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Has anyone been completely cured of CFS?

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

  1. Dster

    Dster

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    In denial? Before LP She couldn't walk down a corridor without collapsing and now she's just booked a hiking holiday in Greece next summer. I work with her every day and her instant transformation from seriously ill to running 5km is still there - she hasn't regressed, she's not in denial she has been cured of whatever it was she had - 6 months down the line she's remarkably well and planning a Marathon in 2015. To say its brain washing is an out and out lie or ignorance of the process - and further evidence that this site is full of folk who are putting off people who might benefit from LP
     
  2. Dster

    Dster

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    No it isn't - and your analogy is precisely how the LP might work. Change damaging thinking habits, remove stress, etc and the body's immune system recovers.
     
  3. SOC

    SOC Moderator and Senior Member

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    You say your colleague had every test in the book. If she had CCC- or ICC-defined ME, then they would have found immune dysfunction, chronic infections, and/or testable neurological abnormalities. Which did she have? Did the Lightening Process cure any or all of those? Is there evidence of that?

    We all know that in the UK, many people are diagnosed with CFS/ME by the absurdly broad Oxford Criteria which requires little more than long-term fatigue. That is NOT the illness we are talking about here, nor is it the illness called ME by the World Health Organization.

    I can believe that your colleague was diagnosed with ME by the Oxford criteria without having any of the symptoms required by the CCC or ICC. The Oxford criteria used in the UK includes many, many people with only psychiatric conditions. It's possible that the Lightening Process can "cure" people with psychiatric conditions.

    In order for me to believe that a treatment like the Lightening Process, which has no biomedical basis, has cured anyone of CCC- or ICC-defined ME, I would need to see pre-treatment evidence of immune dysfunction and chronic infection, or failed 2-day CPET followed by post-treatment evidence of the absence of those abnormalities.
     
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  4. Dster

    Dster

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    LP does have a biomedical basis in that it affects the brain which directly affects the biochemistry of the rest of the body.
     
  5. SOC

    SOC Moderator and Senior Member

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    Evidence? Scientific evidence, I mean.
     
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  6. taniaaust1

    taniaaust1 Senior Member

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    We dont hear of many at all who have ME (not refering to CFS) who recover esp when there is the added LP into this. We have heard of various peole trying it thou.

    (I like to find out what actual ME abnormalities a person had test results before I can feel sure the person probably had ME.. for myself, even thou I matched CCC criteria (which is generally the ME group), I wasnt happy to call myself a ME person till I had several ME abnormalities which had showed up to help support that to). I do not think we can trust diagnoses of elimination.

    It is possibly your friend had another serious illness or could of had ME and coincidentally got an improvement which may or may not of been related to LP. It isnt unknown for ME cases to go into remission with all kinds of things.. maybe she was going to have a remission anyway )(Cheney talks about many of his patients getting a remission). In my case my ME went into remission for years with aggressive rest therapy.

    thanks for sharing but sorry, you will get a lot of sceptism here due to LP isnt something we tend to hear helping this illness (in fact Ive heard of a couple of people being harmed by the process).

    If she did have ME and recovered.. it is very likely that sooner or later she could regress again. I did, I was fully recovered but caught a virus and that gave me this illness all back again. I doubt any kind of therapy could help something like that.
     
    Last edited: Jan 26, 2014
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It would be interesting to see soneone with low nk function have this return to normal ir see viral titres or neutropenia improve the lp. If they were certain lp was a cure then u would think the bosses etc of lp would do a study of before and after results to prove their treatment. Even just a small handful of people to start with would be low cost and interesting.
     
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  8. Dster

    Dster

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    The difference is the level of bile and abuse that LP elicits - it's a couple of orders of magnitude greater than anything that any other potential remedy receives.
    What I think I've learnt from my foray into this website is:
    1. There are radical and liberal sufferers of CFS/ME
    2. The radicals believe themselves to be special cases, and different from the run of the mill sufferers
    3. They are generally closed off and in some cases extremely abusive to anyone promulgating a non biochemical
    cure/treatment, especially LP, which seems to inhabit a special place in their hearts - only they know why
    4. If anyone has been cured they never had it in the first place (circular argument or what - poetic)
    5. The liberals are more open to non biochemical approaches, but are probably put off trying by the vociferous minority of radicals
    6. Anyone visiting this site would be put off trying LP, for which I have personal, incontrovertible evidence that it works, albeit for NHS-diagnosed CFS/ME (rather than the higher form of CFS/ME which the radicals suffer from)
    7. No one in the UK is qualified to diagnose this mysterious, higher form of CFS/ME
    It's been an interesting journey into the human psyche for sure - ego and envy are evident, as in all walks of life
     
  9. Wildcat

    Wildcat Senior Member

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  10. Butydoc

    Butydoc President

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    This disease doesn't discriminate. It doesn't have a political affiliation . It doesn't care if one is liberal, conservative or radical. Many of the posters on this site have had this disease for many years and have tried many forms of treatment which has failed them and at times were left worse off. Trying a new therapy with little scientific evidence is difficult for many of us because of the disappointment when it fails and the likelihood of increasing there misery.
    Science may not be the perfect tool, but it is the best one we have to evaluate the effectiveness of treatment.
    Testimonials are frequently wrong. In the health care business, we use to treat burns with butter because there were testimonials of its effectiveness. After some scientific studies, it was determined that the use of butter actually increased the likelihood of infection. I'm sure we would still be using butter if no studies were performed.
     
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  11. maryb

    maryb iherb code TAK122

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    @Dster
    Sorry I'm not well enough to read through much of this thread - I'm too sick, I don't feel like a radical.......is your purpose here to promote LP as a cure for NHS diagnosed ME/CFS? Not wanting a debate just asking a question.
    As far as attending a LP meeting - I couldn't.......neither could I attend hospital sessions for CBT or any of the other
    offerings of the NHS

    I have a friend who was diagnosed with ME by the NHS - she was later found to have had diabetes,
    which had been overlooked in her blood tests 4yrs after they were done. this friend drives, has a life, socializes, out 'til late in the evening, up early, no meds or supplements other than for diabetes. She is still classed as having ME on her NHS records, no she doesn't have the same illness as me, is mine a mysterious higher form of ME, I don't know but it sure as hell aint much fun. Lost my job, my friends, my hobbies, my lucrative salary, my car........

    ME doesn't stop educated, intelligent people from thinking, discussing, offering advice, information and support, when they are well enough to, it certainly stops them doing things........a very unkind tone has crept into this thread.
     
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  12. Jenny

    Jenny Senior Member

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    Unfortunately, anecdotal evidence is not 'incontrovertible'. It is well-documented that spontaneous remission is possible in cases of both ME and CFS, so one can never be certain that any particular treatment is the cause of apparent recovery, in the absence of controlled trials. (Very difficult to conduct for psychological treatments.)
     
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  13. Snowdrop

    Snowdrop Senior Member

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    @Dster

    Hello Dster

    May I ask what brought you to visit this website?
    From your postings it would seem that you are only engaged in discussing the lightning process.
    And that you yourself do not have ME. Have you read any of the other information here?
    If not, I would suggest the 'About ME/cfs' section to familiarise yourself with the illness this website is about.

    You seem not to have an open mind on this subject either as you come across as a dogmatic true believer in the LP process.
    Even though you are not sick (correct me if I'm wrong) and have nothing personal on the line in terms of whether a treatment might help. By your postings you seem quite passionate that LP works. Since you are not ill perhaps you should allow us the luxury of declining a treatment option that for some of us at least does not seem valid.

    Plenty of us are prepared to consider a great many different treatments.
    As I understand it (again correct me if I'm wrong) LP is expensive. That too plays into the need to have some kind of evidence.
    So many of us have very limited financial resources.

    I have ME. I am ill. I am ill in the same way that someone with AIDS or rheumatoid arthritis or cancer or multiple sclerosis etc is ill. Does lightning process cure these illnesses too? Or is it a treatment specifically targeted to certain illnesses?

    It's simply not true that we don't demand evidence for supplement treatment. Just click on Forums, scroll down to miscellaneous resources and click google site search and enter 'supplements science research' or something similar.
    There are pages of applicable threads debating what science is saying regarding the use of supplements and how the various biological pathways work.
     
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  14. Dster

    Dster

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    I have been diagnosed with CFS/ME - fact
    I have seen LP cure a colleague of what was NHS-diagnosed CFS/ME - fact
    I know she delayed doing LP because of this website - it cost her a year of her life she'll never get back - fact
    That's why I'm passionate about the lies peddled by some on this site about LP - fact
    I have no vested interest in LP - fact
    I have a BSc and a PhD in Physics and believe I am a rational thinker - fact
    This article posted by Wildcat (http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me) is full of inaccuracies regarding LP, unless my colleague is an inveterate liar, which she isn't - fact
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The level of bile (IMO not abuse) towards LP is due largely to the facts that LP is so heavily promoted by its practitioners and advocates who stand to benefit financially from it (I'm not saying that you are such a person, please note) and that it has a bizarre level of secrecy about it, which is not normal in a science-based therapy but is found in some faith-based activities. Another reason is that a lot of people have become more ill as a result of it. This illness can make people very desperate, and we get angry when we see 'quacks' preying on this desperation and making sufferers even more ill and poor than they were already.

    I am also not aware of ANY well-conducted research or scientific evidence - or even well-drafted scientific theory - that it can or does work.

    There IS a good scientific basis for believing that ignoring ME symptoms can cause harm, and an increasing body of evidence as to the reasons for this.

    A number of people here favour various 'non-biochemical' treatments involving things like electromagnetic fields (or avoiding them), meditation, etc., although very few would claim that these had cured them or anyone else.

    You are in any case right in that many things can affect biochemistry - in fact, everything we do and experience does this.

    But it's a big leap from that fact to claim or believe that a rather strange psychological treatment can cure a physical illness. If only it could - we would be beating a path to the LP doors!

    Few of us even claim that treatments that we prefer, such as antiviral drugs, diet and supplements, will cure or have cured us. We hope, but that's about as far as it usually goes. (I'm still hoping!)

    A decent level of remission would make most of us very happy, I suspect.
     
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  16. Dster

    Dster

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    Another anti-LP myth - "bizarre level of secrecy" - give me strength, you can BUY THE BOOKS for goodness sake - how secret is that?
    Plus my colleague assures me there is NO SECRECY involved whatsoever - another example of someone peddling BS about something they know naff all about - shameful

    http://www.amazon.co.uk/Get-Life-You-Love-Now/dp/1781801746/ref=sr_1_1?s=books&ie=UTF8&qid=1390852401&sr=1-1&keywords=phil parker

    http://www.amazon.co.uk/Introduction-Lightning-Process®-First-Getting/dp/178180057X/ref=sr_1_3?s=books&ie=UTF8&qid=1390852401&sr=1-3&keywords=phil parker
     
  17. Wildcat

    Wildcat Senior Member

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    Phil Parkers Lightning Process is little more than an old hypnosis ‘Stop’ technique - which can be learned from any hypnotherapist for about £40.



    Some of us learned all the hypnotherapy and coaching devices that Lightning Process consists of decades ago, before Mr Phil Parker did in fact (unless he learned them whilst still at junior school!). But those techniques were not taught in a context of ‘training’ away serious organic diseases.



    Really, the idea that anyone who criticises Lightning is “closed minded” or are “radicals”, or full of “bile” is without justification. Especially as so many of those who promote Lightning Process make it clear that Lightning is their first experience of NLP, hypnotherapy and coaching, and so are less able to evaluate whether or not Lightning is unique.





    Phil Parker (Lightning Process) says that people with ME don't "Have ME” - he says we "DO" ME.

    The 'reasoning' is that if you "Do" something, you can equally STOP "Doing" it! So he ‘trains’ sick people to believe and say that they are merely “Doing” illness. That is an example of how Parker etc apply NLP inappropriately to physical illness. LP literally bans you from thinking/saying that you are ill.

    The idea is an NLP one of changing the Language used in order to cause changes in behaviour.

    One of Phil Parker’s tactic is to 'use' language to try to convince people they are not ill.



    Here in the UK, Phil Parker’s has sought and generated a lot of publicity for his extravagant claims about ‘training’ ME away. Mr Parker claims to have discovered what causes and perpetuates ME, but has not presented his findings to any UK ME conference where his claims could be examined in the light of the quality biomedical ME research.


    That world class biomedical research has uncovered damage and dysfunction in nearly all the organs and body systems of people with ME.


    And it is urgent that biomedical research to find the cause, test and cure is properly funded now.


    Even veterans of holism are now putting biomedical ME research as the top priority for funding .


    Worryingly, Phil Parker's device of putting the onus on the client to decide if they are `ready' to `change' and to `do the work' is the oldest trick in the personal growth training world. I first encountered that one in 1975! It must be a good trick as the commercial personal growth world is still using it – And as a trick it Still Works – so many people fall for it!

    Good therapists and trainers do not use such manipulative devices to sell wares, and are very concerned to identify if their client has a serious organic disease. If a therapist or trainer is not concerned about the nature of the illness, or even its very existence, but insists on redefining it according to their latest box of NLP tricks, then it is wise to question their professionalism.

    Non medical therapists and trainers cannot in law diagnose. If they start to unofficially diagnose by redefining the disease as something else they are stepping on very thin ice in terms of their professional ethics and UK Law.



    It is further noticeable that the long established hypnotherapy and NLP schools steer well clear of claiming to treat, cure or ‘train’ away such serious and complex neuro immune diseases as ME.





    Converting Myalgic Encephalomyelitis from a serious multisystem (sometimes fatal) disease, into a supposed `state of stuckness' doesn’t sound so clever, or responsible.

    .
     
    Last edited: Jan 27, 2014
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I was not aware of this book, and I and others have previously had difficulty obtaining details of the process. (I don't know how much detail is provided in the book.)

    But from reports there does seem to be another type of secrecy which involves telling patients not to discuss anything that could be remotely described as 'negative' or illness-related with each other. Some patients appear to have been afraid to do so. This is not normal in healthcare.
     
    Last edited by a moderator: Jan 27, 2014
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  19. Snowdrop

    Snowdrop Senior Member

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    My mistake. I was not aware that you have been diagnosed with ME/cfs.

    Perhaps you’d be willing to share some of your personal history as it relates to becoming ill.

    And if you are ill, then perhaps you will be doing the lightning process yourself and will be able to keep us informed as to your progress. I’m sure some here would be interested and find it instructive.


    As to informing us regarding your academic credentials I find that useless in the context of whether or not that makes you correct in your assessment of LP.

    I have known many people with advanced degrees over the years. It’s possible for anyone to be rational even if they never completed a single degree. Holding an advanced degree doesn’t confer some blanket ability to always know the truth or what’s right.


    Perhaps you’d like to post on the inaccuracies in the document you mention (Wildcat post).

    And You did not answer my question as to what illnesses the LP is able to cure.

    Perhaps you’ve addressed this elsewhere. If you could answer it here or point me to the thread that would be great.


    You were unwilling to engage with my comment that we do demand science evidence from supplements. Ignore the inconvenient. You alleged we don’t care about evidence outside of expecting it from the LP.


    And I don’t think anybody has called your friend out as a liar. She’s not even here to comment. We are questioning what illness she had. What were her symptoms? How long was she ill?


    There are people here who have been sick for decades. With an organic illness.

    They suffer many neurological and hormonal and autoimmune symptoms.

    Are you saying to us that the lightning process can cure us?

    Because if it can, that’s a pretty big deal. Seriously.
     
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  20. Wildcat

    Wildcat Senior Member

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    Phil Parker, as inventor of ‘The Phil Parker Lightning Process’ has created and taught other courses over the years.


    In 2004 Mr Parker ran beginners holiday healing courses in Spain (20 hours over 5 days) through his European College of Holistic Medicine. Parker advertised those intro courses as "a powerful and magical program" and “A pathway to a new career”... and issued a certificate.
    Phil Parker also claimed an ability to “step into other people’s bodies” to assess what was wrong with them.



    Phil Parker’s ‘Healing course ‘Module’ 6 (2 hours) introduced the use of auras for diagnosis of a client’s problems.... astral bodies ….organs as metaphors …

    In ‘module’ 8 (2 hours training) beginner healers were encouraged to explore their hapless clients past lives by using tarot/medicine cards to find out if their clients had been 'cursed' in a past life:




    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





    http://www.healinghawk.com/prospectushealing.htm

    http://web.archive.org/web/20070707050636/http://www.healinghawk.com/prospectushealing.htm



    ….“Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join.


    As a child, Vicci Hands was extremely scared by hearing voices that no one else could; the fact that what these spirit voices said came true just made things worse. She was fortunate enough to come across a number of positive influences and mentors who helped understand how to harness her abilities for healing. As a result of her own experiences, she has a very down to earth approach to the subject. This, combined with her background in education, makes her a very powerful and approachable teacher’……..



    ……. Module 8 Using Divination.

    ‘This module looks at the use of divination medicine cards and tarot as a way of making predictions.


    From a healing perspective, divination is useful in creating a strong connection with healing/spirit guides. It can also help you to understand the spiritual background of a client, which may be essential in helping with a problem.

    If a client comes to you feeling they have been cursed, you may need additional information about their past lives in order to help them and this is where the use of tarot/medicine cards is beneficial.


    Healing can also be a time of change and new beginnings- recognition of strengths, talents and a time to let go of the past. Divination can help with all these important areas.


    In this module the anatomic section focuses on the digestion and urinary systems.


    In the practical session for this module, the students are required to make predictions about their client, using tarot/medicine cards and then discuss the relevance of the cards they have picked and/or treat that client accordingly.”…..






    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~








    Wildcat wrote: In 20 hours on Phil Parker’s course he claims that the beginner healers would learn about spirit/healing guides, chakras, auras, dowsing, energy clearing, meridians, past lives, divination, medicine cards, tarot, meditation, creative visualisation.... and were encouraged to wander around clients past lives looking for possible 'curses'. Experienced healers were horrified at Parkers irresponsible Fast-Track intro to 'healing'.


    Phil Parker also used a version of his "Are you ready?" selling line to 'hook' his healing course customers back to do/buy more courses...."If you feel drawn to these courses then you are probably ready to join".

    .


    Re Module 8: People who do not believe in ‘curses’ consider teaching newbies to go looking for ‘curses’ as being deeply irresponsible. This is because it could be psychologically damaging to vulnerable people who can be attracted to such healing courses


    People who do believe in ‘curses’ are quite clear that only highly trained experienced people (experienced occultists or official Church Exorcists) should undertake such work.


    Either way, Mr Phil Parker’s 20 hour holiday ‘healing course’ would be classed as deeply irresponsible.





    Selling a brief NLP coaching course (Lightning) for serious diseases (and denying responsibility for it not working, and denying responsibility for it causing relapses, by calling it 'a training') must be much, much more profitable than teaching the A to Z of healing lore to absolute beginners at breakneck speed.

    .

    .
    .
     
    Last edited: Jan 27, 2014
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