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

A

altered beast

Messages
24
So they would have us believe that the muppets "joke" was intended to be on the doctors attending!

Really!! Or just maybe...
Sticker_81_smile.jpg
 
A

ash0787

Senior Member
Messages
308
they are just mad because they couldn't become a real doctor so they had to become a psych instead, and not even one that can do something useful like help people with shizophrenia or something, instead they go for something 'unexplained', if its not well understood theres nothing to study and then they can just make stuff up as they go along
 
suseq

suseq

Messages
66
user9876 said:
I think they view unexplained as being the patients fault rather than a gap in medical knowledge. Hence the view that patients just need to think differently and stop bothering doctors.
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Agree - this is the disingenuous view that is being relayed - and the concerning wider agenda is to psychologise the treatment of illness in general so that welfare and insurance benefits can effectively be limited or denied.

What needs to be made clear is that 'medically unexplained' and any other label is simply ignorance.
 
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trishrhymes

trishrhymes

Senior Member
Messages
2,158
Hi all, I looked this morning at the SW Paeds Club twitter page on my daughter's twitter, since I'm blocked and can't see them.

Seems they have removed all tweets they posted that anyone commented on, and blocked all commenters.

From our experience yesterday it seems this started happening during Esther Crawley's talk. I can just imagine what she was telling them. Such a pity they did the same knee jerk reaction as the Renal conference tweeter a few weeks ago.

I've put a few responses to the 'apology' tweet. That hasn't been taken down yet, and I haven't been blocked yet.

I also came across a group photo of some of the people at the conference, so sent them a few informative tweets about ME too.

I'll be interested to see what happens.

I'm being scrupulously polite and informative.

I suspect I'll simply be ignored.
 
suffolkres

suffolkres

Messages
17
trishrhymes said:
Thank you @charles shepherd.

I note Dr Imong doesn't tell us who to contact instead.

This is "the man"...........

……from our new President SWPC: Address and close of meeting May 2016
Dr Huw Thomas, Consultant Paediatrician, University of Bristol NHS Foundation Trust

(South West Paediatric Club
Learning from Global Health Challenges
Monday 9 May 2016
Lydiard House Conference Centre, Swindon

President SWPC: Address and close of meeting
Dr Huw Thomas, Consultant Paediatrician, University of Bristol NHS Foundation Trust)

Apology issued, but unfortunately, damage done and cache version still exists...

http://webcache.googleusercontent.c...tm+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b
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Jo Best

Jo Best

Senior Member
Messages
1,032
charles shepherd said:
I will be forwarding all emails received to the ME association tomorrow and have forwarded all emails also to the officers of the club for them to respond.

Dr Stella Imong

I think this is a genuine apology from a doctor who does not want to be associated with what has happened today

CS
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Did she mean "by"? I would be furious if my private email to her was forwarded to any organisation or person other than those representing the intended recipient or those responsible for the cause of my complaint.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Jo Best said:
Did she mean "by"? I would be furious if my private email to her was forwarded to any organisation or person other than those representing the intended recipient or those responsible for the cause of my complaint.
Click to expand...

I noticed that too. Does she mean any e-mails sent to her about the conference will be forwarded to the MEA? How odd. They are addressed to her, and by implication to her organisation, not to the MEA.
@charles shepherd, can you enlighten us.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
My concern in all this is not to criticise busy paedatricians who are being sold a lot of bunkum and swallowing it uncritically.

My concern is to educate them.

Twitter is a crap medium for trying to do that. I've had a brainwave.

@charles shepherd, if I were to trawl through all the health trusts in the SW area covered by the conference yesterday and look up which of their consultant paediatricians are listed as having an interest in MUS, and send the MEA a list of names and addresses, would the MEA be able to send them all (say 2 per trust) a copy of the purple book?

I would suggest sending it with a covering letter saying something like 'Dr Crawley will not have had time in her lecture to cover all the latest research developments in ME/CFS. We have been asked to send you a copy of our book to give you and your colleagues a more comprehensive view of the most up to date information.'

Edit - see later posts - decided this is too expensive and probably wasteful as most may not read it. Need more targeted approach, perhaps starting with a letter.
 
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Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@trishrhymes love this idea of sending them the MEA purple book just as further information!

@charles shepherd how many paediatricians do you think there are in the SW of England? Over 100 seems a lot to attend. Surely this must be at least someone from every paediatric unit, probably quite a few from the Bristol Children's Hospital? You might not even need to check which departments have an interest in MUS @trishrhymes
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
trishrhymes said:
Hi all, I looked this morning at the SW Paeds Club twitter page on my daughter's twitter, since I'm blocked and can't see them.

Seems they have removed all tweets they posted that anyone commented on, and blocked all commenters.

From our experience yesterday it seems this started happening during Esther Crawley's talk. I can just imagine what she was telling them. Such a pity they did the same knee jerk reaction as the Renal conference tweeter a few weeks ago.

I've put a few responses to the 'apology' tweet. That hasn't been taken down yet, and I haven't been blocked yet.

I also came across a group photo of some of the people at the conference, so sent them a few informative tweets about ME too.

I'll be interested to see what happens.

I'm being scrupulously polite and informative.

I suspect I'll simply be ignored.
Click to expand...

Was that the tweet that said: 'Learnt lots about MUS'? And had a bunch of women together, laughing? Funny how it's possible to learn lots about something that doesn't exist. I seriously wonder what kind of training these people have had, or what happened to their critical faculties.
 
Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
Hi all, just to let you know that AfME have been responding to me on the FB post about this, don't know how to do a screen shot but I'm Olivia. They replied to my comment from yesterday or the day before, (sorry time is wibbly) an hour ago about the EC trial they are funding, saying it was voted for by members. I feel I should continue the dialogue because they are still engaging, but I'm foggy!
I'll check back later
 
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