1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Lightning Process to be Evaluated in Research Study on Children

Discussion in 'General ME/CFS News' started by Jenny, Mar 4, 2010.

  1. Sam Carter

    Sam Carter Guest

    Messages:
    297
    Likes:
    192
    Hi Bob,

    I think the MEA and anybody involved with it really should be aware of the damage caused by the claims made by Phil Parker and his therapists.

    I would argue that if they cannot see the harm caused by Parker (or Eaton or Mickel) they should not be representing us; what is required of the MEA is a clear warning that LP, RT and MT are exploitative, bogus remedies to be avoided by anyone with genuine physical disease.

    Sam
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,697
    Likes:
    5,495
    People like Charles Shepherd within MEA have made lots of complaints about LP e.g. trading standards. Neil Riley wrote an editorial complaining about a LP presentation at a local group.
  3. Sam Carter

    Sam Carter Guest

    Messages:
    297
    Likes:
    192
    Has Charles Shepherd ever explicitly warned people with ME to avoid the Lightning Process? That is the kind of guidance I would expect from the medical advisor of a national ME charity, just as I would expect them to advise against GET and CBT based on the anxiety / deconditioning model.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,697
    Likes:
    5,495
    To answer your first point - I can't remember. I think he is stronger than most doctors in pointing out GET etc can be dangerous. I don't recall him being positive about LP and I know he has made complaints to trading standards agencies and generally has said I have been happy with.
  5. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    Hi Bob,

    I can only assume that you are not familiar with Phil Parkers NLP career - which floundered around as most of them do -until he hit the headlines (thanks to celebrity endorsements) with the letters ME, which the national papers are very keen on. Parker's entire Training company rests on the foundation of promoting Lighting for ME - his history of making extravagent claims of a cure for ME and goes back six or seven years. parker did nothave an NLP choaching company before.


    its truly incongrous to accuse a seven stone woman who can barely get out of her home of "attacking" a man who has just demonstrated such extreme physical resilience. Ed Stafford started his journey with the objective of raising money for ME biomedcial research - and ended it endorsing a man who has gained more publicity for his bogus and damaging ME 'cure' than all the other bogus cure people put together; and for portraying ME as recoverable from because Parker claims that so called 'negative thoughts' cause and sustain it.

    No you cannot separate out Parkers businesses because the Peak Performance business rests on the foundation of the publicity parker gained from claiming to cure ME.

    The fact is that Eds mother is Vice Chair of the MEA and of course Trustee. if that was not the case then Ed would not have put the MEA as one fo the charities taht he hoped would benefit from the fundraising by donations from his walk.

    I have been spelling out exactly waht bad new Lighting would be/has become for many years, from when parker was merely a newcomer in the snake oil cure business. But Parker is so smooth tongued, and the ME community is so easy going, that frankly I am not surprised that now it is well funded to the tune of 162,000 for Lightning research.



    I predict that Parker will gain immesurably by Ed Staffords new career as Motivational Speaker. And we will lose yet again.

    I stick by the statement that the MEA should have raised the matter with both Barbara Stafford and Ed long ago.

    As the reson taht Ed
  6. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    The MEA offical statement together with the Tymes Trust that condemns the Lighting Trial on children as unethical.

    http://www.meassociation.org.uk/?page_id=1341

    Study involving children and the Lightning Process is unethical, says joint charity statement

    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 yesterday evening (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

    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
  7. Sam Carter

    Sam Carter Guest

    Messages:
    297
    Likes:
    192
    Hi Dolphin,

    I don't want to single out Charles Shepherd or the MEA but I expect medical advisors of national ME charities to have an unequivocal position with respect to GET / CBT & the "magic" therapies of LP/RT/MT: I want to hear them stating clearly that people with ME should avoid them.

    AfME have "gatewayed" PACE. AYME have gatewayed Crawley's SLIME trial. The MEA have an opportunity to distance themselves from this kind of nonsense and should take it.

    Sam
  8. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    .



    Bob wrote: "Wildcat, you seem to be assuming that everyone working for MEA would be aware of all the issues surrounding LP."



    I don't go in for assumptions, preferring primary source evidence.

    The MEA has only one full time employee, Tony Britton.

    The MEA has Trustees, here:
    http://www.charity-commission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0


    and a medical advisor, Charles Shepherd.


    As the MEA made an official condemnation of the Crawley/Parker Lighting Trial as unethical, it could be well be assumed that the Trustees are well aware of the MEA's position on Lightning.

    An MEA Trustee wrote an interesting account of a Lightning Process promotional introductory talk by an LP Trainer a few years ago, that can be read here:
    http://www.sayer.abel.co.uk/LP.html
  9. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    Hi Wildcat,

    I know that the MEA is against the LP trial on children but I'm still not clear what the MEA's position is on LP is for willing adults...

    Are you not assuming that all of the trustees (I meant to include 'trustees' when I said "everyone working at MEA") are fully aware of all of the issues surrounding LP in relation to adults, as opposed to the specific issues relating to the LP trial on children?

    The trustees might be aware of some of the specific issues surrounding the trial on children, although it's very complex so they might not be totally clued-up, but the trustees might not have a clue about any of the issues surrounding LP generally.

    Most people don't seem to be fully aware of all the issues surrounding LP. I think that this is the biggest problem with getting people on our side about LP... Most people just don't, or can't, understand the issues about LP.

    I'm just pointing this out, that's all.

    Bob
  10. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    Hi Sam,

    Yes, I totally agree with you...

    I was just pointing out that the trustees might not be aware of all the issues, even though it would be helpful if they were.

    Trustees do not have to have a clinical or scientific background, and they might not understand these complex issues like we do, as patients. Or the issues might not have been brought to their attention or explained to them. I'm talking about LP for adults, not the LP trial on children on which the MEA has clearly stated its position. I don't know what the MEA's stance is, on the LP course generally (i.e. for adults.)

    But I totally agree with what you are saying Sam, that the MEA should understand all of the issues if they are to represent up properly.

    Bob
  11. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    Hi Wildcat,

    Well, first of all, if you read what I said carefully, I didn't say that you attacked him, either physically or verbally... But, actually, you do seem to be attacking Ed's character, verbally. That's what it seems like to me anyway, and it didn't sit comfortably with me, so that's why I commented on what you were saying.

    I just wanted to point out some things to make sure that you have considered everything before you, and others, continue to post negative comments about Ed. I think it is unfair to attack Ed until you have contacted him personally, and discussed the issues with him.

    And, personally, I think you are being a little unfair towards him anyway, but that is just my opinion.
    He raised money for a good cause, and he is not promoting LP in any way, and he does not pretend to represent the ME community.

    I hear what you say when you say that promotion for Phil Parker is the same as promotion for LP, but Ed is free to embark on an NLP training course, and to talk about it, if that's what he wants to do. He isn't a representative of the ME community, nor does he pretend to be. So I'm not sure if it's appropriate to use a public forum to criticise him. That's just my opinion.

    And, like I said earlier, the trustees of the MEA might not be aware of all the issues with LP, even though, in my opinion, they should be.
    I think that the MEA's stance on LP is more important than anything Ed is doing, who doesn't represent the ME community in any way, so maybe we should direct our energies there, rather than at an individual who isn't connected to the ME community.

    If you want to publicly write negative things about Ed, then that's up to you, but I personally think that he should be made aware of the issues before you carry on, and given a chance to respond to your concerns.

    One of the reasons that I questioned your approach to the subject is that your posts prompted someone to use the word 'disgusting' in relation to Ed. I thought that there might be confusion that Ed is promoting LP, which he isn't, and that he is a representative of the ME community, which he isn't. He does not have any input into our community at all.

    I just think that there are more constructive ways to approach this issue, such as informing all the relevant parties exactly what our concerns regarding the Lightning Process are.

    Bob
  12. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    Hi Bob,

    why don't you read through this thread, all the evidence on it, all the links, and the other Lightning threads on Phoenix, and on other forums, to gain an understanding of the background to all the the issues around and within LP, going back to Parkers involvement with Alex Howard of the Optimum Health Clinic back in 2003 (when Alex was just a beginner in the NLP scam world)?

    LP has been a bone of contention in the ME community for many years and there is a great deal of evidence of Phil Parkers tactics in establishing his NLP coaching empire on the foundation of the letters ME.
  13. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    Hi Wildcat, I'm not disagreeing with you there...
    I'm just questioning whether what you've said about Ed is the most constructive way to deal with this specific issue.
    Do you think it might be better to PM each other if we are going to continue this discussion, cos we are getting off-topic?
  14. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    Hi,

    I think that Ed should have been made aware of the issues in his endorsing Phil Parkers Group of Companies, by his mother and the other Trustees of the MEA before publicly endorsing Phil Parkers Company.

    Interesting that you should be so keen to defend Ed and "attack" me.
  15. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    I do think that anyone who sees fit to accuse me of "attacking" should at least make themselves familiar with all of Phil Parkers statements re ME and Lightning of the last seven years. And also make themselves familiar with his newest moves to establish himself in the "cultural creatives" scene in which Ed is also getting a name as an example of the "mind over matter" physical Peak Performance culture. Evidence already posted here.
  16. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    I haven't noticed anyone else bringing the issue to the attention of the ME community, many of whom have now said that they do not in fact now want to vote for Ed (as encouraged to do so by the MEA) in the National Geographic "Adventurer of the Year" Poll, now that they know that he endorses Phil Parkers 'Peak Performance' section of Parkers Group Of Companies.
  17. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    I agree...

    Do we know if his mother is aware of all the issues surrounding Phil Parker, or is she only aware of the specific issues relating to the LP trial on children?
  18. Bob

    Bob

    Messages:
    8,044
    Likes:
    10,274
    England, UK
    So do you know if any member of the ME community contacted Ed about the issues yet? Has he been made fully aware of them?
  19. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    .

    Yes Bob, they have.
  20. Wildcat

    Wildcat Senior Member

    Messages:
    719
    Likes:
    796
    Well Bob, I just wanted to point out some things to make sure that you have considered everything before you jump in and make assumptions about what experienced LP critics have researched and written on the subject.

See more popular forum discussions.

Share This Page