Fluge & Mella's pre-trial study highlights life-changing potential of rituximab
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today...
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. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    43
    Scotland
    I had ME at fourteen and I have ME at fifty six and the only thing that has changed are the consequences of a life time of ill health.

    This woman is a disgrace to the medical profession

    Mithriel
     
  2. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    I wonder how much of the problem with us not getting a stronger message across to the authorities about LP, is to do with a lack of understanding of the nature of LP, on their part, and their lack of understanding of the inherent dangers it potentially poses to children.

    What we really need is some ME-friendly child developmental experts, or a child protection agency, to understand what's going on here, and to do a full investigation of the dangers that the training program poses to the mental health of children.

    I'm very worried about the damage that LP might do to the psychological development of children, and the permanent damage that might be done to the child on all sorts of psychological levels... I'm actually more concerned about this than I am about the children experiencing a relapse, or prematurely being forced back to school, as problematic as these have the potential to be.

    I think that many people probably think that LP is a benign and harmless psychological intervention, much like the authorities view CBT to be generally harmless. But CBT and LP are polar opposites, and miles apart. They are very different. CBT is supposed to use evidence from the patient's life in order to challenge the patient's world-view, whereas in LP the trainee is instructed purely to 'believe' that they are well, in order to force a change in the patient's feelings and their reaction to their illness. LP trains the patient to psychologically disconnect themselves from their lives, their feelings and sensations. LP is essentially a mind-washing program, and it is the opposite of CBT, pacing, mindfulness meditation and psychoanalytical therapy. LP and CBT are theoretically entirely different: one is supposed to use evidence to test the patient's beliefs and the other uses only 'faith' (a belief system) to force a change in the patient's beliefs.

    I believe that LP is potentially a very dangerous program to expose children to. I think the potential effects on a child's mental development of training them to mentally disconnect from their symptoms, their feelings, their self-knowledge, their bodily sensations, their understanding of themselves and their relationships with the adults in their lives, could be potentially disastrous for the children.
    I can't understand why more hasn't been done by experts to intervene in this research.
    I don't know if NLP has ever been tested on children or evaluated for safety on children.

    The problem is that the nature of LP is so secretive, that no child protection agencies, or child psychologists, or ethical committees understand the issues.
    I think that they wouldn't even have to have any insight into ME to understand how dangerous LP might be for children, if they fully understood the nature of LP.

    Can anyone think of any other organisations, or any other individuals, that we can write to, or telephone with our concerns, who might be interested in getting directly involved in investigating this project, and taking up the mantle? Has anyone got any ideas about who else we could contact?

    Can we do any fresh and creative thinking together about how to approach this issue? I'm stuck for ideas, and at a loss about who else we could approach.

    Who could I usefully contact who might be receptive to what I know about LP?
    I'd be happy to speak to people about what I know, if I knew who it would be productive to approach.

    I know this subject has all been covered before...
    But maybe it's useful to have a refresh of the issues occasionally, especially on such a long thread?
     
  3. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    43
    Scotland
    I don't know if it needs a special organisation, Bob. Local authorities often have their policies on a website or you could simply contact a social worker and ask what their service is for children's mental health.

    In my area, they work really well with children with mental health issues such as school phobia. The emphasis is always on how well the child is doing, how every small victory is meaningful, every relapse a blip on the way to progress. They keep well within the child's capabilities but give gentle encouragement and work on a reward system so they get taken to do activities like archery, bowling or skating.

    They have individual and family sessions with a psychiatrist and everyone is told that it will be a slow process, there is no blame involved and the self confidence and self respect of the child is built up all the time.

    This is in direct contrast to the LP where the child will be made to feel that any lack of progress is because he hasn't tried hard enough or he doesn't want to get better - it is his fault. Oh, and it will be almost instantaneous.

    LP can only work if ME/CFS is a psychological problem, even if it is as physical as simple deconditioning improvements will not happen as quickly as they claim, yet the child will be treated much worse than one who has a genuine, readily apparent mental health problem.

    I know how guilty I felt when I was fourteen, how much I wanted to please my parents and doctors. I could weep for these children.

    Mithriel

    Sorry, got carried away, but check out google and see if you can find some statements of policy on school refusal or suicidal children.
     
  4. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    I would say the CBT 'evidence base' is very poor in ME in particular. It has been criticised as a treatment even for psychological problems, and it's 'evidence' critiqued too.

    And in ME, it's uncomfortably close to LP. Exhortations to patients to 'reattribute' illness cause from organic disorder to psychological disorder is the rationale by many CBT in ME proponents. That's what LP does - in it's highly weaselly way, bearing in mind psychogenic explanations and their confusing mix of accusations - malingering, hypochondria, 'mind over matter' etc. etc. Both LP and CBT proponents utilise confused mixes of these to claim success in treating ME.
     
  5. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    3
    southern california
    LP + Children w/CFS-ME = Child Abuse and Medical negligence
     
  6. Wildcat

    Wildcat Senior Member

    Messages:
    955
    Likes:
    1,526
    Bob asked: "I wonder how much of the problem with us not getting a stronger message across to the authorities about LP, is to do with a lack of understanding of the nature of LP, on their part, and their lack of understanding of the inherent dangers it potentially poses to children."


    We've tried, Bob. Its not for want of trying. Officials probably explain LP to themselves as a kind of CBT (which it isn't really), or don't like to admit they don't know what it is.

    Lightning is heavily marketed, initially as a 'mystery' treatment. Phil Parker had a PR person on the case, Vikki Rimmer, for a year or so. He got LP into the nationals via Esther Rantzen. The BBC does free advertising for him disguised as reports on LP 'recoveries'. LP graduates do free advertising for Parker by promoting LP avidly all over the place, on youtube, in the comments sections of articles etc; basically they testify for LP. The intrinsic central component of LP is to constantly assert that one is well and "Living the Life you Love" - which is Parkers LP Slogan. Its a form of continuous self hypnosis.... and it appears that testifying for LP is part of LP!

    Officals don't have a clue what LP is, people who have encountered the NLP and personal growth seminar worlds recognise the language games involved in both LP and its marketing. In NLP there is no terminology for "manipulation", "deception" or "lying" - its all called "Doing an NLP technique".

    I think ME is merely a vehicle for Parker to establish his name and the reputation of Lightning, and the foundations of an NLP Coaching training empire... he runs another type of LP training called Peak Performance for businesses and high acheiving individuals.

    Will continue, with evidence, tomorrow, or when more 'with it'.
     
  7. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    Thanks Wildcat...
    You've painted an interesting picture of it there...
    For the first time, I've realised how much the whole set-up is more like a religion, or a cult, than a therapy.
    Its success seems to be based on a charismatic leader, secrecy, general ignorance about the nature of the program, the unquestioning faith of the adherents and the energised motivation of the promoters.
    It's a bit scary how the health service, the government, universities, medical 'experts', medical specialists and celebrities can all get so easily roped into it, without there being a single shred of research evidence that it works as a treatment for ME.
    Phil Parker must be a very clever (and rich) man.
     
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    Links to accounts

    These links have all been posted in this thread before, but I'll post them again:


    Action for M.E. 2007 article:
    http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf

    LP: the light at the end of the tunnel or just another flash in the pan?


    LP Doesnt Work for ME: Personal accounts from LP trainees:
    http://www.sayer.abel.co.uk/LP.html


    Letter: Lightning process for ME didnt work for me:
    http://www.thisisnorthdevon.co.uk/n...idn-t-work/article-613394-detail/article.html


    Personal account of Lightning Process technique as applied to patient with ME:
    http://www.forums.aboutmecfs.org/sh...ightning-Process&p=77679&viewfull=1#post77679


    Personal account of Lightning Process as applied to patients with ME and MS:
    http://forums.randi.org/showpost.php?p=4293368&postcount=1


    Bad Science forum post by "zimmy":
    http://www.badscience.net/forum/viewtopic.php?f=3&t=15791&start=1825

    There are also several posters in various LP threads who have undertaken LP, themselves.
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    This is the main LP pilot thread, but there are three other threads on Phoenix Rising which have also included discussons about the Bath/Bristol pilot study and discussion of LP, in general:

    April 2010 “Dr Frivoldi, MD” blog article by Cort Johnson

    http://www.forums.aboutmecfs.org/blog.php?b=364

    Article: An MD on the Lightning Process

    http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process

    My son & i are giving the lightning process a go on this week (Started by Coxy)

    http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week


    If you skim back through this thread, you'll see that the NSPCC were approached some time ago. Their response was that this issue does not fall within the remit of their organisation.

    What also weakens the position of those of us opposing this study since it was announced at the begining of March is the fact that it has the support of two national patient organisations, one of which (AYME) sits on the SMILE External Advisory committee and had been involved in the planning and development of the study and associated patient literature, and has promoted the study in its newsletters in June, and again in November.

    A fact that Joan Kirkbride, National Research Ethics Service, has referred to in the standard response which NRES is sending to respondents who have written with their concerns to NRES or to the regional REC that reviewed the application for ethics approval.

    It's a great pity that there had not been early and unanimous condemnation of this pilot study by all five national patient organisations.

    Anyway, Bob, I am pleased to see that you have reached the point that:

     
  10. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    Thanks very much for the links Suzy... I have read all the threads but they are way too long for me to remember everything and to read through them all again! So thanks for extracting the info.

    I was aware of the NSPCC response and I know a lot of work has been done already, and a lot of individuals and organisations have been approached about the study and have got involved, but it seems that we haven't got a result... The study is still going ahead... And I'm not sure if many of the people involved actually understand the nature of LP, and what impact LP might have on undeveloped brains.

    So I was wondering if we could think of any other avenues that we might explore, in terms of scrutinising the LP study on children, that we haven't thought of yet.
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    Yes, it is a long thread which is a reflection of just how much work has been done on this issue by many people, some of whom are working quietly behind the scenes.

    But if you are not up to speed with what has been going on in more recent months, it does make it difficult for those of us working on this issue or contributing to these LP and LP pilot threads to know what you are already aware of and what information might be useful to you.

    Suzy
     
  12. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    I didn't mean to give the impression that I thought nothing was being done about this subject...
    I know that a lot has been going on, and I have been following the thread closely...

    I suppose I am really frustrated that this project is going ahead anyway, despite all the hard work that so many people have done...
    And I was just wondering if, between us, we could think of any other avenues to explore. I suppose it was a silly question, as so much work has already been done.

    Unfortunately, all the efforts to-date haven't worked, unless there are some pending developments in the pipeline that i'm not aware of...
    I don't want to be negative, but the fact is that the children are still going to be subjected to this project, unless the national ethics committee has a change of mind very soon.

    I suppose another question might be... who, at this late stage, would it be most useful to approach about the subject with complaints and information?
    Who would it be most useful to approach, as an individual? Any thoughts on this Suzy?

    That paragraph doesn't make sense there Suzy... I think you might have mistyped?
     
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    On 10 November, I sent the following to two editors at Radio Berkshire:


    As I had received no response, I wrote again on 28 November. I received a response on the same date from Duncan McLarty, Editor.

    On 11 November, in a "follow-up" broadcast, Radio Berkshire presenter, Anne Diamond, had interviewed Dr Charles Shepherd, Medical Adviser for the ME Association and Professor Leslie Findley, Clinical Director of the National ME Centre and Centre for Fatigue Syndromes. Towards the end of the item, Duncan McLarty had spoken briefly to Phil Parker, founder of the Lightning Process.

    In his response to my concerns about how Esther Rantzen had conducted herself during her stand in for Anne Diamond, Mr McLarty has responded asking that:


    I accept his apologies for the delay in replying; that my email had been misforwarded as Graham McKechnie works in their sports team, and Marianne Bell is their previous editor who left the station in August, but that my message should have reached him all the same.

    That he is happy to address the issues I had raised.

    That he understood that there is considerable controversy and disagreement about the cause and subsequent treatment of ME/CFS and that the use of "talking therapies" to help deal with what is a neurological condition is particularly controversial.

    That Esther did not, in his view "promote" the Lightning Process, but talked from personal experience about her daughter's recovery which involved going through the lightning process. That [in his view] she was also very careful not to suggest that the Lightning Process was a "cure" but that it had been successful in some patients to help control the symptoms of ME.

    That while he thought that there was editorial justification for Esther to talk about her personal experience of the treatment of ME, he also believed that the programme should have done more to explain the controversial nature of The Lightning Process and to put Esther's experience in a wider and more rigorous context.

    With that in mind, that they returned to the subject on Anne Diamond's programme on November 11th, when they spoke to two eminent specialists in the field. In that interview they covered all the points mentioned in my original email, including the Lightning Process and recovery rates.

    That [in his view] it is important to point out that at no time did Esther suggest that ME is a psychological condition or that it can be "cured".

    That she was, however keen to point out that recovery is possible in some cases and that ME sufferers are sometimes able to return to a normal life.

    That the figure quoted by Esther that "60% of people who have ME/CFS get better, can return to normality, though they may have to pace themselves a bit." came from a private conversation with an eminent specialist. It is also in line with other studies.

    That nevertheless, he shared a concern that studies about ME/CFS recovery rates differ widely, depending on the exact nature of the study group and that the term ME/CFS may cover a range of conditions of differing severity. That this is a complex area and the use of statistics may not, in hindsight, have been helpful.

    That regarding the BBC's general policies in relation to the issues I had raised, he would direct me to the following website: http://www.bbc.co.uk/guidelines/editorialguidelines/

    And thanked me, again, for taking the time to get in touch.


    Duncan McLarty, Editor
    www.bbc.co.uk/berkshire
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    7,607
    Likes:
    9,334
    If people are looking for ideas of things to do, one idea might be to reply to Esther Crawley's letter that was published.
     
  15. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    Thanks for that Dolphin.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    Bob, I haven't said nor implied that I thought you were under the impression that nothing was being done. What I had said was that the length of the thread is a reflection of how much work has been done on this issue by many people. The focus here was the length of the thread, which you had remarked upon, yourself.


    According to the Minutes of the 2 November meeting of the SMILE External Advisory Group, recruitment is already underway.

    In an email on 16 November, Joan Kirkbride wrote:

    "We are collating a list of all the people/organisations who have contacted us about this study. We have received considerable correspondence about this matter which will take some time to consider and take forward but it is our intention to advise everyone who has written to us about the process and the outcome."

    Ms Kirkbride had already said in her "standard response" that she first intends to approach the Chief Investigator, the sponsor and the patient groups that are supportive of the pilot and have been involved its planning for their responses to the concerns that are being raised and that concerns were being passed on to the CI, by Ms Kirkbride, where permission had been given for her to do so.

    According to the Minutes of the 2 November meeting of the SMILE External Advisory Group (posted in this thread or here on ME agenda: http://wp.me/p5foE-3er ), Dr Crawley has said that she intended to draft a response, discuss this with co-applicants and send the response to the External Advisory Group before submission [to NRES].

    It's not known yet whether NRES has received this response and if so, what the next stage in the process will be or what the timeframe is for this exercise.

    According to funding documents, the funders had stipulated that the pilot must begin by October. My understanding is that the first LP sessions were scheduled from November. I do not consider that the schedule will have been halted as a result of whatever investigations NRES is making in response to the complaints it has received.

    It is possible that the first group of LP sessions have already been implemented.

    No, Bob. If I had any thoughts about this, I would be taking further action, myself.

    I had written:

    Bob has said:

    No Bob, I have not mistyped. You haven't posted in the thread for a while, that I am aware of; you had not said that you were already aware that the NSPCC had been approached when you referred to "authorities" and children's organisations; you had not said that you had been following the thread closely.

    Therefore, it was difficult to know what information you would already be aware of; what information to repeat or what information might be useful to you.

    If you have been following the thread closely - that's fine.

    Suzy
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    Be aware Bob, that if you write to Church Times and they publish your letter, they will want your full address for publication.
     
  18. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    Thanks Suzy.
     
  19. Bob

    Bob

    Messages:
    10,679
    Likes:
    20,563
    South of England
    Thanks Suzy... I wasn't sure how my posts were being received, and I didn't want to sound like I wasn't appreciating the work that so many people have been doing.

    Thanks for clarifying... I didn't understand what you'd written... Yes, I've been following the thread closely...

    Thanks for all the info Suzy, and the hard work you've been continuously doing... It's totally appreciated.

    I've been doing my own letter writing as well... But, like I said, I'm stuck for ideas. I think I'm feeling frustrated, defeated, deflated, and saddened, that this project is still going ahead. My personal 'big project' was to write a full account of how, and why, LP training could be potentially dangerous for children with ME, written for those who don't know anything about LP or ME. But after about 10 pages of A4, this project has pretty much defeated me with its complexity... So I think I'm going to divert my efforts back to letter-writing.
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,914
    Likes:
    872
    UK
    Also, I'm not sure how long the Church Times Letters to the Editor page remains public access. When a new issue comes out, the content is behind a subscription. The second week, it could be viewed from archives. But when I visited the site a few days ago and checked the link on my site for the archived copy of the original letter by Prof Robin Gill, I could know longer pull the page up. Whether it is the case that the Editor pulled the letter following the complaint by Dr Crawley, or whether it is the case that an archived copy of the magazine is only public for a short time or whether there has been a change of policy by the magazine over what is and what is not accessible without a subscription once the magazine is more than a week or so old, I don't know.

    Point being, that if the Editor is prepared to publish any further correspondence on this subject, it may not be accessible to those without subscriptions or if accessible, for a brief time, only.

    Suzy

    ETA: Just to clarify, today, 05 December, Dr Crawley's letter can currently be accessed on the Church Times site without a subscription at: http://www.churchtimes.co.uk/content.asp?id=104420

    But the Prof Robin Gill letter can't be found at the original URL. There is an archive search and other content for Issue 7699 can be pulled up but not, seemingly, the Letters for that issue - or at least not Prof Gill's letter.
     

See more popular forum discussions.

Share This Page