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

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

 

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.