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

[Ysabelle-S]

http://forums.phoenixrising.me/inde...he-mupp-ets-and-more.51518/page-9#post-851262
Was this.
"Replying to @SWPaedsClub @roryconn
Sadly true. We spend a lot more time learning how to Ix / Tx organic pathology than what to do if no organic problem" with a simon W quote (image in above post)

Yes. That one. There's also another one I posted that's been deleted. You'd think they'd stand by their tweets if they're so confident of their position.

 

[user9876]

Here's everything I tweeted before I was blocked:

They have blocked me now. I pointed out one tweet was offensive and blamed patients and asked for the evidence for other statements.

For an organization that has been reported to the police for hate speech against disabled people who issued an official apology they are not very apologetic. This would be a chance for them to have a dialog with patients and put their point of view and support it with evidence (ok there is none but if they are teaching it they should have some!). But instead they block people questioning their approach.

 

[Esther12]

My partner has a load of these tweets open still - if we want copies of any specific ones let me know and I'll check if they're available then try to find a way to post a copy.

 

[Ysabelle-S]

My partner has a load of these tweets open still - if we want copies of any specific ones let me know and I'll check if they're available then try to find a way to post a copy.

Get all the ones they can get. I'd be interested to know who pulled the tweets. One was the Wessely tweet. I have the image of the slide only, but don't remember who tweeted it.

 

[dangermouse]

This answer is really very thin. Would a meeting on hypothyroidism have been billed ' A Day with the Cretins' (cretin is the official medical term for congenital hypothyroidism) or a meeting on learning difficulties A Day with the Morons'. Even if this is lighthearted self-deprecation it says something very telling about the seriousness with which these doctors treat what they call MUS.

I do not think it is unreasonable to inform the police. This is well within the remit of discrimination acts.

I am appalled, yet again.

And I would seriously question whether this material should be considered valid for professional training. Nobody knows what the best way of dealing with any of these problems is and yet the slides give clear advice on what to do. It is simple quackery. Decide what you think ought to be good treatment and then tell your friends how good it is, without any evidence.

Maybe Dr Dave Bartle would do well to spend a few evenings perusing Phoenix Rising threads to get an idea of the intelligent reasonable critique they provide in contrast to the flannel he has at his meetings. Sometimes I wish I did twitter but mostly I am thankful I do not.

Very well said.

 

[Valentijn]

http://www.swpc.org.uk/about.htm

http://www.swpc.org.uk/membership.htm

Constitution:

http://www.swpc.org.uk/constitution.pdf

Hrm, no mention there of when or why they decided to become an anti-patient hate group

 

[lilpink]

This answer is really very thin. Would a meeting on hypothyroidism have been billed ' A Day with the Cretins' (cretin is the official medical term for congenital hypothyroidism) or a meeting on learning difficulties A Day with the Morons'. Even if this is lighthearted self-deprecation it says something very telling about the seriousness with which these doctors treat what they call MUS.

You have to remember that they are being led by people who think it's ok to say that MUS patients made a GPs stomach churn-

http://primarycarekeele.blogspot.co.uk/2017/02/mus-guidelines.html#!/2017/02/mus-guidelines.html

 

[Jenny TipsforME]

Were you ever a teacher @Jenny TipsforME ?

Yes I did use to teach! Does it show?
Not the smartest move as I already had ME.

 

[trishrhymes]

Yes I did use to teach! Does it show?
Not the smartest move as I already had ME.

snap

 

[trishrhymes]

If you want to really annoy the shit out of them, rewrite your tweets and add in the hashtag #swpc on every one of them. That way anyone looking up that hashtag for information will see them. You might like to add in a tweet at the start that you are rewriting a series of tweets as @SWPaedsClub blocked you for tweeting earlier.....

Good idea. Not tonight though. Energy quota used up. Maybe tomorrow if PEM doesn't kick in after today's activity. Funny (not) how lying in bed tweeting is exhausting.

 

[Molly98]

Yes I did use to teach! Does it show?
Not the smartest move as I already had ME.

It's just all 3 of us who got band by the paeds were former teachers, hardly the criminal bunch EC like to paint us as. They obviously don't like teachers in their club. Might make good media story some day.

 

[Esther12]

Get all the ones they can get. I'd be interested to know who pulled the tweets. One was the Wessely tweet. I have the image of the slide only, but don't remember who tweeted it.

I took a copy of that one. There are loads! I guess it will only take twenty minutes if I get in the swing.

 

[Robert 1973]

Maybe Dr Dave Bartle would do well to spend a few evenings perusing Phoenix Rising threads to get an idea of the intelligent reasonable critique they provide in contrast to the flannel he has at his meetings. Sometimes I wish I did twitter but mostly I am thankful I do not.

Don't worry, your comments are well reported, and appreciated, on Twitter.

 

[charles shepherd]

This morning I sent the following communication to Dr Stella Imong - because she was (incorrectly) listed as the President of the South West Paediatric Club on their website

Dear Dr Imong

I am writing to you in your capacity as President of the South West Paediatric Club

Having seen the details of your study day - with the title A Day with the MUPP(ET)S - on the internet, a number of our members are contacting The ME Association to say that they find the title, which I assume was used to create interest and amusement, to be unprofessional and insulting to children with unexplained medical symptoms, as well as to children and adolescents with ME/CFS, which is one of the subjects being covered

As I am sure you are aware, the dictionary definition of a MUPPET is quite derogatory: An alternative term for an idiot or moron. Usually used in the UK to describe someone who is incompetent or gormless.

So I have to agree that this is a highly inappropriate and disrespectful title to use for a study day covering what is a very sensitive medical subject

Using the term MUPPET clearly implies to the patient community that these sort of symptoms are being trivialised and even laughed at by the medical profession

I hope you will accept that a serious error of judgement has been made here and that an apology is therefore called for
Regards

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Website: www.meassociation.org.uk

It then emerged that the website information was incorrect and Dr Imong is no longer President

However, she informed me that our communication had been forwarded to the correct person for action

We have now received the following communication from Dr Imong

I would like to say how very sorry I am that this has happened.

Having had many emails today I realise that many people have been very upset by the title of the meeting and I know that the officers have apologised although I am aware that this is not enough for some of you.

However I would also like you to know that I have not been president of this club for two years as I retired and am now working part time.

The website has not been updated and until today I was not aware of this.

Please could you not address any further emails to me.

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

 

[Large Donner]

Having had many emails today I realise that many people have been very upset by the title of the meeting and I know that the officers have apologised although I am aware that this is not enough for some of you.

@charles shepherd

People really need to grasp that its not just the title of the meeting its the outright lies deception and scientiifc fraud that was the content of the meeting.

Please can you make this clear and outline it in detail within your further correspondence with the SWPC.

Secondly, surely now Esther Crawleys position within the CMRC is untenable and have you taken this up with Steven Holgate?

 

[me/cfs 27931]

 

[trishrhymes]

Thank you @charles shepherd.

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

At the moment we are reduced to the highly unsatisfactory method of trying to say what we want to in 140 characters on twitter and being blocked.

The website has contact details for their secretary. I guess we could contact him. Though that might be out of date too.

Honorary Secretary:-

Dr Miles Wagstaff
c/o Neonatal Unit
Gloucestershire Royal Hospital Gloucester
GL1 3NN.
Miles.Wagstaff@glos.nhs.uk

The apology on twitter came from Dr David Bartle. I looked him up. He's a consultant paediatrician at Royal Devon and Exeter hospital specialising in neonatal paediatrics, so probably not very engaged with MUS. I notice on their list of paediatricians there are a couple who list MUS among their specialisms.

 

[Starlight]

I recall mention of a book called "the body keeps the score" in one of the tweets today.i have been reading this recently,I haven't fully finished it yet.. I t is really good,deals with p.t.s.d.,deep seated behavioural problems and psychological problems. It is easy to read and written from a really compassionate point of view.. It wouldn't have any relevance to a child or adult suffering from ME/CFS ANY more than it would to someone suffering from diabetes. This is a groundbreaking book in its field and hailed as such but irrelevant in this context. I think it is worth checking out these references for relevance and also to ensure parents and patients do not feel threatened by them.

 

[NelliePledge]

Prof Rona Moss-Moris is National Advisor to the department of Health for IAPT for LTC/MUS.

 

[Jan]

https://twitter.com/i/web/status/865226335320453120