MUS or MUPS and ME/CFS?

Yann04

Yann04

Senior Member (Voting Rights)
Hi. Since the MUPS (medically unexplained physical symptoms) crowd often like to classify ME as MUPS. I’m wondeting if there is a review or any type of research explicitly arguing against the classification of ME as MUPS?
 
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I can't even remember what MUPS means. Medically Ubiquitous Parrot Symptoms?

(I can feel a new word game coming on.)

But seriously, I can't remember reading anything explicitly challenging this characterisation. The Nice guideline says "Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition" ... which may or may not help.
 
yannlk said:
Hi. Since the MUPS (medically unexplained physical symptoms) crowd often like to classify ME as MUPS. I’m wondeting if there is a review or any type of research explicitly arguing against the classification of ME as MUPS?
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I remember an article that was in a more hard copy type publication - health sense? or healthwatchUK? that had @Caroline Struthers as author regarding MUS?

AHA! It is not only drugs and devices that can harm - HealthSense (healthsense-uk.org)

full newsletter: The HealthWatch Newsletter (healthsense-uk.org)


I put a link somewhere on one thread to it so would need to find it to see if there are other pieces of research referenced specifically. Or maybe I put a note saying I couldn't find the link I'll have a search - OK there is a reference to this article in the following S4me thread: Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White | Page 3 | Science for ME (s4me.info)

I get the impression that MUS was invented basically to dump ME into and to hide it along with lots of other conditions and people so it is an interesting take having to argue we shouldn't be in some category that they only got away with creating because of it (but that is the same for a lot of other bad things out there it seems they coat-tailed bad research into CFS to create it as a new area) so there is a circular element about them then taking ME/CFS out.

The whole Long Term Conditions idea, certainly with IAPT and now whatever it is called, seemed to have been using that one for example - so those are probably contexts to search on?
 
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bobbler said:
I remember an article that was in a more hard copy type publication - health sense? or healthwatchUK? that had @Caroline Struthers as author regarding MUS?

AHA! It is not only drugs and devices that can harm - HealthSense (healthsense-uk.org)

full newsletter: The HealthWatch Newsletter (healthsense-uk.org)


I put a link somewhere on one thread to it so would need to find it to see if there are other pieces of research referenced specifically. Or maybe I put a note saying I couldn't find the link I'll have a search - OK there is a reference to this article in the following S4me thread: Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White | Page 3 | Science for ME (s4me.info)

I get the impression that MUS was invented basically to dump ME into and to hide it along with lots of other conditions and people so it is an interesting take having to argue we shouldn't be in some category that they only got away with creating because of it (but that is the same for a lot of other bad things out there it seems they coat-tailed bad research into CFS to create it as a new area) so there is a circular element about them then taking ME/CFS out.

The whole Long Term Conditions idea, certainly with IAPT and now whatever it is called, seemed to have been using that one for example - so those are probably contexts to search on?
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I might just be missing where I wrote this in my initial comment, but I intended to emphasise this and now can't see it:

YOu might want to look at the references in Caroline's article too, in case there are any that might be useful re: MUS, and go from there?
 
yannlk said:
Thank you for the very detailed and helpful answer. Much appreciated:)
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:)

I have just realised from looking into this and noting the circularity how useful a question it was to ask.

A lot of worries for pwme at the moment seem to be coming from us getting thrown under generic 'long term conditions' or 'chronic illness' rehab/'treatments'/ideologies without exemption noting that these don't work for something that works like ME/CFS

You have just helped remind me and underline how probably a lot of those policies / initiatives / ideas and rehab stuff actually were grown based on the very dodgy research into CFS and then proliferated to being claims for 'long term conditions'

and now they are trying to claim these are 'evidenced for long term conditions/chronic illness' and profilerate it back from this supposed general --> specific without exemptions.

I wonder how many of these policies / initiatives /rehab programmes are actually merely using evidence along the lines of that highlighted as useless due to being very low quality and low quality as part of the 2021 Nice Guidelines process/analysis underneath it all?

I'm probably not on form enough to get my words right on completing this but it reminds me of money laundering or 'greenwashing' or whatever the other analogies might be where someone develops something based on bad research in one arena, then moves it into another sector to give it the facade of being clean or having come from another source before moving it back?
 
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