An open AGM and some questions for Action for M.E. (Lightning Process)
On Page 4 of the Autumn issue of Action for M.E.’s InterAction magazine, CEO, Sir Peter Spencer, announces changes to the way in which the organisation operates.
Sir Peter writes, “In another significant change, inspired by your Board wishing to create greater transparency and demonstrate their accountability, our Trustees have voted to invite members to attend Action for M.E.’s annual general meeting (AGM). The first opportunity is Thursday 21 October in London and an application form for attendance is enclosed with this magazine.
“Additionally, the Board will be introducing procedures that will give all our Supporting Members voting rights regarding the appointment of Trustees and the Chair from 2011.”
How this change of policy will operate in practice remains to be seen but I would like to thank those who have lobbied long and hard for years for the right to attend AGMs, for voting rights and the right to participate in what I hope will be a democratic trustee election process.
I maintain a membership of Action for M.E. not because I support their policies or the way in which they operate but because, as a site owner, I need to know what the organisation is involving itself in and with whom, and what its policies and positions are.
There is to be a question and answer session with the board members (the Trustees/Directors) at the AGM.
Were I to attend this first open AGM, scheduled for October, I would want to raise the following:
There has been considerable public and patient group opposition to the Lightning Process pilot study for children aged 8 to 18 proposed by the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Bath (the “Min”) and the University of Bristol.
This pilot study, led by Dr Esther Crawley, with funding from the Linbury Trust and the Ashden Trust, is still pending approval by a South West Region Research Ethics Committee.
The application was submitted on 14 June. The REC meeting to consider the application took place on 8 July.
Although funding for the study had been secured last November and a press release published in early March, at 6 September, the study is said to be “still at the final stage of the ethics procedure”.
The ME Association and the Young ME Sufferers Trust issued a joint press release on 4 August, describing the proposed study as “unethical” and calling for it to be abandoned.
To date, no rigorous controlled trials have been undertaken using an adult patient cohort into the safety, acceptability, long and short-term effects of the application of the Lightning Process.
No rationale has been provided by the research team for piloting first with children and there has been virtually no information made available about the study design, objectives, interventions, criteria, recruitment process etc, for public scrutiny.
At the end of March, in response to a request for a position statement, Action for M.E. said it saw “no reason to oppose this pilot study.”
On 24 August, in response to a request that Action for M.E. set out what information it had used to inform its position on whether to support this study and what its understanding is of what the children in this proposed study would be exposed to, Sir Peter wrote:
“…Action for M.E. has not seen the research protocol for this proposal and has no detailed knowledge of the way in which this trial would be conducted if approved.”
They don’t know. They’ve bought into a pig in a poke.
Four days earlier, Action for M.E. had issued a second position statement in which the organisation wrote:
“As long as the ethics committee gives its approval, the charity supports proposals to investigate whether it is possible to set up a controlled trial to look at the Lightning Process and how it compares with current treatments for M.E./CFS in children.”
But how much does this South West Region REC actually know about the Lightning Process?
What information have the researchers placed before this committee?
With no robust data from RCTs into the application of Lightning Process in adults, how is the research team and the Research Ethics Committee considering this application in a position to determine that overall the likely benefits of this proposal outweigh any risks to child participants or that undergoing the training program would not be detrimental to their health and psychological well-being, as patients with ME and CFS?
So I should want to ask how Action for M.E. justifies sidestepping responsibility for safeguarding children as young as eight under these circumstances?
I’d also raise the following:
On Page 14 of this Autumn edition of InterAction, is a quarter page advertisement for the Phil Parker Lightning Process at the “Swallows Retreat”, in Henfield.
On Page 32, a quarter page ad for the “Rowan Centre” who until recently had been claiming on their website:
“People using the Lightning Process have recovered from, or experienced significant improvement with the following issues and conditions
“ME, chronic fatigue syndrome, PVFS, adrenal fatigue, acute and chronic pain, back pain, fibromyalgia, rheumatoid arthritis, migraine, injury, PMT, perimenopausal symptoms and menopause, clinical depression, bipolar disorder, anxiety and panic attacks, OCD and PTSD, low self-esteem, confidence issues, hay fever, asthma and allergies, candida, interstitial cystitis, urinary infections, bladder and bowel, problems, IBS, coeliac disease, crohns disease, food intolerances and allergies, blood pressure, cardiac arrhythmia, type 2 diabetes, restless leg syndrome, hyper/hypo thyroidism, insomnia and sleep disorders, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, weight and food issues, anorexia and eating disorders, multiple sclerosis, cerebral palsy, parkinsonian tremor, motor neurone disease”
Their advertisement reads “We offer a training programme with on-going support to help people improve their symptoms. The teaching is based on neuroscience and cell biology and shows you how to affect your immune system using techniques derived from NLP processes, brain rehearsal and brief meditation techniques.”
On Page 22, a half page ad for The Lightning Process with Alastair Gibson.
In June, Mr Gibson’s “Withinspiration” Lightning Process company had been subject to an Advertising Standards Authority adjudication following a complaint about unsubstantiated claims .
In March, Mr Gibson (who in September will be offering Lightning Process sessions in Bristol) had identified himself on his website as “…one of the two practitioners working with the NHS and the young people in this exciting research study”.
I am sure there will be many questions raised at this Action for M.E. open AGM next month.
I append a copy of the article “New benefits for our members” by Sir Peter Spencer.
 ASA adjudication against “Withinspiration”, June 2010
 Background to this Lightning Process pilot issue
InterAction 73 Autumn 2010
New benefits for our members
Action for M.E. is transforming how it operates so that we can reach more people with M.E. and work more effectively on your behalf. Sir Peter Spencer explains.
We really do appreciate the expertise that people with M.E. share with us. Over the past three years we have greatly increased our efforts to consult so that we can better represent your views on a wide range of important matters. However, Action for M.E. can still do more to empower members to become an even stronger collective catalyst for change.
Today, the most efficient and cost-effective way of reaching more people with M.E. is through the internet. That’s why we are creating an entirely new website, the Online M.E. Centre.
As well as multi-media communication channels, new members-only forums will be available as safe havens, where people with M.E. can reach others who understand exactly what they’re going through. We know that 50% of people with M.E. are not in contact with anyone else with the illness. We have ample evidence that putting people in touch can really help them face and share the distressing problems of isolation caused by loss of social contact and not being understood by family and friends.
From September this year, anyone renewing or joining Action for M.E. for the first time will be able to choose the features and benefits they want from their membership package. You can join or renew online, by telephone or by post.
There will also be greater flexibility by giving members a personal choice about how much they feel able to contribute through their membership donation, either by a monthly direct debit or on an annual or lifelong basis. Exceptionally, those facing extreme financial hardship may be eligible for a payment waiver. The sustainability of our new membership arrangements will be made possible through the generosity of those more fortunate who are willing to give more to enable the most vulnerable to remain part of our movement; an essential point that I want to re-emphasise.
We greatly value you as members mainly for your presence and for contributing your expertise and moral support. You are much more than a vital source of revenue. The higher our numbers grow, the stronger our voice and the greater our credibility and authority in lobbying the Government for action.
Some of our supporters do not have M.E. themselves. Many of these provide extremely generous financial donations and free expertise because they care so much about those who have the illness. We need much larger numbers of all types of member and, because all members are essentially supporting our charity, we’ve adopted the term ‘Supporting Member’ to describe all categories of personal membership. Professional membership for individuals and organisations will also be available, allowing better access to relevant information about how to support people with M.E.
AGM and trustees
In another significant change, inspired by your Board wishing to create greater transparency and demonstrate their accountability, our Trustees have voted to invite members to attend Action for M.E.’s annual general meeting (AGM). The first opportunity is Thursday 21 October in London and an application form for attendance is enclosed with this magazine.
Additionally, the Board will be introducing procedures that will give all our Supporting Members voting rights regarding the appointment of Trustees and the Chair from 2011.
This is a crucial and exciting year for Action for M.E. I hope you agree that the developments I’ve described will ensure that we continue to meet your high expectations.
I know that many people with M.E. do not use the internet. So want to reassure you: Action for M.E. will of course continue to provide printed information through InterAction and our information booklets. We will also be providing enhanced telephone support line services from October.
Source: InterAction 73 Autumn 2010 http://www.afme.org.uk