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Lightning Process to be Evaluated in Research Study on Children

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

  1. shrewsbury

    shrewsbury member

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    Brilliant Suzy, thanks. I've had this same problem a few times and couldn't come up with a solution.

    I'll never remember this, or to find it here. Do you mind if I copy it and post it in the how to use the forums, or tips, thread (or if there isn't one, start one)?
  2. Jenny

    Jenny Senior Member

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    The title of this thread has been changed. Could this be amended to spell 'Lightning' correctly please?

    Thanks.

    Jenny
  3. Jenny

    Jenny Senior Member

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    Thanks Kurt for changing this back.
  4. fingers

    fingers Senior Member

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    It was correct (lightening of the wallet?)
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Table from APPG on ME NHS services inquiry Final Report, March 10

    @ Islandfinn

    Yes, that's fine but please use the version below. The sample slides from the Francis Creed DSM-5 SSD Work Group related PowerPoint presentation were produced using this method.

    --------------------------

    If you cannot extract a table or an image from a PDF to insert into a posting or if you don't want to attach the full PDF to a posting, here's Suzy's Noddy Guide:

    1] Reduce the PDF display size so that the image, table, PowerPoint slide etc is not too big to insert into a posting but is still legible.

    2] Do a screen shot (usually fn + prt sc)
    3] Paste the screen shot into an image editing program - Paint will do fine if that's all you have.
    4] Select the table, image, slide etc. Copy and Paste selected area into new Paint document.

    5] Save the selected image as a .png file if it's text, like a table, a simple diagram or chart or text on a PowerPoint slide (.png will usually render text more clearly than .jpg)

    Save an image as .jpg file.

    6] Upload your file to http://tinypic.com/ or Flickr or to the media storage area of a blog or whatever else you have access to where the file can be grabbed from.

    7] Copy the file URL.

    8] Select the Editor button with the tree on it (displays in my browser on second row, sixth button in from right. The Hover text reads "Insert Image").

    9] Paste in the URL of your file and the file will load from that location when you preview and upload your post.

    If you wish to use copyrighted material for purposes of your own that go beyond fair use, you should obtain permission from the copyright owner.



    Example: Page 6 Table 2:

    [​IMG]
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Crawley slams survey

    With reference to the Action for ME survey, you may be interested in this report from 2008:

    http://meagenda.wordpress.com/2008/05/16/dr-esther-crawley-condemns-afme-survey-as-unreliable/

    Dr Esther Crawley condemns AfME Survey as unreliable

    May 16, 2008

    Ed: Note Dr Esther Crawley is a medical adviser to AYME (Association of Young People with ME) whose members also took part in this AfME Survey.

    However Dr Esther Crawley, an ME specialist based at the Royal National Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice guidelines, dismissed the findings, saying the survey was unreliable.

    This survey is based on a biased sample of people who have had an issue with treatment and we cannot deduce who had graded exercise therapy delivered by a specialist, as Nice recommends

    This is Bristol http://tinyurl.com/6bmfoq

    TREATMENT IS MAKING TEENAGERS ME WORSE

    BY ALEISHA SCOTT EPNEWS

    16 May 2008

    A young ME sufferer says a treatment recommended by the Government makes her feel worse, not better.

    Helen Wood, 18, from Thornbury, is not alone. A survey by Action for ME revealed a third of people with the condition who had a treatment called graded exercise therapy, also reported it made them worse.

    ME, also known as chronic fatigue syndrome, causes a range of symptoms including muscle pain, tiredness, headaches, sleep disturbances and difficulties with concentration.

    The charity, which released the figures as part of ME Awareness Week, also said GPs were still largely unsupportive towards patients who had ME.

    Helen was diagnosed with ME in 2005 but is thought to have had it for at least 10 years.

    The condition makes her immune system weak and vulnerable to infection and she said she was constantly exhausted and suffered from aches and pains.

    She has not been to school since April 2004 and despite having home education, has not been able to finish her GCSEs because of the illness.

    She sees a psychologist at Bristols Frenchay Hospital and also a dietician, but is rationed to just one appointment a month with her GP.

    Her graded exercise therapy involves her walking up and down the stairs or getting in and out of the bath easy enough for most people but not for Helen.

    I have been told to walk up and down the stairs a few times a day to get my muscles working but sometimes it makes me feel bad and sometimes I feel worse afterwards, she said.

    Im not able to do much at all and I feel really achy all the time and tired, I would really like to go out more but I just cant manage it.

    She added: Talking helps the most because I can get things off my chest.

    But I would like people to understand ME better, I dont think that doctors do at all because they think it is all in the mind but its not, its a physical thing.

    The National Institute of Clinical Excellence (Nice) guidelines tell doctors to develop a personal plan for each of their patients, recommending cognitive behavioural therapy and graded exercise therapy as treatments.

    Graded exercise therapy encourages patients to gradually increase physical exercise or daily tasks irrespective of how they feel.

    But while Action for ME accepted the treatment could help some, it said that 34 per cent of ME patients in its survey said graded exercise therapy had made their ME worse.

    However Dr Esther Crawley, an ME specialist based at the Royal National Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice guidelines, dismissed the findings, saying the survey was unreliable.

    This survey is based on a biased sample of people who have had an issue with treatment and we cannot deduce who had graded exercise therapy delivered by a specialist, as Nice recommends, she said.

    Delivered by a specialist, it actually reduces activity to a stable level and then to a small amount each day. We have had above 85 per cent of people who said they have been happy with their treatment.

    We do not say to people they have to have the therapy, we give them a range of options and they choose.
  7. Bob

    Bob

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    It's amazing how 'the treatment failed' can be twisted into "a biased sample of people who have had an issue with treatment", as if it's all the patients' fault.


    If 34% of AfME members said that GET made their ME worse, then I hope that AfME are going to stick by their members, and not tow the establishment line.


    Note: I think I'm getting a bit off-topic here... This is about GET rather than The Lightning Process
  8. Dolphin

    Dolphin Senior Member

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    (OT) AfME and the adverse reactions

    I don't like Peter Spencer's use of the term, "setback", which was quoted in the APPG services inquiry report:
    One can be made worse by GET and it's more than a "setback" - you might not get over it. "Setback" is more clinic-speak.
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Two posts on another thread that may be of interest:

    http://www.forums.aboutmecfs.org/sh...es-a-CFS-Patient&p=57720&viewfull=1#post57720

    This is North Devon Letters

    Lightning process for ME didn't work for me
    Thursday, January 15, 2009, 07:00


    http://www.forums.aboutmecfs.org/sh...es-a-CFS-Patient&p=57732&viewfull=1#post57732

    The March 2007 edition of Action for M.E.'s magazine InterAction published this article:

    InterAction 59 March 2007

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

    The Lightning Process (LP) has attracted national press coverage but alongside the hype
    and talk of miraculous recovery, InterAction received reports of relapse and failure, and
    decided to find out more.


    -----------------

    Also correspondence with Phil Parker from February 2007.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    LP [From ME Association Summary of March 10 meeting of the BoT]

    "This is a summary of key points to emerge from three meetings of The ME Association Board of Trustees.

    "These meetings took place at our Head Office in Buckingham on Monday morning and afternoon, March 22nd and on Tuesday morning, March 23rd 2010.

    [...]

    "Lightning Process Trustees discussed a new research study that has been announced into the use of the Lightning Process. Costing 164,000, the project will investigate how to recruit children and adolescents into a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. More information on the study can be found in the March news archive on the MEA website."
  11. Min

    Min Senior Member

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    Dr Greensmith of ME Free for All has a letter about this in the Bath Chronicle - comments can be left if you register:

    http://www.thisisbath.co.uk/news/ne...cacheBust=6NB6wK7YgQMX&success=true#community

    ---------------------------------------------------------------------------------

    PERMISSION TO FORWARD, RE POST AND USE IN NEWSLETTERS

    "There have been a couple of comments added today but it seems much slower than I had expected or hoped for.
    Many more people have expressed their views on Facebook and groups like this than at the source.
    Readers in Bath are not going to know the true numbers if you don't post them there.

    Someone is reporting that they have had a problem with registering. Has anyone else? If so, can they say how they resolved it.

    I hope that as many as can manage will post here
    http://www.thisisbath.co.uk/letters...cle-1943502-detail/article.html#StartComments
    and/or send an e-mail to the letters page letters@bathchron.co.uk

    I notice some individuals and all M.E. organisations conspicuous by their absence.

    Please note people other countries should take part because, although this is research taking place in the UK, the Lightning Process is promoted worldwide.

    Cheers
    John"
    From: ME Free For All.org <drjohngreensmith@mefreeforall.org>
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  13. flex

    flex *****

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    Bob

    like you I was shocked to hear about this study to be run by Esther Crawley. I think we should write to her and the fund providers along with the hospital and outline that we consider this to be a child protection issue. Once its in writing they will think twice as they will not want the bad publicity and also will consider what will happen if and when a child is harmed - considering they had been forewarned.

    This is really something we all need to mobilize on here, its bad enough the issues we have to deal with as adults but to force this harmful approach onto children is pure brutality.
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Thanks, Min, for highlighting this here. I have left the following comment (after a regsitration process that has severely tested my sanity).

    Comment

    Why has this feasibility study into LP and children been awarded funding when there have been no proper trials carried out and published on the application of LP in adults with ME-CFS?

    It is understood that the study design will closely follow the methods used by LP "coaches".

    Before beginning a course of "training", applicants are expected to sign up to certain statements and undertakings.

    Will children as young as eight (or their parents signing consent forms for those under 16) be expected to sign up to this:

    "1. Agreement
    Please read these statements, and if you agree with them please circle the AGREE word, I will not accept you onto the training program unless all the statements are agreed to. Our experience suggests you should only take the training if you agree to these statements:

    I understand that the Lightning Process is a training programme.
    Agree/Disagree

    I understand that learning the Lightning Process does not guarantee me any results.
    Agree/Disagree

    I accept full responsibility for the effects of applying or not applying this training programme to my life.
    Agree/Disagree

    I recognise that the mind and body can powerfully influence each other.
    Agree/Disagree

    I am prepared to look at and challenge my beliefs about my condition/illness/symptoms, my health and myself.
    Agree/Disagree

    I am totally prepared to do the sometimes challenging work of starting to think very differently, that is required to get myself back on track.
    Agree/Disagree"

    4. Your Future
    Please score the following statements where 10 is totally agree and 0 is totally disagree:
    STATEMENT
    SCORE

    I want to resolve my issues/symptoms

    By applying the training I can learn to resolve my issues/symptoms

    It is possible for me to be well

    I deserve to be well

    I am willing to do all the work necessary to make positive changes to my health and life
    I am willing to change negative lifestyle patterns, thought processes, limiting beliefs and habits

    I believe I can recover using the Lightning Process
    In terms of my issues and my ability to follow instructions I am similar enough to all those others who have used the process to recover that I am bound to make the same kind of changes as them

    I am determined to be the next success story: Yes/No/Maybe

    When you have discovered a way to get well/resolve your issues/symptoms what would you love to do with your life?"

    5. The X Factor
    What will you need to do or be to get the very best from this training?

    6. Analytical
    Are you analytical? We know it is valid in some situations to analyse and question, but what we have found during the Lightning Process training, is that those who spend time analysing what they are learning INSTEAD of applying the Process, hinder their own progress. You need to have done your research and questioning before the training so that you can get the most from it. If you need to know more about this please tick here so we can discuss it further. [ ]

    "7. Please select one answer to each statement:
    a) If others can get well using the process then so can I - do you agree?
    Yes/No

    b) My type of illness/issues/symptoms (that I want to use the process on) are generally easily recoverable from by using the process.

    It is definitely this way/I donʼt know/No

    c) The things I need to address are different from other people‟s.

    It is definitely this way/I donʼt know/No

    The Lightning Process is a training programme, not a therapy, and there is no requirement for you to share personal information with other members of the group, but some people may choose to do so. Do you agree to maintain confidentiality with regard to personal information shared by others during the training?
    Yes/No

    8. Training Agreement
    You should only sign this assessment form if you agree to these following statements and conditions.

    I understand that the Lightning Process is a training programme. I understand that learning the Lightning Process in itself does not guarantee me good results, because I alone am responsible for applying or not applying it. I recognise that the mind and body can powerfully influence each other. I am prepared to look at and challenge my beliefs about my condition or illness. I am totally prepared to do the work necessary to get myself well.

    I promise that during the training I will be available for coaching to achieve success, be open to feedback and change anything that my trainer identifies could hinder my success.

    ---------------------------------------------------------

    It is shocking if children are to be psychologically manipulated in this way.

    This study should not be permitted to proceed. If the NHS considers that LP is worthy of scientific scrutiny then it should be conducting studies on adults - not on children and certainly not children below the age of 16.

    The ME Association has published today that patient organisations are discussing their concerns over the use of children in this study.
    Suzy, Dorset

    commented on 26-Mar-2010 19:30
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Hi Flex,

    I agree (as I've said in my comment on the Bath site) that there is no way this study should have been approved for children.

    There are currently three threads on LP on the go. It's getting hard to remember which links and material are in which of the three threads.

    At the end of the last APPG on ME meeting, some members of the ME community and some charity reps gathered for a coffee in the cafe near the House of Commons.

    I emailed a contact who attends these meetings with a laptop and I asked him whether the issue of this study in children has been brought up at the meeting under AOB. (The study press release was published too late to have got this issue onto the APPG Agenda.)

    It had not been raised at the meeting, but one of those who was with him in the cafe went over to the table where the org reps were sitting and discussed his concerns about LP in general, and this Crawley study in particular, with Mary Jane Willows of AYME, at some length.

    The following day, he sent Mary Jane Willows and Jane Colby (TYMES Trust) copies of some literature about LP which he had taken along to the meeting and had used to illustrate his concerns to Mary Jane Willows and to Christine Harrison of BRAME.

    Since then, Fingers has been in dialogue with various interested parties - but I'll leave him to update you on that.

    It has been suggested that I put in an FOI for the funding application, the study design, method of recruitment, patient literature etc but unfortunately, although I have done many FOIs in the past few years, I have too many other committments at the moment to take this on and I also maintain three websites.

    Perhaps this is something you might consider doing?

    I don't know whether you've seen from earlier postings that Sir Peter Spencer has a non exec director interest in the institution in receipt of the study funding.

    Dr Crawley was a member of the NICE Guideline Development Group. She is now a member of the MRC "CFS/ME Expert panel" and has been pulling significant amounts of funding in for various studies in children over the past year or so.

    She is also the Medical Consultant to AYME - the children and young person's org!!!!!

    At the last but one meeting of the Countess of Mar's group "Forward-ME", there was discussion about LP in relation to GOSH and another institution that was giving a platform for Phil Parker at a workshop for professionals working with children and CFS. Dr Crawley was at that meeting of Forward-ME to give a presentation and was invited to contribute to the discussion - this meeting took place before it was known about the funding for this children and LP study.

    It was recorded in the Minutes that Mary Jane Willows was charged with talking to GOSH about the orgs' concerns about LP. What the upshot of that was had not been reported on by the Countess of Mar's group in the following meeting.

    The patient orgs are apparently muttering about it amongst themselves - but none of them have issued opposition statements and one questions what, if any, action they are going to take other than muttering amongst themselves.

    Can you really see CS, for example, opposing Esther Crawley?

    Suzy
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  18. Bob

    Bob

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    Suzy, I really appreciate all that info... it's so helpful to know what's going on.
    Flex, thanks so much for your comments... maybe we could all organise a collaborative letter or a letter template?

    I've now managed to send a letter to the CEO of AYME, and I'm going to do some editing of the letter and send it out to all the concerned organisations and individuals.

    I need to edit my original letter, and I'm looking for a simple explanation of what the Lightning Process technique involves, and also some anecdotal reports of what the instructors say to people regarding their symptoms, or what they say if a 'trainee' experiences increased symptoms during training. If anyone knows of any posts on the forum which cover any of these points, then could you post a link please... but I'll have a look myself, so please don't anyone do a load of work on this.

    Bob
  19. Julia Rachel

    Julia Rachel

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    Aren't study programs supposed to be 1) "free of cost" to the participants and 2) contain control groups involving placebos (i.e.: other methods) as well as many other criteria specifying a legitimate research study. As long as proper scientific protocols are followed, then Kudos to the study and we all shall await the results. Then, there needs to be valid replication, meaning more studies with more variables. I have heard alot of "discounting" and "jokes" about this lightening Process. A Funny Fact to me...is that the LP name evokes (for me) both humor and disbelief that it culd work. When I first heard abouth the LP.....I figured (being a farm girl and all) that the patient was to go out into a field and be struck by lightening to be cured. Lightening Process...the name I thought said it all! I NOW know that the methodology of the Lightening process has nothing to do with Lightening, yet I was ignorant about this process when I heard the name. I ASSUMED it had something to do with "Lightening". In a twist of fate, it is also Ironic that people who are ignorant or not aware of CFS intimately/first hand think that CFS is "all about Fatigue".....they automatically assume this sort of fatigue is one in which everyone experiences at some point or other, and is able to snap out of. Thus, our illness is discounted greatly. This is just food for thought......I have poo-pooed all the hoopla about the discussions about the Name Chronic Fatigue Syndrome and until now have not fully understood the fractions debating this. I now freely admit my mistake and now see that a name change would be beneficial. I like to admit when I am wrong.....it keeps me humble with my illness. Plus....I heard crazy people never admit when they are wrong! Phew....I am not crazy...I just have CFIDS and 6 other auto immune diseases.

    Happy Weekend to you all....wherever you are...in the UK, In Australia, in America, In Europe.....My heart goes out to all sufferers of ME/CFS/CFIDS/VICD or whatever the final name shall be. I must say.....if the LP helps one person, specifically a young person, get through this illness with some sort of success, I will smile. It is now believed that HHV-6a, associated with CFIDs and VICD has a correlation with high teenage suicide rates. My son Blake.....nearly took this own life behind his cognitive decline. On a lighter note..... He tried the EEG neurofeedback therapy which seemed to help for about 6 months.....later on I asked him..."heh....how did that work for you" and he said it had its' good points and bad....but "if he wanted to walk around like a Zombie and not feel his emotions....it was a successful treatment" The treatment seemed to dull his emotions...... Point is...he TRIED. As long as rigorous exercise is not emplored....this LP might help some children and adults. We must be open to new ideas, progressive treatment options.....we know this is NOT a cure...however....if it can make a persons quality of life better, if even for a few weeks or month...I say lets support our friends who choose to try this system. It is up to the participant to sign on for the risks, it is not our job to prevent them from trying something new. In the mean time....support would be nice for those involved. We may not all agree with this methodology, but we can certainly respect each other in our freedom of rights ro make a decision. Blessings.Julia.....http://vlgonvalcyte.wordpress.com/
  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Julia wrote:


    Julia, this thread is about children as young as eight being recruited for an LP study not about adults.

    Since no trials have been carried out in adults how can those conducting this research properly inform the parents (and those children under 16 considered competent to give consent) in order that they can make informed decisions about whether or not to consent to participation?

    Before being accepted for the course of "training", applicants are expected to sign up to certain statements and beliefs. Will children as young as eight (or their parents signing consent forms for them if they are under 16) be expected to sign up to these same "beliefs"?

    Can I ask you whether you have actually read the application form and that you understand what LP "trainees" are expected to sign up to?

    You'll see how applicants are being indoctrinated into the "program" before they have even been accepted as being "ready" to undergo the "training" via an LP "seminar" either in group sessions or on a one-to-one basis.

    It is shocking if children are to be psychologically manipulated in this way by the NHS.

    If the NHS considers LP worthy of scientific scrutiny then it should first conduct studies on adults with ME and CFS - not on vulnerable children and certainly not on children below the age of 16.

    LP "Coaches" maintain that they cannot explain to participants "how it works" because that would "stop it working". And that "trainees" must not talk to others about their "training" because that will "stop it working" too.

    Science or "magic"?

    How can informed consent be given under those terms?

    Once again this issue is about children as young as eight.

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