Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study

[Andy]

Just announced on the AfME Facebook page

A paediatric M.E. research study that Action for M.E. was supporting has found alternative funding, allowing us to use the money to support children and families with M.E. in other ways.

Last year, we announced that we wound funding a severe paediatric M.E. surveillance study at the University of Bristol. Led by Prof Esther Crawley, the 13-month study aims to measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK. The £6,000 with which Action for M.E. funded this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering. This sum was match-funded by University of Bristol.

Since the announcement, the research team has been establishing the necessary ethical and other approvals required to enable the study to start. During this time, Prof Crawley has found alternative funding that still allows the study to go ahead and enables Action for M.E. to utilise the funding to instead grow our vital support services for children and young people with M.E. and their families.

For this reason, by mutual agreement with the University of Bristol, Action for M.E. has terminated our contract to fund this study.

Following discussion and agreement with our donor, we will now use their generous £6,000 gift to ensure our expert Children’s Services team can reach even more children and families living with M.E.

 

[Liv aka Mrs Sowester]

we announced that we wound funding a severe paediatric

Well that slip is most certainly telling.
(My bold)

 

[Hoopoe]

a private corporate donor with a specific interest in seeing the alleviation of childhood suffering.

Come on, don't fund Crawley. She's incompetent and will just delay real help for these children by publishing poor science.

Plus you're making a laughing stock of yourself by funding someone who thinks the illness can be treated by telling it to stop.

 

[Trish]

This study gives me the horrors. Imagine Crawley having access to details of children with severe ME all over the country. And I thought she has said severe ME doesn't exist and re-diagnoses them with Treatment refusal syndrome or what ever other name she gives it. Aaaargh!

 

[Barry]

Maybe AfME have been bottling out, and saying so behind the scenes, provoking the need to find alternative funding? They would hardly announce it that way of course.

 

[Barry]

Come on, don't fund Crawley. She's incompetent and will just delay real help for these children by publishing poor science.

Plus you're making a laughing stock of yourself by funding someone who thinks the illness can be treated by telling it to stop.

Presumably the donor would have to be made publicly known at some point?

 

[Barry]

This study gives me the horrors. Imagine Crawley having access to details of children with severe ME all over the country. And I thought she has said severe ME doesn't exist and re-diagnoses them with Treatment refusal syndrome or what ever other name she gives it. Aaaargh!

Absolutely. Don't think I'd trust her with a hamster.

 

[Bluesky]

it is rather scary crawley having list of severely ill children.

 

[Sly Saint]

access to details of children with severe ME

Agree, except Crawleys idea of severe is not necessarily what is generally considered severe.

"The £6,000 with which Action for M.E. funded this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering."

maybe the donor found out/realised the funds were actually going to contibute to more suffering(?)

 

[guest001]

Come on, don't fund Crawley. She's incompetent and will just delay real help for these children by publishing poor science.

Plus you're making a laughing stock of yourself by funding someone who thinks the illness can be treated by telling it to stop.

It's the 'corporate' word that is ominous to me. It should be possible to find out just 'who' they are surely? Plus their vested interests... which can't be to improve life for children with ME as they'd steer as far clear of EC as it's possible to be...

 

[guest001]

Absolutely. Don't think I'd trust her with a hamster.

As an animal lover... heaven's no!

 

[Adrian]

Agree, except Crawleys idea of severe is not necessarily what is generally considered severe.

"The £6,000 with which Action for M.E. funded this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering."

maybe the donor found out/realised the funds were actually going to contibute to more suffering(?)

It sounds like AfME may be changing their story on what the funding was given for. At one point they seemed to be suggesting it was given for Crawley's specific project rather than for "the alleviation of childhood suffering"

 

[Cinders66]

It's £6000, piddling amounts whatever way.

Very useful for them to be able to channel it into the essentially old AyME which folded due to struggling for funds. Helps to separate afme from Crawley with criticism of their connection.

Anything AFME do outside "support" is pretty irrelevant. They don't change anything or want to or if they do want yo they're spectacularly ineffective

 

[Adrian]

Very useful for them to be able to channel it into the essentially old AFME which folded due to struggling for funds. Helps to separate afme from Crawley with criticism of their connection.

AYME folded not AfME but I think that is what you meant.

 

[Cinders66]

AYME folded not AfME but I think that is what you meant.

I've corrected it, yes I meant that.

 

[Esther12]

Surely a good sign that they're placing greater distance between themselves and Crawley?

It's a weird statement, but Action for ME aren't really known for clear and insightful communication.

 

[Valentijn]

Maybe AfME have been bottling out, and saying so behind the scenes, provoking the need to find alternative funding? They would hardly announce it that way of course.

That's how I read it as well. Esther Crawley has become a toxic commodity. AYME folded into AfME without bringing her along, AfME stopped verbally supporting her research, and essentially disavowed SMILE when it was published. Now AfME is even withdrawing promised funding.

It's not like money is falling from the sky, even for psychosomatic quacks, and with the amount of garbage Crawley is willing to churn out, she could probably use the funding for it. How often do researchers really say "Thanks, but I don't want or need more funding"? They don't - if they get more funding they expand the project to include more patients or more testing, etc. That would be especially useful in assessing severe patients who can't leave their homes, assuming the researcher is able to acknowledge that such patients exist

 

[Seven]

Esther Crawley has become a toxic commodity

Agreed!!! also, would be nice, to keep in mind she is just a puppet for the BPS giants, she can be interchangeable, we need to expose the puppeteer also and follow the trail so she cannot be easily replaced while we have the dog by its tail.

 

[Inara]

It just can't be true.

It's not the first time I think I must be doing something wrong. So many people get so much money by offering crap. I just don't get the real dumb ideas...

It's the 'corporate' word that is ominous to me.

That was one of my first thoughts, too.

 

[TiredSam]

I really hope this is just spin and bullshit to allow some face-saving, dressing up the fact that they've finally done the right thing and told Crawley where to shove it, in the best possible light.