1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Article: An MD on the Lightning Process

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 30, 2010.

  1. Uno

    Uno Senior Member

    Messages:
    106
    Likes:
    27
    Brighton, United Kingdom
    Absolutely....the fact that more and more 'professionals' are endorsing L.P is incredibly worrying. There have been several articles stating that M.E could be caused by an overproduction of Adreneline and by undertaking the L.P and controlling the 'fight or flight' mechanism through thought patterns the body then produces endorphines and reduces the adrenline output. This theroy is similar to the Amydgala retraining programme. In adults perhaps the adreneline theroy might explain certain symptoms but in children - their hormones and the glands that produce them are not fully developed yet. My niece is 8 years old and is showing signs of hormone inbalance already and is developing far too fast - if a child has problems such as this as well as M.E and is merely shoved onto an L.P program, blaming "thought patterns" for symptoms then whatever is underlying causing these symptoms will never be explored which is dangerous.

    My M.E Clinic are champions for the Lightening Process, one doctor and my rheumotologist wanted to send me on the course due to experiencing really strange symptoms equating to something wrong with my adrenal gland. But my gut instince was that something is really not right. The M.E Clinic dismissed it as idopathic "pseudosymptoms", my G.P said it was agrophobia panic attacks (I worked in PR and media for years and have no social issues whatsoever!) and only on a desperate jaunt overseas to see a doctor did they find something wrong with my pituitary and want to rule out a possible pheochromocytoma. My G.P refuses to believe that there might be one of these present in my body due to the catecholamines test being inconclusive. The specalist I saw overseas wanted to repeat this test every month yet I am refused it over in the UK. Therefore by promoting the Lightening Process and not looking into patients actual symptoms, serious conditions such pheochromocytoma and even thryoid conditions will be chucked in the dustbin forever for patients if they carry on trialling it out and using it as a one size fits all treatment.
  2. flex

    flex *****

    Messages:
    304
    Likes:
    0
    London area
    Bob
    I am surprised that you think we need to explain that ME is different to vague "CFS" definitions. Surely we all know that and this is our (ME) forum not an all welcoming "fatigue" drop in centre like the ones run by the NHS in the name of ME.

    Cort
    please can you outline the purpose of this forum and whom it is supposed to be serving. Once and for all can you tell us whether you think a neuro immune disease and various stressed emotional psychological conditions should be carried, particularly here, under the same banner. I don't want a wishy washy mind body dualism answer. Lets put it like this, if this was an MS forum would you be happy with MS being grouped together under various fatigue state conditions. Cort in my opinion you are seriously running the risk of diluting this forum down into something that resembles the ME Association and various other so called ME advocacy groups. Why are you happy to do that?

    If that is what it is I am not sure I want to be here anymore.
  3. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    38
    re Recovery and people saying they are better than they are on LP

    OK a few examples of this problem. Participants are supposed to say they are no longer "doing ME". This is part of the process. A few comments from people who attended courses:

    Here are some relevant comments from here

    http://www.sayer.abel.co.uk/LP.html



  4. Knackered

    Knackered Guest

    I'll second this, I'd also like to know the direction this forum is taking.
  5. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    38
    One more from elsewhere

  6. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Hi flex,

    You and I, in our own minds, may know what we mean when we talk about the differences between ME and CFS... (although I'm not so sure that I do).
    But other people may not have a clue what the differences are...
    I was just suggesting to Gerwyn, for the sake of clarity for everyone who might stumble across this website, that we are all clear about what we mean when we use the terms ME and CFS when relating to a specific diagnostic criteria.
    I just think it gives more clarity to the discussion, especially to people who may not know as much about ME or CFS as we do.

    Gerwyn doesn't have to take any notice of my suggestion... it is just a point of discussion that I've raised.
    Really all I'm pointing out is that he seems to be very firm in his own opinions, without fully explaining what he means or how he has come to those opinions.
    I might agree with his opinions if I knew exactly what he meant.

    I usually use the term 'ME' when I mean CFS/ME (UK NHS diagnosis)... and I know that many people on the forum use the term 'CFS' because they have a CFS diagnosis, whereas I would say they have 'ME', and Gerwyn, for example, might consider that they have ME if they conform to certain criteria.

    And I'm not actually sure what Gerwyn does mean by 'ME', because I've never seen him clarify...
    He might just be referring to the outbreaks, such as the Royal Free and Lake Tahoe outbreaks, whereas I would be referring to the ME diagnosed by the Canadian criteria.

    It's all very confusing, and I'm simply suggesting that we try to make it less confusing...
    This is just my opinion... and people don't have to agree with it... but a discussion might be nice.

    Bob
  7. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Knackered, are you seconding the bit that relates to me?
    If so, I have posted a reply which I hope clarifies my opinions.
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    I agree.........
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    What is your definition of objective evidence?
  10. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Well, at least this is something that we can all agree on!
  11. lazybones

    lazybones

    Messages:
    7
    Likes:
    2
    This is my first go at using the forums so bear with me. I am so angry with all this talk about LP. I have had M.E. for 10 years now and can honestly say I have tried EVERYTHING to get better. I attended a private clinic where numerous tests were done confirming low NK cells with severely decreased function and many active and latent infections. I know this does not prove I have M.E. but certainly points in that direction. I had an acute onset and went from a hardworking person to bedbound overnight.
    In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, 880.00 as I had long lost my job, and went for it.
    There were 3 other m.e. patients at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits. We were told not to discuss the content of the course with each other during the breaks. We learned the 'affirmation' and stood on the floor on paper circles with key words written on them.
    Here is the big secret of what we had to say while standing on paper circles - WHEN YOU FEEL A SYMPTOM
    SHOUT- STOP! (stand on the paper STOP)
    SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
    SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
    SAY- I CHOOSE THE LIFE I LOVE
    SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE
    WAY (you are being your own coach here)
    ASK YOURSELF - WHAT DO I WANT?
    ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
    ASK YOURSELF- HOW WILL I GET THIS?
    TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
    EVERY NEGATIVE EMOTION
    AND DOING THE LIGHTNING PROCESS.

    There are a few more short affirmations and that's it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    If this is too open ended for you then that's the way it is. MS is in an entirely different category - it has biomarkers, a recognized locus of central trauma.... CFS, on the other hand, has diagnostic criteria that allow many different types of people to be diagnosed with it. Even the Canadian Criteria allows that - Coxy, I believe noted that she had PEM and cognitive problems as did Berit. That will be as true as long as we don't have verifiable subset and can break the disease apart. (I'm hoping that the Treatment Review program we're trying to get together will help to identify those). So long as people are being diagnosed with CFS then they are welcome here to talk about their treatments - hopefully in a safe environment. That is the bottom line of these Forums.

    If you need a less open environment then maybe its not for you. I would note that many many different treatments are expressed here. These threads draw an enormous amount of attention but quantitatively speaking they are at the very bottom of the list of treatments discussed here.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    This is post is highly critical of the LP and that's fine! No one is personally denigrated. No one is accused of being a troll. No ones diagnosis is treated in a disparaging way.. This is a good post in my opinion.
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC

    I apologize if I sounded belittling. I simply thought LP had been pretty much been bashed to death here.
  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    I assume Gerwyn is talking about study evidence - of which there is none. If he's talking about anecdotal evidence I'm sure there's evidence on both sides. We have heard from two people that did improve from it and from people who didn't.
  16. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Hi lazybones... a big big welcome to you... I'm glad that you decided to post a message...
    (You've picked a bit of a stormy discussion forum for your first post! But your message is valuable.)
    Hope you will continue to post messages,
    Bob
  17. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Bob -

    The only criteria and definitions set forth for ME that I am aware of are those of Ramsay, Ramsay-Dowsett (very similar) and Hyde (rarely, if ever, used by other clinicians - no knock on Hyde, just a fact); the Canadian Consensus Criteria are for an entity they labelled ME/CFS that is almost the same as Ramsay ME, though less particular about onset type and suspected mechanism (though I think Ramsay would ultimately have approved of the CC Definition).

    There is no such thing as a definition or diagnostic criteria for CFS/ME. The term "CFS/ME" was actually promoted by the Wessely school after they failed to get the term ME changed to CFS. (They rejected the notion that there was such a thing as ME, or else, like Reeves and the CDC, chose to define it as an acute neurological disease very different from the ACTUAL disease observed by Ramsay and others for decades -- rewriting or whitewashing history, as usual.)

    Therefore Gerwyn and others really cannot specify further what they mean by ME, as there is not much difference between the few definitions of it. However, it would be useful for those who refer to CFS to define what they mean. Obviously not everyone is aware of the different criteria, but I think we can survive any confusion as long as those of us who know agree to stick to the accepted clinical definitions.

    Clinically speaking, ME and CFS are different entities that overlap considerably as a result of the vagueness of the CFS definitions. The CC's ME/CFS captures those with Ramsay ME plus some more in its umbrella, but is far more restrictive than any "CFS" definition. It is really the only scientifically valuable definition among the currently 'popular' ones (i.e the "CFS" ones). And it is important to point out that many or most clinicians who diagnose CFS (or ME) do so without paying much attention to which criteria they are using, if indeed they use any criteria at all.

    Bottom line: ME is ME, CC ME/CFS is CC ME/CFS (similar to or the same as ME), but who the heck knows what CFS is.. it depends on which of the definitions is used, and which of the groupings of subcriteria are satisfied by a given case -- and even then it is hopelessly vague.

    Now, as regards scientific evaluation of the Lightning Process -- it is essential to know into which of the above categories the people who have claimed improvement with LP fall. It is also important to know their medical history in general, and that includes psychiatric history. But it is also important to consider the potential effects of the behavioral conditioning that is at the heart of LP, as these are designed to directly impact an individual's subjective appraisal of their own condition. There are a variety of ways people can be made to think they are better than they actually are; CBT research has revealed this (patients have reported improvement after CBT despite showing zero objective improvement in measurable functional ability). Therefore it is essential that NO ONE take the claims of improvement on LP or on any other behavioral therapy or treatment at face value.

    If I understood you correctly (and I'm sorry if I did not), you seem to have had at least two major points this week: (1) that we should use terms that are as inclusive as possible within our general community, even if that means altering our definition of ME, and (2) that we must be more accepting of subjective experiences of other patients, without subjecting them to personal scrutiny if they post them here. But neither of these ideas is scientific, and neither will get us anywhere but into more confusion and further from a real understanding of any population in question.
  18. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Hi lazybones,
    You have given what seems like a very neutral, honest and balanced overview of the Lightning Process...
    Based on your experience of LP, and taking the above comment into account, would you recommend the Lightning Process to anyone with CFS/ME?
    If not, could you tell us why not please?
    Bob
  19. Gerwyn

    Gerwyn Guest

    no worries Bob but calling it a vauge heterogenous disorder is not helpful.Me is a single disease.CFS does not exist in any real way it is a purely subjective label.If in medicine you recieve a diagnosis then you have a particular illness.There may be different symptomatic presentations but the illness is the same.What conditions are subsumed under the totally artificial CFS banner the lord only knows

    If CFS can be diagnosed 4 different ways then it suggests that there different conditions involved.neuroimmune endocrine symptoms are mandatory in a diagnosis according to the canadian criterea and not CFS.this is clearly a different diagnosis and suggests a different illness.One illness does not have heterogeneous causes.If heterogeneous causation is mooted then it strongly suggests different illnesses lumped into the dustbin caused by a diagnosis of exclusion with idiopathic fatigue at the core.Chronic fatigue syndrome as diagnosed by the Oxford critrea is in mind independent terms idiopathic chronic fatigue.Which is in fact fatigue of no known cause.They have chosen to attach the subjective suffix of syndrome
  20. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    :D I don't want to speak for lazybones, but I think he already did:

See more popular forum discussions.

Share This Page