Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A Balanced View of The Lightning Process

Discussion in 'General Treatment' started by emma322, Feb 25, 2015.

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Has the process helped you?

  1. Yes

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  2. No

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  1. emma322

    emma322

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    Hi everyone!

    I've never posted on this forum before so I thought I'd do a little post on the Lightning Process as I know it's something many in the ME CFS community are intrigued by or have strong opinions on. A little disclaimer: I am in no way affiliated with the process. Please read the whole post before commenting. And please be nice :).

    As many of us stuck in ME limbo with no support from the NHS do, I turned to the internet. I did a lot of research on the Lightning Process and concluded that not only was it mumbo jumbo (expensive mumbo jumbo) but that it was potentially dangerous, so I gave it a wide birth.

    My Mum, however, kept seeing articles about it in the Daily Fail and urged me to take a second glance, so I did for her benefit. I found a Facebook page and some online forums with people saying how wonderful it was and how it had helped them. This made me a little more intrigued. This wasn't a shiny brochure, this was real people with real accounts - could it be true? I was still hugely sceptical but my Mum wanted me to do it and offered to pay so I pretty much signed on for her benefit.

    I was sent a DVD of a Dr explaining the 'Science' behind the Lightning Process and the theory behind it (which is primarily focused on adrenaline) in a nutshell, their theory is that people with ME have an overproduction of adrenaline which causes all sorts of problems and shuts down or causes bodily functions to, well, not function. Although I was still hugely sceptical this made my ears prick up, perhaps they really had hit the nail on the head? Contrary to what I'd heard, they apparently do think it's a physical illness.

    I met the lady who runs the course who had suffered herself from ME for years. She credits the Lightning Process to completely curing her and I have to say (spoiler alert: the lightning process did not help me) I think she was totally genuine and I don't think there was any hard sell marketing going on: she truly believed it had cured her and she had ring binder upon ring binder of people who had sent her letters thanking her for their new found energy and lives.

    I have to say, from all of this, I approached the course with a feeling more than optimism, a feeling that this could really change my life.

    Day 1
    I'm not going to go into huge detail about the process itself because I don't want to get into any trouble about discussing intellectual property.

    Day 1 was a lot of marketing, about the process, about the creator Phil Parker, about the adrenaline response theory. The funny thing was, was that although 'officially' the lightning process recognises ME as a PHYSICAL disease we were told about the placebo effect in great detail and how effective it was, as well as being told to say we were 'doing' tiredness, we were not tired or we were doing worry, we were not worried, because in neuro linguistic terms that tells our brain that we have a sense of control over it.

    In the last half an hour we were taught the actual process which is a lot of moving around, speaking and arm gestures which is supposed to stop the adrenaline response in its tracks. Because the idea of it is to stop the adrenaline response, you are supposed to do it EVERY SINGLE TIME a thought crosses your mind about 'I'm tired' or 'Ohhp, felt a bit off balance there for a second'. As you'll probably all know for someone with ME that is the majority of the time. So every time you have one of these thoughts you are supposed to jump up and do the process. That could literally be all day long.

    Some people do the process on day 1 and apparently feel better or even cured. I did not. Our homework was to do the process every time we needed to. The practitioner said she expected this could be around 30 times. Now that sounds exhausting. But I did it.

    Day 2

    Day 2 was extremely similar to day 1. Some discussion about the process, any problems that had arisen the night before. All in the group said that they did not feel any improvement but the practitioner assured us that we would. We did various things like drawing pictures of how we wanted our lives to be when (not if!) we were better and did some more of the process.

    I have to say we spent very little time actually doing the process as much as talking about the process. We were promised that on day 3 we were to be taught 'an even more advanced version of the process' and we would 'come on in leaps and bounds'.

    Day 3

    Day 3 came and again we spent the first half discussing the night before and any problems that had arisen. By this day, I was feeling REALLY tired. I couldn't politely hide my tiredness and I was almost lying horizontal listening. The practitioner said 'You look so much brighter today, I can see that it's working, doesn't she look brighter everybody?' "I don't feel brighter" I replied "I feel really terrible today". I felt a little hostility there. I wasn't playing along. "Don't worry you'll come on in leaps and bounds today".

    The advanced techniques were basically the same process but with visualisation included. The same type of visualisation you are probably familiar with from CBT.

    On day 1 the practitioner had said that some people felt better by the end of day 1 and most people felt better by the end of day 3. At the end of day 3, when I really was not feeling any better I approached her and told her my concerns. She told me that sometimes it took longer and that the next few months 'would be a journey'. Well, that's certainly convenient.

    After the Process

    When I returned home that evening I was determined that I would not waste my Mums money. That even if it wasn't working I would give the process 110% so that if, in the end, it didn't work, I knew I had given it my all. I forced myself to walk to the corner shop, looked up at the blue sky that day and hoped that this would be the start of change.

    That weekend I also, although feeling my usual tired self, forced myself to go to the beach for a walk with my other half. Of course we mustn't forget that I was doing the process every time a negative thought crossed my mind. I managed to have a nice day and felt that maybe the process was starting to work. The next day even, I took my Grandad shopping. Everyone around me was so pleased with the progress I was making.

    Of course many of us have those better days where we attempt a task for an hour or so, feeling not so terrible, then a wave of fatigue comes over us. There is the opportunity to do the process. But what happens when you wake up and you feel you've crashed or you have PEM and you don't feel tired or have a wave of tiredness, you just ARE tired? What happens when you don't have a sudden moment of vertigo but all day you are dizzy? Are you supposed to get out of bed in this state and do the process all day long?

    I tried to, as much as I could, but I started feeling counter-productive. I felt that my few days of doing the process and pushing myself had caused this PEM (which, shouldn't have, according to the process). So I emailed the practitioner. Rest, she said. Don't push yourself too hard, too soon. So I rested. Except this bout of PEM or a crash lasted weeks, so slowly, although I was doing the process as much as possible, I was pretty much doing what I'd always done. I wasn't getting any better, so the practitioner offered to see me again.

    I thought there would be something significant that would happen when I saw her but we just did the process and some visualisation together and she said to me, not to lose heart but that there were times 6 months after the process where she had episodes of ME. This isn't exactly the same as being told we may feel better on day 1 and we certainly would by day 3.

    Since then I really gave the lightning process my best shot. You can tell from what I have written, hopefully, that I went into it with an open heart and mind and really gave it my full attention and best try but here I am, 6 or so months down the line and my health is not in a good place.

    ME is so often misdiagnosed that it makes sense to me that there are a range of illnesses labelled as 'ME' and perhaps some of those can be aided by the lightning process. As I said, she really did have lots of ring binders full of thank you letters, but it seems irresponsible to say it will work for everyone. The one positive thing I did learn from the process is on better days, if I started feeling nauseous for example, I would focus on it. That, in turn, can make it worse. Trying not to focus on it helps me to enjoy my better days.

    On the most part though, my better days are few and far between.
     
  2. peggy-sue

    peggy-sue

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    There is no scientific evidence or justification for PP's excess adrenalin theory.
    It's just a get-rich-quick-on-the-backs-of the-desperate scheme.:cry:

    (Disclaimer for legal purposes. This is my not so humble and personal opinion, it should not be taken as a reflection on PR or anybody else here.)

    If we had raging adrenalin, (which does not exist for very long - it gets metabolised very rapidly) we'd have problems with high blood pressure, not be fainting all over the place from OI and low blood pressure.:bang-head:

    I'm sorry you've had such a disappointing time, putting so much in and getting nowhere and wasting your Mum's money on this charlatan.
    It's not nice getting your hopes up, then having them dashed and leaving you broke.
    :hug:
     
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  3. Wayne

    Wayne Senior Member

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    Hi Emma,

    Welcome to the PR forum. Also, thanks for your report, and taking the time and energy to write it out.

    I can readily accept that some of these LP practitioners truly believe their therapy will help most pwCFS. And that they have a number of testimonials from people who've improved or recovered. What they don't seem to get is that many people can have symptoms of ME/CFS but not have it, and others actually have it.

    The former "may" improve, but the latter simply won't, and could easily end up in worse shape for pushing beyond their capabilities. Unfortunately, this is something these practitioners seem to be dangerously oblivious to. I'm curious, has your LP therapist at any point, whether subtly or not so subtly, inferred it's your fault for not improving? -- Thanks again for your report, and also again, welcome to the forum. :)
     
    Last edited: Feb 25, 2015
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  4. A.B.

    A.B. Senior Member

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    I'm sorry to hear that money went to this charlatan.

    PS: the "excessive adrenaline" hypothesis is pseudoscience. These hormones are typically downregulated in CFS as everyone who actually reads the literature will quickly discover.
     
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  5. emma322

    emma322

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    Thank you for your replies everyone!

    At the time I didn't know better than to know that the adrenaline theory couldn't be a factor in ME although I did question why, if that were the case, it couldn't be proved by a simple blood test measuring the adrenaline in the body.

    To be fair to her, she didn't imply that it was my fault although they do use the term "doing" you're "doing" fatigue etc. When I contacted her to say I wasn't doing well she encouraged me to rest and then when I contacted her again she invited me back, free of charge, and was kind and encouraging that I just needed to persevere. So, to be fair, all credit to her being kind - but that doesn't make it true or effective.

    I haven't emailed her since as I don't know what I would say. I doubt she'd give me any money back and I'm too polite to just be mean for the sake of it. It's not going to stop her doing it or change anything. Though you think she might have emailed me to see if I'd improved. Ignorance is bliss ay :).

    I just wish my Mum hadn't wasted the money as that put a lot of extra pressure on to 'make it work' although obviously it's out of my control! I am keen on getting Lyme testing, I live near the South Downs so I'd like it to put my mind at rest, and it could have been better spent there but there we go :)

    Emma
     
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  6. Esther12

    Esther12 Senior Member

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    I'd be cautious with that too. Personally, I'd avoid any of the more 'alternative' testing.

    I think you're being too generous to the LP trainer. For them to make these sorts of claims about the role of adrenaline and so on, without having good evidence to support their claims, is just nasty quackery. That she acts kindly to you while taking your money is not much of a compensation!

    I understand how desperation for recovery can leave people vulnerable to these sorts of things. It is very difficult.
     
  7. peggy-sue

    peggy-sue

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    Given the psychiatric lot have even been contemplating doing an official study on the "lightening your wallet process", it would appear even they are not well-enough educated to see past PP's silly invented theory.

    It's just a shame that government is so keen on any sort of business being set up, even really dodgy ones (eg. pay-day loan-sharks) it's not surprising that charlatans can get going with their conning so easily.

    You need to learn how to pace, Emma. Learn little energy saving tricks.:)

    A really good one is;
    Never stand when you can sit and never sit when you can lie down.:thumbsup:

    In fact, if you need to stand, you are better off shuffling around a little bit.

    If you shuffle, you don't need to spend so much energy balancing and you are shiting the workload between different muscle groups rather than straining the same sets in opposition to each other, in order to stand up.

    (you use hundreds of muscles to stand upright!)

    Also, when your leg muscles are all moving, they help to get the blood from your feet back up to your heart, by physically squeezing it up. Valves in your blood vessels then keep it up.
    This is called "The Muscular Pump", it's so important it has an official name.:)

    When the blood circulating in your body gets to your feet, it it at its furthest point from your heart -

    and your heart has to work really, really hard to push it back up. And much, much, much harder when your legs are not moving.

    That is why, when you are sitting - you should keep your feet raised. It helps your heart to get the blood around you.

    Your heart doesn't have to work against gravity if your feet are not on the ground

    All this doesn't sound like much Emma - but it is. It all adds up.

    If you can save your heart a whole load of extra work by following this,
    you'll have more to spare for nice things. :angel:
     
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  8. daisybell

    daisybell Senior Member

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    Hi @emma322 and welcome to the forum.
    I was interested to read your experience... I've tried Mickel therapy myself (with no benefit!), and I think lots of us have tried various quackery over the years!
     
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  9. emma322

    emma322

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    Hmm I know I'm being too kind really, I just know nothing will come of complaining. I'm just still baffled by all the praise on Facebook and letters, there were literally hundreds. What did they have?!

    Thanks Peggy Sue :) I've been ill for over 2 years now so I am pacing etc I just (as I'm sure is the exact same for most of us) want to be as proactive as I can in finding something to improve my situation. Once I've exhausted them, then I'll make the best of what I've been given :)
     
  10. jeff_w

    jeff_w Senior Member

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    Hi Emma,

    Welcome to PR and thanks for posting.
    This is a true problem. The Lightning Process, developed specifically for CFS/ME, denies that PEM would follow exertion. PEM is a fundamental feature of our illness.

    I would love to see the Lightning Process shut down permanently. I wonder how many people have been seriously harmed by it. Unless people are willing to speak up (like you have done here), demand refunds, publicly combat the LP with evidence against adrenaline theory, etc., this scheme will continue to flourish.
     
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  11. alex3619

    alex3619 Senior Member

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    If someone came up with an unproven, and counter-factual treatment for cancer, and marketed it, the medical community would be all over them. It shows how flawed the medical watchdog process is that they do not require repeated and independently replicated science to validate the LP before they permit it to be marketed. This is an area where oversight is failing.

    Of course there are parallel issues with supplements and off-label use of antibiotics, antivirals etc., but the circumstances are different there. Many of these have some credible scientific evidence to show they work, just not sufficient. I hope that Montoya's RCT of antivirals is published soon.
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    @emma322

    Welcome to PR.

    While it can't be known for certain, it's possible that someone who benefits financially from the LP paid to have at least some of those letters and praise planted there. As a marketing tool it's not that unusual. It gives one a sense of comfort about the treatment if there seems to be positive reviews. Especially when there is little else upon which to assess the value of a thing.

    Also, I would not leave your mother out of the loop as far as what you are experiencing about being ill.
    There is some firm scientific information as well as the experience of many other people who are ill and who used to be completely engaged in life. Many have tried a variety of things which did not work for them. The evidence for exertion causing harm can be found here. I encourage you to help your mother assess this information and become an advocate for you as you look for treatment options.
    Good luck.
     
  13. taniaaust1

    taniaaust1 Senior Member

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    I kind of wish you would email her. It may help to throw her out of the illusion she's having that she's helping EVERYONE. Maybe lots are doing as you are and dont let her know when it didnt help, which only then leads her to believe you are all better and then keep misinforming people. Maybe lots in your group wasnt actually helped some may of even been left a lot worst!

    I know when I didnt go to a specialist for a while, he jumped completely to the wrong conclusion he hadnt heard from me cause he thought I was all better.


    It sounds like peer pressure was used to play a part in things eg getting good response from people

    Many or most people probably would play along with it rather then appear they have failed or risk rocking the boat one could say. So you really cant tell how many who did this with you were actually feeling better even if they said that there. People often to are able to convince themselves they are feeling better for a short time..but the placebo affect doesnt last for long if you are really sick.

    Maybe see if the lady will refund.. dont feel sorry for her. Why should she keep all that money for something which didnt even work. If you brought a vaccum at a store and it didnt work or something was wrong about it, you'd return it and get a refund. Just cause she's nice dont mean you shouldnt try to do so for your own sake.. as you are saying yourself.. that money could be spent a lyme test. Were you even warned it may not work?
     
    Last edited: Feb 26, 2015
  14. taniaaust1

    taniaaust1 Senior Member

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    Also as far as the adrenaline thing goes. I do get very high adrenaline due to my ME. That was noticable to me even before my tests showed it was high. This happens in my case not due to any kind of bad thoughts at all but as a result of just orthostatic intollerance.. being upright.

    umm doing that process would sky rocket my adrenaline due to the orthostatic changes every time I had to get up as my autonomic system struggles to balance my heart rate and BP when I change postions. My BP drops can drop to 0 on standing or shoot up to near 200.. all due to the ME itself and the dysautonomia symptom it causes. If I did that, I'd actually end up in hospital.

    Having to keep getting up over and over, would be dangerous for many of us and would actually increase the adrenaline due to the OI issues for many who have ME.
     
  15. ukxmrv

    ukxmrv Senior Member

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    I've heard this story so much from people who have done the LP and failed.

    The lack of treatment by the NHS in the UK and the existing Fatigue Clinics that blames patients symptoms on lifestyle things (sleep hygiene, lack of exercise, lack of pacing etc) leaves patients here ripe for exploitation. We get told by our doctors that there is no cure except for CBT and GET and when that doesn't work the health system dumps us.

    Add to that an ignorance of the types of treatment that are available by CFS doctors in other parts of the world. Few of our families ever seem to read actual published research or know of the work in Norway, or Belgium or the USA. They see our treatment choices by what-ever miracle cure that Daily Mail publishes and that is no way to judge them. Quality control goes out the window.

    I have POTS and Dr Julia Newton thinks that people with CFS often have POTS. POTs causes heart rate and BP changes on standing for me. This could possibly be what the LP is trying to correct with their adrenaline theories. There is no scientific proof behind what they are doing. We'd all still have POTS and maybe without adrenaline less likely to be able to stand. There is no proof though that the people they are "treating" have high adrenaline or that the LP can even control this.

    I've often thought that the LP is treating people with panic attacks and how that translates to curing ME is just plain dishonest on their part.

    One thing that does seem common is for young people to be talked into doing the course by family members who pay for it, drive them to the course and encourage them afterwards.

    It's relevant that you said that you didn't want to waste your Mother's money and that's another common theme I am hearing when talking to other survivors of the process.

    It's not been the case for you but I know of other people who have done the LP who are then semi-coerced by their family to pretend that it is more effective than it is. That's why I am skeptical if a family member comes onto a forum or makes a media report that something has cured their daughter/husband (a la Esther Rantzen).

    Thank you very much for writing this report. Really sorry that you had to go through this waste of time and money.
     
    Last edited: Feb 26, 2015
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  16. xrunner

    xrunner Senior Member

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    If this were true, fatigue would not be an issue, nor low blood pressure etc

    Greediness/ focus on money making

    Lack of empathy, intolerance to different views,

    Lying

    Greediness + intolerance to different views + lying are among the usual features of sects with evil roots. You can recognise trees by their fruits.

    Best wishes.
     
    Last edited: Feb 26, 2015
  17. ruben

    ruben

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    Hello Emma, your comments about LP are my thoughts too. I first gave it a go when the story broke about Esther Rantzen's daughter. Maybe around 2009. I have been unwell for many years but somehow for 90% of it I have worked full-time. The first thing I'm unhappy about is that I can't possibly see how, if you are working full-time, you just can't fit doing the process into the day.Or not as much as you'd need too.They should ask clients this BEFORE they hand over the £600 if they actually have the time to do it. Anyway last summer I was made redundant, so with the extra time on my hands I thought I would give it another go. It still didn't get me right. No matter how I tried I was still waking up in the morning feeling unwell despite applying it throughout the day and before I went to sleep. So to sum up either I wasn't doing it right, or not enough, or I have a condition which won't respond to it anyway
     
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  18. Purple

    Purple Bundle of purpliness

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    This caught my attention (the bolded part).

    I am severely ill (essentially bedbound, in a dark room) but I don't have these thoughts that everyone with ME *supposedly* has. I get frustrated by the limitations imposed by being so ill and/or by the some of the symptoms - but only rarely though. Great majority of time, I make the most of my very limited life and just get on with whatever little I can manage (with lots of help). I doubt that many PWME spend a lot of their cognitive energy on these kinds of thoughts that LP proponents claim we do, I imagine many (most?) long-term PWME adapt to their limited way of life and live their life the best way they can.

    Disclosure: Some time ago, I phoned a couple of LP 'practitioners' who went through a "preliminary assessment" on the phone, asking me several questions to "find out if I am ready for the course". They decided I wasn't suitable/ready because "I think too much". I am assuming that's a euphemism for something - possibly for "we don't want people capable of critical thinking here" :D
     
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  19. CantThink

    CantThink Senior Member

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    @Purple

    I agree.

    I don't have those constant thoughts, so how one get rid of them if one doesn't have them? My thoughts are much more confined than constant - my health related thoughts are usually in a few small time periods through the day because they relate to taking meds for pain management, POTS and controlling GI issues.

    I don't see this as any different to other illnesses. When you're in hospital the nurses ask you to rate you pain so they can decide whether pain relief is needed - it is normal to acknowledge how you are feeling, you are not expected to talk yourself out of it and pretend it's not there. I don't see why in this process pain, PEM or fatigue should be any different, and why people are expected to pretend they are not happening and that somehow acknowledging they are happening is self perpetuating them.

    Perhaps this kind of treatment might help people who have something like post viral fatigue and go on to develop health anxiety, or people who just have unmanaged health anxiety?

    I think even with those issues, this type of process is a lot of pressure on the sufferer to cure themselves or fail. Constantly analysing one's thoughts/paying attention to one's thoughts in the way the LP does must be quite exhausting regardless of what's wrong with the person.
     
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  20. peggy-sue

    peggy-sue

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    I think I paid more attention to symptoms when I first got ill - they were so odd and made no sense; and I needed to write them down for the gp.
    I do my best to ignore them now, they're just part and parcel of being.
     

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