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

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I don't know why I was nice enough to think that the OP was making a joke about the speakers. I can't believe that their actually mocking children. We are the only group that cannot even demand a basic level of respect from them.

muppet
ˈmʌpɪt/
noun
BRITISHinformal
noun: muppet; plural noun: muppets
1. an incompetent or foolish person.



How can this be considered appropriate in any medical situation.
 

Daisymay

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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.
Excellent comments Jenny, thanks for doing that. I'm very glad to hear of the action that is being taken.
 

trishrhymes

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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 think something is classed as a hate crime if the recipient feels demeaned, insulted etc. People who use insulting terms about disabled people should not and cannot be allowed to get away with saying their intention was humorous. It's the effect on the victim that matters.

I feel the use of the word muppets is offensive both because its dictionary definition 'stupid and ignorant' should never be used about sick or disabled people, and because the fact that doctors, of all people, should think it appropriate suggests complete disrespect for sufferers.

I am also concerned that the whole tenor of the conference, lumping together various physical illnesses like ME, POTS and EDS under the MUS title shows they are still pushing their BPS agenda. Deeply worrying.
 

Yogi

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Someone has posted the MUPPETs poster on the Royal Devon and Exeter facebook page and commented, I have also commented, can anyone with a facebook account please add comments and like

https://www.facebook.com/pages/Roya...ndation-Trust/367990876670285?hc_location=ufi

@Countrygirl

comments from their facebook page

Helen Richardson This is appalling. An explanation is required immediately, I have contacted my MP and the GMC. How dare you?
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1
· 41 mins

Denise Nevill
Is M.E now a MUS?
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· Reply · 33 mins

Rhi Morgan
This is quite possibly the sickest thing on the agenda
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· Reply · 19 mins

Molly Morriss
I am shocked by this on a number of levels. Firstly it is an appalling choice of names MUPPETs; derogatory, ridiculing and mocking, it certainly does not give the impression of taking these illnesses seriously, which is what is needed as there is a great deal of prejudice within the NHS and the RD&E towards patients with ME and other conditions listed in this programme. Secondly, ME / CFS is defined by the WHO as a nuerological condition and recognised by the UK government as such. It is classed by the Institute of Medicine as a" serious and debilitating condition which causes significant impairment and disability", "a complex, multi-system and often devastating disorder" they conclude that it is biological, NOT psychological in nature and that suffers are often stigmatised by health practitioners who are misinformed and uneducated as to the reality and nature of this disease. It is also classed as a disability in this country and as someone who suffers from this disability, I view the the title as discriminatory and prejudice, ridiculing and dismissing me and others suffering from this disability, precisely because of the disability we suffer from. Thirdly I expect a lot better from the RD&E. This is extremely poor science and poor practice, based on a purely invented belief system not on scientific evidence. There is now so much scientific evidence as to the biological nature or ME, POTS, and EDS that is continually ignored while these misleading outdated views are continually perpetuated. I was so appalled by the outdated and prejudiced treatment I received at the RD&E that I won't be returning. The RD&E is very quickly getting a reputation and one of the worsed and outdated in terms of their understanding and treatment of these conditions. Shame on you for allowing this to take place on your watch.
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· Reply · Just now
This unofficial Page was created because people on Facebook have shown interest in this place or business. It isn't affiliated with or endorsed by anyone associated with Royal Devon and Exeter NHS Foundation Trust.
 
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Daisymay

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Yogi

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AFME and their faux concern. This is all public relations by AFME. AFME also hold this belief but would not say it so bluntly in public.

AFME's medical advisor is EC and AFME fund EC. AFME pay lip service to WHO neurological code.

These are empty words by AFME.





Action for M.E.
4 mins ·
A paediatrics conference hosted today by Royal Devon and Exeter NHS Foundation Trust has been given the title "A Day with the MUPP(ET)S – Medically Unexplained Physical, Psychological Symptoms."

We find it insensitive, offensive and completely unacceptable that children affected by conditions including M.E. be referred to in this way. We are contacting the Trust this morning to highlight our concerns, and to offer to work with the team there to support them to better understand M.E. and its impact. It is clear that M.E. should not be categorised as “medically unexplained symptoms” and that doing so contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
Shame on Esther Crawley and shame on AFME.
 

trishrhymes

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They won't end up in the right place. Maybe they will...after we and all the children with ME are dead.

I am being serious.
I agree, I was commending the action, not the motivation or the organisation.

If you're on facebook, it might be worth going in and commenting. Here's what I said:

'Thank you. A step in the right direction, and demonstrates that AfME can take prompt action.

Which makes it even harder to understand why you took so long to decide about signing a letter asking for the PACE recovery paper to be retracted (and then caved in and refused).

And I'd like to see swift action condemning Esther Crawley's disgraceful public slurs on patients and scientists who seek open data, and on David Tuller, and equally swift and decisive action to distance AfME from Stephen Holgate's, and by inference, the CMRC's support for Dr Crawley's unacceptable behaviour.

You have now demonstrated that AfME can act fast in the interests of patients. I hope for more swift action in support of patients' rights in future.'
 

slysaint

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AFME's medical advisor is EC
that is incorrect
"In October 2015, we appointed Prof Julia Newton and Dr Gregor Purdie to the shared role of our Medical Adviser".
EC was medical Adviser to AYME.

But they[AfME] do obviously support EC.......which again raises the question about her attendence/complicitness in this MUPs day (she can't claim she didn't know what it was going to be about).
Again AfME are overlooking this aspect of her 'work'.
 

Yogi

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The inconsistencies with this one are breathtaking.

http://forums.phoenixrising.me/inde...d-pace-16th-may-2017.51498/page-2#post-850203


Duh...:bang-head::bang-head:

AFME are only taking action now because it is words whilst keeping in place the underlying long term policy of relabelling ME as all sorts of mental illness such as MUPS, PUPS etc.

Remember it is only words .

Sticks and stones (CBT and GET and false mental diagnoses and forced treatments) may break my bones, but words will never break me.

Look at the big picture.
 
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Solstice

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I think something is classed as a hate crime if the recipient feels demeaned, insulted etc. People who use insulting terms about disabled people should not and cannot be allowed to get away with saying their intention was humorous. It's the effect on the victim that matters.
So we should be able to sue EC directly too for her slides about us?
 

Yogi

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that is incorrect
"In October 2015, we appointed Prof Julia Newton and Dr Gregor Purdie to the shared role of our Medical Adviser".
EC was medical Adviser to AYME.

But they[AfME] do obviously support EC.......which again raises the question about her attendence/complicitness in this MUPs day (she can't claim she didn't know what it was going to be about).
Again AfME are overlooking this aspect of her 'work'.
EC is AYME's medical adviser. AYME do not exist as now part of AFME children group.

Therefore she is AFME's medical adviser.
 

Molly98

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AFME are not going to change overnight, and I am serious pissed at them for not signing the letter. However. In this instance, they are taking the right action and I am pleased that they are, and I for one will be asking them what exactly has been done, what are they doing, going to be doing to re-educate such people. This is one occasion where the MEA, AFME and Tymes Trust are all acting together to complain on behalf of ME patients. I am pleased about that, because it is truly disgusting.

Like I say I want to see what action is taken though. Just as I criticise them for bad decisions I would like to praise their good decision. There is a long way to go in many areas but this is better than I had hoped for after seeing Sonia's tweets last night.