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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. Mij

    Mij Senior Member

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    @Dster your post was written August 24, 2013

    Could you update?

    What has been your own personal experience?
     
    Last edited: Jan 27, 2014
  2. Wildcat

    Wildcat Senior Member

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    Hi Dster, you wrote:

    "..... And as for the old pea and thimble trick of subtly questioning the legality of Parker's behaviour to try and bolster one's position, it's risible, and wholly see through
    Pathetic"

    .


    Wildcat writes:
    But Mr Parker's advertised claims for Lightning effectiveness for Medical conditions HAVE been found to be unlawful......
    twice, by the UK Advertising Standards Authority (ASA).


    This is the 2013 Decision by the ASA .....
    http://asa.org.uk/Rulings/Adjudications/2013/3/Phil-Parker-Group-Ltd/SHP_ADJ_210374.aspx

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    Last edited: Jan 27, 2014
    Valentijn, MeSci and SOC like this.
  3. SOC

    SOC Senior Member

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    No, that is not what's happening, that is your interpretation of what's happening based on your own personal bias. The bias is yours, not ours. We are asking for factual scientific evidence, as we do with all supposed miracle cures, and you have refused to provide any whatsoever. You are simply asking us to accept your word and then vilifying us for not doing so.

    If anyone coming to this site is put off trying LP, it's because there has been no factual scientific evidence to support its use, which is a good reason to be put off, imo.

    I doubt this is a liberal/conservative issue.
     
    MeSci, ukxmrv, Valentijn and 4 others like this.
  4. Wildcat

    Wildcat Senior Member

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    Please read the full document re harm from Lightning Process, which Tom Kindlon has posted on another Phoenix thread just now. I can’t work out how to copy and paste his whole post.



    http://forums.phoenixrising.me/inde...xceptional-disease-courses.27864/#post-424684



    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833488/

    ‘The National Research Center in Complementary and Alternative Medicine (NAFKAM) International Registry of Exceptional Courses of Disease (the Registry) related to the use of complementary and alternative medicine (CAM) has to date received 5 reports of exceptionally “worst” courses of disease from patients who have attributed their negative health experience to the use of CAM. The monitoring of unfavorable outcomes related to CAM treatment is seen by NAFKAM as important to ensure that treatments offered are associated with low risk of harm. This is particularly important when the conditions patients suffer from are not life threatening.

    If the Registry receives 3 negative reports of patients using the same treatment for the same condition, a “warning” is submitted to the health authorities. The same is done after only one report if the condition is life threatening.

    Three of the 5 patients had been diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and all of them have related their unfavorable outcomes to the treatment method called Lightning Process (LP), a 3-day training program designed by British osteopath Phil Parker.1 They had all followed the recommendation given by the LP instructors during the treatment to ignore what they sensed as their bodies' symptoms of being pushed too hard. The patients had been diagnosed with CFS/ME 10, 2, and 7 years, respectively, before attending the LP treatment. Six to 12 months after the treatment, all 3 experienced a strong relapse of their CFS/ME symptoms. One patient expressed that “to follow the advice from the LP instructor eventually became a direct risk to my health.”…..

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    Last edited: Jan 27, 2014
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  5. Snow Leopard

    Snow Leopard Senior Member

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    Just a friendly warning since I am not really up for moderating this thread right now (much).

    Please tone down certain aspects of this discussion, specifically questions about whether certain people do (or do not) have a diagnosis of CFS or ME.

    At the same time, I suggest that it is probably not wise to debate second hand anecdotes about improvement or recovery. If you wish to state your personal experiences, then that is fine (and obviously this shouldn't lead to debate about whether those experiences are real or not).

    Lastly, please refrain from accusing others of posting bile, or other insults. If there are particular inflammatory posts, then report them individually.

    Thank you.
     
    SOC likes this.
  6. Snow Leopard

    Snow Leopard Senior Member

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    @Dster, we are all entitled to our opinions. On this forum, we are entitled to our opinions so long as we are not deliberately attacking or baiting others. Unfortunately there is a tendency to dig up comments made by people we don't like that puts those people in a bad light. A practise that I don't personally agree with, but it is something hard to control on the internet.

    Many of us on this forum have tried all sorts of treatments and methods that we hoped would lead to improvement or recovery. Many of us are vocal about what did not work for us and are often sceptical about claims about treatments. The more bold the claim, the more sceptical we are. Extraordinary claims need extraordinary evidence. It might not be fully rational, but the more secretive the treatment, the more sceptical we often are. What do I mean by secretive? This includes a lack of data being published for example. Claims about supplements are often guilty of this for example.

    Various supplements, diets etc don't work for most of us either, but if we are less sceptical of these, it is when a plausible and detailed scientific story can be told.

    Many are also very sceptical about anecdotes in general. Personal experiences are one thing, but anecdotes are another. Second hand experiences are much less valuable than sharing our own personal experiences.

    All I can say is perhaps rather than spending your energy debating and defending an anecdote, you could actually try the treatment you are defending.
     
    Last edited: Jan 27, 2014
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  7. lansbergen

    lansbergen Senior Member

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    Amen
     
  8. Kina

    Kina Moderation Team Lead

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    MeSci likes this.
  9. soofke

    soofke

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    Dutchy
    ;)

    question; if you found something (or rather my mother did from a book about ME) that seems to do the trick but that's imho too "out there" to just bluntly put on a message board, what would you do?
     
    Last edited: Jun 14, 2014
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't think that anything is too 'out there' unless you are talking about something like 'therapeutic rape' or eating babies!

    I did a quick Google search (don't usually use that monster but I needed translations) and it looks like the same kind of psychoquackery as CBT, Lightning Process et al., treating ME as a psychiatric condition. Which of course it is not.
     
    Wildcat, ukxmrv, Sushi and 1 other person like this.
  11. Dster

    Dster

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    I went on the lightning process at the end of January this year. Since then I have been going to the gym three times a week, playing golf once per week and doing HIIT at home 1-2 times a week. I have lost fat and gained muscle. I feel phenomenal. I go to the gym at 7, work out for an hour, shower and go to work. I can't believe it's me - LP has transformed my life - my energy levels are higher than when I was a student - I'm now 51 years old. If you have the money go do it - if you haven't, buy the books. I'm not an LP troll, just someone who has direct and indirect proof that the process works - as I've reported before a colleague did the process first and she was cured too
     
  12. Dster

    Dster

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    I was never defending an anecdote - the woman in question was my direct report and I was closely involved in her day to day struggle with ME - equally I have been privileged to share in her cure and her utter joy at regaining her life - she was transformed and remains transformed by LP - I urge anyone reading this to give it a try
     
  13. Raindrop

    Raindrop Senior Member

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    Dster,
    Fascinated! Can you tell me how long you were ill and what Illnesses you believe you have had.
    Also severity level and level of functioning prior (maybe a brief description?) Have you always been working
    even at your pre-"cure" stage? What is the cost and time commitment of the Lightening Process?
    Many thanks and CONGRATULATIONS!!!!
     
    justy likes this.
  14. soofke

    soofke

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    Dutchy
    I think the viruses responsible for this are so minor, yet with major effect due to their location (gut, brain), that all sorts of things could trigger a recovery. So good for both of you :hug:. But I also think there's a significant group that could actually get hurt by even trying it, if only financially.
     
    MeSci likes this.
  15. Daffodil

    Daffodil Senior Member

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    could you and your friend have had major depression and not CFS? often, depression can manifest many of the same symptoms.

    do you have any NK cell function tests?

    how can emotion regulation be our problem? I sleep most of the day and barely feel emotion at all due to brain swelling.

    thanks
     
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  16. Kina

    Kina Moderation Team Lead

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    LP treats mental conditions, not physical conditions.

    I would strongly caution people who are reading this thread NOT to put out one cent/penny to support Phil Parker's scam, quackery and cult-like pyramid scheme if you have ME because there is no way on God's green earth that standing on a piece of paper with an X on it and making affirmative statements about not 'doing' ME is going to cure you of ME in three days. There is absolutely no scientific evidence that this training program does anything for ME -- it might help with depression, anxiety, stress etc because it does rely on a form of CBT.

    It's more than likely that those who say they have ME and then state a cure have either diagnosed themselves or been misdiagnosed. After all, I did read somewhere that up to 44% are misdiagnosed and have treatable conditions.

    These LP practitioners have NO medical training.

    I heard from someone, that posting positive material about LP after you have completed the training will earn you a bit of cash (can't confirm that though).

    I, personally, think it's a crime that people are making money from offering bogus 'training programs' like these to people with serious physical illnesses.

    http://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

    http://liverpool-leftovers.blogspot.co.uk/2007/02/quacktitioners-and-quackometer.html

    This is from the LP course material

    LP will not cure ME. LP trivializes our illness. It is an insult to all of us.

    Thirteen year old attempts suicide after LP

    Enough said.
     
  17. ruben

    ruben

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    suffolk
    Dster, good to know you are still well, I have sent you a couple of queries by way of a conversation
     
  18. lansbergen

    lansbergen Senior Member

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    I agree.
     
  19. manna

    manna Senior Member

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    i guess these have been posted on PR before but just in case..:


     
    Wildcat likes this.
  20. Kina

    Kina Moderation Team Lead

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    Thanks @manna -- here are some of the points re: what Phil Parker pushes for those who are unable to listen/watch the videos.

    Part 1:

    • Why are there so many positive comments on LP websites when the comments are turned off?
    • Training course -- therefore doesn't have to be regulated. It's not accredited anywhere!
    • Bit like a pyramid selling technique -- to become a LP practitioner, you must undergo the training course yourself.
    • If LP doesn't help you it's because YOU have not listened to what the trainer has said or because YOU don't understand it or YOU have lacked commitment to apply it.

    Part 2:

    • It's CBT and life coaching -- you need to wise up about things that have gone wrong in your life and accept responsibility for them. You have to blame yourself. It's all about learned helplessness -- you are stuck in a rut. LP gets you out of the rut. LP -- make a commitment to break free from the rut. It's all the person's fault. Illness is a deeply rooted psychological problem to LP practictioners.
    • Uses NLP and autogenic training -- .
    • This is not unique.

    Part 3:

    • NLP is akin to introducing a new 'computer software program' into the brain and the new program will take over. The program will reset the body's hardware to overcome the medical condition you have.
    • Autogenic training is self-hypnosis. The mantra becomes a self-fulfilling prophecy.
    • You are sick because your negative thoughts are making you ill, the mantra will overcome this. The 'stop' rituals stop negative thinking and therefore make you well when you stop your negative thinking. Rituals banish the negative sick self from the mind.
    • 'LP trains people to become their own personal faith-healer'.
    --------------------------------------------------------------------------------------------------------------------------------------------------

    I hope at this point, it's very clear that LP would be absolutely useless to treat any physical illness.
     
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