• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Action for ME pulls their funding of Esther Crawley's research into severe ME

Countrygirl

Senior Member
Messages
5,398
Location
UK
Interesting development here. ;)

It might be interesting to know the real reason.

Prof Crawley informs paediatricians that 'severe illness is not on the ME spectrum' and it is re-diagnosed as PRS/PAWS. PEM has even been included in the diagnostic guidelines for PRS. It is very tempting to wonder if this new definition of PRS is perhaps providing very useful in protecting doctors who have made their patients much more ill through enforced exercise therapy. :rolleyes:

Action for M.E.
3 hrs ·
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 would fund 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.

 

hixxy

Senior Member
Messages
1,229
Location
Australia
£6,000 is really not very much money and shouldn't be hard for the researchers to replace. When I saw the title of the post I was hoping this would be a bigger blow. Hopefully this is a permanent arrangement of not funding their team or any other BPS teams.
 

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
Action for ME are far too diplomatic to give us the real reason but a number of important organisations seem to be politely distancing themselves from EC. Me research uk and Julia Newton have left the cmrc in the last year. It may only be £6000 but contributing to research signifies support.

Maybe EC just found a better deal and generously gave it back. We will probably never know. In the absence of accurate information, I will comfort myself with the fantasy that Action for ME has finally come to its sensesnabout EC.