Teen ‘trained’ to overcome illness: This is Cornwall

Teen ‘trained’ to overcome illness: This is Cornwall

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“It has taken Rebecca huge determination and commitment to get to this stage,” said Mrs MacDonald, who hopes new research being led by Dr Esther Crawley, consultant paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, will go some way to getting the training accepted by the NHS.*

“It really can benefit lots of people who feel there is no hope – we’re proof that you can overcome ME and CFS. Hopefully research will provide us with a better understanding of how it works and enable the NHS to support it,” said Mrs MacDonald.

*For background to this controversial pilot study see ME agenda 5 July report:

Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process)

This is Cornwall  |  6 May 2010

Teen ‘trained’ to overcome illness

A FORMER Truro teacher who made a “miraculous recovery” from being wheelchair-bound by ME has helped transform the life of a Redruth schoolgirl by ‘training’ her to overcome the same condition.

English teacher Julia MacDonald, who spent nine years in a wheelchair being spoon fed puréed food by her husband, made a remarkable recovery after taking part in a training programme that draws on the techniques of life coaching and osteopathy.

So inspired by the Lightning Process training, Mrs Macdonald now runs her own three-day courses.

Life-changing

“I became reliant on my husband for everything, then the training changed my life,” said Mrs MacDonald.

Rebecca Burns, 16, of Redruth, who recently completed the training, which is currently not recognised by the NHS, believes her own “amazing” recovery is down to the same technique.

“I was 11 when I had a bad bout of flu – I never really got over it and my symptoms got worse over time,” said Rebecca, who spent the next five years going back and forth to various clinics and hospitals hoping to find a diagnosis for her mystery illness.

“I was suffering pains in my stomach and legs, nausea, and memory loss,” said Rebecca, who was pulled out of school by the time she was 15 because her condition had become so severe.

“I was in a wheelchair and virtually housebound because I was so nervous of meeting people and going outside.

“My parents were very anxious as no one was able to identify what was wrong, then they diagnosed ME and chronic fatigue syndrome (CFS). It was a relief at first, until they said there was nothing they could do to help me.”

Desperate to find a cure or treatment for their daughter, Rebecca’s parents signed her up for the training, although sceptical of its benefits at first.

“I’m not sure they were totally convinced it would work and they didn’t want to build my hopes up,” said Rebecca who went on to make a full recovery.

“On the first day I remember feeling excited and saying to myself this will work.

“I went home and walked the dog for the first time in a year. And then on the second day I woke up and saw colour in my face. Instead of being gaunt and tired, I knew then that I had turned a corner.”

“It has taken Rebecca huge determination and commitment to get to this stage,” said Mrs MacDonald, who hopes new research being led by Dr Esther Crawley, consultant paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, will go some way to getting the training accepted by the NHS.

“It really can benefit lots of people who feel there is no hope – we’re proof that you can overcome ME and CFS. Hopefully research will provide us with a better understanding of how it works and enable the NHS to support it,” said Mrs MacDonald.

Rebecca now hopes to complete her education by embarking on a course at Truro College, something that she never thought would be possible.

For further information please go to www.lightningprocess.com or www.juliamacdonald.co.uk tel 01872 870001.

 

This is Bath  |  25 March 2010

Letters from Dr John Greensmith

Will this new trialled process really aid the ME sufferer?

Dr Esther Crawley will, no doubt, receive questions about her proposed research using the Lightning Process in children diagnosed with CFS/ME (‘Money for Min children’s study, Bath Chronicle, March 4) relating to the validity and reliability of her experimental design, her subject selection, the statistical analysis, as well as any additional particular ethical considerations of working with children.

But I have some more fundamental concerns even before these are raised.

The reality is that there is no reason to believe – whether it has any ameliorative effect on any organic illness at all – that the Lightning Process will cure, or aid recovery in, people with ME and there is a possibility that it could even have a negative influence or be harmful.

Despite attempts to give the Lightning Process some scientific respectability by claiming some theoretical chemical or neurological processes and claiming support from academic researchers, there is none that can be relied upon.

There are at least three serious problems underlying any claims for its use with ME sufferers:

(1) only hearing one side of the story;

(2) distorted statistics and;

(3) the relatives of the celebrity endorsers may not have had ME at all.

We only ever hear positive testimonials because any negative ones have been selectively edited out of the Lightning Process website, where only favourable testimonials and press coverage seem to appear.

The extravagant 85 per cent success claim is distorted, primarily because most people with ME would not be able to make it to the place where the Lightning Process is given, or have the stamina to do three days together, so are not even in the reckoning.

It is difficult to check the claims of the celebrity endorsers of the Lightning Process without possibly compromising the patient confidentiality of their relatives, for whom they claim such great success.

The most severely affected people with ME (not the CFS/ME mongrel) will not have even been considered; the Lightning Process will be promoted, in addition to as endorsed by celebrities, as a mainstream treatment worthy of study by reputable academics and yet there will have been no significant return to school, work or resumption of a normal lifestyle.

It is not true to say that if the Lightning Process does no good it will not do any harm.

For people who have had ME for many years and who have tried everything on offer that hasn’t worked, this may be yet another disappointment or even the last straw.

I hope that Dr Crawley will prove my predictions wrong.

I beg her to, at the very least, postpone her proposed research until she has addressed these serious underlying issues.

DR JOHN H GREENSMITH ME Free For All. org Downend Bristol
 

 

(Ed: An edited version of the comment below is also published on the site of This is Cornwall  in response to “Teen ‘trained’ to overcome illness” 6 May 2010.)

Comments (25)

The “Lightning Process” is controversial, unregulated and untrialled.

According to information obtained under the Freedom of Information Act, this proposed RNHRD NHS Foundation Trust Bath/University of Bristol pilot study led by Dr Esther Crawley has yet to obtain research ethics approval.

The pilot study seeks to involve children as young as eight. Children are considered a vulnerable research group and the Medical Research Council (MRC) and other institutions, like the Royal College of Paediatrics and Child Health (RCPCH) and the General Medical Council (GMC), publish specific ethical guidelines for research using children and young people. MRC guidelines are clear:

“Research involving children should only be carried out if it cannot feasibly be carried out on adults…

“…Have previous laboratory studies, animal research, studies with adults, or other data provided a sufficient basis for proceeding with research involving children?”

To date, no rigorous randomised controlled trials (RCTs) have been carried out in adults and there is no reliable data on the safety of the application of the Lightning Process in adult patients with CFS and ME.

On 4 August, two of Britain¿s leading ME and CFS charities, The ME Association and the Young ME Sufferers Trust, issued a joint statement and press release condemning this proposed pilot study as unethical and calling for it to be abandoned.

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.”

“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.”

The full statement can be read here:

http://tinyurl.com/MEA-TYMESTrust-LP-Statement  

It is feasible to carry out research into the application of the Lightning Process using adults with CFS and ME but the research team has provided no rationale for seeking ethics approval to undertake research using a vulnerable patient group first.

With no access to robust data, the research team and the Research Ethics Committee(s) considering the application for ethics approval are not in a position to determine that overall the likely benefits of the research outweigh any risks to child participants diagnosed with CFS or ME.

Furthermore, parents, and children considered competent to give consent, are not in a position to give informed consent because there is no data from adult RCTs.

It is also a matter of public interest that the Dr Crawley’s research team has sought to obtain the advice, guidance and involvement of a Lightning Process practitioner who, in June, was subject to an Advertising Standards Authority (ASA) ruling in relation to claims being made in an advertisement about the efficacy of the Lightning Process for CFS and ME.

The Advertising Standards Authority¿s remit does not extend to website content but there is public concern that there are websites for practitioners offering the Lightning Process to adults and children where unsubstantiated claims are being made that clients have “recovered from, or experienced significant improvement” from diseases and conditions which, in addition to ME and Chronic Fatigue Syndrome, are claimed to include “…urinary infections, coeliac disease, crohns disease, blood pressure, cardiac arrhythmia, type 2 diabetes, hyper/hypo thyroidism, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, multiple sclerosis, cerebral palsy, parkinsonian tremor and motor neurone disease.”

Suzy Chapman, Dorset, UK
commented on 09-Aug-2010 19:46

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