Opinion Learning points about myalgic encephalitis/chronic fatigue syndrome: Bridging the gap between research, clinical practice & awareness, 2024,Wahi-Singh

Dolphin

Dolphin

Senior Member (Voting Rights)
https://journals.sagepub.com/doi/full/10.1177/14782715241257968

Open access
Article commentary
First published online May 27, 2024

Learning points about myalgic encephalitis/chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness
Bhanu Wahi-Singh

Abstract

This essay examines the complex landscape of myalgic encephalitis, commonly known as chronic fatigue syndrome, highlighting its chronic and multisystemic nature with elusive causative factors.

It discusses clinical challenges in diagnosis and management, emphasising the importance of increased education and awareness among healthcare professionals.

The role of empathic, person-centred care in improving patient outcomes is underscored, urging for a paradigm shift towards understanding and addressing the profound impact of myalgic encephalitis/chronic fatigue syndrome on patients’ lives.

Wahi-Singh B. Learning points about myalgic encephalitis/chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness. Journal of the Royal College of Physicians of Edinburgh. 2024;0(0). doi:10.1177/14782715241257968

https://twitter.com/user/status/1795200102975295547
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Andy said:
What's that then? The same as myalgic encephalomyelitis/chronic fatigue syndrome?
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Some people have used myalgic encephalitis instead of encephalomyelitis. I did once read a discussion of the relative merits of each term, but I can not remember where or what the reasoning was for the former alternative.

Added - I had to fight google to do a search for myalgic encephalitis, but once it was convinced I really did want to make that search I found quite a few articles using that term.
 
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Encephalitis is inflammation of the brain

Encephalomyelitis is inflammation of the brain and spinal cord.

Myalgic is muscle pain.

Of the eight references that the author quotes, five use "myalgic encephalomyelitis" and the other three do not expand on ME. None use "myalgic encephalitis".

Am I being pedantic? Yes, but I believe details matter.
 
I'm with you on the pedantry @Andy, the different approach to the disease name jarred each time I read it.

But, actually, the essay was very nicely done. I can see why it won. Its premise was quite similar to the conclusion from that recent Swedish study that interviewed parents of young people with Long Covid. That is, while we wait for research to find some answers to what these diseases are all about and how they can be treated, there is still work that health care providers can do. They can accept the uncertainty and, rather than look after the disease, look after the person. An approach of respecting the person is what is needed in ME/CFS, and actually for all diseases.

Who organised the competition? Have we discussed it already? It's a great idea - probably quite a substantial benefit for a modest cost. It's probably something that every ME/CFS and Long Covid support group could do.

Edit - oh, see Dolphin's post above for the link to the thread about the competition.
 
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ME Action Scotland and Action for ME promoted this.
All participants had to undertake Nina Muirhead's CPD module prior to entering the competition. It would be interesting to know how many of those who entered had no previous knowledge of ME at all to be able to gauge the effectiveness of the CPD module.
I did some initial marking for a couple of essays - for some the knowledge gap was still huge at the end and there was a definite difference in tone , background reading and empathy from those who had had some interaction with someone with ME.
Markers were also asked for their take on student's previous knowledge ( if any) , what students learned that was surprising to them and what they failed to understand after taking the module, and how the markers felt after reading them.
So there should be decent feedback to address any module shortfalls and for advocacy work going forwards.
 
Amw66 said:
I did some initial marking for a couple of essays - for some the knowledge gap was still huge at the end and there was a definite difference in tone , background reading and empathy from those who had had some interaction with someone with ME.
Markers were also asked for their take on student's previous knowledge ( if any) , what students learned that was surprising to them and what they failed to understand after taking the module, and how the markers felt after reading them.
So there should be decent feedback to address any module shortfalls and for advocacy work going forwards.
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That's great that there was that additional benefit of providing feedback on the utility of the CPD module. It was a smart idea to link the essay to completion of an education module.

However, unless that CPD module has been improved a lot since I last looked at it, there are a lot of problems with it and I have mixed feelings about medical students completing it. I really hope that some work will be done, using the feedback from this competition and feedback from others, to improve it.
 
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