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

Chrisb

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I have suspicions that these doctors may be being ironic and referring to themselves as Muppets, not the patients. I must plead guilty to having called them that myself.

I may be wrong. I have been unable to open one of the relevant forms. But it is something to be considered.

It may be that they were just blind to the implications of their use of the term in this context. I have noticed before that there can be a lack of awareness about how words will be perceived by others
 
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that maybe they've been calling us muppets for while, it's probably already a doctors' in-joke?
Yes that's what I thought, it's their term for us which has crept into an official event name.
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.
I'm in some POTS groups. Tomorrow I'll have a think about who to contact. Having POTS and EDS org signatures on a letter would be good as those conditions really are quite well explained!
 

TiredSam

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I have suspicions that these doctors may be being ironic and referring to themselves as Muppets, not the patients. I must plead guilty to having called them that myself.

I may be wrong. I have been unable to open one of the relevant forms. But it is something to be considered.

It may be that they were just blind to the implications of their use of the term in this context. I have noticed before that there can be a lack of awareness about how words will be perceived by others
I think it quite clearly refers to children. Adding "ette" to something is a diminutive. A little case of MUPPS. They've been trying to come up with a decent witty acronym for years, whoever thought of this one must have been so proud.
 

Research 1st

Severe ME, POTS & MCAS.
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Non cultural Marxists can see what's going on here: PACE, FINE, NICE, SMILE, MUPPET.

1)Law abiding citizens framed as fools by alleged 'Scientists' who are nothing more than mind-body theorists MD's.
2)Patients who understand and actively read biological research denigrated in public as 'Anti Science'.
3)People never informed en-mass they cannot donate blood and tissue products if they have ME, PVFS or CFS or develop these conditions during a pregnancy.
4)Innocent people sidelined by socialized health-care policy minsters of propaganda as mentally defective, who aren't, but are actually wise to who is controlling them and destroying their lives through a false narrative.

Have a think why a democratic government would stoop to such behavior by tolerating xenophobic disability hatred (patient shaming) and even awarding this, when all along, these alleged mentally defective patients are deemed a blood product transfusion risk to others by the same country that force feeds the public with anti patient propaganda that these banned blood donors are bad people.

Being serially abused as inferior from something no fault of your own (e.g. sex, race, religion) only makes you stronger, and more determined to see justice in a calm and collected manner.

With technological advances in development and eventual commercialization of NGS assays that detect very low level replicating CNS breaching pathogens leading to eventual autoimmune diseases and a cascade of adverse neurological, inflammatory immuno suppressive and cancer related effects, evidence will emerge of the real situation we are in.

Don't expect an apology, you'll never get one. Do, however, be mindful that your precious exhausted mental energies are worth harvesting in your defective cellular batteries. Eventual justice will be served, and served by Science not acolytes of anti-Science (mind-body theorists) who even go to the lengths of altering the meaning of words: E.g in PACE trial, recovered can be to get worse.

When the eye-mask and ear plugs are taken off, the average joe public is going to be astonished how this abuse of patients with unrecognised immune disease affecting the brain was left to go on for decades, much like the Jimmy Saville BBC situation which was also state approved and also included child abuse.

In that case we had a so called savior of children, harming them and destroying their future lives as adults.

History has a habit of repeating itself when reputations and money is involved, as does the rejection of responsibility.
 

trishrhymes

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On the MEA face book page:

They have put the flyer about the conference on their news feed. Lots of comments, including this:

'I will be sending a formal complaint about the title of this study day to the President of the South West Paediatric Club tomorrow morning. Dr Charles Shepherd - Hon Medical Adviser, MEA'
 

Molly98

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On the MEA face book page:

They have put the flyer about the conference on their news feed. Lots of comments, including this:

'I will be sending a formal complaint about the title of this study day to the President of the South West Paediatric Club tomorrow morning. Dr Charles Shepherd - Hon Medical Adviser, MEA'
:lol: we must be hanging out in the same places @trishrhymes :)
 

SilverbladeTE

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Proves my position that these people are abusive, arrogant, unethical....

Use of such derogatory language towards any ethnic, racial or religious group would get their medical licences stripped and them in court as all their medical asses would have to be reassesses for bias and thus criminal
 
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Binkie4

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In view of the conversation on the other thread, there is an opportunity to ask AfME to act on behalf of patients and obtain an apology from the authorities involved.

There has to be a first time.

Comments and likes have started on their visitor fb page.

ED: does anyone else feel being an ME patient is a full time job in all sorts of ways?
 

user9876

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@charles shepherd is also going to be writing a letter of complaint

From MEA website comments
Charles Shepherd
I will be sending a formal complaint about the title of this study day to the President of the South West Paediatric Club tomorrow morning. Dr Charles Shepherd - Hon Medical Adviser, MEA
I think it would be better to complain to the NHS trust and send a copy to the local MP and even to the local newspaper.
 

Molly98

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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
 
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I am just waiting for an assessment by Exeter paediatrics for my daughter who has chronic pain after a minor injury last year that has escalated into severe unexplained pain . Also son has CFs and has been seen by both Dr street and Dr Crawley who will be at the meeting. Guess we might be a case study ? I would love to be a fly on the wall. I will ask why it was called Muppets when we meet next. I hate this labelling of people they are more than their symptoms and it is very disrespectful