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Open letter: Proposals to test efficacy of Lightning Process

Thursday 16 June 2011

From ME Free For All.org:

 

Lightning ProcessOpen letter: Proposals to test efficacy of Lightning Process for M.E. (31 May – 11 June 2011)

By Dr John Greensmith
11 June 2011
POSTED IN: Open and Campaigning Letters

Open letter to Phil Parker, Inventor of the Lightning Process (to be freely available to all Lightning Process trainers), with copies to Dr Hilary Jones, Doctor at Daybreak TV, presenter Lorraine Kelly and known interested individuals and organisations, with permission to forward to any others who may wish to receive and be kept informed.

Dear Phil,

First, may I thank you for your courtesy in taking the time to respond to my proposals to test the efficacy of the Lightning Process for people with M.E. (Myalgic Encephalomyelitis), which I sent, originally, on 31 May 2011 and copied to Dr Hilary Jones and Lorraine Kelly at the lorraine@itv.com address of the ITV Daybreak programme, as well as to many M.E. individuals and support groups, with permission to forward to all interested parties.

I have not had even an automatic acknowledgement from the Lorraine team address, as one normally does from, say, a national newspaper but may fairly safely assume that my e-mail arrived since it does not seem to have been returned. Dr Hilary is harder to reach personally. I presume he would have the chance to see my proposals at Lorraine’s address but, to be sure, I left a message on his Facebook page and then a second, after I noticed that the first had been removed, which was also deleted just a short time.later. For this reply, I may experiment with a request for a receipt, which is not something I normally expect to have to do, I shall also post to Dr Hilary’s Facebook page again and, in case that is removed, e-mail him at his website. I hope that these initiatives will not be seen as pestering – I am, after all, merely trying to secure an acknowledgement of my original e-mail of 31 May 2011, which you were kind enough to do, on this occasion, without such extra prompting being necessary.

May I also make a point about the generality of communication with you, which generates a level of uncertainty that you could easily eliminate? When I wrote to you, personally, on 31 May 2011 at your phil@philparker.org address, the reply came, from your “Phil Parker Team” at your info@philparker.org address, that it had been forwarded to the “relevant person.” Whoever sent that e-mail must have known that the “relevant person” is you, since I addressed it to you by name and, since the e-mail of 10 June 2011, from “The Management Team” (different from “The Phil Parker Team”, I wonder?), also from info@, refers to you in the third person, I wonder why you do not plainly respond as an individual and from your own e-mail address? Will you do this for me in future please?

I have never heard anyone use the term “equipoise,” in the context that you (or your team) do. From the rest of your e-mail, I form the opinion that, firstly, you do not believe that I am sufficiently objective to be a part of such a study, let alone lead it. I should say that my letter writing is only equally as prolific as those promoting the Lightning Process, either as clients, trainers or both, since I have only ever replied, never initiated. Secondly, that research should be conducted by “well-established researchers” within a recognised academic institution, such as a university,”to ensure that strict protocols and procedures are adhered to.”. You will not be surprised to hear that I believe that my research design assures greater such independence than the one you appear to favour and, were it not for my incapacity to hold down the job for which I am qualified and should be doing, due to M.E., I would most likely be working in such an academic institution since, apart from part-time vacation employment, that is where I have always worked. Incidentally, I notice that you do not seem to have the same concerns about the independence of your own involvement, or fellow Lightning Process trainers, whose careers depend on it, in research trials, as you do about mine.

I cannot see the logic of your call for any research about the Lightning Process to take place within the walls of a university, when it is such an artificial environment, compared with the reality of studying it being conducted at each trainer’s premises. The model of your collaboration with Dr Esther Crawley in the SMILE research trial at Bristol University (SMILE – Specialist Medical Intervention and Lightning Evaluation) is not a good one to follow as I was one of the first, but far from alone, to point out in an open letter, published in the Bath Chronicle, where the study was first announced (Will this new trialled process really aid the ME sufferer?, 25 March 2010). There has been an unprecedented amount of concern from individuals, especially parents and every single M.E. organisation, except for the one for which Dr Crawley is medical adviser, about the ethics of using children for this study and the association of some Lightning Process practitioners with an Advertising Standards Adjudication against them. I am far from the only one whose correspondence you have both consistently ignored. There was an annotated petition, “AYME does not represent the ME community and its actions have now become harmful to ME sufferers” (http://www.ipetitions.com/petition/ayme/signatures), because of its support of both the PACE trial (favouring Cognitive Behaviour Therapy and Graded Exercise Therapy) and the SMILE study, signed by more than 500 people, all of whom must be wrong if you are the only ones right. It is likely that this is an underestimate of the true level of concern because of illness and due to some being deterred by threats of legal action if they criticise the Lightning Process. It is not a reputation I would not want to attract to myself, nor the kind of endorsement I would want to rely upon for any invention of mine, scientifically or ethically.

I am, however, pleased to see that you remain true to your earlier declared willingness to have the efficacy of the Lightning Process tested for people with M.E. (Myalgic Encephalomyelitis) and I wonder if you would welcome a similar invitation from me, modified by (1) my taking no part whatsoever and (2) the trials being run in an academic institution, led by at least a PhD, possibly Professor. after a full consultation period, if I can arrange this?

I would appreciate a reply from you, Phil, in the first person, if you don’t mind. By sending copies of this e-mail to Lorraine’s and Dr Hilary’s addresses, I hope to get a similar response, just so we know what part everyone wishes to play, if any at all, now or in the future. Perhaps “Lorraine” on Daybreak may wish to cover it more fully than in the four minutes they originally afforded it? This is all I require at this stage.

Yours sincerely

John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org

 

The above originally appeared here.

 


 

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