The email exchange with Sonya Chowdhury after the petition in support of David Tuller.

 

From: John Peters
Sent: 15 May 2017 11:33
To: Sonya Chowdhury
Subject: Esther Crawley and David Tuller

 

Sonya,

I hope you are well.

Just so you know: since I'm writing on behalf of others, this email exchange will be made public.

I'm sure you're aware of the dispute between Esther Crawley and David Tuller.

Many patients are grateful to David Tuller for his work and object to Esther Crawley's attack on him and her false accusation that he, and Vincent Racaniello, are in any way anti-science.

We hope that in any discussion, formal or informal, of the matter by the board of UK CFS/ME Research Collaborative, Action for ME will represent patients' views.

As a way of gathering signatures for this email I began a petition on Friday evening.

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

We would very much welcome a statement by you should any discussion, formal or informal, by the board take place and an account of how it has progressed.

Best wishes,

John.

 

On 15/05/2017 20:07, Sonya Chowdhury wrote:

 

Hi John - as we have already repeated on several occasions, the statement will be posted as soon as it is finalised and approved by the Board.

I am aware of the petition and very unimpressed that some individuals (please do not think I am levying this at you as I am not) have fraudently signed up staff to the petition. They were very upset by this and have removed their names and it has been reported to Change.org. We will therefore take no action as a result of this petition.

Kind regards

Sonya Chowdhury, Chief Executive, Action for M.E.

 

On 16/05/2017 11:49, John Peters wrote:

 

Sonya,

Thanks for your email.

You're right that the adding of staff was nothing to do with me. I had no knowledge of it. I had always intended to close the petition after you replied and have done so. I wanted to show that I had support for my email and I thought a petition was the easiest way of doing it. I know some people provide templates and ask supporters to send them. I thought the petition was better than posting your email address across social media and have you come into work yesterday to 300 more messages in your inbox. Unfortunately there was no way I could stop idiot(s) from doing what they did.

I am sure you will not deny, though, that patients are grateful to and support David Tuller and that they have no confidence in Esther Crawley.

Patients' objections to Crawley are not to her personally but to her actions. Not only has she accused Tuller of being anti-science, but she is across the media and speaking at conferences making all sort of false accusations against patients. Her research uses such broad criteria as to be meaningless and to make her trials worthless.

Does Action for ME support these accusations she makes against patients? Does it not care about how ME patients are traduced in this manner? Does Action for ME agree with the criteria Crawley uses in her work? Is that how Action for ME defines ME?

These are not rhetorical questions. Many of us genuinely want to know why Action for ME seems to support Esher Crawley in these matters.

I thought you were serious about healing the rift between patients and the charity. This seemingly unquestioning alliance with Crawley bewilders patients and serves only to deepen the rift further.

John.

 

 

On 24/05/2017 11:47, Sonya Chowdhury wrote:

 

Hello John

I apologise for my delay in replying. M.E. Awareness Month is our busiest time of year and so I have been focusing on our work around this.

I am not prepared to make comments about the alleged conduct of an individual at an event at which neither I nor any member of Action for M.E. was present. We did not have any input into the content of the presentation and, given that she has no formal role within the charity, do not speak for Esther.

We are very clear about the extent of our relationship with her: we fund a severe paediatric M.E. surveillance study on which she is the principal investigator, and we work alongside her as part of the M.E./CFS Epidemiology and Genomics Alliance.

You have asked how Action for M.E. defines M.E. and we are absolutely clear on our website, in our publications and when speaking publically – as I did on BBC Radio Shropshire this morning – that M.E. is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems.

I understand that there are some very strong feelings on this issue, and that there are many voices shouting for one thing – but there also many unheard voices asking us to do something different. I can honestly say that for everyone who asks us to shout louder about PACE, there is another begging us to not get distracted. As we set out in our strategy, the main focus of the charity which is to provide direct support to people with M.E., and I’m not able to devote any more time to answering questions I’ve already addressed.

Thanks

Sonya Chowdhury, Chief Executive, Action for M.E.

 

 

On 25/05/2017 14:25, John Peters wrote:

Sonya,

Thanks for your email. No problem about the delay in replying. I understand you're busy, particularly this month. I haven't had a chance to listen to your segment on Radio Shropshire, but I hear it went well.

I also understand your reluctance to comment about an event at which you were not present. The reason why I emailed you and the concern for many patients was the possibility that the Collaborative Board would offer a vote of confidence in Esther Crawley, after the complaints made by David Tuller. Indeed, Stephen Holgate did in fact go ahead and make such a statement. Action for ME is represented on the Board and patients do not want the organization to support any such motion, whether formal or informal. As we said in the petition: we support Tuller's work.

Will you please confirm that you will convey to the Collaborative Board, should this matter be discussed formally or informally, that many patients have contacted you expressly to say that they support Tuller and Vincent Racaniello?

I understand also that you want to focus on the main work of the charity but, as you know, the mission for Action for ME 'is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure'.

Crawley tours conferences and the media making false allegations about patients. She shapes a false narrative about the illness and creates a false perception of the illness. She paints patients as extremist and anti-science. She is increasing misunderstanding of the illness. Many patients think that it is part of the mission of the charity to speak out against these false allegations.

Crawley's work uses very broad criteria, such as are bound to include patients who do not have ME but a generic chronic fatigue. On the back of this work she is frequently in the media making false claims about the numbers of people affected by ME and false descriptions of the nature of the illness and false assertions about effective treatments. Julia Newton's work has made it clear how important criteria are. Again it seems to many patients that it is part of the AfME's mission to counteract the misleading conclusions broadcast by Crawley, which are preventing greater understanding of ME and impeding work for a possible cure.

I understand that discussions about PACE may seem never-ending to some, but the findings remain unchanged. They reinforce current NICE guidelines. PACE is used by doctors, and some say by the DWP, to inflict interventions on patients for which there is no evidence and which are said by many patients to cause harm. The trial also shapes public policy and public perception of the illness. Once more, it would seem to many patients that AfME would see this as a crucial area in which to work, consistent with its mission. To overturn PACE is to work towards greater understanding and remove a roadblock on the route to a cure.

I know I am just one patient, but the collection of almost 300 signatures just over a weekend shows that many others share my concerns. We hope you will listen, consider those concerns seriously and act on them.

Thanks,

John

 

On 26/05/2017 08:42, Sonya Chowdhury wrote:

Hi John – I can confirm that with the CMRC, I always represent the range of views presented to the charity whether I agree, disagree or have no view. I also always make it clear where a view I am putting forward is my own.

Thanks

Sonya Chowdhury, Chief Executive, Action for M.E.

 

On 26/05/2017 11:45, John Peters wrote:

Sonya,

Thank you for your email. It is good to know that should this matter be discussed by the Collaborative Board in anyway in future, Action for ME will make it clear that patients support David Tuller and not Esther Crawley, and that Stephen Holgate will not be able to say that Crawley has the full confidence of the Board.

I hope that we can count on AfME to speak up forcefully when anyone, including Crawley, smears patients or when any researcher, including Crawley, makes false assertions about the illness based on work using criteria so broad as to be meaningless, and that AfME will work to overturn PACE and the unjustified claims made by its supporters for potentially harmful interventions.

Thanks,

John