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Article: An MD on the Lightning Process

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 30, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  2. priya

    priya permanently dislabeled

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    If the LP works for some people, great! My issue with it is that it is only available to those who can withstand it's rigors. I used to be paralyzed, unable to speak or tolerate any sense perception. I'm now better, still 100% bedridden for years and can't cope with an 8 hr. visit from an LP coach. I learned some of the techniques myself from a post and applied them about 80 times. after one day, i could listen to music. it was helpful, but i needed more info and coaching; i wrote a letter to Maxine Henk (sp?) but heard nothing back. that was a year ago. now i'm trying the Gupta approach as it seems to fit more sizes.
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  4. Yawn

    Yawn

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    I have been following this thread with interest -

    Having an 11 year old with CFS - there is absolutley no way that I would allow my son to be part of the LP pilot scheme. As others have said any pilot project should undertaken on adults NOT vunerable , ill children. The last thing a sick child needs is to be told they are not getting well because they are not trying hard enough or doing the process properly!!! Or worse feeling they have to say they are well rather than let people down.

    Having ME myself I have an broad awarness of treatments etc - but my concern is for families where a child is sick and they do not fully understand what ME is- especially here in the UK where the understanding is awful. As a parent i know how desperate I am to see my son well- and would I be willing to let him participate in the LP study if I did nothave wider knowledge - Yes i proabably would!

    I think any ME charity that is not against this is a disgrace. The only charity that we are invovled with is the Tymes Trust - who I know have major concerns over the LP study and are doing what they can to highlight their protest.
    Have any studies been tired with adults?
    I think studies into the LP should be done - not because I think they cure ME but to show what it can be useful for and its limitations.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I will have to make this a quick response, as I am tied up today with other issues.

    Action for M.E. has publicly stated that it does not oppose this study.
    The ME Association is silent on its position.
    AYME describes the study as "interesting".
    Invest in ME opposes the study.

    No other patient organisation has issued a position statement.

    I have seen nothing by way of public statements from TYMES Trust on their position and have still to write to Jane Colby for a position statement. I would be interested to know what TT has been doing to highlight its concerns.

    No independent, rigorous, RCTs have been undertaken yet in adults. There was an informal, uncontrolled pilot carried out in 2006/7 by Prof L Findlay. No results were formally published and no proper follow up RCT was undertaken.

    If studies are undertaken they should be undertaken in adults - not children.

    I now have the FOI response and I will update in the next few days.

    As a carer, myself, I wish your child all the best for recovery.

    Suzy
     
  6. Yawn

    Yawn

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    Hi Suzy,

    I am not sure what the Tymes Trust have done publicaly - re the LP study. But I know they are not in favour of it. I spoke to the trust recently as I wanted to know who I could write to to express my concerns as a parent about the study.

    As you say Jane Colby will hopefully be be ale to tell you more.
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thanks, I shall be writing to Jane this week. Others have also discussed their concerns with her.

    Suzy
     
  8. Bob

    Bob

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    Hi Yawn,

    Thanks for your interesting post...
    You've made a really clear outline of the concerns surrounding carrying out LP on children.

    Unfortunately, there is so much ignorance surrounding the technique, and it's implications, that I should think that 90% of parents won't have the information they need to make an informed decision about letting their child embark on the study... Especially as it is being carried out by a 'respected' member of the medical profession with a high status. People tend to respect their doctors, and take their advice, often without doing their own independent fact finding mission.

    As far as I'm aware, no studies have been completed on adults so far...
    So, as far as I am concerned, this is one of the major issues surrounding carrying out an LP test project on children, before LP has been medically evaluated on adults.

    One study on adults was started by Prof Findley, but apparently that was stopped prematurely and Prof Findley set up his own (lucrative?) version of LP for his patients instead, charging them 1000 a go. I don't know why he stopped his study and set up his own LP course, but I could have a guess.

    Bob
     
  9. coxy

    coxy Senior Member

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    I do know that at least one of the tymes trust phone ladies child has recovered via the LP though and jane colby is aware of that, The child in question has been well for the past 4 years now even after having a positive Dr chia endomspecy (sorry brain gone can't spell), it was through talking to her that actually encouraged me and my son into trying the LP, although the lady in question did point out to me that the tymes trust can't recommend any particular therapy & it was my decision entirelly ( spelling again, as you can see my brain fog has now returned, 3 months after dioing the LP!)
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You've mentioned this before, Coxy, and several of us had concerns, then, that a volunteer for The Young ME Sufferers Trust help line was discussing their personal experience of LP with a caller, given the position held by TYMES Trust, as an organisation.

    Suzy
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yesterday, I received the response to my 16 May 2010 FOI from the University of Bristol.

    As expected, very few of my questions have been answered and FOIA Clause 22(1)(a) is being cited:

    "This information is intended for future publication when the study protocol and other related documents are published online. It is therefore exempt from disclosure under section 22(1)(a) of the Freedom of Information Act."

    They are permitted within the Act to withhold information and materials under this clause. However, I would query whether all the information I have requested will be covered by the study protocol, patient information etc, and I would also query whether the funding application documents and any accompanying documentation that forms part of the application, and the ethics approval documents would be published as part of the pilot study protocol - I do not think this is standard practice.

    It is evident that the set of responses sent to me, yesterday, are responses not to the revised request that had been receipted on 17 May, but responses to the original request for information that I had submitted to Bath and which had been responded to by Bath on 11 May 2010 (who took the full 20 working days to inform me that the information requested is not held by that institution).

    At no time was I informed that my request to Royal National Hospital for Rheumatic Diseases, Bath would be forwarded to the University of Bristol FOI office or would be dealt with by that office.

    Since these are not the revised questions as submitted to Bristol as a separate request, the responses are incomplete and do not accord with the questions as set out in the email request of 16 May 2010.

    Since there has been an administrative error and since the responses do not relate to the questions as submitted on 16 May I have asked Bristol to provide me with an amended response.

    And it is this response that I shall publish, when it arrives.

    What I can tell you now is that:

    "The study is currently going through the ethics approval procedure and this
    information is expected to be published around August / September 2010."

    So the pilot is still waiting on ethics approval.

    Suzy
     
  12. V99

    V99 *****

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    It has been suggested to me that any concerns should be voiced to the 'children's safe guarding unit' of the local authority in which the research is taking place. If it is taking place in the UK - which I imagine it is.
     
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thanks, yes, I will look into this and discuss it with a colleague.

    I haven't been provided with the study protocol, and the question:

    13] Through what means will potential study participants be identified and recruited:

    received this response:

    "This information is intended for future publication when the study protocol and
    other related documents are published online. It is therefore exempt from
    disclosure under section 22(1)(a) of the Freedom of Information Act.

    "The study is currently going through the ethics approval procedure and this
    information is expected to be published around August / September 2010. We
    cannot see that there is any public interest in disclosing this information
    before that time."


    The March press release ( http://www.bris.ac.uk/news/2010/6866.html ) states:

    "This will be the first study of its kind in this area, and the team hopes to establish a basis for a larger scale multicentre research project."

    ("area" presumably meaning the Bath area)

    It's not clear whether participants might also be recruited from outside this NHS Trust area.

    A document from the funders supplied in response to a request submitted by someone else, confirms that the value of the Ashden Trust's award is 44,000 over three years - 09/10, 10/11, 11/12.

    *Which suggests that the pilot study does not expect to recruit all 90 projected participants within the period of one year.

    The duration of the pilot is not confirmed because the response to the question:

    20] Anticipated project completion date:

    was:

    "This information is intended for future publication when the study protocol and
    other related documents are published online. It is therefore exempt from
    disclosure under section 22(1)(a) of the Freedom of Information Act.

    "The study is currently going through the ethics approval procedure and this
    information is expected to be published around August / September 2010. We
    cannot see that there is any public interest in disclosing this information
    before that time."


    Suzy

    ETA *This research also incorporates the first study on health economic cost of this condition in children. Because the protocol and study design/aims and objectives have not been provided, it is not known whether it is proposed that this part of the study is to be carried out during years 1, 2 and 3 of the funding award.
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  16. kermit frogsquire

    kermit frogsquire *****

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    Cort, I think it is utterly disgusting that you are, in a fashion, promoting this process and others like it, Gupta's Amygdala.

    All of these treatments are absolutely illegal under UK law, and may I add US law. Under The Consumer Protection from Unfair Trading Regulations 2008 it is an offence to aggressively market such treatments to vulnerable groups. Furthermore it is criminally illegal to claim to treat or cure any disease if it has not been established by independent medical studies. Furthermore all official health organisations outlaw testimonials and other means of selling, as such Gupta was forced to remove any association with his hypnotherapy organisation from his site.

    What you may not know is that UK authorities are extremely lax in upholding the law, in fact they are next to useless, which is why the UK has the rather unenviable nick name internationally of being called 'Treasure Island', as it is open season here for all con men and charlatans.

    Coming to that, in just a few years Gupta has owned a string of dating agencies, property development firms and goodness know what else. Many of them bankrupted. His latest get rich quick scheme is Amygdala retraining.

    If I made up a pill that was nothing more than an M&M, and started advertising that it was a secret recipe that would cure everyone with ME, then put up some testimonials, would you advertise that. And yes M&M would cure many people that think they have ME but really have depression, it is called the placebo effect. In fact I'd have a cure rate of about 30% and up to 50% if I advertised it with enough mysticism as per the Lightning Process.

    Now imagine this was cancer and not ME, do you think any one would stand for M&Ms being sold as cures for cancer?

    I think quite honestly you have destroyed any credibility you have within the ME community. ME needs funding, it needs research and it needs ALL treatments that claim to be a cure to be VALIDATED before they are advertised to others. Furthermore before anyone says they "felt better" they should have a long think to themselves whether in fact it was all in their head, and really a placebo response.

    For the record I have done the Lightning Process. It had zero effect. In my group there were several people with obvious bipolar disorder, and the people that had ME that said they felt better (due to the unbelievable pressure put on them in the seminars) really were not objectively better at all.
     
  17. Min

    Min Senior Member

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    LP is sold as a training programme, not a treatment, which is how it circumvents the law - I don't know about Gupta's Amygdala retraining.
     
  18. kermit frogsquire

    kermit frogsquire *****

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    That is incorrect Min, I am a lawyer. For a start the difference between "training program" and "treatment" is wholely artifical and would not stand up in the law. For instance CBT is known as a treatment, a talking treatment, and not training program, yet it is very similar to LP. Second, even if it was a training program, the Consumer regulations still fully cover such services.

    The Consumer Protection from Unfair Trading Regulations 2008 are very clear - Prohibition on 31 Specific Commercial Practices that are in all Circumstances Unfair (Schedule 1). One of the 31 commercial practices which are in all circumstances considered unfair is “falsely claiming that a product is able to cure illnesses, dysfunction or malformations”. The definition of “product” in the Regulations includes services, so all forms of medical therapies, services and training programs are covered.

    With regards to falsely claiming a product can cure illness, the onus of proof is on the person claiming that it cures the illness and profiting from the product. Sufficient proof must be established, and given that in ME surveys the LP has one of the highest dissatisfaction ratings I would think that Phil Parker and Gupta would not meet the proof needed.

    As I said above, this all comes down to Trading Standards upholding the law. If you want to get them to act please phone London Trading Standards and make a complaint against both the Lightning process and Gupta. Only if enough people complain will they act. It doesnt matter that it is illegal, they work on a volume of complaints system.

    telephone on 08454 04 05 06 or online at www.consumerdirect.gov.uk
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    ME Association and The Young ME Sufferers Trust joint Press Release

    ME Association and The Young ME Sufferers Trust joint Press Release


    Press Release

    Scientific trial involving children and the Lightning Process is unethical, says joint statement issued by two national ME charities

    Wednesday, 04 August 2010 17:15


    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 Britains 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 Officers 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

    References:

    '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-an...ions/2010/6/Withinspiration/TF_ADJ_48612.aspx
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi kermit frogsquire,

    As you'll see from the ME Association and The Young ME Sufferers Trust joint press release (4 August 2010) the ME Association has been liaising with a number of Trading Standards offices.

    Text on the site of the Rowan Centre has been changed within the last few days, as set out in this post:

    http://www.forums.aboutmecfs.org/sh...dy-on-Children&p=108044&viewfull=1#post108044

    Several testimonials that had appeared on the Rowan Centre site, in July, by Professor Rajesh Munglani, MB BS DCH DA FRCA FFPMRCA. Consultant in pain medicine, West Suffolk Hospital and Nuffield Health Cambridge Hospital, had been been removed by 3 August. (I have copies of webpages).

    Also in that thread, at this post, is the Advertising Standards Authority (ASA) Adjudication ruling (16 June 2010) against an advertisement by "Withinspiration". The LP practitioner associated with this company is Bournemouth based, Alastair Gibson.

    In March, Gibson, had stated on his site that he was one of two Lightning Process practitioners involved in the Bath/Bristol pilot study. But that information has since been removed from his website.

    (Ethics approval for the Bath/Bristol pilot study is still pending and a decision is anticipated in August/September.)

    http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=99417&viewfull=1#post99417

    You've mentioned that you have undertaken the Lightning Process yourself. I'd be interested in an account of your experience/impressions, if you were well enough to provide one. You can PM me, or contact via my ME agenda website Contact form.

    Suzy
     

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