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

[slysaint]

Has ANYONE on Twitter or FB pointed out that Esther Crawley is the key speaker at this event?

 

[Countrygirl]

Message from the RDE EXETER re MUPPETS:

A response on behalf of the Royal Devon and Exeter NHS Foundation Trust: Thank you all for raising this issue. We are taking this up directly with the South West Paediatric Club who have organised this event today

 

[Countrygirl]

Message from Charles:

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

ME Association
MEASSOCIATION.ORG.UK

 

[Robert 1973]

Has ANYONE on Twitter or FB pointed out that Esther Crawley is the key speaker at this event?

https://twitter.com/i/web/status/865094182553223168

 

[Countrygirl]

Reply to Charles:

Reply from Dr Imong:
Dear Charles, I am no longer president of this club and have not been for a long time. I am not sure who is and I have had nothing to do with this meeting.

I will forward your email on to someone who may be able to help.

Stella Imong

 

[Binkie4]

There are many comments on the AfME fb page including several pointing out the link with EC.

I think the more pressure that can be put on AfME, the more difficult it MAY be for them to continue working with EC. They are *saying* more of the right things: now they need to walk the talk.

Give EC enough rope etc etc........

 

[Yogi]

https://www.actionforme.org.uk/news/paediatric-conference-today-sharing-our-concerns

Paediatric conference today: sharing our concerns
May 18, 2017

A paediatrics conference hosted today by Royal Devon and Exeter NHS Foundation Trust's South West Paediatric Club 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. Our Chief Executive, Sonya Chowdhury, has sent the following email to the Trust's Chief Executive, Suzanne Tracey:

It is enormously encouraging to note the Trust’s commitment, via the South West Paediatric Club, to develop clinical skills and best practice around CFS/M.E. and other conditions that have a serious impact on children and young people.

However, as Chief Executive of the UK’s largest charity for children, families and adults with CFS/M.E., I must raise a number of concerns about this event, the most pressing being its insensitive and frankly offensive title.

While I am sure it was not the intention of the Club to cause distress to the parents of children affected by CFS/M.E., my team and I have been contacted by many who are very upset by the use of this inappropriate acronym. One said: “No wonder we struggle to get proper medical care for our children when this is the attitude of the professionals.”

I am also deeply concerned by the inclusion of CFS/M.E. under the “Medically Unexplained Symptoms” banner, and the impact that we beginning to see on people with M.E. as a result of this. We know a number of patients are being challenged by their healthcare professional as to the validity of their M.E. diagnosis, and instead being told that they have MUS.

M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition. In addition, the NICE guideline for CFS/M.E. makes it clear that specialist services are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases.

Action for M.E. is undertaking a programme of work to increase the knowledge and understanding of primary healthcare professionals. I wonder if I might set up a call with you to discuss how we could work together to support Royal Devon and Exeter NHS Foundation Trust and South West Paediatric Club to improve outcomes for children, families and adults with M.E.?"

We will update this page with any developments on this matter.

 

[Yogi]

There are many comments on the AfME fb page including several pointing out the link with EC.

I think the more pressure that can be put on AfME, the more difficult it MAY be for them to continue working with EC. They are *saying* more of the right things: now they need to walk the talk.

Give EC enough rope etc etc........

Should be a superlike button for that

 

[Yogi]

Reminder of this thread about EC and the CMRC and the charity collaborators and action to take as very relevant to the issues here..

http://forums.phoenixrising.me/inde...he-cmrc-support-of-crawley.51479/#post-850304

 

[trishrhymes]

The AfME letter sounds pretty good. I just hope, if the health trust does take up the offer of advice on how to treat ME, they don't end up with Crawley style activity management and FITNET. Given that AfME now includes AYME who are in the pocket of Crawley, I don't hold out much hope.

 

[Yogi]

The AfME letter sounds pretty good. I just hope, if the health trust does take up the offer of advice on how to treat ME, they don't end up with Crawley style activity management and FITNET. Given that AfME now includes AYME who are in the pocket of Crawley, I don't hold out much hope.

sounds good but is it? You hit the nail on the head. the advice and increasing the knowledge for health professionals would come from AFME/AYME's medical adviser who is.............................

.........................

Wait for it

..............

.........................

Prof Esther Crawley.



Circular logic or what.

 

[AndyPR]

Anybody spot a difference.....
Webpage crawled and stored at 9.09am this morning - https://web.archive.org/web/20170518090923/http://www.swpc.org.uk/meetings.htm

and now, screenshot taken at 11:29 this morning - http://www.swpc.org.uk/meetings.htm

The Wayback Machine internet archive can be very useful https://archive.org/web/

 

[Ysabelle-S]

The AfME letter sounds pretty good. I just hope, if the health trust does take up the offer of advice on how to treat ME, they don't end up with Crawley style activity management and FITNET. Given that AfME now includes AYME who are in the pocket of Crawley, I don't hold out much hope.

I don't trust AFME. Particularly as long as Crawley is involved.

 

[Yogi]

Anybody spot a difference.....
Webpage crawled and stored at 9.09am this morning - https://web.archive.org/web/20170518090923/http://www.swpc.org.uk/meetings.htm
View attachment 21286
and now, screenshot taken at 11:29 this morning - http://www.swpc.org.uk/meetings.htm
View attachment 21287

The Wayback Machine internet archive can be very useful https://archive.org/web/

Great. Well done everyone


We need to get into the habit of archiving all the denigration as soon as we see it before they pull it. This should now go in the evidence file for Crawley at MEPedia.

 

[Yogi]

Good momentum on Crawley.

People here and on Facebook and twitter have done a great job. Well done.

"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.

It is not good enough just to remove "ET". These are just letters and words.

The programme should remove Esther Crawley from the schedule. It is the content that is harmful not just the two letters - E and T

She is on in 4 hours. 4 hours to remove her denigration and smear campaign of ME patients in front of other doctors.

15:30

Victor Neale Memorial Lecture:
CFS/ME, what we know and research updates. Professor Esther Crawley, Bristol Children's Hospital

 

[Countrygirl]

Ah! The ETS have been vamooshed!

Now we have A day with the Mupps'........doesn't have the same ring does it? Reminds me more of a day with the squits tbh.

 

[Sean]

We need to get into the habit of archiving all the denigration as soon as we see it before they pull it. This should now go in the evidence file for Crawley at MEPedia.

This. If it is immediately archived at https://archive.org/web/, then they can't hide it, nor claim it was altered by others.

Trap them with their own words.

 

[sarah darwins]

Reply from Dr Imong:

Dear Charles, I am no longer president of this club and have not been for a long time. I am not sure who is and I have had nothing to do with this meeting.

I will forward your email on to someone who may be able to help.

Stella Imong

Jeez. So they can organise a 'Day Out with Esther and the Muppets' but they can't change the name of the president on their own website:


Shambles. And this is just bloody typical of what people with this disease in the UK have to endure — the attentions of these .... muppets less than brilliant people, all duly funded at public expense.

Could we just sack the lot of them — every psych working for the NHS — and employ half the number of counsellors trained by Citizens Advice for the support of those who want it? Use the money saved to fund meaningful research and treatment into ME and other as yet unexplained medical conditions? Could we?

 

[Woolie]

I find it very disturbing that the concept of BPS is now associated with this camp. I think their camp is really the BPS camp. Meaning they are almost completely ignoring the Biological component, completely focusing on the Psychological component and seem apathetic to the social component in finding solutions to the problem of ME.

No, the social component is huge in their minds - its right here on PR, all of us talking each other into having an imaginary illness.

They just don't talk about it much now, cos they realise it loses them votes. They've grown more wily since the 90s.

 

[Ysabelle-S]

In terms of the event today, I predict there will be a lot of eye rolling and veiled references to those tiresome patients - vis-a-vis the name change. They have no self-awareness, blinded by career goals and a sense of overwhelming entitlement and self-importance in their role as self-appointed 'experts'. They are totally out of their depth with the conditions listed. The fact they can put them into a category like this just shows they are paying little to no attention to actual biomedical research. What on earth has happened to medical training? I'm not saying it was ever great, but this level of intellectual laziness and outright smearing of patients indicates a belief that they can act with impunity. That is what is most shocking. Doctors can't be expected to know everything, but this kind of behaviour is indicative of deeply disturbing attitudes and a contempt towards chronically ill and disabled people. We are seeing rampant ableism and rampant dismissal of scientific research because it doesn't suit their own professional agenda. Decent doctors should not expect patients to adapt to their pet theories and professional needs, they should expect their medical theories and practices to be adapted to patient needs.