The ME Association has spoken out robustly and campaigned against the Specialist Medical Intervention and Lightning Evaluation (SMILE) trial since first learning of the launch of its pilot in 2010.
At that time we raised a number of concerns that related to carrying out a clinical trial on a very controversial treatment like this in children. Subsequently the SMILE trial went through a full ethical review and was given clearance. Nevertheless, the ME Association remains concerned about the use of the Lightning Process as a treatment for ME/CFS.
The research, which has involved children and teenagers aged 12-18 from a specialist paediatric ME/CFS service, has investigated the use of the Lightning Process in their treatment. Its findings are due to be released to the media tomorrow (Wednesday, 20 September).
The Lightning Process is a commercial treatment programme which has been promoted as a cure for ME and CFS. A combination of neurolinguistic programming and osteopathy, its exponents claim it can cure the condition in three days.
Dr Charles Shepherd, medical adviser for the ME Association, said:
“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS.
“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms.
“Others who have gone through the LP programme, report that they have spent huge amounts of money with no obvious benefit.
“It may well be that there are some people with a general fatigue state resulting from stress, emotional or psychological problems who could benefit from a ‘mind over matter’ retraining approach such as this. Such fatigue states are a separate entity and not to be confused with ME/CFS.”
He added:
“There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.
“We will be looking at the release of the SMILE trial results very closely indeed.”
The Advertising Standards Authority have upheld complaints (examples, here and here) relating to therapeutic claims being made for the Lightning Process. And the Trading Standards departments of two local authorities have also taken action over therapeutic claims made by LP practitioners following pressure from the ME Association.
We will report more on the outcome of the SMILE Trial as it becomes known tomorrow, and will aim to produce a detailed review of the study as soon as the research is published.
Please get in touch
Are you the parent of a child who has gone through the Lightning Process? Are you over 16 but went through it as a young person? We are looking for case studies to go out with a media statement tomorrow.
If you would be willing to talk to a reporter, please contact, Sarah Staples, our media relations manager, email staplessarah@hotmail.com with details of your treatment and a contact telephone number.
Image copyright: bialasiewicz/123RF Stock Photo
For information, I briefly outline our experience:
Our 12 yr old ypwme was with the Bath CFS/ME paed. team 2008-2010. We knew little about the condition at the beginning. Our ypwme followed the prescribed ‘GAT’ programme, with some ‘GET’ elements, which led to continued deterioration, high inflammation, and the development of JIA (juvenile idiopathic arthritis). At one appointment L.P. was discussed, our ypwme expressed unwillingness and was not keen, so we were told “don’t rule LP out when you are improving and a bit better”.
At that time we knew of two youngsters (14yrs, 16yrs) who had done the L.P. 3 day course ( with different LP staff in different parts of the country); surprisingly to us both had the same follow-on in that both did the course in an August/Sept.( the view being to get them back to school asap – this was to be part time), they then did try school for some months, but then both were relapsed at home from the next January onwards for that academic year. Both did, over years find their own way of managing and did improve, one luckily had a huge improvement eventually.
The other difference between these two youngsters and ours, was that they’re original symptoms did not begin after a virus, and they did not have all the symptoms our yp did, such as severe headaches, muscle pain, light sensitivity, etc. etc.
Until ME Association and other advocates start demanding physical and physiological exercise assessments we will continue to flounder in no mans land at the mercy of the bps mob. All the bps mob need to do is to get a bunch of kids to say that they ‘feel better’ and bobs your uncle they are cured. The problem is that the kids are only cured if their physiological response to exertion and health returns to normal. Since physical functional capacity can be objectively measured why aren’t we demanding it????
The 2 day CPET test is too onerous…..agreed BUT there are many other measures and less onerous ones can be devised……e.g. measure metabolic rate at rest, measure it at the patients typical maximum activity level…repeat the next day!!! Measure meatabilic rate at rest, while sitting, while walking…do the 6 minute walk test measure impact on HR rate trace…..A unique disease with a major post exertional component needs a test that is designed to illustrate the impact of exertion..Time to take the arguement to the bps mob, time to attack, STOP just defending……time to grow some ovaries!!
PS I love what MEAssociation is doing but think the underlying premise that if we educate the scientists and point out the flaws in what they are doing hasn’t worked for us. I think that we now have enough evidence to “attack” the lack of objective measures…..the bps mob are fudging their science to fit their storey…..yet all we need is objective measures to expose the truth. The NHS ME/CFS clinics can NOT provide data on the outcome measures from their clinics….they don’t measure, report or collated outcome data….so 7 partially completed surveys from un-named individuals are setting NICE health policy for millions of UK residents….no objective data required???? Surely the tax payer deserves better??? Let alone the patients.
Wouldn’t it be good to get them to consider exercise intolerance and imaging of encephalitis aswell?
Also useful to see the overlap between those with EI and those with encephalitis as per imaging. This would also go some way toward deepening the discussion between the exercise intolerance definition of ME favoured by some and the neuroinflammatory model favoured by others.
The Lightning Process is extremely damaging because NLP techniques are powerful at motivating and ‘changing beliefs’. If you take someone who has pneumonia, motivate them to change their belief that they are sick, and to get up and exercise, that’s a pretty good way to kill them. ME/CFS is a disease in which, according to the IOM, any kind of exertion can cause multisystem damage..as attested by the thousands of the severely ill who became so as a result of GET. The Lightning Process is serious medical abuse.
NLP should be used to help PWME to ‘reframe’ exercise as toxic, rest as the most effective weapon in the ‘fight against ME/CFS’, and to keep their self respect while having to lead the invalid life- style which is their best chance of kickstarting a path towards improvement.
http://www.positivehealth.com/article/cfs-me/me-cfs-ethical-and-unethical-uses-of-nlp