Money for Min children's study
A project looking into a chronic childhood condition has been given a £164,000 boost.
A team at the Royal National Hospital for Rheumatic Diseases has been given the money by the Linbury and Ashden Charitable Trusts for its research into chronic fatigue syndrome in children.
Led by consultant paediatrician Dr Esther Crawley, the project looks at the treatment of children with the condition, and how to help them.
They will now test whether a ground-breaking system championed by broadcaster Esther Rantzen and former rugby player Austin Healey works for children.
Dr Crawley said: "We are delighted to have been awarded this research grant.
"CFS can have a profound impact on a child's life.
"We hope that our research will enable us to understand more about this condition and how we can help those children who suffer with it."
CFS affects more than 250,000 people in the UK, and leaves sufferers feeling constantly tired with no energy.
The condition affects three times more women than men, and is most common in younger people.
More than 50 per cent of affected children are bedbound at some stage of their illness, and have an average time off school of one academic year.
Despite this, there is a limited amount of treatment available.
The team at the hospital - popularly known as The Min - provides assessment and treatment for more than 200 children each year.
Around 10 per cent of the children referred to the service are housebound and are assessed at home.
The team will be carrying out a three-day trial using the Phil Parker Lightning Process, which is designed to teach people a new set of techniques for improving life and health.
The system is derived from osteopathy, neuro-linguistic programming and life coaching.
Its creator, osteopath Phil Parker said: "We are thrilled to have the opportunity to collaborate on this exciting and groundbreaking research with Dr Crawley and her team.
"It is vitally important that all interventions that could assist children with CFS/ME to return to school and improve their health are explored.
"We hope that this study is successful and leads to further research collaborations between the Lightning Process and specialist teams like this."
The study, which will start in September, will involve interviews with the patients and their parents, and look at their school attendance.
Around 90 children aged between eight and 18 and their families will be involved, and are recruited after assessment by the team.
Meanwhile, an occupational therapist from The Min has won a national prize for her work with people with common pain syndrome.
Sandi Derham has been awarded the arc prize in rheumatology for occupational therapists, from national medical research charity the Arthritis Research Campaign.
It was in recognition of her work with people with muscle pain fibromyalgia.
She will be presented with £1,000 and a silver medal at the British Health Professionals in Rheumatology conference in Birmingham in May.
Mrs Derham won the prize for writing a paper on a multi-disciplinary fibromyalgia coping skills programme at the hospital.
The four-week programme, which is run every month, is popular with patients and has a long waiting list.
It focuses on providing education and exercise for people with fibromyalgia, and involves sessions on goal setting, pacing and hydrotherapy.
Mrs Derham was involved in developing the programme and co-runs it with senior physiotherapist Julie Russell.
The ARC prize is awarded annually by the charity to medical professionals working with patients with arthritis and related conditions.
2 Comments
by concerned, Somerset
Friday, March 26 2010, 6:08PM
“I have enormous reservations about children with this devastating neurological
illness being experimented on in this way. LP appears to me to be a from of self
hypnosis and positive thinking that aims to convince the participant that he or
she is not really ill at all.
Increasing activity levels without addressing the underlying pathogenic causes
of myalgic encephalomyeitis and the resulting mitochondrial and heart damage
can be very dangerous indeed and some sufferers, such as MP Brynmor John have
died as a result of following advice to so.
LP is marketed in a similar way to pyramid selling schemes and has been
developed by someone with no recognised medical qualifications.
The participants have to sign that they will not talk about LP. The people who
have tried to say that they have been made worse or had no benefit from it have
been threatened with legal action:
This is from last years 'Private Eye' magazine:
"M.E. sufferers were stunned recently to receive
threatening letters when they posted their views on the 'Lightning Process', a
programme that allegedly produces 'amazing results' for
people not only with M.E. but 'anxiety, panic attack, over-eating, low
self-esteem and guilt' too. When sufferers started reporting they had
paid £600 for a course that did not work for them, they received
warning of defamation proceedings if they did not recant."
Sick children deserve better than this - they deserve proper biomedical
treatment based on proper biomedical research, which is where this money should
be going.”
by Ciaran Farrell, London
Thursday, March 18 2010, 5:10PM
“lightning Process is a highly controversial training which when used according to the teaching provided by LP Trainers will, it is claimed, cure ME and a whole host of other medical conditions, although LP is not a treatment or a therapy and that is why LP is marketed as ¿training¿. Anyone wanting to undergo LP must sign a document stating that they are totally committed to being cured by LP before they are accepted for LP training. If LP fails to cure you, you are held responsible by your LP trainer for lack of commitment or for failure to understand and apply the training. This form of ¿consent¿ to treatment is not appropriate in the NHS.
LP is not regulated by any form of medial institution or establishment as it is not a treatment or therapy and it is not accredited by any educational institute or training body either. LP Trainers are only registered with Phil Parker LP¿s creator and not with any official body whatsoever. Registration revolves around the use of Phil Parker's Lightning Process logo and trademark and training materials in an agreed manner, on the basis of the Trainer paying a professional fee to Mr. Parker to do so. It is a mater of copyright and not about upholding professional medical, scientific or educational standards of practice, performance or behaviour by LP Trainers.
LP perceives ME and other medical conditions as merely complex forms of behaviour which the individual has allowed to get out of control, because according to Phil Parker, this behaviour is reinforced by a supposedly perceived physiological feedback loop between thoughts and emotions which cause the "aberrant behaviour", which according to Phil Parker produces an altered physiological state within the person, that Phil Parker believes constitutes a vicious circle. This supposed vicious circle is reinforced by the person themselves craving the altered physiological state into which their "aberrant" thoughts and emotions instil in them, thus they are perceived to be addicted not only to their "aberrant" thoughts and emotions, but also to the perceived physiological state that Phil Parker attributes to those supposed thoughts and emotions.
Phil Parker claims that LP is a supposed means of breaking a supposed vicious circle and turning it into a supposed virtuous circle which will lead the person, supposedly out of their "aberrant behaviour" which is defined within LP as illness, and back to health and wellness. Consequently, ME sufferers are trained to believe that they "do not have ME, they merely do ME", meaning that ME is treated as a complex aberrant behaviour system and not a physical neurological disease as far as LP is concerned.
LP concentrates on the application of various NLP linguistic techniques and what are called post hypnotic suggestions and triggers to reinforce Phil Parker's remodelling of severe illness and disability as merely aberrant behaviour which can be initially kept an bay, and then trained away by continuous repetition of LP. The consequence of this is that if one is to apply LP as its creator intends, then one must not acknowledge that one is in pain or suffering symptoms as this is taken to be the intrusion of the "negative" "sick" self which corresponds to the personification of the "aberrant" thoughts and emotions which produce the "aberrant" behaviours that the person is being trained to banish.
The result of this is that LP trainees/ME sufferers are effectively trained to disown and deny their pain, suffering, symptoms and illness and to believe that they are no longer ill because they are in total control of their "negative sick selves" which are the supposed repository of all their pain, suffering, sickness and disability and that they can banish this "bad" and "negative" person from their mind whenever that nasty person rears his/her ugly head in order to subjugate them to symptoms.
The Royal Society of medicine held a ¿Medicine and Me¿ type of conference event f”