Radio 4: Leo, Rusty and ME: You and Yours follow-up
On Monday, 23 July, The Times published an article in the Health section of Times2 called “Mum, nothing works. I can’t move”. You can read and comment on the article here
This article was a tie in with the Radio 4 programme “Leo, Rusty and ME”, produced by Leo’s BBC radio producer mum, Jane Ray, and broadcast on Friday, 27 July.
The programme was structured around clips from audio “diaries” begun by the family following the onset of Leo’s illness, two years ago. When Leo was sufficiently recovered to undertake the travelling and cope with the length of the sessions, he was persuaded to try the “Lightning Process”. According to The Times article, Leo, now 13, has returned to school part-time. We wish him all the best for a complete recovery.
On Monday, 30 July, BBC Radio 4 presented a follow-up to this programme during their regular edition of You and Yours.
Professor Leslie Findley, Essex Neurosciences Unit and a medical adviser to AfME and Gerri de Vries, a Lightning Process practitioner, took part in this follow-up item along with Leo’s mother, Jane. Dr Trish Taylor of AfME contributed via a phone link. There were no contributions from any other organisations or individuals, although we were told that the ME Association had been approached for background information.
A large proportion of the slot allocated to Monday’s follow-up was given over to extracts from the previous Radio 4 programme “Leo, Rusty and ME”, including the section where child and adolescent psychiatrist, Dr Sebastian Kraemer, is quizzing Leo during a hospital appointment and the section where Leo’s friend encourages him to try Phil Parker’s “Lightning Process”.
Towards the end of Monday’s follow-up (billed as “ME latest knowledge”) You and Yours presenter, Peter White, raised the issue that in Friday’s broadcast of “Leo, Rusty and ME”, listeners did not hear anything about any other types of treatment for ME/CFS [other than LP].
Instead of picking up on Peter White’s lead and opening out the discussion by bringing in the lack of effective treatments and the urgent need for funding for biomedical research, Professor Findley says something about there being no controlled trials and anchors the topic firmly back to LP by introducing a reference to a pilot study being undertaken into the Lightning Process. No-one else has been invited onto the programme to talk specifically about ME research into causes and treatments, recent UK and international developments or to explore the controversy over the dearth of MRC funded biomedical research, and Findley has the floor.
Having already talked about how ME can be successfully “managed”, Professor Findley goes on to talk about physical and psychological “perpetuating factors”, citing anxiety, stress, depression, problems with relationships…
In March 2007, AfME’s magazine, InterAction, ran an article on the Lightning Process [Issue 59, page 39] in which Professor Findley states that he is “…undertaking a clinical study into the [LP] process”. In his contribution to this InterAction article, Professor Findley goes on to say:
Over recent months, Gerri de Vries, an LP practitioner and occupational therapist with huge experience in fatigue syndromes, and I have been assessing individuals and offering treatment to those we consider likely to benefit from the process. Each patient has been properly assessed in advance and is being followed up by a therapist and physician. This is an open clinical study to try and provide data to argue the case for a proper clinical trial in the conventional sense. We hope to have some data to publish over the next few months.
But Professor Findley omitted to disclose, in yesterday’s broadcast, that he is overseeing this LP trial. Nor was it disclosed that his colleague, Gerri de Vries, also taking part in the programme, is not just an LP practitioner but also working on this trial with Professor Findley. Their professional interest and their personal involvement with this pilot study using Lightning Process techniques should have been transparent. This issue has been raised with the You and Yours production team.
Who is funding this pilot study and how much is it costing?
The chances are, Phil Parker won’t be forthcoming. So we will rely on Professor Findley to supply this information and we’ll report back with his responses.
In February 2007, ME agenda had emailed Phil Parker with a number of questions after spotting the following on Phil Parker’s LP website:
We are pleased to report that we are currently undertaking research, using established scientifically valid research protocols, under the scrutiny of a leading authority in the field of M.E/CFS.
We asked Mr Parker:
Who is the Principal Investigator, please?
Who is the “leading authority” in ME/CFS who is supervising this research project?
Which research criteria are being used in order to select subjects, ie. Oxford, Fukuda, Canadian?
Myalgic encephalomyelitis is indexed in the WHO [ICD] under G93.3, what condition is myalgic encephalitis?
In his response, Mr Parker told us that the “leading authority” in the field had specifically asked that the details of the project should not be fully reported until the findings were in. Mr Parker also stated that it appeared that there was such interest and bias within the field that revealing too much at this stage would cause discussion that would be inappropriate to where the project was at that time.
In response to our question about criteria he responded that the diagnostic criteria used is Fukuda and that the data set uses a range of standard tests including HADS, SF-36 and VAS. Mr Parker ends by asking us if we could we let him know why we are asking these questions?
Why should Mr Parker be apparently so uncomfortable about releasing basic information about a research study and why did Professor Findley and Ms de Vries not disclose their interest in this trial in yesterday’s broadcast?
It was noted that the illness was introduced at the start of yesterday’s You and Yours item using the term “Myalgic encephalitis” (apparently Mr Parker’s preferred term) and not as “Myalgic encephalomyelitis”, as more commonly termed, and as indexed in WHO ICD: G93.3. This point has also been raised with the production team.
Rather than present a balanced overview of “latest knowledge” this follow-up came across as little more than a promotion for NLP and the “Lightning Process”; Ms De Vries also manages to slip in a plug for Phil Parker’s new book.
If you have concerns about the coverage of ME via this programme please contact the You and Yours production team.
You can listen again to Monday’s You and Yours here
[The ME section starts around 20-25 minutes into the programme.]
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What concerns me more is – I don’t know how to complain about your negative coverage of the Lightning Process. I undertook the training after 15 years of illness and it gave me my life back. I have also seen lots of other people since – including friends who I have referred – get their lives back and full health restored. Surely you should be asking how best to support research into it, rather than being so negative. There are literally hundreds of people, who go against yours and the ME Associations (off the record) stance on the Lightning Process. It takes bravery for these people to do this. You are supposed to support them, but your negativity does the very opposite.