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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. Mithriel

    Mithriel Senior Member

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    I have posted elsewhere about how I exercised my way to a wheelchair.

    I became fitter taking my son to a nursery at the top of a very steep hill. It was wonderful, I thought I was cured and made plans fr the future. I did not take up sports or join a gym, just everyday activities which I don't think I even did more of, they were just easier. I do remember that I stopped taking a bus and walked everywhere which is by far my preference.

    But the sudden extra fitness destroyed the "cues" I used to tell me I should stop. After a few months of this new improved existence I was coming home from the library with my son and my legs stopped working. I dragged myself home by hanging onto the railings and I have never walked more than a few steps outside since. That was in the spring of 1990.

    You can see why I worry about people doing LP. While I was feeling better the underlying disease was eating away at me, irreversibly. Every treatment must be done while carefully measuring bodily parameters to avoid harm.

    Mithriel

    I posted over Adam's. You are completely correct, as is Gerwyn.

    The psyches tie everything up in knots but the issue is simple. If they are right and the initial infection is long gone and all we have left are the psychological issues then their treatments will work. They are much cheaper than LP, too, you don't need that, the NHS will do fine.

    If you have an ongoing disease then psychological treatment cannot do anything apart from help you cope with your illness.

    Mithriel
  2. Gerwyn

    Gerwyn Guest

    25% of patients with ME are bedbound,housebound or both.They have objectively measureable abnormalities.they have difficulty in reading memory limited mobility and a host of other things.These abnormalities are very easy to meaureand can rapidly establish a pretreatment level of symptoms.It would thus be a very simple matter for the vendors of LP,CBT the Gupts process to run a trial on these patients.Measure a parameter number of steps they can take items on a list they can remember and an umber of other things before and after therapy.Apply a statistical treatment to the results and bingo pass or fail.They should put up or shutup
  3. xanadu

    xanadu

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    I now suspect that trainees and practitioners are programmed not just to be uncritically positive about LP but also to reframe scientific and ethical criticism of LP and Mr Parker as abuse. Confronting individuals who have been conditioned to react that way is likely to reinforce the programming.
  4. coxy

    coxy Senior Member

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    hi, i seem to have caused a great deal of confusion. Sorry but because i'd been updating members privately who asked me to, i had failed to keep the forum up to date with my progress! I was struggling about 3 weeks after the process & could like i said have given up. Luckily i had a contact who was very supportive and gave me a phone number of a lady who used to be a LP trainer with Prof Findley (Gerri de vries), she doesn't teach the LP anymore but her own tweaked version. I was advised to speak to her on the phone as she had helped people who had done the LP but not quite got to where they wanted to be. She is lovely, really worth contacting for any of you who are interested. She helped me (for free) enormously and kept me going until i have now recovered. We decided between us to wait until my son (12yrs & dyslexic) is older and wiser. He clearly didn't understand he had to put any work/effort into the process to make it work (he admits that) & we are all absolutely fine with that.

    I have made it clear to my trainer that i feel it's a bad idea to undertake the process with other family members incase it helps one and not the other. Gerri understands special needs in children aswell and
    has been a lot more helpful. The original LP trainer spoke with Kieran on the phone before hand, but obviously not thoroughly enough. It was my fault really, we decided to do the LP a few days before our


    holiday, i'd been recommended it by a mum who's 12 yr old recovered 4 yrs ago, she's a phone lady with the Tymes trust (ME childrens charity uk). Obviously the Tymes trust don't recommend any therapy,

    i haven't spoken to my sons paeditrician yet as nothings changed for him. My trainer lost my faith when she said she'd worked with 3 & 4 yr olds, i have a 5 yr old and he certainly wouldn't of done the process.
    To be honest all the comments back are quite confusing to me. I thought i was telling it as it was following the therapy, obviously it wasn't going to be a magic wand waved over 3 days and you don't need to do anything more. You do need to work at it. Bear in mind we'd also returned from a very hectic 2 week holiday in florida with jet lag etc to contend with, so it was no wonder i was feeling tired. I'm really pleased with my out come simple as that. I promise all of you that i've only spoken to people that have remained better 3yrs plus down the line. i hope to god that what some of you are suggesting doesn't happen to me regarding sudden collapse/relapse etc!
    How could i of given a more honest view of this to you all. I'm a 44yr old, my son is 12, my daughter with ME 15yrs wouldn't do the process at all because of what she'd read on forums (she's been ill for 7yrs).
    My son simply didn't do the process, it failed in that respect. We will try again when he is older.
    Sorry again if i left some updates out on the forum, i appreciate it's terribly hard to understand how it could work, but it's simply turning off the stress response that is stuck on and causing all the symptoms, you are taught how to do that very effectively as far as i'm concerned. I know many of you will be reading this in the same way i used to read this sort of thing, but i simply got to the point i had to find out for myself.
    Prof Findley who has the only ME hospital in the uk does the process on his patients all of the time. Both he and Gerri de vries were doing the LP trial a few years ago that never got puplished, the reason was that they fell oyut with each other
    so it was purely a personal opinion.




    Could I ask Coxy, please, when applying for LP "training" was your son expected to sign up to the beliefs and commitments as set out in the LP application form or were you asked to sign up on his behalf?

    I don't know how old your son is, but do you think he understood what he was being asked to sign up to?

    How did your "trainer/coach" (who is presumably not medically qualified):

    Assess your son for his "readiness" to undertake the program.

    Assess his medical condition to determine whether his illness might mean that he was not going to be "suitable" to undertake the program.

    Was this done purely on the basis of the application form, or was this discussed with you and your son by the "trainer"?


    Were you given any data or information sheets about children with "CFS/ME" and the suitability of children with "CFS/ME" for undergoing LP?

    Did you discuss LP with your son's GP before signing up and have you discussed the outcome with your GP, since?

    I don't ask these questions confrontationally, but I am genuinely interested to learn how LP "trainers" are assessing children with "CFS/ME" for their "suitability" for LP.

    Suzy[/QUOTE]
  5. coxy

    coxy Senior Member

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    sorry the end of my thread disappeared. Prof findley and gerri de vries fell out and that's why the LP trial never got published. Gerri said it was a huge undertaking with enormous amounts of data and she wasn't getting any help so she went her own way. Hope that clears up a few missing parts of the jigsaw.
  6. Gerwyn

    Gerwyn Guest

    [/QUOTE]

    with respect I don,t know of any ME patient who could undertake a hectic two week holiday in Florida
  7. coxy

    coxy Senior Member

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    with respect i don't know why 2 children with ME would practically miss out on school all together, miss out on friends, sit about at home bored stiff just for the fun of it. i know plenty of me sufferers who have holidays in their own way i.e with support (we had our entire extended family with us to help)with respect I don,t know of any ME patient who could undertake a hectic two week holiday in Florida[/QUOTE]
  8. Jenny

    Jenny Senior Member

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    I, and others I know, have had many periods of relative remission where active holidays can be pursued. Last year I spent two weeks in Italy and did lots of walking - one day I walked 6 miles. I'm lucky I know.

    But then I get severe relapses where I'm bedridden for months and can only walk a few steps. These relapses aren't linked to any over exertion.

    Jenny
  9. Adam

    Adam *****

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    When I was in Oldchurch (Findley's gaff in Romford) some of the nurses more or less refused to have anything to do with the ME patients. The ward was shared with neuro-surgery patients. You can just imagine how we were looked upon. Maybe it has changed since I was there back in 2000/2001, but I would not describe it then as an ME hospital. Unless that is your definition of ME is a psychological condition. Which I don't. of course.

    I don't think Findley has ever believed that his ME patients have an ongoing infection. I'd love to know what he thinks about XMRV? The whole experience for me in Oldchurch, under Findley was degrading. I got better care as in patient in Sheffield on the three seperate occasions I have been admitted. I get treated with respect by my GP and hospital consultant in infectious diseases. I got no respect at Oldchurch. Just thinking about it again makes me angry. I only went there because I thought, how can I turn down the opportunity of one of only six 'specilaist' in patient beds in the whole of the UK?

    Wish I had turned it down. :(

    ME hospital my a***.
  10. Gerwyn

    Gerwyn Guest

    [/QUOTE]

    That is not what you initially said.Can I asked who diagnosed you please and what criterea were used.Not intended to be impolite.merely attempting to switch the conversation from the anecdotal to a more scientific footing.The LP approach seems to thrive on anecdotes but supplies no objective data of any kind.if you dont mind me asking what objectively meaureable symptoms did you have pre treatment and what objectively measureable changes have taken place
  11. Gerwyn

    Gerwyn Guest

    PEM is characteristic of the illness.If in remission there is no need for LP of course
  12. Bob

    Bob

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    Hi Orla,

    You've explained your position really clearly... thanks for that... and thanks for the links to the other discussion threads...
    I'd like to apologise to you, because I didn't mean to pick up on your individual comments... I was trying to avoid that... it wasn't my intention to cause you to explain your comments...
    I had just used what you said as an example of the message I was trying to put across, and I didn't mean to criticise you.

    And I agree that you were careful not to critiscise Coxy personally, but you generalised your comments.

    I have to say that after reading about Coxy's experience, and her son's experience, I was surprised that she made such a strong criticism against us without engaging in the discussion, or reading our concerns. Her experience really does seem to back up all of our concerns.

    But I still think... and this is a general comment, it's not aimed at you Orla... that we should make arguments against the Lightning Process, and not try to argue against individual cases.

    Bob


  13. Bob

    Bob

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    My concern here is that if we are not careful with our words and our language, then we turn against each other rather than support each other on the forum...
    I know that we strongly and passionately disagree with certain views about LP... but what I have clearly said all along, is that I believe we should address the issues surrounding LP and not the personal stories...
    Some of you obviously don't agree with me, but I will continue argue that we keep this non-personal.
    I know that is difficult not to address the personal stories when they are put in front of us, but I personally believe that we should continuously argue against LP by addressing the scientific issues, and not the personal stories of recovery.

    Bob
  14. Gerwyn

    Gerwyn Guest

    Hi Bob,

    One of the scientific issues is diagnosis who made it and according to what criterea to exclude overlapping conditions.not everyone given a diagnosis of ME/cfs actually has the disease in any mind independent sense.CFS is merely a lable and not a diagnosis.the other is ojective measurement at baseline and after treatment. I agree that personal criticism should be avoided.That does not mean however that anecdotal accounts should not be challenged.i think that there is too much at stake to do otherwise given the power of the psych lobby
  15. Jenny

    Jenny Senior Member

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    Not sure what point you're making about PEM, Gerwyn. When I'm in a relative remission I don't get PEM. When I'm in a relapse I do.

    I was just saying that there are plenty of ME sufferers who can sometimes cope with active holidays.


    Jenny
  16. fred

    fred The game is afoot

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    For me, the most illogical and contentious element of the pro-LP proposition is the claim that it leads to recovery. If XMRV is proven to be the cause of ME, then there is no current method of effecting a recovery as there is no current method of uninserting a retrovirus from sufferers DNA (regardless of Parkers PowerPoint musings).

    To Adams point, if you have a post-viral syndrome, then the LP (or any other positive thinking approach) may help you get back to normal but, strictly speaking, it is the immune system that will have effected this recovery and not simply the mind training.

    I know several people who are long term sufferers of (very evidently) neurological ME who have tried the LP. Some say it had no effect and others say that it helped them. None have said that they recovered.

    So far so simple. If the recovery tag is removed, then the LP is left as a very expensive coping mechanism with variable results.

    But the key issue for me is that people are also harmed by this approach.

    I have read as many negative accounts of the LP as I have positive ones.

    One sufferer I know who benefitted from the LP said that they fell off the wagon after six months when renewed fatigue meant that they could not sustain the positive thinking techniques any longer. Mithriels experience may offer an explanation for this: But the sudden extra fitness destroyed the "cues" I used to tell me I should stop.

    A prescription drug with so much disparity in its treatment outcomes would have its P licence withdrawn and reviewed. Why should the LP not be assessed in the same way?

    To Gerwyns point, until this treatment is properly and scientifically researched (and on adults not children), how can anyone (even Mystic Phil) know the true physical and psychological, short and long-term effects that it has on (particularly, but not excluded to) people with neurological ME?

    I find it ironic there is such an outcry when people with XMRV try anti-retrovirals, drugs for which there is over 20 years of research and experience, and yet the LP slips under the radar without any monitoring or regulation by any Government or professional bodies.
  17. Gerwyn

    Gerwyn Guest

    What i am really saying is that PEM is characteristic of the active illness(Sorry should have been clearer).The lady claims she had the active illness prior to LP therapy.If she did have the active illnessa "hectic two week holiday" would be unlikely.

    We are left with a number of variables inaccurate diagnosis and the possibility of remission prior to treatment which would have improved without any intervention whatsoever
  18. Bob

    Bob

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    Hi oeganix...

    I not sure that you have read through my earlier arguments... or I just didn't explain myself very clearly... because you seem to have completely misunderstood where I'm coming from... but I'll try to answer some of the points that you've raised... Please understand that I am on your side... But I am just proposing that we refine our arguments in order to be more effective.

    Nor would I... But if people have had a subjective increase in the quality of their lives, then this is beneficial isn't it? I'd like to feel a bit more well. It sounds good to me anyway. This is why I think we should address the scientific issues, and not personal recovery stories.


    I agree with you that the LP organisers clearly don't understand ME... but there maybe subsets of CFS... are you saying that there definitely are no subsets of CFS? Are you saying that the disease definitely does not progress differently in different people?
    What I am saying is that we need to be more sophisticated, or subtle, in our arguments to address issues like these... If we argue that LP does not help people with ME to recovery, then we lose our argument because the authorities will say: "But so many people have been helped by it"... So, as an example, I think it would be better to say: LP does not help a majority of people with ME to recovery; Or argue that LP wouldn't help people diagnosed using the Canadian criteria to recover.


    What I am saying is that I think our arguments should not address individual cases of recovery, because we are on a losing argument there... but that we should address the scientific issues, and discuss things like: the nature of ME, subsets, disease progression, mis-diagnosis etc.


    I just don't think that this is an issue that you can win an argument on... You can't argue with someone against their faith, because faith isn't necessarily rational... If someone says they feel better and you don't agree, then you have to either call them a liar, or tell them that they are mistaken... a very hard argument to win... So I think it is just better to argue that LP is a faith based program... call it faith healing, positive thinking, or whatever, and explain why... but there's no point in questioning an individual person's belief that they have recovered.


    Not good for who? Not good for people who have had benefit from LP? Or not good for people who might benefit from LP?
    Yes, give people the facts regarding LP, but we can't start telling people what is good for them.


    This is a good argument against LP, but you also have to address the fact that many people have experienced an improvement in the quality of their lives.


    I agree... and if you have read through the discussion threads, then you will know what my position is regarding LP (I don't think you've read any of my posts because you seem to think that we shouldn't argue against LP)...


    That is a very sophisticated argument... but again, I think it isn't helpful to accuse all people who have experienced a recovery as being: cult followers, liars, mistaken, brain washed etc... I'm just saying keep it scientific, and not make personal attacks.
  19. Bob

    Bob

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    Gerwyn, that's a very weak point that you've made there, and a personal dig... it's not respectful at all... You can do better than that... People with CFS/ME have different levels of disability.
  20. Bob

    Bob

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    I still think it would be better to make our case addressing specific scientific issues, rather than trying to pick apart each and every personal story that we are presented with, which could get very destructive for our community... this is just my opinion.

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