Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A description of adult experiences, 2020, Essebo & Joqi

From: Dr. Marc-Alexander Fluks

 

https://twitter.com/user/status/1223152601010778114

 

I have read the thesis in its enterity in Swedish. It's to long to translate, but I have translated some statements that I find troublesome or outright erroneous :

We are currently discussing in a Swedish ME-group if we should get in contact with the educational institution and the student's tutor, to alert them to the factual errors in the thesis.

Since this will be read by people soon to become nurses, coming in direct contact with patients, their knowledge surely spreading to colleagues etc, isn't it important that they aren't misinformed, giving potentially harmful advice?

Some people in the ME-group think this is petty and a waste of energy though, because it's just a masters thesis.

 

If you have the resources then it might be worth contacting the tutor. If it works out then the next batch might of nurses might be a little better informed.

Like you @Anna H I can see issues with every quote in your post. Especially -

I completely fail to see how a nurse telling you about healthy eating and that regular meals are important are going to overcome being unable to go food shopping or shop online or prep and cook food.

 

https://twitter.com/user/status/1223395259499106304


https://twitter.com/user/status/1223396307169095680

 

Ehhhhhh what? Maybe the same way cocaine is a relaxant.

Really tired of seeing pacing framed as a treatment. Literally no one but deniers have ever pretend it is. It's hard enough to make progress on a complex problem, having people sow confusion about everything is maddening.

 

Right!!! It looks to me as if they don't even understand what they're saying themselves, if they did, at least it should say "pacing" instead of "PACE" . That sentence doesn't make any sense.

Exactly how I feel about this, it only creates confusion.

 

I can't see that helping either, and it's so patronizing, implying we are to ignorant to know what's good for us.
Thanks for the support @Invisible Woman
We're scraped a bit thin at the moment but trying to put something together.

@Sean I totally agree!

Thanks, I really value your input !

 

Chronic disease management is not treatment and i agree with you @rvallee

What i want my health care system to do is to look for treatments that are of value to me, which means that are likely to modify my disease. All that management stuff is aimed at adopting behaviors which falls within their guidelines on how to cope and manage this disease, which they usually like to lump with other diseases as well. Seemingly the understanding of the patients going through the program is that you must pace, do yoga or tai chi, eat what they tell you, take the supplements they tell you go to bet at 9PM and up by 7 AM, and you must practice mindfulness religiously. And if you fail to do those, then you are deemed non-compliant and there is nothing they can do for you. This is not medicine, it is CBT in disguise.

We all deserve so much better.

 

Can you really be engaged in a strategy to conserve energy while at the same increasing the amount of energy you expend? I feel like a law of thermodynamics is being violated here.

 

Ooh I didn't even make the connection and I think you nailed why they did, they think PACE studied pacing. Which, of course, any reasonable person would think and the whole point of this Orweillian acronym.

Which... uh...

 

Also kind of Orwellian (or at least ironic) is that, in Latin, PACE means "with peace." It's usually used as an expression of deference to a respected person's contrary opinion, sort of like starting a sentence with "No offense..."

So... "Pace Mike, but I think this study* is for the birds."

[*PACE]