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

[Molly98]

I'm so shocked I can hardly breathe.

How can it ever be ethical to make such a crass insulting joke about sick and disabled kids.

Muppets - dictionary definition 'an incompetent or foolish person'.

And this is being advertised by an organisation for people working with children with special educational needs.

Can anyone in the local area alert this organisation to the reality of EC and her poisonous views and bad science? Maybe send them copies of the slides from the recent renal association talk, and explain the misuse of photos, insult to patients, scientists, David Tuller etc. Maybe wait for the MEA response to this later this week and use it if appropriate.

@Countrygirl , @Molly98 ?

I notice she's not even pretending it's about CFS now, just 'chronic fatigue'.

Edit: I've just looked at the flyer more carefully. It's not EC who came up with the title MUPPETS, it's the organisation running the day. WTF.

@trishrhymes I have just seen this on Twitter and sent to @Countrygirl , I too am in shock, absolutely livid. It is disgusting. When my brain has calmed down a bit I will respond some more but I am fuckin furious at the moment.

 

[JoanDublin]

We so need someone to attend this.

I guess it has to be someone with a medical qualification. Does anyone know for certain?

From Yogis post above

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

 

[Mohawk1995]

I suspect they are all firmly in the BPS camp already and probably her biggest fans.

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.

I come from a different school in which I do consider all of these factors, but then I examine in ways that focuses first on identifying biological factors and then treating the patient within the context of acknowledging that they are a real person with emotions and relationships. This "camp" seeks to label everything as primary Pscychological/Psychiatric. That is a grave error in treating ME from what what I have seen and heard on PR and other resources.

 

[slysaint]

I have just seen this on Twitter

I was just about to ask if anyone could monitor twitter and FB tomorrow. And if there are any slides....save them.

 

[Mohawk1995]

I agree this is shocking! I am but a lowly Physical Therapist and my wife a pediatric Occupational Therapist, but I can tell you I am deeply disturbed by the use of MUPP(ET)S in the conference title.

Although I am an American, my chief studies reach back to British Physician James Cyriax who is likely spinning in his grave at this very moment!

 

[Molly98]

Are there a small group who could volunteer to draft a letter of complaint this evening to email to the chair? If there are any parents as well who object to this and the use of the term MUPPETS and ME and POTs being classed as MUS that may give it more weight. I am going to struggle to do this as I am having real problems with my eyes at the mo and reading etc

 

[SamanthaJ]

As they list POTS and EDS as MUPS too (a first?), is it worth flagging this up to POTS UK and EDS UK?

ETA: Just sent them both messages, but I'm not on Facebook or Twitter. They might see this more quickly via social media, if anyone's up to it. Also, their members will see it. I quoted this paragraph:

“A day with the MUPP(ET)S” - a study day on the Medically Unexplained Persistent Physical Symptoms.
Thursday May 18th, 09.30-16.30 at the RILD lecture theatre, Royal Devon and Exeter NHS Foundation Trust
We will be covering topics such as Chronic pain, Chronic fatigue, Ehlers Danlos and POTS, with speakers including Dr Hannah Connell, Clinical lead and psychologist for Bath paediatric chronic pain service, and Dr Rory Conn, Liaison Psychiatrist from London. Our open forum discussion sessions will highlight pilot schemes in the area and will allow for case discussions brought in by clinicians and allied health professionals form around the region.

 

[dangermouse]

So, am I right in thinking that anyone who has unexplained symptoms is now considered to be a muppet!

A muppet!

I do hope this makes it to the media, I really do think the general public need to be aware of what is developing in our health service.

 

[trishrhymes]

So, am I right in thinking that anyone who has unexplained symptoms is now considered to be a muppet!

A muppet!

I do hope this makes it to the media, I really do think the general public need to be aware of what is developing in our health service.

I'd be wary of this. Think what yuppie flu did to us...

 

[slysaint]

@Countrygirl @Molly98 @trishrhymes or anyone else:
maybe contact the local papers
http://www.theexeterdaily.co.uk/how-to-contribute
on this paper you can actually write an article online

http://www.devonlive.com/contact.html
devonlive contact details including requesting attendance to an event

bbc news contact:
http://www.bbc.co.uk/news/20039682

 

[Countrygirl]

@Countrygirl @Molly98 @trishrhymes or anyone else:
maybe contact the local papers
http://www.theexeterdaily.co.uk/how-to-contribute
on this paper you can actually write an article online

http://www.devonlive.com/contact.html
devonlive contact details including requesting attendance to an event

bbc news contact:
http://www.bbc.co.uk/news/20039682

Good finds @slysaint

Molly and I have been on the phone.................................

 

[Jenny TipsforME]

I'd be wary of this. Think what yuppie flu did to us...

Yes we need to be very careful what we do with this. There's a danger in amplifying this. I tweeted about it as a knee jerk response. Perhaps not a good idea?

But I do think others would also think that this is in very bad taste. Almost showing contempt for very sick children. Official complaints seem like a good approach. If I was a decision maker I'd get all of them struck off!

I'm also having a physical stress/anger response to this one.

find it very disturbing that the concept of BPS is now associated with this camp. I think their camp is really the BPS camp.

I think BPS does now belong to them, the meaning has changed. I know what you mean. It was a different thing when I was at uni. One slight way to undermine it is to refer to them as psychosocial and drop the bio (this is more accurate, they don't make a serious attempt to include the bio)

Are there a small group who could volunteer to draft a letter of complaint this evening to email to the chair?

I've asked others on ME Action Network UK. It's a bad time though, probably too much MillionsMissing PEM going around...

 

[Countrygirl]

And just for the record............it is this hospital where, when I was taken in with cardiac problems, I was told by a doctor:

'When the staff discover that you have a diagnosis of ME, you won't be treated kindly'. (direct quote)

Local GP: 'My colleagues regard people with ME with even more contempt than we do people with depression'.

Fertile territory for EC to plant her contemptuous views of patients.

 

[trishrhymes]

I think a letter of protest to the organisation and all the speakers could be written after the event. Never too late. If anyone wants to start on I might manage to join in in the next few days. Not tonight though. I'm all out of good manners.

 

[dangermouse]

I'd be wary of this. Think what yuppie flu did to us...

Yes, that's true.

 

[SamanthaJ]

Just occurred to me - that maybe they've been calling us muppets for while, it's probably already a doctors' in-joke?

 

[Ysabelle-S]

Just collect everything they do, all the disrespectful comments, names, slides, etc, because the file of abusive attitudes against ME sufferers and other patients in the likes of FM, etc, is getting thicker by the day.

 

[Ysabelle-S]

Just occurred to me - that maybe they've been calling us muppets for while, it's probably already a doctors' in-joke?

It's another example of projection. I mean, who are the real muppets here? They think they know more than the WHO, and real biomedical researchers. That's a perfect example of muppetry, just as they are the heart sink doctors, and the revolving doors (because they send patients back out untreated, etc).

 

[Ysabelle-S]

I think a letter of protest to the organisation and all the speakers could be written after the event. Never too late. If anyone wants to start on I might manage to join in in the next few days. Not tonight though. I'm all out of good manners.

Other illness groups named should probably be contacted and informed. Some people here might be members of relevant patient groups for those other conditions, considering some of those illnesses are often co-morbid with ME.

 

[Yogi]

Just collect everything they do, all the disrespectful comments, names, slides, etc, because the file of abusive attitudes against ME sufferers and other patients in the likes of FM, etc, is getting thicker by the day.

Agreed. Collect all the evidence. They only way to deal with this if we become strategic.

1. Archive it so it is not deleted on webarchive. Take a local copy also.

https://web.archive.org

2. Then put on MEPedia.

http://me-pedia.org/wiki/Welcome_to_MEpedia

Then action can be taken by advocates.. But only with all the evidence collated.

No point just discussing it on its own.