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Request to Action For ME to support David Tuller

A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Action For ME should support David Tuller
We, patients, carers and supporters, note the groundbreaking, important work by David Tuller in standing up for proper science in the research of ME.

We also note the steadfast support by Vincent Racaniello

We object to the false and misleading accusations by Esther Crawley against David Tuller and Vincent Racaniello.

We reject unreservedly Esther Crawley's unfounded claims that David Tuller and Vincent Racaniello have at any time acted other than in the best interests of science, and of patients.

We fully support David Tuller and Vincent Racaniello.


We call upon Action For ME and its representatives at the UK CFS/ME Research Collaborative:

1. To speak up for David Tuller and Vincent Racaniello.

2. To make it clear that David Tuller and Vincent Racaniello have patients' full support.

3. In any discussion or decision to side with David Tuller and Vincent Racaniello.
Click to expand...
https://www.change.org/p/sonya-chowdhury-action-for-me-should-support-david-tuller

ETA: Not that it matters but this isn't my petition, I've only just seen it.
 
Y

Yogi

Senior Member
Messages
1,132
AndyPR said:
https://www.change.org/p/sonya-chowdhury-action-for-me-should-support-david-tuller

ETA: Not that it matters but this isn't my petition, I've only just seen it.
Click to expand...
Not sure a petition is best way. We should not have to force a patient charity to act in its own members interests. I think a boycott of AFME would be in order and publicising their sordid history and collusion with the psychiatrists and stop people from funding them with donations which harm pwme.

Maybe this will publicise their shameful stance?
 
Esther12

Esther12

Senior Member
Messages
13,774
AndyPR said:
I posted to Action For ME's Facebook page this morning asking whether they will announce if they support this open letter or not....and my post has been deleted...
Click to expand...

I can't even see the place where messages used to be posted on their page.

Yogi said:
Not sure a petition is best way. We should not have to force a patient charity to act in its own members interests. I think a boycott of AFME would be in order and publicising their sordid history and collusion with the psychiatrists and stop people from funding them with donations which harm pwme.

Maybe this will publicise their shameful stance?
Click to expand...

A petition shouldn't be necessary, but it looks like it is!
 
Y

Yogi

Senior Member
Messages
1,132
Esther12 said:
I can't even see the place where messages used to be posted on their page.



A petition shouldn't be necessary, but it looks like it is!
Click to expand...

I remember last September AFME and CMRC hijacked all the excitement of the day and launched their dodgy MEGA petition.

Maybe with all the excitement of #MillionsMissing and #MEAwarenessday if it gathers momentum on Facebook and Twitter then we can hopefully get rid of AFME and that wretched parasite Sonya Chowdhury. That would be a great achievement of MEAwarenessday!!!!!

Might be a smart move after all.
 
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Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
Hi Folks,

for those of you not aware of it. Esther Crawley has again been attacking the reputation of researchers who disagree with her model. This time in a presentation to kidney doctors at a conferance. A petition has been raised to demand tthat ActonForMe take actoins to defend these researchers.

I agree with this, a clear message need to be sent both to researchers that good research will be supported without attacks on their professonal reputations, and that we will not tolerate malevolent behavoiur to towards other researchers from anybody. Researchers must feel profeessionally safe to work in the field.

https://www.change.org/p/sonya-chowdhury-action-for-me-should-support-david-tuller

For those of you in the UK who agree with this viewpoint, please find a petition linked above. Fuller details are on the link.
 
Last edited:
B

Barry53

Senior Member
Messages
2,391
Location
UK
Wolfiness said:
It sounds really culty and controlling and I can't sign up to that.
Click to expand...
Agreed. Item 3 is self contradictory and shoots anyone in the foot who signs this - if the outcome is pre-decided what point is there in any discussion! Exactly the flaw in the whole BSP brigade's approach. Not sure I could sign this anyway, given the rationale behind this kind of statement. Own goal if ever their is one. I think the following statements risk supporters being validly accused of the same bias/parochialism as those we strive against:-
1. To speak up for David Tuller and Vincent Racaniello.

2. To make it clear that David Tuller and Vincent Racaniello have patients' full support.

3. In any discussion or decision to side with David Tuller and Vincent Racaniello.
Click to expand...
I would at least reword maybe more along the lines of:

1. To be wholly objective and impartial, and not afraid to speak up for David Tuller and Vincent Racaniello.

2. To make it clear that David Tuller and Vincent Racaniello have the full support of the vast majority of patients and carers.

3. In any discussion or decision, to side with David Tuller and Vincent Racaniello.
 
Cinders66

Cinders66

Senior Member
Messages
494
I can't see this working. AFME are lousy and have spent a lot of awareness week using cheesy images trying to get patients to accept their lot ( I'm bedbound decades but now make a bit of jewellery so all is good) and just keep hopeful - I got my comment deleted for pointing out the pointlessness of that - but they have no duty in my view to support a USA journalist, David tuller and also I felt David Tullers letter went too far. He was ofcourse smeared in a bad way by EC but I feel from him a short disdainful letter would have been more effective than threats which is what I saw. I think DT generally is awesome and an awesome advocate I just didn't think that letter was going to create the desired effect, especially with our often stuffy, we do expect to be challenged in anything, uk medical establishment.
 
J

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Fair enough. I am going to email Sonya on Monday. In my experience, she will listen. However, I speak for no one. The petition is just a form of group email. I could have tried to organize it though my blog but thought a petition was the easiest way.

It's just a method of expressing patient opinion to Sonya so she knows how we feel. It also means we can hold her to account. She cannot claim not to be aware of patients' views.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
I agree that some of the wording in the petition is unfortunate.

However, I have signed it, as I agree with the sentiment.

It is high time AfME decided to be on the side of patients and science, not the BPS crowd. I have added a comment to the petition explaining why I have signed.

I suggest, even if you don't want to sign because of the wording, you could go in and up-vote comments you like, or add a comment of your own.
 
S

Solstice

Senior Member
Messages
641
JohntheJack said:
Fair enough. I am going to email Sonya on Monday. In my experience, she will listen. However, I speak for no one. The petition is just a form of group email. I could have tried to organize it though my blog but thought a petition was the easiest way.

It's just a method of expressing patient opinion to Sonya so she knows how we feel. It also means we can hold her to account. She cannot claim not to be aware of patients' views.
Click to expand...

I've signed it, but Barry53 makes a couple of very good points in his post on this matter:

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849015
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
I've signed too, even though I think your point 3 is a bit over the top.

I hope when you share the petition with Sonya, you will also point her to the comments added to the petition. And to the requests that AfME sign the open letter asking for retraction of the PACE recovery paper.

Good luck getting through to her. It's such a pity that one of the biggest charities for ME in the UK is working against the interests of patients and continues to support Crawley, White etc and their poisonous BPS model.

Does Sonya understand the problem, I wonder. I gather from reading her biog. that her background is in charity administration, not in ME. Does she even understand the science at all, or does she see her role as simply to do the bidding of the BPS crowd? Surely someone paid a lot of money to run a large patient charity should educate themselves fully about the condition they are supporting. I can't understand where she is coming from on this at all.
 
Cinders66

Cinders66

Senior Member
Messages
494
JohntheJack said:
Fair enough. I am going to email Sonya on Monday. In my experience, she will listen. However, I speak for no one. The petition is just a form of group email. I could have tried to organize it though my blog but thought a petition was the easiest way.

It's just a method of expressing patient opinion to Sonya so she knows how we feel. It also means we can hold her to account. She cannot claim not to be aware of patients' views.
Click to expand...


Yes I'm not against a letter showing Patient support for tuller I just don't think we can demand AFME do. Regarding Sonya listening I've not seen any departure in AFMEs pro establishment stance. Even the activism they do is in line with a certain amount of improved GP training but I think that and NICE style clinics on every town would pretty much fulfill their ambitions.
 
J

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Barry53 said:
Agreed. Item 3 is self contradictory and shoots anyone in the foot who signs this - if the outcome is pre-decided what point is there in any discussion! Exactly the flaw in the whole BSP brigade's approach. Not sure I could sign this anyway, given the rationale behind this kind of statement. Own goal if ever their is one. I think the following statements risk supporters being validly accused of the same bias/parochialism as those we strive against:-

I would at least reword maybe more along the lines of:

1. To be wholly objective and impartial, and not afraid to speak up for David Tuller and Vincent Racaniello.

2. To make it clear that David Tuller and Vincent Racaniello have the full support of the vast majority of patients and carers.

3. In any discussion or decision, to side with David Tuller and Vincent Racaniello.
Click to expand...

My understanding is that there may be a discussion amongst (some of) the board members this week about a message of support in favour of Crawley.

I thought it important that AfME know in advance patients' views. I think most of us support Tuller and in any possible discussion this week about the ongoing dispute between Tuller and Crawley want AfME to take Tuller's side and not to back any message support of Crawley.

I intend to email Sonya on Monday and say this. I wanted to show her that I am not alone. The petition is just a way to do a group email. It is not about any longer-term policy. Once I have had a reply from Sonya and know she has seen the petition, I'll close it.

Maybe it could have been better worded but it was done in a bit of a hurry. It is not meant to refer to anything other than the current discussion about this specific issue.

And of course, it's only for those who agree.
 
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