Discussion in 'Upcoming ME/CFS Events' started by Sasha, Sep 15, 2014.
So good to see the articulate ill taking the reins of power to make the changes to how and what research is carried out. We are all so sick and tired of the lions share of funding being for clinical trials for drugs that make huge profits for big pharma.
Little bump for this... on this evening...
Vivienne Parry (journalist/presenter of the BBC programme 'Patients doing it for themselves') defended and praised the PACE Trial in an article for AYME (The Association of Young People with ME, charity):
(The entire article is on the link)
‘The PACE trial results – an analysis by Vivienne Parry, OBE’
‘The Association of Young People with ME (AYME) invited respected journalist and broadcaster Vivienne Parry to write an independent article on the PACE Trial in light of the controversy that surrounds it and the use of graded exercise therapy and cognitive behavioural therapy with this condition.’
‘Vivienne Parry is best known for her broadcasting for Radio 4, where she presents many medical science programmes. In the New Year's Honours 2011, she was awarded the OBE for services for the public understanding of science. Below is Vivienne Parry's analysis of the PACE trial written exclusively for LINK members.
ME/CFS is a disease which has far too little time and money spent on it. And whilst research on its cause, or more likely its many causes, is still in its infancy, the need for better treatments for those who are affected today by this dreadful condition is acute.
Thanks to the PACE trial, the largest ever study of ME/CFS treatments whose results were published in March, we at least now know for sure that there are two treatments – graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – that are safe and moderately effective.
But the trial outcome didn't go down well in the ME/CFS community with the result condemned as ‘disappointing and surprising' by some organisations, although it was welcomed by AYME. ‘……..
……..‘… CBT and GET are moderately effective for six out of every ten adult patients. They are likely to be effective in children but no one knows this for sure until further research is done. They are safe but only in the hands of therapists who are properly qualified. Finally, the NICE guidelines are not due for revision until 2013 and NICE have recently confirmed that they will not be altering them until then.
The nub of patient reaction to this seems to rest on an implication - which is why so many found some of the newspaper headlines so offensive - that the way they get better must say something about the cause of their illness. So, for instance, if CBT works for you, it must mean that ME/CFS has a psychological cause or if graded exercise therapy works, it must mean you are lazy. I find this completely baffling. I've worked a lot with cancer groups who campaign to have CBT as part of their treatment because it helps them feel better. No-one would dream of suggesting, I hope, that their cancer was a psychiatric disease......'
Incorrect. Please don't mention the experiment group rate without the control group rate. Net response was about 15%.
The number needed to treat was about 7. That means a clinically significant response in 1 patient for every 7.
A clinically significant response was defined as ≥ 2/33 points in fatigue and ≥ 8/100 points in physical function.
No, it was largely because the hype did not reflect the reality, and the history. A non-blinded trial without placebo control, with objective measures of function generally showing no useful improvement. CBT for cancer isn't based on the hypothesis that the symptoms and disability of cancer are predominately perpetuated by cognitions and behaviour?
Bump - this is on this evening.
You beat me to it! I listened last night and was going to tell everyone.
The BBC have been making some quality radio programmes lately.
I recorded it to listen to later - was it any good?
Here it is on iPlayer:
Yes! Very positive and interesting with some useful pointers. Very different from the usual 'doctors know best/patients should leave it to the experts' rubbish. They actually said that doctors need to get used to it, or words to that effect!
Just listened to it - I agree, I thought it was excellent. Some very interesting examples there of moving from patients' ideas and use of unestablished therapies to getting them taken up and/or proven in clinical trials. Lessons for us there.
Lessons for those in power too!
Ah, yes, Ms Parry.
From my ME agenda site (November 2008):
Parry, PRIME, Minervation and the ME Observatory
November 16, 2008
Update: The comment facility for this article on the Times website is premoderated and restricted to just 300 characters. I have left the following comment this morning which is awaiting moderation:
“This misrepresents the status of the PRIME Project. It was initiated and funded by GUS Charitable Trust (£320,000) of which Ms Parry is the Administrator. It is managed by Crowe Associates and Minervation. Its Steering Group includes patient reps but PRIME created and owns the website and forum.”
May be reposted
Parry, PRIME, Minervation and the ME Observatory
On Saturday 15 November, there was a two page article on Page 10 of the Body & Soul section of the Times by Vivienne Parry around internet forums and medical information sites.
The full article can be read on the Times site, here
In this article, Vivienne Parry writes: “Similarly, the patient-led website www.prime-cfs.org is also used by medical professionals. This site was set up by a group of patient support groups to allow information about the experiences and concerns of people with ME/CFS to be accessed by medical researchers. By doing this they hoped researchers would better understand this misunderstood condition.”
This misrepresents the status of the PRIME Project.
The PRIME Project was initiated and funded by GUS (£320,000). The PRIME Project is managed by Crowe Associates. Vivienne Parry is the administrator of the GUS Charitable Trust so she knows all about PRIME and she also attended an initial PRIME meeting, following which a Steering Group was put together.
The PRIME Project appointed patient group reps and other interested parties to sit on its Steering Group but the PRIME website had already been conceived by PRIME in conjunction with Minervation (Douglas Badenoch) prior to the formation of the Steering Group. It is PRIME that “owns” the PRIME Project and it is PRIME that “owns” the PRIME website.
The site was not set up by “a group of patient support groups” as Ms Parry has stated and neither was the PRIME Project, itself – the Project was initiated by its funders, GUS, who appointed management consultancy Crowe Associates to manage the Project.
The PRIME website hosts a forum which is owned, managed and moderated by PRIME in conjunction with Minervation’s Douglas Badenoch who has performed the role of moderator (and may still be moderating) the PRIME forum.
As the author of the piece, Ms Parry does not declare a professional interest in the PRIME Project.
Further on in the article, Ms Parry has also written: “However, some sites have started their own schemes, such as the site www.prostate-link.org.uk. This is a great example of what collective patient action can achieve.”
Prostate Cancer Charter for Action which hosts the “Prostate Link” forum is, according to its website, “a collaboration between the key voluntary sector and professional groups with a commitment to tackling prostate cancer.”
PCCA was initiated, funded and facilitated by the GUS Charitable Trust of which Ms Parry, as already stated, is the administrator.
I thought the website of Prostate Link had a rather familiar feel to it – the site was also created by Minervation.
Sally Crowe (Crowe Associates, PRIME), Douglas Badenoch (Minervation) and Dr Kirstie Haywood, RCN Institute (worked on PRIME) are all involved in the AfME National Observatory Project.
Ms Crowe and Ms Haywood hold seats on the Observatory Steering Group. Douglas Badenoch is listed under “Others involved in the project”.
Why is Douglas Badenoch involved in the Observatory? Mr Badenoch confirmed to me in December 2007:
“Sally Crowe and I both sit on the steering group of the Observatory; this is a reciprocal arrangement.”
when asked to explain “reciprocal”, he wrote:
“Derek Pheby from the Observatory sits on PRIME’s advisory group; that’s what I mean by “reciprocal”. Both projects wanted to make sure that we learned from each other and didn’t duplicate any efforts.”
But what specific role does Minervation/Badenoch fulfil within the Observatory?
One of the tasks for year one of the AfME National ME Observatory Project was to set up a website for information about the Observatory. This requirement of the Big Lottery Fund has yet to be fulfilled.
Is the website going to be created and maintained by Minervation?
In the summary of the November ME Association Board of Trustees meeting, Charles Shepherd writes:
“[Observatory] Among the items discussed was a proposal to hold some public meetings next year where the work of the MEO could be presented. The next Steering Group meeting will take place in January 2009.”
Are Sally Crowe Associates/Minervation going to be involved in facilitating these public meetings on behalf of AfME?
If and when the Observatory website is set up, if it is managed by Minervation, what function might Minervation perform as a gateway for communication and interaction between the ME community and the Observatory? Users of the PRIME forum have reported problems with censorious moderation of their postings and a lack of transparency from those involved in the management of the PRIME Project who participate in discussions and respond to questions, queries and comments from members of the public via the PRIME forum.
It has already proved difficult to communicate with the Observatory and to obtain information about the Observatory Project. For example, AfME has only very recently released the names of those on the Observatory Steering and Management Groups – Dr Derek Pheby (AfME Observatory Project Co-ordinator) was not prepared to release these to me in October 2007.*
Will Dr Pheby or AfME be prepared to confirm what role Minervation plays in the management of the Observatory project, when the Observatory website will be launched and who will be responsible for its management?
The full article by Vivienne Parry can be read here:
November 15, 2008
Should you trust health advice from internet forums?
There are internet forums for all kinds of illness. We explore whether you can rely the advice and information you can get from these sites
by Vivienne Parry
*Disclosure by AfME of composition of National ME Observatory Steering and Management Groups
October 29, 2008
Maybe Ms Parry has seen the light now? (I didn't read all the info above or follow the links but got the gist.)
You can also try a Google Site Search
Separate names with a comma.