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

Esther12

Esther12

Senior Member
Messages
13,774
Yogi said:
AYME's medical adviser was Esther Crawley. AYME as an entity is part of AFME now.

She is funded by AFME and deputy head at CMRC which AFME fully supports.

Crawley still says PACE trial was a "great great trial". AFME still doesn't properly criticise the PACE.

What they tell people as the official status of her I don't know.

AFME and EC are interwoven with each other - whatever the official title.
Click to expand...

It's still important to avoid claiming Crawley is their medical advisor if there isn't any evidence this is true. Best to just point to the facts.
 
slysaint

slysaint

Senior Member
Messages
2,125
AT LAST;
some media attention (local really seems the way to go):
http://www.devonlive.com/senior-dev...f-conference/story-30340505-detail/story.html

Senior Devon doctors apologise for offensive name of conference
Comments (0)
Senior Devon doctors holding a conference in Exeter have been forced to issue an apology after apparently branding sick children 'Muppets'.

South West Paediatric Club is holding a conference today which it originally titled 'A day with the MUPP(ET)S'.

MUPPS is short for Medically Unexplained Persistent Physical Symptoms. The organisers of the event at the Royal Devon and Exeter Hospital issued an apology after a large number of complaints.

They said: "The SWPC is extremely sorry for the offence caused by the original title we gave our conference on medically unexplained conditions today.

"This was wholly unintentional and something we very much regret.

"As an organisation deeply passionate about improving paediatric care we wish to make it absolutely clear that this was in no was our description or view of the children we are proud to care for."

SWPC said the title was a description of the doctors and the challenges they face.

A number of people contacted the SWPC and the venue to complain - both directly and via social media. The RD&E said on social media it would be speaking to the organisers about the event.

Janine Lloyd said she was: "Absolutely disgusted at our sick children being called 'Muppets'." Others tweeted 'shame' or 'unbelievable' among dozens of messages.

The hospital issued a standard response to tweets at its account and retweeted the apology from the SWPC.

According to the NHS, medically unexplained symptoms account for up to a fifth of all cases seen by GPs.

The NHS website reads: "Many people have persistent physical complaints, such as dizziness or pain, that don't appear to be symptoms of a medical condition.

"These type of symptoms are sometimes known as "medically unexplained symptoms" or "functional symptoms" when they last for more than a few weeks, but doctors can't find a problem with the body that may be the cause.

"This doesn't mean the symptoms are faked or "all in the head" – they're real and can affect your ability to function properly.

"Not understanding the cause can make them even more distressing and difficult to cope with.

"Medically unexplained symptoms are common, accounting for up to a fifth of all GP consultations in the UK."

Muppet is commonly undesrtood to be an offensive term.

According to Urban Dictionary it is: "an alternative term for idiot or moron. Usually used in the UK to describe someone who is incompetent or gormless. Taken from the name for the popular Jim Henson Puppets."
 
Y

Yogi

Senior Member
Messages
1,132
Esther12 said:
It's still important to avoid claiming Crawley is their medical advisor if there isn't any evidence this is true. Best to just point to the facts.
Click to expand...
Fair point. But has EC officially resigned from AYME as medical adviser. If AFME merged with AYME then usually they transfer over all components unless they have severed links with EC.

Have we seen any statement that merged AFME have nothing to do with EC as an adviser/associate/consultant who is medical (not medical adviser)?
 
Y

Yogi

Senior Member
Messages
1,132
slysaint said:
AT LAST;
some media attention (local really seems the way to go):
http://www.devonlive.com/senior-dev...f-conference/story-30340505-detail/story.html

Senior Devon doctors apologise for offensive name of conference
Comments (0)
Senior Devon doctors holding a conference in Exeter have been forced to issue an apology after apparently branding sick children 'Muppets'.

South West Paediatric Club is holding a conference today which it originally titled 'A day with the MUPP(ET)S'.

MUPPS is short for Medically Unexplained Persistent Physical Symptoms. The organisers of the event at the Royal Devon and Exeter Hospital issued an apology after a large number of complaints.

They said: "The SWPC is extremely sorry for the offence caused by the original title we gave our conference on medically unexplained conditions today.

"This was wholly unintentional and something we very much regret.

"As an organisation deeply passionate about improving paediatric care we wish to make it absolutely clear that this was in no was our description or view of the children we are proud to care for."

SWPC said the title was a description of the doctors and the challenges they face.

A number of people contacted the SWPC and the venue to complain - both directly and via social media. The RD&E said on social media it would be speaking to the organisers about the event.

Janine Lloyd said she was: "Absolutely disgusted at our sick children being called 'Muppets'." Others tweeted 'shame' or 'unbelievable' among dozens of messages.

The hospital issued a standard response to tweets at its account and retweeted the apology from the SWPC.

According to the NHS, medically unexplained symptoms account for up to a fifth of all cases seen by GPs.

The NHS website reads: "Many people have persistent physical complaints, such as dizziness or pain, that don't appear to be symptoms of a medical condition.

"These type of symptoms are sometimes known as "medically unexplained symptoms" or "functional symptoms" when they last for more than a few weeks, but doctors can't find a problem with the body that may be the cause.

"This doesn't mean the symptoms are faked or "all in the head" – they're real and can affect your ability to function properly.

"Not understanding the cause can make them even more distressing and difficult to cope with.

"Medically unexplained symptoms are common, accounting for up to a fifth of all GP consultations in the UK."

Muppet is commonly undesrtood to be an offensive term.

According to Urban Dictionary it is: "an alternative term for idiot or moron. Usually used in the UK to describe someone who is incompetent or gormless. Taken from the name for the popular Jim Henson Puppets."
Click to expand...

No need to log in for comments. Good to time to tell them hollow apology as they refer to ME/CFS (neurological recognised by WHO) as MUPS, and all sorts of false labels.
 
A

Ambrosia_angel

Senior Member
Messages
544
Location
England
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Yogi said:
Fair point. But has EC officially resigned from AYME as medical adviser. If AFME merged with AYME then usually they transfer over all components unless they have severed links with EC.

Have we seen any statement that merged AFME have nothing to do with EC as an adviser/associate/consultant who is medical (not medical adviser)?
Click to expand...
https://www.actionforme.org.uk/uploads/images/2017/03/childrens-services-team-launch-faq-updated.pdf
Screen Shot 2017-05-18 at 14.29.52.png

is their statement on medical advisers. I seem to recall seeing them being asked about Crawley on their Facebook page when the news came out and, from memory, they said that she wouldn't be joining AfME.
 
Y

Yogi

Senior Member
Messages
1,132
AndyPR said:
https://www.actionforme.org.uk/uploads/images/2017/03/childrens-services-team-launch-faq-updated.pdf
View attachment 21291
is their statement on medical advisers. I seem to recall seeing them being asked about Crawley on their Facebook page when the news came out and, from memory, they said that she wouldn't be joining AfME.
Click to expand...
Thanks for that confirmation. Appreciated.

Why is it I still don't fully believe it though? Maybe that is what they say officially but there is too much of an incestous relationship with these parties.
 
Esther12

Esther12

Senior Member
Messages
13,774
Yogi said:
Fair point. But has EC officially resigned from AYME as medical adviser. If AFME merged with AYME then usually they transfer over all components unless they have severed links with EC.

Have we seen any statement that merged AFME have nothing to do with EC as an adviser/associate/consultant who is medical (not medical adviser)?
Click to expand...

edit: Just realised AndyPR already addressed this much better than I!

They have stated that she has not become a medical advisor.

They are still funding that research study, and working on MEGA with her though. I have a lot of concern about AfME's links with Crawley, just want to avoid ever going too far with them.
 
dangermouse

dangermouse

Senior Member
Messages
430
Ysabelle-S said:
The SW Paediatrician's Club Twitter account. They have tweeted the odd thing from the event today. They are actually recommending that ridiculous book by O'Sullivan.

https://twitter.com/i/web/status/865140418589143040

https://twitter.com/SWPaedsClub
Click to expand...

OMG! Just OMG!

What the hell is going on when "so called" health professionals are recommending books of this ilk!

This is just getting to be ridiculous.

By the way, well done and huge thanks to everyone who has used precious energy to contact organisations and get on social media about this latest, shameful, scandal.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Yogi said:
Fair point. But has EC officially resigned from AYME as medical adviser. If AFME merged with AYME then usually they transfer over all components unless they have severed links with EC.

Have we seen any statement that merged AFME have nothing to do with EC as an adviser/associate/consultant who is medical (not medical adviser)?
Click to expand...

Also minuted at Forward-ME March 2017 meeting:

http://www.meresearch.org.uk/news/forward-me-group-minues/

Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 14 March 2017, 2.00 pm

(...)

Any other business
  1. AfME and AYME. The Chairman referred to an e-mail sent round that morning by Clare Ogden. Not all members had seen it yet. Clare explained that AYME would be closing and AFME would launch a children’s service. It was important to note that AfME did not recommend types of medical treatment, but rather provided information from published research and patient surveys to allow people affected by ME to make informed decisions. AfME’s medical advisers would remain unchanged.
 
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