PRiME and the Scottish Parliament Issue
14th June 2005
Yesterday I had an exchange of e-mail with Sally Crowe from PRiME in-between doing my own investigations into PRiME and the various associations with the usual suspects i.e. Vivienne Parry, Simon Wessely, The Linbury Trust, Lord Sainsbury and the Science Media Centre.
As I found out - underneath the PRiME Project is the usual list of suspects, all part of the family tree that we have come to know so much about since this group started.
In my e-mail exchange with Sally Crowe I asked her what she thought about the debate in the Scottish Parliament and she said she thought it was very interesting. I asked her if the contents of the debate would be used in the PRiME Project.
I have watched the Scottish debate with interest, and all of the subsequent comments thereafter.
The PRIME project is all about the 'patient perspective' so we will wait and see what our research shows and the views that we acquire through the other project activities such as the workshops.
The PRIME project is independently funded and thus has a neutral stance on issues of ME/CFS research, we are primarily concerned with elicit ting the patient voice, in transparent and robust ways, from a wide range of patients.
This rang alarm bells for me so I replied with the following...
What concerns me is this.... patients are quite often lay people - patients are quite often not interested in the politics of their ill health although I'll admit that the ME community is a growing exception.
The MSPs that spoke in that debate were all representing their constituents who were in turn patients in the ME community.
Patients on their own are not normally able to express their opinions on their own so they write to their MPs and MSPs.
Therefore the debate and the views aired in the debate are the views of ME patients by proxy.
I think it would be a very serious issue if the PRiME project chose to set aside the views aired in the Scottish Parliament debate and indeed MSP's did clearly highlight the views of ME patients - their constituents and they told the house of the support patients gave to Dr Gow and Dr Chaudhuri and the gene expression research that badly needs further funding.
I would therefore be most grateful if you would include the views expressed in that debate within your PRiME project.
To fail to do so would in my view be quite an indictment.
And in reply Ms Crowe wrote...
PRIME is interested in all aspects and expressions of the patient voice, and I take your point about lay people working through their MPs and MSP's, this sort of dialogue has been submitted to the literature review of patient experience of ME ( the review is working on published as well as unpublished material).
We also recognise that the situation is different in Scotland...
We also want to strike a balance between including the views of recognised groups, large and small, virtual and face to face, and people with ME/CFS who are not part of these systems (and their appear to be many of them).
So having gained no reassurance at all I replied with the following....
As you will no doubt be aware, ME/ICD-CFS is not just a chronic illness that affects people in Scotland.
The debate in the Scottish Parliament highlighted research that could benefit people around the world. The fact that such research into gene expression is based in Scotland does not mean that this is a Scottish issue.
But this debate clearly stated that should genetic research be given the funding it needs, the current "services" being proposed would become irrelevant.
And their lies the problem.
The thing is... we are observing a juggernaut forcing through an agenda of providing "services" that for many people displaying the signs and symptoms of ME/ICD-CFS will mean the servicing of chronic ill health and the perpetuation of chronic ill health.
Who is that of use to apart from those making money out of doing such?
There is nothing else on offer - nothing at all and many of us know exactly why....
The question that comes to mind is this - What is the PRiME project all about? What is the bottom line and who set up PRiME and who are the backers and vested interests in the outcome of PRiME?
Is PRiME all about getting a group of people together to further endorse the ongoing agenda that has been stitched together by the DoH, MRC, Action for ME, Simon Wessely and his associates along with the Linbury Trust and Lord Sainsbury who gave generously to the Linbury Trust to help Wessely and who now oversees the MRC who employed Wessely and his associates?
Or is PRiME about doing the right thing for the patient population and not for the vested interests of those currently spending millions of pounds on psychological interventions that will not provide a cure to a patient living with genetic and neurological abnormalities?
What if science is now demonstrating that the agenda being followed today is now fatally flawed - that the agenda is wrong in what it is doing because ultimately the sciences of genetics, neurology and immunology have now caught up against all the odds of being systematically starved of monies that have been and still are being directed at somatoform psychiatry.
If genetics can provide a real and radical alterative that would make any currently proposed "services" unnecessary across the whole United Kingdom as Alex Fergusson stated in the Scottish Parliament Debate then why would PRiME want to support such services as those currently being put together via Government grants, Action for ME and a bunch of somatoform psychiatrists?
There are many interesting questions that need answering behind all this.
For example - is it actually true that your boss Vivienne Parry previously worked on projects associated with Simon Wessely, the Linbury Trust and Lord Sainsbury?
Is it also true that Sally Crowe of Crowe Associates has been involved with the Medical Research Council in relation to the MRC response to the MHRA consultation letter on the Medicines for Human Use (Clinical Trials) Regulations 2003 (MLX 287) and draft legislation?
I for one am very concerned by what this PRiME initiative is actually out to achieve.
Perhaps you will be able to give me some answers.
And in reply I got the following that I have not yet replied to....
Thank you for your email - PRIME is independent in its funding, and in its objectives, we have no hidden agenda and never have had, all of our minutes from public meetings and steering group meetings are on the PRIME website for all to see.
We will report on what people with ME/CFS say to us about their experience of living with ME/CFS and their interests in research.
With best wishes
So as you can all see I got no answers to any of the questions I asked.
The fact that no answers were given is to me an answer in itself.
From the outset of the PRiME Project I was cautious about where exactly this PRiME initiative was coming from and who was behind it.
The fact that Action for ME were so keen to jump on board also made me worried and the bottom line was that although MEActionUK was invited to join the PRiME Project we decided to decline the invitation.
Since then I have been keeping Sally Crowe updated on events in the ME world as they happen but I think all of my suspicions were confirmed yesterday when it was pretty clear that the issues raised in the Scottish Parliament debate were deemed not appropriate for the PRiME Project even though the views expressed in that debate were views aired by patients through their MSPs.
Sally then made the excuse that "the situation is different in Scotland".
This seemed to me to be such a weak excuse because people with ME all across the world have the same condition that could be fundamentally addressed by Dr Gow's research.
I think we have to remember that so many inventions and scientific breakthroughs have happened in Scotland.
Just because such technological and scientific progress has happened north of the border does not therefore mean that those who benefit can only do so if they live in the same country.
People all around the world would benefit from the genetic research of Dr Gow.
This is why all the people at PRiME should be shown the debate in the Scottish Parliament.
I hope that those involved with PRiME will make sure that this happens and that the views of those who debated in the Scottish Parliament are taken on board.