Letter to the editor about ME/CFS in Swedish medical journal

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https://www.s4me.info/threads/news-from-scandinavia.647/page-51#post-237731

Good opinion piece about ME in the Journal of the Swedish Medical Association. It's written by Sten Helmfrid and Sture Eriksson from the Swedish ME Association.

When myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) is noticed in the media, the lack of knowledge about the disease mechanisms and disagreement within the medical profession is often emphasized [1, 2]. Caregivers use the knowledge gaps as an excuse for inaction [3]. It is therefore important to point out that there is much that the researchers actually agree on and that the care of this disadvantaged patient group must be improved.

Läkartidningen: Vården använder kunskapsluckor som ursäkt för passivitet vid ME/CFS
google translation: Health care uses knowledge gap as excuse for passivity with ME/CFS

 

English translation by authors, https://www.researchgate.net/public...ge_gap_about_MECFS_as_an_excuse_for_indolence

https://twitter.com/user/status/1229667387689009154

 

A letter to the editor about care for patients with ME/CFS was published in the Swedish medical journal Läkartidningen yesterday. An English translation of the article has been published at ResearchGate. The English title is "Care providers use the knowledge gap about ME/CFS as an excuse for indolence".

https://www.researchgate.net/public...ge_gap_about_MECFS_as_an_excuse_for_indolence

Here is a link to the Swedish article: http://www.lakartidningen.se/Opinion/Debatt/2020/02/MECFS-finns-och-patienterna-behover-hjalp/

It is interesting to read the comments from GPs. They are offended because it is suggested that the primary care cannot deliver adequate care and question the diagnosis and the need for specialised care. No one is interested about the situation of the patients, though.

 

Yes, good point. I would understand the reactions from primary care, the frontline, if they where blamed for the situation, but they’re missing the point. This is obviously a gigantic systematic and structural problem, from deep within medicine and all they way to clinical practice. And unfortunately primary care often feel like they are blamed, which of course not is fair. I feel quite sorry for GP’s navigating here, although they should be able to gain and update at least some knowledge by themself.

But it is alarming and quite pathetic,
that nobody really seems to care and have interest in the well-being of patients and the substantial lacks of how you approach these patients and how you actually can help them. The options are limited, but yes a good start is by not harming even more due to lack of and/or insufficient knowledge.

Could these people please focus on the latter, instead of physicians blaming each other.

 

Yeah no kidding, the framing is largely about how it affects them, how it is difficult for them. And the discussion is frankly no more informed or relevant than most comments on politics stories. Shows how literally everything is still to be done to begin solving this problem but no one wants to do it so it never happens and round and round the discussion goes over how we know little but nothing is being done to change that so spare me the whining, when you don't try you don't get to complain that other people haven't solved the problem for you.

We've only been saying the problems are systemic for decades by now and need a system-wide shift to be solved, but it's not as if anyone is paying attention to anything we say, or even that we exist at all beyond being an annoyance in their daily routine.