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For the first time, I've realised how much the whole set-up is more like a religion, or a cult, than a therapy.
Its success seems to be based on a charismatic leader, secrecy, general ignorance about the nature of the program, the unquestioning faith of the adherents and the energised motivation of the promoters.
It's a bit scary how the health service, the government, universities, medical 'experts', medical specialists and celebrities can all get so easily roped into it, without there being a single shred of research evidence that it works as a treatment for ME.
Thanks very much for that Suzy...
The threads are way too long for me to read through them all again!
Yes, it is a long thread which is a reflection of just how much work has been done on this issue by many people, some of whom are working quietly behind the scenes.
But if you are not up to speed with what has been going on in more recent months, it does make it difficult for those of us working on this issue or contributing to these LP and LP pilot threads to know what you are already aware of and what information might be useful to you.
Suzy
berkshire.online@bbc.co.uk
Re: Broadcast in which Esther Rantzen discussed ME/CFS and the new UK ban on blood donation by everyone with the illness with ME Association medical adviser, Dr Charles Shepherd, BBC Radio Berkshire: Monday 1 November
I am writing to complain about Ms Rantzen's handling of this broadcast.
I understand that Ms Rantzen was standing in for the usual presenter, Ms Anne Diamond.
I have the following concerns:
1] Ms Rantzen was brought in to present a programme during which the ME/CFS blood ban would be discussed.
Ms Rantzen has a number of COIs in relation to ME/CFS.
Ms Rantzen is President of AYME (The Young People's ME Trust).
She is known to promote the Phil Parker Lightning Process in the media.
The patient organisation of which she is President has for its medical adviser, Dr Esther Crawley.
Dr Esther Crawley is about to commence recruiting participants to a controversial pilot study where the Lightning Process will be applied to children aged 12 to 18 years old, for which Dr Crawley is Chief Investigator.
The patient organisation of which Ms Rantzen is President has been involved in the development and planning of this Lightning Process pilot study.
The patient organisation of which Ms Rantzen is President has a seat on the "Expert Advisory Group" for this Lightning Process pilot study.
2] I have scrutinised a partial transcript and note that during the broadcast, Ms Rantzen, on several occasions, sought to promote the Lightning Process to the public and to a contributor to the programme calling on a phone-link and that she also directed him to look at the internet for more information on the Lightning Process.
Ms Rantzen also made claims for recovery rates of patients with ME/CFS for which she offered no supporting evidence.
3] In my opinion, Ms Rantzen gave misleading information in relation to the blood ban and its application to individuals.
In response to the caller's concerns about the cost of the Lightning Process, Ms Rantzen is reported as having said, I think there may be an equivalent on the NHS.
This is incorrect, there is no equivalent available on the NHS.
In the light of Ms Rantzen's COIs and given her blatant promotion of the Lightning Process during a BBC broadcast I do not consider that Ms Rantzen could be considered to have been a neutral presenter.
I do not consider that she should have used the issue of the ME/CFS blood ban to promote a commercial "training" programme marketed by Phil Parker and his Lightning Process trainers/coaches/practitioners during a BBC broadcast.
I consider that the BBC was negligent in its failure to take Ms Rantzen's COIs into consideration when selecting a stand-in for Ms Diamond and that Ms Rantzen had taken advantage of her position, as presenter, to introduce and promote the Lightning Process to the public during an item, the focus of which was the recent UK blood ban for ME/CFS patients.
I would welcome your responses.
I also request a copy of the BBC's policy on the declaration of COIs in its presenters and a copy of the BBC's policy on the promotion of commercial goods and services by BBC presenters during broadcasts.
Sincerely,
etc
If people are looking for ideas of things to do, one idea might be to reply to Esther Crawley's letter that was published.
I didn't mean to give the impression that I thought nothing was being done about this subject...
I know that a lot has been going on, and I have been following the thread closely...
I suppose I am really frustrated that this project is going ahead anyway, despite all the hard work that so many people have done...
And I was just wondering if, between us, we could think of any other avenues to explore. I suppose it was a silly question, as so much work has already been done.
Unfortunately, all the efforts to-date haven't worked, unless there are some pending developments in the pipeline that i'm not aware of...
I don't want to be negative, but the fact is that the children are still going to be subjected to this project, unless the national ethics committee has a change of mind very soon.
I suppose another question might be... who, at this late stage, would it be most useful to approach about the subject with complaints and information?
Who would it be most useful to approach, as an individual? Any thoughts on this Suzy?
But if you are not up to speed with what has been going on in more recent months, it does make it difficult for those of us working on this issue or contributing to these LP and LP pilot threads to know what you are already aware of and what information might be useful to you.
That paragraph doesn't make sense there Suzy... I think you might have mistyped?
Be aware Bob, that if you write to Church Times and they publish your letter, they will want your full address for publication.
Bob, I haven't said nor implied that I thought you were under the impression that nothing was being done. What I had said was that the length of the thread is a reflection of how much work has been done on this issue by a various people. The focus here was the length of the thread, about which you had remarked, yourself.
No Bob, I have not mistyped. You haven't posted in the thread for a while, that I am aware of; you had not said that you were already aware that the NSPCC had been approached when you referred to "authorities" and children's organisations; you had not said that you had been following the thread.
Therefore, it was difficult to know what information you were aware of; what information to repeat or what information might be useful to you.
If you have been following the thread closely - that's fine.
Suzy
Thanks Suzy.