest or pleasure in doing things
2. Feeling down, depressed or hopeless
I assume this was a deliberate choice because other and longer depression/anxiety questionnaire often ask about physical symptoms that ME/CFS patients will always have to say yes to, even if they are not depressed and anxious.

When DecodeME looked at this, that was the reason we made the choice - plus reducing the burden for patients.

If a patient scores positive on the 2-question scale, they recommend using the longer version. For the PHQ-9 that would mean that questions such as 'sleeping too much', 'feeling tired' and 'trouble concentrating on things' would be asked, which are all core ME/CFS symptoms.

That recommendation seems pointless for the reasons you mention, though at least the 2-step method avoids sweeping up everyone.