A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of EUROMENE, 2020, Pheby et al

[John Mac]

Full title:
A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE)

Abstract
Background and Objectives
The socioeconomics working group of the European ME/CFS Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS.

Materials and Methods
A MEDLINE search was carried out.
The papers identified were reviewed following the Synthesis Without Meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature.

Results
33 papers were identified in the MEDLINE search.
The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.
Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received.
These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades.

Conclusions
Lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.

https://www.preprints.org/manuscript/202011.0735/v1

 

[rvallee]

Honestly that's a bit odd to do. It's perceived as a discriminated "non-disease". We know that already, it's generally dismissed as a laughable thing of no medical concern. Of course physicians have terrible knowledge about it, the current paradigm is literally built on a delusional fantasy. We really should have moved on from pointing out the obvious a long time ago.

So really: is this necessary? We know this. None of this is by accident even, it's entirely on purpose. I guess that puts it in the literature but it's not as if any of this ever changes anything. Medical institutions don't want anything to do with it and so they completely fail at it. Refusing to work on a problem leaves it in a bad state. Confirming the outcome of that seems like unnecessary work.

Maybe it is necessary. But then this would explain a lot about the lack of progress, if the obvious has to be pointed out over and over again with nothing ever changing as a result because the outcome is what people have decided to do with it.

 

[Kitty]

So really: is this necessary?

It absolutely shouldn't be, of course. But I read the abstract in a slightly more positive way: another nudge.

When you're trying to educate a disparate group of people, you have to use a lot of different channels. Get reminders into spaces they might visit. So for me, anything that reminds anybody in the UK healthcare system just how shittily we've been served, is fine.

Yes, it's feckin' outrageous that it's necessary, but confronting them doesn't work. If little nags are more effective at pricking the collective conscience, I'll grit my teeth...

 

[Milo]

So really: is this necessary? We know this. None of this is by accident even, it's entirely on purpose. I guess that puts it in the literature but it's not as if any of this ever changes anything. Medical institutions don't want anything to do with it and so they completely fail at it. Refusing to work on a problem leaves it in a bad state. Confirming the outcome of that seems like unnecessary work.

Well, the last 2 sentences are worth it to me, as this is now part of scientific literature.

Conclusions: Lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact

This work needs to be done. While it may not bring heartwarming feeling of a biomarker or a target drug, simply stating that patients are not receiving care is important. We cannot have accurate epidemiological data if physicians do not even know how to diagnose or do not recognize the patterns of the illness.

This may well feel like be ‘square 1’ for us, but if this represent the first paper of this Euromene working group aiming at improving diagnosis, treatments and disability benefits for patients, then i take that and i congratulate this team for their good work.

Edit to add: it seems to be a preprint and it has not been peer-reviewed.

 

[Andy]

Open access, https://www.mdpi.com/1010-660X/57/1/7/htm

 

[rvallee]

Well, at least it's well done. All things we already knew but they still have to be told again and again, somehow.

This:

Between a third and a half of GPs lack confidence in diagnosing or managing ME/CFS, or dispute its existence as a genuine clinical entity. A similar proportion of ME/CFS patients express dissatisfaction with the primary medical care they have received, and experienced marked diagnostic delay when they first fell ill. These proportions have changed little over recent years, and similar conclusions have been reached across the range of geographical locations where these matters have been investigated. This conclusion renders problematic attempts to determine the prevalence of ME/CFS, and hence its economic impact. In addition, diagnostic delay is associated with severe disease and poor prognosis, and the likelihood of increased costs.

And that:

The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age]

Are cause and effect. Lying and discriminating against a serious chronic disabling disease has consequences. All this death and suffering, billions of life years snuffed out of existence, are entirely the fault of medicine. Technically this qualifies as genocide. Genocide does not mean cold-blooded murder, creating the circumstances that lead to the same counts just as much. This is even multi-generational genocide, as so many of us did not have children because of those circumstances.

First do no harm, my ass.