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Lessons from ME/CFS: Finding Meaning in the Suffering
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Petition to silence Esther Rantzen

Discussion in 'Action Alerts and Advocacy' started by Jenny, Feb 3, 2010.

  1. fingers

    fingers Senior Member

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    SW Endland
    LP vs XMRV?

    Just found Phil Parker (aka Loadsamoney Phoney)'s presentation responding to the XMRV findings - see
    http://www.lightningprocess.com/LinkClick.aspx?fileticket=Uz7/MsTEqpU=&tabid=371&language=en-US

    It contains the usual sprinkling of illogical statements, like "If we assume that on average:
    67% of the cases of CFS clients that are seen with the LP have the XMRV virus", etc. etc. bollocks.
    Starting this sentence with "If" possibly means you can't question it, but it ignores the fact of a certain amount of rigour applied when selecting the research groups, as opposed to no rigour whatsover in the claims made by Phil Parker.

    I deciided to give him a call. Fair play to him, he came to the phone. If you accept that many people have been helped by LP, you can't knock that, but there is a problem with the statements made about it and that I believe damages the quest for the truth.

    I asked Mr.Parker if they'd tried LP with HIV positives, and he said no but maybe we should. I reminded him to do the blood tests before they start.

    The other problem I have is the whole ethos around the organisation - some clever marketing, very money-focused, lots of disclaimers and a requirement to sign away rights before you start. Lots of mistrust.

    In time the truth will unfold.

    Btw, I have done the LP out of desparation, but with no benefit whatsover, except gaining an understanding of the name.........it's a process of lightning indeed........your wallet!!!

    Love to all
    Satch :cool:
  2. Min

    Min Senior Member

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    UK
    The ' therapists' frequently have letters and articles in th UK press claiming they have been cured of (usually severe) by LP.

    Last year Private Eye magazine reported that the people who then had letters published stating that they were made worse by, or had no benefit from LP were being threatened with legal action by Phil parker.

    The people I know who have done it have been made much worse.
  3. Bob

    Bob

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    England, UK
    fingers, i found your post interesting, and it's amusing that you managed to get him on the phone!

    The only problem I have with the Lightning Process is the unsubstantiated claims they make regarding their success rate.
    These claims are dangerous for people with ME (some people are made worse by the course, and everyone is left massively out of pocket).
    People with ME are vulnerable and desperate to get well, so we will sometimes try things out without fully investigating them.
    Most of us haven't got the energy to get to get to the bottom of Lightning Process propaganda.
    I think that they prey on vulnerable people and take a lot of money from them.
    I wouldn't have a problem with people deciding to pay for a lightning course if the information was transparent and upfront.
    We can't take the claims of success rates seriously unless an independent study has taken place.

    The questions to ask are:
    For the patients included in their success rate figures, how long do they follow up the patients to see how well they continue to do? (one day, one week, or a year?)
    How many of the patients who embark on the course have an official diagnosis of ME? (And which diagnostic criteria was used?)
    Are the patients who don't complete the full course included as 'unsuccessful' in the figures, or are they left out of the figures altogether?
    Why haven't there been any independent studies, if it's so good.
    And why does the course cost so much?
  4. Julia Rachel

    Julia Rachel

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    California
    Thank you for bringing Esther into my sights. I will have to mention her methodologies in one of my more humorous blogs :) as dipic states...."free speech!"....http://vlgonvalcyte.wordpress.com/
  5. jahoolie

    jahoolie

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    east midlands,uk
    ive signed
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
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    NYC (& RI)
    I don't know much about LP more than what's been said here, but the fact that the person who spoke negatively about it who actually attended it is reluctant to speak about it because she was 'asked' not to and the story reported here of people speaking negatively about it being sued says it all for me. wow that was a long sentence.

    I could see it helping in ME since when we are stressed in any way- physically, emotionally, mentally- we suffer post exertional relapse. Most people with ME have very low cortisol and a very low cortisol response to stress. When someone with a low cortisol response is stressed they release cytokines- the immune system messengers that cause the inflammation in ME. So learning to short circuit stress probably would improve ME patients' stress.

    I am very opposed to the 'just push through it', 'you only think you have limits' approach. It is very theoretically unsound and it produces a lot of morbidity. This mindset promoted by the uk psychiatrist-charlatans is perhaps our biggest enemy, imho.

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