• 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, 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.

Crawley: How to deal with anti-science BRS2017

suseq

suseq

Messages
66
I am hugely grateful for the brilliant thought provoking research writings and advocacy of Margaret Williams, Professor Malcolm Hooper, Eileen Marshall and Suzy Chapman, as well of those of the late, and sadly missed, Jodi Bassett on her www.hfme.org website, plus all the other wonderful advocates over the years who have worked tirelessly to highlight and document the medical and political history behind this illness.

All this information is a huge asset to the ME Community, and anyone else caught within the BPS framework, in realising and understanding what we are up against, and the shameful way we have been maligned and mistreated for far too many years.

It helped me enormously to recognise my illness and how I was being treated, and for that I thank you all.
 
M

MEMum

Senior Member
Messages
440
Somer said:
http://me-pedia.org/wiki/Esther_Crawley
I've just been reading this link on EC. According to this EC has been awarded £2.3 million grants from various bodies since 2006.
Sorry but I'm starting from basics...
Are the National Institute for Health Research & the Medical Research Council the 2 main awarding bodies in this country?
Have they funded any biomedical research?
Apologies if question should be on another thread.

& as others have said above, I'm starting to wonder exactly what money given to the CMRC will be spent on? Donors (in whatever form) might think they are doing something positive by contributing to M.E research & yet it could be just being further squandered on studies that contribute nothing to actually furthering our understanding of the disease.
Click to expand...



I think we are all wondering what the potential MEGA or other CMRC money would go on. Nothing that will advance biomedical research or help seriously ill people, with the current "leaders".

There is also the Wellcome Trust who fund a fair amount of science research.
I suspect that small amounts of non-charity raised money has been obtained by Julia Newton, for her work in POTs and muscles. Some of her earlier work, used PBC(primary biliary cirrhosis) as a comparison, alongside controls. As PBC is a "real" disease this may have attracted funding!
 
Daisymay

Daisymay

Senior Member
Messages
754
suseq said:
I am hugely grateful for the brilliant thought provoking research writings and advocacy of Margaret Williams, Professor Malcolm Hooper, Eileen Marshall and Suzy Chapman, as well of those of the late, and sadly missed, Jodi Bassett on her www.hfme.org website, plus all the other wonderful advocates over the years who have worked tirelessly to highlight and document the medical and political history behind this illness.

All this information is a huge asset to the ME Community, and anyone else caught within the BPS framework, in realising and understanding what we are up against, and the shameful way we have been maligned and mistreated for far too many years.

It helped me enormously to recognise my illness and how I was being treated, and for that I thank you all.
Click to expand...

Yes I too am very grateful to all these people.Their works have given the ME community important historical records of what's been going on and by whom for all these years.
 
S

Sidereal

Senior Member
Messages
4,856
I suppose even after this debacle some people in the quisling organisations known as ME charities will insist on the value of big tents. It's obvious that the CMRC is not interested in the pursuit of scientific truth or defending the reputations of patients and their defenders like Tuller/Racaniello but rather promoting the interests of the BPS lobby now led by EC. Why the ME charities are not calling for the disbanding of this freak show is beyond me.
 
slysaint

slysaint

Senior Member
Messages
2,125
1306130-Cartoon-Circus-Elephant-Stuck-In-A-Big-Top-Tent-Poster-Art-Print.jpg
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Chrisb said:
That has scuppered their chances of joining the CMRC.
Click to expand...

....I'm sure they'll cry themselves to sleep. At this point, it's hard to believe an honest researcher would want to involve themselves with the CMRC. For those already embroiled, I'd be planning an exit strategy.

Then again, maybe those involved (like J Newton, who has produced plenty of good studies, IMO) view Crawley the way we view our crazy, racist/sexist uncle who always gets drunk on Christmas and calls people terrible names -- but because he's family, he gets amused/bemused tolerance rather than the expected outrage. :rolleyes:

For the charities who are not complicit, we discussed earlier in this thread the potential of starting a petition; it was shot down quickly and perhaps reasonably. Crawley's actions speak for her, and for any organization of which she is a part.

Rather than say "the charities should do something" let's say what we would like them to do. (Apart from AfME, where I think what we would like them to do is quite clear at this point.)

For example, the day of awareness is this week. Protests in California in early June. I think it's important for people to make Crawley's statements part of their in-person advocacy efforts at these events. Use quotes. Use images of her most pernicious tweets. Make it clear what power she has to decide the course of patients' lives while believing that patients are practically sub-human violent offenders, and persistently 'othering' patients to better fit her aims. Even without context, her behavior is abhorrent.

-J
 
slysaint

slysaint

Senior Member
Messages
2,125
JaimeS said:
Apart from AfME, where I think what we would like them to do is quite clear at this point.
Click to expand...
JaimeS said:
I think it's important for people to make Crawley's statements part of their in-person advocacy efforts at these events.
Click to expand...
JaimeS said:
Make it clear what power she has to decide the course of patients' lives while believing that patients are practically sub-human violent offenders, and persistently 'othering' patients to better fit her aims
Click to expand...
Someone should have warned them in Scotland.
http://forums.phoenixrising.me/index.php?posts/848528/
 
slysaint

slysaint

Senior Member
Messages
2,125
Just found this:
https://www.actionforme.org.uk/assets/components/discuss/attachments/1/6533/fitnet_trial guff.pdf

"
Mrs Mary-Jane Willows
Lead for patient and public involvemnt
Chief Executive of The Association for Young people with ME"

So I guess that means now she works for AfME, FITNET is also 'in their tent'.
I like the naming standard for the pdf - 'fitnet_trial guff':

guff
ɡʌf/
noun
noun: guff; plural noun: guffs
  1. 1.
    informal
    foolish talk or ideas.
  2. 2.
    Scottish
    an unpleasant smell.
Both fit me thinks:D
 
You must log in or register to reply here.