Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

Molly98

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I am just waiting for an assessment by Exeter paediatrics for my daughter who has chronic pain after a minor injury last year that has escalated into severe unexplained pain . Also son has CFs and has been seen by both Dr street and Dr Crawley who will be at the meeting. Guess we might be a case study ? I would love to be a fly on the wall. I will ask why it was called Muppets when we meet next. I hate this labelling of people they are more than their symptoms and it is very disrespectful
@UKmum I would encourage you to comment on these websites if possible and write a complaint as you have direct experience as a parent and your voice and experience really counts on this. They need to hear from parents.
 

Large Donner

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@charles shepherd is also going to be writing a letter of complaint

From MEA website comments
Charles Shepherd
I will be sending a formal complaint about the title of this study day to the President of the South West Paediatric Club tomorrow morning. Dr Charles Shepherd - Hon Medical Adviser, MEA
The title is one problem, the contempt within is the real problem. Just removing or changing the title will not be sufficient and the title issue itself should be used as a catalyst for the people who receive the complaint to see what is really going on beneath the title.

I have zero faith that the title will be removed and also that any bodies complained to will do anything more than Holgate did in his corporate response to Tuller.
 

Large Donner

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I am going to stick my neck out in advance and write the response AfME will eventually come up with.

"We have been in touch with the people organizing this event and they have assured us that no offense was meant and that what they meant was they (the speakers) are the ETS and the MUPPS are the symptoms that the patients are experiencing and by using this catchy acronym we have reached out to a larger audience to inform them of the many problem such patients experience. We endeavor to provide and inform for the needs of children with MUPPS".

Or it will be something like "oh ET stands for Exeter". Then they and people like Crawley can use it to call people a vocal minority of complainers.
 
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:lol: we must be hanging out in the same places @trishrhymes :)
This is a bit off topic hope it's ok. I just went to look at this on the MEA Facebook page and noticed (maybe it's a blip on my computer?) that you can no longer post messages to the page. You can only send them a messages - I suppose privately. Yesterday you could - I was reading the messages and replies. Why would they do this? I often feel reassured that people are alerting MEA to issues that I am unable to - if that makes sense.

Edit - I'm an arse. Wrong quote. It was supposed to be the one about MEA Facebook page posted by Molly - I think . . . I'll get my coat . . .
 
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I fell asleep and then woke up again stewing over this. I've added to the Facebook comments

Jenny Horner Children who miss out on so much due to severe chronic illness should as an absolute minimum be able to rely on their paediatriclans for respect and understanding. Even if those doctors feel that they cannot yet explain their symptoms (which is contested anyway). Using such a derogatory term conveys instead a shocking disrespect for vulnerable patients.

Jenny Horner Patients with these conditions already had grave concerns about the agenda behind MUS/MUPS. Even this more neutral term communicates a worrying attitude from doctors. It seems like they are resigned to not understanding the cause of these symptoms, that they are unknowable (or even unreal). I have two of these conditions. When I have had the fortune to be the patient of more curious and supportive doctors symptoms which had been "unexplained" for years become explained by a relevant medical test! Years of "persistent, unexplained" dizziness and vertigo was caused by an inner ear lesion etc.

Jenny Horner To patients it seems odd that these conditions are even framed as unexplained. POTS is diagnosed with objective tests. The physiology of it is understood. There are treatments which alleviate symptoms. There are various underlying causes. Like most conditions it isn't completely understood but it doesn't fit a description of unexplained. EDS I don't know a lot about but it often runs in families and is associated with certain genetic mutations which cause a connective tissue disorder. ME has many pieces of the biological jigsaw already discovered but how they fit together is not yet certain, this isn't the same as unexplainable, more like the explanation is in-process.

Jenny Horner Patients already feared that the perspective of MUS wasn't in our best interests. The titling of this event confirmed some of our worse fears about the attitude of medics to our predicament. These conditions are highly disabling. Many of us are housebound or bedbound for years, abandoned by the medical establishment. It is unacceptable and must change! I will also be taking the issue further.
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I see it has already been reported as disablist hate crime to the police and GMC.

I'm not sure which complaint avenue I'll go down. A joint letter type of thing is more powerful but would use a lot of spoons.
 

Esther12

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I'm not a fan of Sonya's, and do not see what could be 'clever' about this play with the acronym, but to be fair to her it doesn't explicitly state that "Children with ME = MUPPETS". It's probably best to push firmly for an explanation than jump to a conclusion.
 
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Lyn Gillame added the Oxford English Dictionary definition, in case any non UK members are confused about why we are so insulted by cute puppets

Muppet: An incompetent or foolish person.
idiot, ass, halfwit, nincompoop, blockhead, buffoon, dunce, dolt, ignoramus, cretin, imbecile, dullard, moron, simpleton, clod

https://en.oxforddictionaries.com/definition/muppet
@Esther12 i see what you're saying but I think it's overly generous. It is for paediatricians about their patients with Medically Unexplained Physical, Psychological Symptoms which they class as ME, POTS, EDS. Therefore the MUPPETS referred to include children with ME.

I accept they probably didn't think about how it would be perceived. Someone would have changed the title if they had surely?

It might be good in official letters to explain it from the point of view of how we read it rather then assuming we know their motivations.
 

Esther12

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@Esther12 i see what you're saying but I think it's overly generous. It is for paediatricians about their patients with Medically Unexplained Physical, Psychological Symptoms which they class as ME, POTS, EDS. Therefore the MUPPETS referred to include children with ME.

I accept they probably didn't think about how it would be perceived. Someone would have changed the title if they had surely?

It might be good in official letters to explain it from the point of view of how we read it rather then assuming we know their motivations.
I guess I think of it more as 'cautious' than 'generous'! I reckon they're probably bastards, but also think that they've got wriggle room, and that it would be best to not risk going to far in a way that could let them portray themselves as victims. Generally, I think that's the best way of challenging people, but I know that it can seem overly cautious to others.
 

Molly98

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I fell asleep and then woke up again stewing over this. I've added to the Facebook comments



I see it has already been reported as disablist hate crime to the police and GMC.

I'm not sure which complaint avenue I'll go down. A joint letter type of thing is more powerful but would use a lot of spoons.
Brilliant comments Jenny put so well, let's hope someone takes notice
 

sarah darwins

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I'm not a fan of Sonya's, and do not see what could be 'clever' about this play with the acronym, but to be fair to her it doesn't explicitly state that "Children with ME = MUPPETS". It's probably best to push firmly for an explanation than jump to a conclusion.
I doubt even the people who came up with this know the explanation. As much as anything this confirms the dismal quality of standards (and, let's be frank, people) in this whole area of 'psychology as medicine' in the UK, an area where third rate academics get away with substituting acronyms and buzzwords for supportable research.

These are people giddy with their 'success' — careers built on churning out junk papers and running workshops, seminars and multi-media programs ("we've got an app for that") funded by an NHS desperate for anything to get patients out of overwhelmed doctors' surgeries. It's a ship of fools sailing away with no clue what they're doing but a belief that it must be important because someone's actually paying them for it.

I'm not a bit surprised that such people would be bone-headed enough to come up with "A Day with the MUPP(ets)".

Give me strength.