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

Andy

Senior Member (Voting rights)
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.
 
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(?)
 
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...
 
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"
 
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
 
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 :p
 
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