Preprint Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review 2023,Hussein et al

[Sly Saint]

Abstract

Background: Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multi-system illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.

Objectives: To:
(1) identify and systematically map the available evidence;
(2) investigate the design and conduct of research;
(3) identify and categorize key characteristics; and
(4) identify and analyze knowledge gaps related to healthcare system barriers for people living with ME in Canada.

Methods:
The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.

Results:
In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.
Conclusions:
People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.

https://www.medrxiv.org/content/10.1101/2023.09.20.23295809v1

 

[rvallee]

Main barrier to healthcare: healthcare systems that discriminate against this illness.

No one ever has the courage to just say it plainly. Can't speak truth to power. Can't denounce injustice. This is not some natural phenomenon, it is a product of choices made and denounced by those suffering them. It is roughly the same as the barriers to racial justice, which is racism. And the same as the barriers to gender equality, which is misogyny. But saying it plainly would lead to rabid howling rage, tone policing against injustice, perpetuating it. Say basic truths like this and face condemnation that discrimination will never get. No wonder things change so slowly.

I don't blame the authors here, they say it plainly enough as far as the system allows it. But a system that does not allow criticism of itself is what we are facing here, simple truths cannot be spoken. Medicine is not capable of sufficient self-criticism, and as a result has largely stopped progressing outside of cutting edge biomedical research and technology.

 

[SNT Gatchaman]

Published as —

Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: A scoping review (2024)
Said Hussein; Lauren Eiriksson; Maureen MacQuarrie; Scot Merriam; Maria Dalton; Eleanor Stein; Rosie Twomey

BACKGROUND
Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multisystem illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.

OBJECTIVES
To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyse knowledge gaps related to healthcare system barriers for people living with ME in Canada.

METHODS
The protocol was preregistered in July 2022. Peer‐reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.

RESULTS
In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long‐standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.

CONCLUSIONS
People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision‐makers who are new to the area or encountering ME more frequently due to the COVID‐19 pandemic.

Link | PDF (Journal of Evaluation in Clinical Practice) [Open Access]

 

[rvallee]

Sums it up well enough, although it significantly underestimates the problem by relying only on published research, which is scant and mostly bad, and never dare report things as bad as they really are. A bit like relying only on commissioned polls from a biased firm in a time of mass rioting and civil unrest leading to general strikes.

The perspective of patients is almost never found in published research, and doesn't seem to feature at all here. With systemic discrimination being the standard, only patient reports/surveys can paint an accurate picture, but those are dismissed out of hand, which makes it easy to keep pointing to "polls" showing some support for the government, as long as you ignore the mass rioting and civil unrest.

The search may have missed relevant studies or grey literature from Québec due to a lack of resources for French translation.

They didn't miss anything, it's the same garbage. There's nothing and no one wants to change that but us. A government body has published excellent reports and clinical guidelines for both ME/CFS and LC, but they don't make a difference because the motivation isn't there, caused by widespread disbelief and adherence to pseudoscientific disinformation. I tried again with my GP this summer, waste of time yet again.

Because our research was focused on barriers, we did not report on the positive experiences of those who have accessed specialist care or had a supportive family doctor, but these reports (though far outnumbered by negative experiences) do exist.

Again underestimates the problem since although those do 'exist' in a technical sense, a positive experience with a supportive family doctor only has a single benefit: sick leave and long-term disability. That's it, and it's very rare. The rest is irrelevant, GPs are not allowed to do anything else. So those 'positive experiences' are pretty much in line with what I typically see as a 'positive experience' in chronic illness: not being dismissed entirely. That's not a positive experience in an absolute sense, only in contrast to the standard of awful discrimination and negligence.

The best way to sum it up in my opinion is that health care for ME/CFS is the absolute worst it could be without committing crimes. No one could do any worse, only just as bad, unless they commit crimes. It's systemic failure across the board, denial of basic human rights and runs afoul of many laws, but with no adequate enforcement, which produces the same outcome as a lawless "screw you" model, they mean nothing. We are outlaws, bound by the law, but not protected by it.