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

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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In the context of the inclusion of joint hypermobility you might want to see this post, in the MUS, PPS and IAPT thread.

One of the authors of this chapter is presenting at the EAMP 2017 Conference, Barcelona, in July:

http://forums.phoenixrising.me/inde...ening-across-the-uk.48710/page-29#post-851816

Joint Hypermobility, Anxiety, and Psychosomatics — The New Neuroconnective Phenotype

By Guillem Pailhez, Juan Castaño, Silvia Rosado, Maria Del Mar Ballester, Cristina Vendrell, Núria Mallorquí-Bagué, Carolina Baeza- Velasco and Antonio Bulbena
DOI: 10.5772/60607
 
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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.
I saw this coming and wrote to AfME in March.
My email and their reply as follows;

Dear Sonya
I would be grateful if you could bring my comments to the attention of your Board of Trustees.
I hear of your upcoming merger with AYME and fully appreciate the reasons and benefits.
Can I just make one comment or plea?
In AfME you have an excellent medical advisory team with Dr Purdie and Prof Newton.
I strongly suggest there is no need to supplement this excellent team.
Can I put this another way?
PLEASE DO NOT ADD TO YOUR MEDICAL ADVISORY TEAM.
You would be doing AfME a disservice if you were to inherit any of AYME’s existing medical advisers.
Many thanks in anticipation
Jeff Bulmer
Carer and Supporter to both Wife and Daughter who have ME/CFS

===========Reply=============
Good morning Jeff
Thank you for your email. Sonya is out of the office for the remainder of this week - but I will pass on your comments on her return.
In the meantime I would like to advise that our current medical advisors, which you name in your email, will not change due to the merger. In case you have not already seen it, I have attached (below) a link to our website giving details along with a further link to some FAQs which confirms the above statement (on page 5 of the FAQ).
https://www.actionforme.org.uk/news/action-for-me-launches-new-childrens-services-team/
I hope that this answers your concern.
Kind regards
Xxxxxxx
 

Hutan

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@charles shepherd
From here 400 pounds to provide clearly much needed information to paediatricians in an area that seems to be a hotbed of ME=MUS thinking doesn't seem so much. But fair enough, you are having to manage limited funds and you want to make the maximum impact.

Given this SW Paeds Club has made a pretty egregious error with the MUPPETS title (let alone the biased content of their training day), perhaps in one of your nice calm letters or phone calls you could suggest that the club passes the hat around and comes up with the funds to ensure that all of its members get a copy of the Purple Booklet?

Or at the very least circulates a statement from you to its members about recent biomedical research into ME. It could suggest that interested paediatricians ask for a copy of the booklet and attend the IiME conference.

Given complaints have been made to the authorities about the MUPPETS title, the SW Paeds Club may be very pleased to have the opportunity to show that they do want to learn more about ME. Perhaps they may like to circulate information from POTSUK too.
 
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Ysabelle-S

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@charles shepherd
From here 400 pounds to provide clearly much needed information to paediatricians in an area that seems to be a hotbed of ME=MUS thinking doesn't seem so much. But fair enough, you are having to manage limited funds and you want to make the maximum impact.

Given this SW Paeds Club has made a pretty egregious error with the MUPPETS title (let alone the biased content of their training day), perhaps in one of your nice calm letters or phone calls you could suggest that the club passes the hat around and comes up with the funds to ensure that all of its members gets a copy of the Purple Booklet?

Or at the very least circulates a statement from you to its members about recent biomedical research into ME and suggesting that interested paediatricians can get ask for a copy of the booklet and may like to attend the IiME conference?
Yes, I think it would be a good idea to see if this so-called club might make more of an effort to make amends by actually making sure their members get a copy of the Purple Booklet, and any other necessary literature. I don't think it's too much to ask.
 

slysaint

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I think Crawley's a quack
noun
1.
a fraudulent or ignorant pretender to medical skill.
2.
a person who pretends, professionally or publicly, to skill, knowledge, or qualifications he or she does not possess; a charlatan.
adjective
3.
being a quack:
a quack psychologist who complicates everyone's problems.
4.
presented falsely as having curative powers:
quack medicine.
5.
of, relating to, or befitting a quack or quackery :
quack methods.
verb (used with object)
6.
to treat in the manner of a quack.
7.
to advertise or sell with fraudulent claims.

Quintessentially Un-scientific Arrogant Callous Know-all

 

taniaaust1

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Maybe if anyone could, it may be beneficial for a group of ME people to protest at that event over the insult of being called Muppets, one could put on posters that example of how this is the same as if they called a cerebal palsy lecture "a day with the spastics). I once protested at a medical conference. This whole horrific thing could be used to try to get some media coverage. Most would agree this terminology isnt nice
 

Ysabelle-S

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A big question that doesn't appear to be being asked on social media is
Why was there a 'media silence' of coverage of Esther Crawleys' presentation:
What did she have to hide?

eta: rhetorical question here as we can all guess but it should be asked.
I think I brought this up somewhere at some point, but it bothered me too. I don't think it looked good. It smacks of having something to hide, and given the seriousness of ME, and her past behaviour, we really deserve to know what was said. If they are not willing to be transparent, then we have no reason to trust any paediatricians in this area. I still cannot get over the fact so many signed up to a meeting with this title. There is something fundamentally wrong, and all they're doing is hiding in their bunker with nothing more than a pathetic attempt at an apology where they mention medically unexplained conditions three times, like someone with their fingers in their ears, chanting 'la-la-la we're not listening.' It's quite clear they're not ready or willing to engage with the real science. They are on the defensive.
 

trishrhymes

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I think the media silence during Crawley's talk is not at all surprising. I bet she started her talk with a sob story about anti science activists attacking her and advised them not to tweet and to block anyone who had responded to their tweets so far and take down any tweets that had been responded to. Like sheep they did just that. We have the evidence.
 
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@Ysabelle-S yes now they will be on the defensive and the danger is we could entrench their views further.

I wonder whether the disablism angle will be taken seriously? In the public sector queries about offensive behaviour towards groups protected by the equality Act are sometimes followed up by having to attend relevant training. It would probably be their generic disability awareness training though I would think.

Also They will probably recognise the MUPPET problem, but it is a much bigger battle to get MUS recognised as institutionalised disablism.