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Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more
- Thread starter slysaint
- Start date
Result -at least in acknowledging the inappropriate title. Sadly though I imagine this will be discussed at the meeting today as "see what I mean" about these militant difficult patients and their carers trying to thwart progress. I'm heartened by the support shown in the community and fully agree we cannot just ignore this blatant laugh at the expense of patients. It makes it so difficult to trust them with our childrens' care.
Wish they could walk a couple of days in the shoes of people with MUPPS not just a day with the MUPPS- preferably one with a medical appointment in it.
Wish they could walk a couple of days in the shoes of people with MUPPS not just a day with the MUPPS- preferably one with a medical appointment in it.
slysaint
Senior Member
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"Action for M.E. is undertaking a programme of work to increase the knowledge and understanding of primary healthcare professionals".
Maybe include EC in the programme(as a learner) as she clearly needs more knowledge and understanding than anyone.
Molly98
Senior Member
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Yes I know exactly what you mean Trish, after all a vast majority of those complaining have a big problem with Crawley's part in this event today and lumping ME/ CFS under MUS and psychological, and the irony of her, out of everyone giving a lecture on "What we know" and "research updates on ME/CFS", when she blatant ignores all scientific research developments.
Crawley undermines attempts for ME to be taken seriously, again and again. I mean, let's face it if she had an ounce of sensitivity or understanding towards those children she works with she would not be seeing ME as MUS and more importantly she would refuse to speak at an event with such a name and would speak out on behalf of those children and families she works with against such ridicule and prejudice.
EC isn't AfME's medical advisor as far as I can see. On the AfME website it says that Prof Julia Newton & Dr Gregor Purdie are their joint medical advisors. Mary Jane Willows (formerly AYME) is now Head of their Children's Services.
In their research section it shows that they are funding EC for some current research & they are obviously both members of the CMRC.
Ysabelle-S
Highly Vexatious
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They will try to make it all about them, but that is standard behaviour when establishments are challenged over their bad behaviour. They try to play victim, and continue to see their unreasonable behaviour as reasonable, because they live in an echo chamber, and their privileged positions would be threatened if they were ever to admit they were wrong.
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.
slysaint
Senior Member
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Tymes Trust@tymestrust 1h1 hour ago
We have informed The Countess of Mar Chair of ForwardME about the SW Paediatrics Club conference referring to sick children as "MUPP(ET)S".
3 replies 6 retweets 16 likes
We have informed The Countess of Mar Chair of ForwardME about the SW Paediatrics Club conference referring to sick children as "MUPP(ET)S".
3 replies 6 retweets 16 likes
Ysabelle-S
Highly Vexatious
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A nice summation, from Prof Edwards, of the so-called expert giving a talk today at that 'MUPPS' meeting. It comes from the Trial by Error/CMRC thread:
http://forums.phoenixrising.me/inde...for-libelous-crawley.51480/page-7#post-850601
http://forums.phoenixrising.me/inde...for-libelous-crawley.51480/page-7#post-850601
Molly98
Senior Member
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I am hoping that one thing that may come out of this is that organisations may begin to realise what a toxic brand St Esther is and having her speaking causes more trouble and conflict than it is worth. Surely some people must be questioning the discrepancy between the saint-like esteem she is given by her colleagues and the absolute disregard she is held with among patients, researchers and most ME organisations.
Ehlers Danlos uk are now also looking into it
EDS UK@ehlersdanlosuk
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Replying to @mollyandmeuk @UKPoTS @TheEDSociety
Thank you we are looking into this now.
4:12 AM - 18 May 2017
Ehlers Danlos uk are now also looking into it
EDS UK@ehlersdanlosuk
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Replying to @mollyandmeuk @UKPoTS @TheEDSociety
Thank you we are looking into this now.
4:12 AM - 18 May 2017
Thanks a lot Molly - You are a
. Well done for disseminating this to others. FYI- just copy the http link in the browser for the tweet to embed.
Ysabelle-S
Highly Vexatious
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Statement now from the SW Paediatric Club
Please note, they mention 'medically unexplained conditions' three times in this statement, so they are still selling the same old anti-science message. They're just backing down over the name, and making up unconvincing excuses over why they chose to use it:
Please note, they mention 'medically unexplained conditions' three times in this statement, so they are still selling the same old anti-science message. They're just backing down over the name, and making up unconvincing excuses over why they chose to use it:
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I think it is important to complain to the RDE foundation trust as the paediatric club is accountable to them.
Here is the contact info for complaints to the trust:
rde-tr.complaints@nhs.net
+44 (0)1392 402093
If you are well enough to write a short email, please do. Volume of complaints is important.
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Countrygirl
Senior Member
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Lets face it even the MUPP (MUS) or whatever label is offensive and a statement of medical ignorance and that is what they are training people in. It doesn't stand up to scientific scrutiny.
AFME's hypocrisy shown again over the silence over BRS2017 conference:
http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
WHY ARE AFME NOT MAKING A STATEMENT ON THAT CONFERENCE. THEY NEED TO MAKE A STATEMENT ON THIS AS WELL.
http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
WHY ARE AFME NOT MAKING A STATEMENT ON THAT CONFERENCE. THEY NEED TO MAKE A STATEMENT ON THIS AS WELL.
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The difference is very clear and obvious.
One was a misjudgement, probably by a junior medic, who never wanted to be on the committee anyway, and certainly did not want to be responsible for the publicity for the meeting. He or she probably never contemplated that "muppets" would be regarded as anything but a reference to members of the club.
The other wasn't.
One was a misjudgement, probably by a junior medic, who never wanted to be on the committee anyway, and certainly did not want to be responsible for the publicity for the meeting. He or she probably never contemplated that "muppets" would be regarded as anything but a reference to members of the club.
The other wasn't.
This is an unacceptable response. The substance of the talk is the same. It is just PR to placate some of concerns over the two letters E -T.
1. Esther Crawley needs to be removed from this talk given her campaign of smears and denigration of sick and disabled ME patients.
2. No reference to ME or CFS (recognised by WHO in the ICD as neurological) as mental illness or MUPS or MUPPETS should be made.
Otherwise this would be continuing and adding further insult.
What are AFME doing about this? What are SWPC doing about it?
They have 2 hours to make the decision. She speaks at 3:30.
Anyone in contact with Frances Ryan of Guardian???
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Dr David Bartle who is on the schedule:
He will be presenting prizes whilst patients get maligned and smeared just after EC's talk.
Lots of comments. No response to any of them.
Just empty words still.
http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf
1. Esther Crawley needs to be removed from this talk given her campaign of smears and denigration of sick and disabled ME patients.
2. No reference to ME or CFS (recognised by WHO in the ICD as neurological) as mental illness or MUPS or MUPPETS should be made.
He will be presenting prizes whilst patients get maligned and smeared just after EC's talk.
12:00
Lunch and viewing of poster presentations
Chair, afternoon session: Dr Dave Bartle, Royal Devon and Exeter Hospital
16:30
Presentation of Trainee Prizes, Close of day and thanks.
Dr Dave Bartle
Lots of comments. No response to any of them.
Just empty words still.
http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf
1. Esther Crawley needs to be removed from this talk given her campaign of smears and denigration of sick and disabled ME patients.
2. No reference to ME or CFS (recognised by WHO in the ICD as neurological) as mental illness or MUPS or MUPPETS should be made.
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sarah darwins
Senior Member
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- Cornwall, UK
100% bang on the money. The whole concept of MUS (or is it MUPP this week?) bothers me at least as much as the risible 'Muppet' thing.
In fact, I think I'd rather be called a muppet than be told "You have MUS" as though that's actually a thing. I'd rather be insulted than be diagnosed with something from a parallel universe where logic doesn't apply.