ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
266 Port Road,
South Australia 5007
Ph: (08) 8346 3237
(Mondays and Thursdays,
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
The Lightning Process
Saturday 7 August 2010
TYMES Trust/ME Association joint statement on Lightning Process study in children
The joint statement is included below. The first part is a quick overview of claims made on Lightning Process websites. Many thanks to Suzy Chapman for being so vigilant!
The joint statement issued by The TYMES Trust and The ME Association says that "[The Lightning Process] claims to be effective for ME/CFS and psychological problems such as anxiety, stress, depression, guilt, low self esteem".
However the Google cache of a LP webpage [here] shows that the claims made extend far beyond ME/CFS and psychological problems:
From the page "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"
Also included on this page are a whole host of unsubstantiated, unproven and outright ridiculous claims:
"It is a training programme not a therapy or treatment, so you learn and apply powerful techniques to influence the autonomic nervous system, to correct hormone imbalances and improve immune function...The recovery success rate for people completing the training is high (the majority of our clients are nearly.or completely recovered)...The Lightning Process techniques include neuro linguistic programming (NLP), life coaching and visualisations...It is through repeatedly doing the Process that the old neural pathways die away and the new ones become established, which in turn leads to improved immune function...When you learn to use the Lightning Process techniques and apply them effectively, you address the underlying cause of the problem, this is why it works well for so many illnesses and issues...You may have even been told it is difficult or impossible to improve your health but in our experience, all the people who have attended the programme here at the Rowan Centre have enjoyed significant improvements or complete recovery."
A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and The Young ME Sufferers Trust.
In a joint statement issued today (4 August 2010), the two charities say:
We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.
The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged eight to 18 with ME/CFS into a randomised controlled trial (RCT) comparing the Lightning Process with specialist medical care. It is planned that over 90 children aged between eight and eighteen and their families will be involved in the study.
The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups. The document ‘MRC Medical Research Involving Children’ is quite clear on this issue. It poses the question: ‘Does the research need to be carried out with children?’ In answer, the MRC states: ‘Research involving children should only be carried out if it cannot feasibly be carried out on adults.’
The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process.
A survey of 4,217 people carried out by the ME Association on the management of ME/CFS found that over a fifth of those who had tried the Lightning Process were made worse (7.9% slightly worse,12.9% much worse). If any trial is to be held, it should first be on adults, who can give informed consent. No rigorous RCTs into the application of the Lightning Process have ever been undertaken.
Despite many years of scientific research there is still no single diagnostic test for ME/CFS, nor is there a curative treatment. The theory upon which the Lightning Process is based, together with its claim that the prolonged nature of the illness is caused by ‘the adrenaline, nor-adrenaline and cortisol loop’ is not scientifically proven. Moreover, the Advertising Standards Authority recently ruled that an advertisement in an internet sponsored link containing claims of its effectiveness by a Lightning Process practitioner should be removed. We understand that the practitioner will be involved in this study and we find this concerning.
The Trading Standards departments of two local authorities have also taken action over therapeutic claims by Lightning Process practitioners following referrals by Dr. Charles Shepherd of the ME Association. The Lightning Process calls itself a training programme, not a medical treatment, combining concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. It claims to be effective for ME/CFS and psychological problems such as anxiety, stress, depression, guilt, low self esteem. Any evidence for this effectiveness on ME/CFS is purely anecdotal. ME has long been classified by the World Health Organisation as a neurological illness, not a psychological condition.
We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ‘process’ with adults.
Furthermore, we have serious concerns about the primary outcome measure, which is school attendance after six months. Children have a legal right to ‘suitable education’ for their particular needs, which may or may not include school attendance.
The statutory guidance ‘Access to Education for Children and Young People with Medical Needs’ explains that whilst it is desirable for children to be educated in school, other forms of education must be provided for those who need it. The Chief Medical Officer’s Working Group Report on CFS/ME (DOH 2002) stated that most children with ME will need education in their homes at some time, potentially for a considerable period. In 2009 the Education White Paper ‘Back on Track : A strategy for modernising alternative provision for young people’ included virtual education. Chapter 7, ‘Learning from the best and supporting innovation’, spoke of ‘e-learning and virtual provision, particularly for pupils who cannot attend school due to health needs.’ Accessible education is also provided for in disability discrimination law.
If school attendance is the primary outcome measure of this study, families involved may then feel pressurised into avoiding alternative forms of education which would benefit their children and to which they are legally entitled.
For all these reasons, it is our considered opinion that this study of the Lightning Process in children is unethical and should be abandoned.
NOTES TO EDITORS
'£164,000 awarded for new research into the treatment of a chronic childhood condition'. Press release issued by The Royal National Hospital for Rheumatic Diseases, which can be found at their press release page: http://www.rnhrd.nhs.uk/index_sub_menus/news/news_menu.htm
Advertising Standards Authority ruling: http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx
The above originally appeared here.
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