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Article: An MD on the Lightning Process

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

  1. Gerwyn

    Gerwyn Guest

    There is no such thing as anecdotal evidence .It is either scientific or it is not. It is impossible to comment when there is no info regarding diagnosis.CFS has no objective meaning people with psychological problems can easily be given a diagnosis of CFS.There is no such danger with the CCC criterea for ME/cfs.Before any evaluation can be carried out I would need to know the symptom profile before and after therapyAnyone can say that something makes them better and actually believe it especially with the conditioning techniques inherent in the LP programe.It is however much easier to measure whether someone cant get out of bed as a result of engagement in this "treatment".I know one such unfortunate person
  2. Orla

    Orla Senior Member

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    Thanks Lazy bones. That confirms other accounts I have read. I also feel people can be hyped up a bit afterwards, and this could cause bad relapse later (along with the process itself encouraging people to ignore symptoms) . Very informative first post. Welcome to the forum, Orla

  3. Wayne

    Wayne Senior Member

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    Hi Lazybones,

    Thanks for your post. Your last sentence gets to the heart of how I view the LP process. I think it's similar to an experience I had a little over ten years ago.

    We had decided to move from Boulder, Colorado (with high elevation and high levels of pollution) to a lower elevation, cleaner air and more rural environment in Oregon (1400 miles). It was a HUGE challenge for me. I often wondered how I could take the next step and make it through the next day. By sheer force of will, I was able to do it however. I guess I used affirmations of my own during this time, such as, "I can do this"; "I HAVE to do this!", etc.

    By the time we got to Oregon and settled in over the next several days, I began to feel better and better. I guess just having the move behind us, plus the lower elevation, clean air, new surroundings, etc. helped give me a sense of well being. For about a week or so, I actually began to wonder if I had "overcome" my decades-long odyssey of dealing with this illness.

    And then the crash hit, fairly gradually at first, but then began to deepen more and more. Over the next several weeks and months, I plunged to my lowest level ever. At nights I would go to bed, wondering if I would wake up the next morning. I could hardly believe any human organism could withstand the intense bone-draining exhaustion.

    Looking back, I feel fortunate to have come out of this episode as well as I did. I've heard other stories of people who pushed themselves to the brink (many by doing the LP process), and never recovered to their earlier levels of functionality. I learned from this experience that one of the most dangerous things we can do is to push beyond our limits, which is why I've always been so wary of the LP and other similar modalities.

    I think now what happened is similar to what you describe. Through the force of my own will, I reached into my extremely limited reserves and drained them to an extent that I had never done before. I think some of the people who temporarily improve on the LP likely go through a similar process. Through sheer willpower, they go through the LP program of affirmations for a while, but then eventually collapse. It seems to me that this is probably a high percentage of the people that do the LP, but are never included in the LP failure rate.

    Anyway, just a few thoughts. I've not been reading this thread closely, so I don't know if this is pertinent or not. BTW Lazybones, welcome to the forum!

    Regards, Wayne
  4. Bob

    Bob

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    Wow... Dr Yes... thanks for giving me all of that to respond to!!! (Yes, I know, it's my fault for bringing the subjects up in the first place!)

    You see, this is news to me... and if it's news to me, then it's probably news to 90% of users on this forum, and news to 99.999% of the general public.
    I haven't got much insight into the Ramsay or Hyde definitions...
    My point is that some of you have very fixed opinions and know exactly what you mean, but many other people don't know what you mean... I'm just asking for clarity... I'm not disagreeing with anyone here.



    In England, the NHS (which diagnoses almost all of us) official uses 'CFS/ME' as their terminology...
    So although you might be clear in your own head about there being no such thing as 'CFS/ME', it doesn't make any sense to many other people...
    I'm just asking for clarity for the benefit of those who don't know what you know, or who don't automatically understand where you are coming from.

    I agree, we should all be clear about what we mean by CFS...
    But Gerwyn, for example, could state that he is referring to the Ramasy/Canadian/Hyde definitions, when he makes bold statements about ME... then everyone will know where he is coming from.
    I just see us all talking in circles a lot because a lot of people assume that others know what they mean. Maybe you haven't noticed the upset caused when people with CFS diagnoses are told that CFS isn't a neuro-immune disease.
    Please don't think that I disagree with many of the opinions on this forum... I'm just asking for clarity.

    Clinically speaking in the UK, CFS/ME is one condition... at least for practical and diagnostic purposes... So nothing is clearly defined when we are discussing these things, unless we define what we mean.

    I completely agree...
    I think the main point that I was making yesterday, was that I was asking that we treat people courteously and respectfully, even if we disagree with them... I got attacked for being a troll today because someone had a slight difference of opinion with me... I just don't think it is helpful for us if we attack people personally... and when we cross-examine someone, it can feel like a personal attack because of the aggressive nature of the messages... I don't think we need to cross-examine poeple heavily, unless we do it politely without accusations flying around, which seems to be impossible with this subject...

    I believe that it would be far more productive if aimed our attacks purely at the establishment, not individuals who happen to be happy with what they've experienced with LP.
    You might disagree with me - everyone else seems to.

    I think you misunderstand me and simplify things too much here...
    I want very specific diagnostic criteria, or we won't make any medical progress...
    What I am saying is, as the community exists right now, we don't know how many subsets of CFS/ME there are or what poeple are included in the CFS diagnosis... maybe you want this forum to be exclusively for ME patients diagnosed with the Ramsay definitions, but that is not the reality as it stands now... All I am saying is that we shouldn't attack people because they don't experience exactly the same illness as we do... I think the level of debate should be higher, and more sophisticated than that.

    Everyone disagrees with me on this point, but I don't see the point of cross-questioning...
    We won't be happy unless they declare that they don't have ME, or that they haven't really recovered...
    But what difference does that really make to the bigger scheme of our cause? It won't make governments change their minds... it really won't.
    We need to aim our sophisticated arguments high, at the establishment, not the individuals.
    We, in our minds, know that LP wouldn't work for us... and we know why...
    So why try to get this answer, that we already know, out of an individual?..
    It is already answered for us because we know the science of ME as it relates to our illness.

    I believe that it would be far more productive to concentrate our efforts on explaining to the establishment about things like: subsets, the nature of ME, diagnostic criteria, why we believe LP doesn't work for most people with ME, but why it might work for a small proportion of people diagnosed with CFS/ME, but not others etc.

    I have already written letters to leading establishment figures about the proposed study on children.. and believe me, I did not mince my words... I called it a form of child abuse... and said that it could lead to developmental and long-term psychological damage.
    But this forum is a place to refine our arguments, to learn, and to expand our minds, so I don't need to keep repeating the views which we all share... but I feel the need to stretch my boundaries of understanding and insight.
    I have been asking for clarity about certain issues on this thread, and I have proposed a refined approach to dealing with the issues surrounding LP... both of which I have felt shouted down about, and people have mis-interpreted my messages and points of view. (Comments not aimed at you Dr Yes).

    Please see my summary of the issues relating to LP, earlier in the thread, if you want to know about my views on LP.

    Thanks!... I was beginning to wonder if maybe I was one! :(

    Thanks for the feedback Dr Yes... I'm glad that you are examining my opinions, challenging my points of view and discussing the issues with me.

    I use this forum to help me form my opinions, and to learn, and I find it helpful if we challenge each other.
  5. Bob

    Bob

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    Dr Yes, that doesn't answer my question...
    I know LP doesn't cure ME, and it didn't improve his ME, but lazybones said that he got some benefit from the course, but not an improvement in health...
    He said that he could do more activities afterwards, and he was on a 'high'... so it doesn't look like it was all negative, even if his health didn't improve...
    So I just wanted to hear his opinion about this, for clarity.
    Bob
  6. Gerwyn

    Gerwyn Guest

    Bob there are three different definitions of ME in the UK.NICE ,OXFORD and LONDON.all producing a different patient group.There isno such thing as CFS if heterogenous diagnostic criterea are used.How many ways can you diagnose diabetes.With ME there are measureable neuroimmune ebndocrine abnormalities in CFS there is not
  7. Orla

    Orla Senior Member

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    HI Bob, I didn't see him say he benefited. He over-pushed himself and relapsed, so that looks negative to me (also potentially dangerous). Long-term effects are much more important than short term. But if Lazybones (I feel a bit bad calling someone that!) has any other info I would be happy to hear it.

    Orla
  8. Bob

    Bob

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    Hi Orla, he did say that there were some short-term benefits...
    I imagine that the relapse is the reason lazybones won't be recommending LP... but he wasn't clear about that...
    I wasn't clear that the relapse was related to LP, although I suppose, logically, it must have been.
  9. Bob

    Bob

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    Gerwyn, I'm a bit confused about what you mean...
    Are you saying that NICE, OXFORD and LONDON all produce a different patient groups for ME?
    I thought that your opinion is that there is only one type of ME?
    Or are you talking about subsets of ME?

    With regards to CFS, you say that there are no measurable neuro-immune abnormalities...
    But I don't know what type of CFS you are referring to, because many people in the UK and USA have a CFS diagnosis but actually have what you would probably call 'ME'.

    I'm just pointing out the confusion.

    Also, unless I am mistaken, the NICE guidelines refer to it as CFS/ME...
  10. flex

    flex *****

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    Cort

    thank you for confirming where you stand on the "ME/CFS" illness definition. I take from your reply that you are happy for this term to be applied to a physical illness, ME, as defined by the WHO and a psychological illness (Oxford criteria and others) CFS as defined by Wessely a et al regardless of the fact of bio markers or not. This term also inadvertently incorporates "chronic fatigue" "fatigue syndrome" and even "somatization disorder" by most ill meaning medics and psychs. It is your right to believe this. Incidentally the fact that they are specifically coded separately in the ICD appears of no great worry to you.

    This also confirms to me that you are perfectly happy to have people coming here who are suffering from idiopathic fatigue and claiming that they have ME. Not saying you would know in each case but just letting you know that most of us our unhappy about this multi patient grouping issue.

    Invest in ME do not share your sentiment but the ME association do. Its a free country!!
  11. Bob

    Bob

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    flex, personally, I would like the UK government to agree to use a more specific definition for ME, at least for research purposes...
    But nowhere does it say on this forum that you have to have a diagnosis of ME or CFS to use the forum... I just thought I'd point that out (unless I missed that bit of the rules?)
    And if people say they have ME, but you are of the opinion that they have idiopathic fatigue, then I can't see that you can do much about it...
    But what we can do, together, is to campaign for better diagnostic criteria, and more research funding, and better research... I honestly think we are all on the same side here, and want the same outcomes.
  12. flex

    flex *****

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    Well Bob

    that wasn't actually my point. My point was addressing the fact that many issues have been tagged onto the illness ME and what was the consensus here about how people felt about it. Anyone can come here and access this forum and represent themselves and their "cures" in anyway they damn well please.

    I wanted to know how Cort felt about this and if he thought the forum was being diluted and actually as the owner of this forum does he have any suggestions in how to limit the dilution of this forum into an any illness welcome forum under the terminology ME/CFS. Personally I do not think giving so much air time to such utter crap as the LP programme is going to help.


    Or should we just invite Wessely and White in to tell us all about the benefits of CBT and GET. After all it appears not to matter here anymore if you have ME, CFS, chronic fatigue, somatization or just the flu. Also you can come and claim cures from witchcraft if you like but no one is allowed to challenge your story because of .......? I don't know what word or phrase to use anymore.

    Is it a public forum first and an ME forum secondly.

    Is it not right that if we are the members of this forum we need to know where we stand and how this forum can or cannot represent us.
  13. oerganix

    oerganix Senior Member

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    Bob, s/he was perfectly clear about it, apparently to everyone but you. You say "I wasn't clear that the relapse was related to LP, although I suppose, logically, it must have been." That has been the problem with trying to reason with you all along. People make things perfectly clear and then you say it isn't clear. This poster posted a personal account of relapse after trying the LP, in a thread about LP, and you say it isn't clear that the relapse was related to LP? I hope you will apply the same "logic" to those claiming to be cured by the LP... it "isn't clear that the recovery was related to LP".

    Earlier in the thread you inferred I must not have read all your prior posts, since I disagreed with you about taking at face value the claim of "recovery" from someone who has been manipulated into claiming recovery, no matter what the facts are. I assure you I have read every post in this thread, all posts in the other two threads on this subject and a whole lot of the links posted by ME Agenda, where there a many personal stories that support the contention that LP is a form of brainwashing and coercion and forces its "trainees" to deny their objective reality.

    You still haven't responded to my point that taking a "recovery" at face value from one who must deny anything negative in order to be "doing" the LP totally invalidates their claim of "recovery". The question is not whether it is "fair" to not believe them. More importantly, is it "fair" to ask those of us still able to reason logically and to analyze the situation to suspend our ability to do so in order to "support" the self-delusions of persons who have been overcome by this brainwashing? That would force us to "DO" the LP along with them.

    You also haven't responded to my and others' point that this kind of exceeding one's limits can kill or permanently injure those with ME, as defined by WHO or CFS as defined by CCC.

    It appears to me that you just want to debate, so I'll not be posting again in this thread.
  14. Kati

    Kati Patient in training

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    This is a bit off topic, but in the same time, quite on topic.

    I would like to suggest to the owner of this forum to have a "ignore thread" button, so all the useless and harmful threads can be eliminated from the reader's sight at their own request.

    So all the nonsense therapies, spiritual practices, colon irrigation and any threads that are out of this world can disappear.

    My 2 cents.

    It is amazing that we all have a common goal of getting better, yet no one can agree on how. I really agree with flex that this "dilutes" the forum and makes it less attractive to those of us that are focused on real science. It's really sad.
  15. flex

    flex *****

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    Ah Kati,

    you just scuppered my plan to set up a healing foundation course charging $800 for two hours. It was going to be based on.......stones......no...I mean.......crystals. No not crystals.....umm......eye ball rinsing, yeah that's it eye ball rinsing...with vodka.


    No wait I got a better idea.... virtual chat room healing. Yeah, everyone send me the cheque and I'll work out some old shit......whilst I take a bath.

    Now where can I get it promoted and discussed for free..ummm... let me think. I need somewhere that no one can challenge me and I can keep drip feeding the same old bull**it.


    Ummmm.....
  16. Adam

    Adam *****

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    Bob

    I have a 'fixed' opinion on LP. It is the same 'fixed' opinion I have on CBT/GET. It cannot kill or supress or alleviate or eradicate or overwhelm or conquer or crush or quell or snuff out a virus. I believe it is right that forum members question its validity, the claims of those who report improvement, the nature of the illness of those claiming improvement by any of the aforementioned psychological interventions/treatments. I cannot contribute anything more to this specific discussion.

    Flex

    With regards the make up of Phoenix Rising Forum. I imagine the 'broad church membership' on here pretty much reflects the ME/CFS 'community' as a whole, with one significant difference; the 25% house or bedbound are probably under represented here. In particular, those considerably worse than me (housebound for last 10 years).

    I feel your frustration. At times it has got the better of me. Now it rarely does. I have a fairly adequate perception of who is who on here and as a result I am able to judge their input accordingly. Of course, I might be wrong about some people. And sometimes, new insights have made me reevaluate my perceptions. And there are always newbies. Which is good, because it helps keep the discussion fresh.

    I believe that until such time as bio markers and reliable testing for retroviruses are established we will continue to rub shoulders with fellow sufferers, who may have a similar illness experience, but in fact, a totally different disease.
  17. Bob

    Bob

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    Hi Adam, I think that we agree on that. But I'm not sure why you are addressing that comment specifically at me?

    I assume that you would say that LP can not cure ME, as defined by the Canadian criteria? I am very confident of this myself. I think that we all agree that ME is a physical illness, not a psychological one. Therefore I don't see the need to cross-question people who say they have benefited from the Lightning Process, because I know that LP has not cured them of ME, as defined by the Canadian Criteria. But I think that there may be many other reasons why an individual reports experiencing a subjective improvement in their sense of well-being after going on an LP course.

    I totally agree that we should challenge the validity of the claims of LP...
    But I don't think it's helpful to aggressively interrogate people, dismiss people or attack individuals.
    I just can't see the point. It doesn't get us anywhere.

    I would prefer to use sophisticated arguments against LP to explain to the world why it is an inappropriate course of action to treat ME.
    I would also prefer to expose the LP organisers for what they are.

    If we cross-question someone who says they benefited from LP then the following predictable scenario will play out:

    We will ask them what their diagnosis was, and they will say: CFS or ME...
    We will ask them what their symptoms were, and they will say: the same as yours.
    We will cross examine them about this, and they will say they had: fatigue, and malaise and other symptoms.
    We will ask them if they are really recovered or they just believe that they are, and they will say they are not completely recovered, but they can do more activity than they could before...

    So does this get us anywhere?

    I've seen this line of questioning so many times, and it just leaves the other person feeling persecuted and very upset, and I don't think it leaves us feeling any better than we did before.

    We already know, in our own minds, that LP can't cure ME, as defined by the Canadian Criteria.
    So why not aim our anger at the governments, and the LP organisers, rather than individuals?

    In my opinion, the most productive approach in arguing against LP would be to explain the complex issues, relating to ME and LP, to all the people who don't understand them. That's why I wrote out my summary of the issues earlier in the thread.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    AYME Link, Issue 37, May 2010: First steps in researching Lightning Process

    AYME (Association of Young People with ME)

    http://www.ayme.org.uk/

    AYME Link, Issue 37, May 2010.

    First steps in researching Lightning Process

    AYME's medical advisor, Dr Esther Crawley, will lead a research team at the Royal National Hospital for Rheumatic Diseases (often called the Min) in Bath, looking into interventions and treatment options for ME. This is thanks to successful funding of 164,000 from the Linbury Trust and the Ashden Trust.

    This is an interesting piece of research as it will be looking into whether it is possible to research two different approaches which both aim to treat ME in children: Phil Parker's Lighting Process (LP) and specialist medical care - which is generally found in the specialist ME clinics.

    At this stage, Dr Crawley's team will carry out a pilot project to investigate if it is possible to recruit to a randomized, controlled trial looking at both approaches. It will only show whether a larger scale piece of research is a viable project.

    This will be the first study of its kind in this area. If successful at this stage, the team hopes to establish a basis for a larger multicentre research project.

    Dr Crawley's specialist Paediatric ME/CFS service at the Min is the largest regional paediatric service in the UK and also provides services nationally. The team currently provides assessment and treatment for over 200 children from across the UK and Western Europe each year. Approximately ten per cent of the children referred into the service are housebound and assessed at home.

    The Phil Parker Lightning Process (R) is an intervention that is used for a variety of conditions including ME/CFS and has been developed from osteopathy, coaching and neuro-linguistic programming. It is a three-day training programme run by registered practitioners* and designed to teach individuals a new set of techniques for improving life and health.

    The research study will begin in September 2010 and will involve in-depth interviews with the patients and their parents, with the primary outcome measure being school attendance after six-months. It is hoped that over 90 children and their families will be involved in the study. They will be recruited after assessment by the specialist team at the Min.

    If the full research goes ahead Lightening [sic] Process will be under scrutiny for the first time, meaning that what happens during the process can be studied and evaluated and compared to other sorts of ME treatment. The study is only a small percentage of the total grant funding raised this year by the Bath/Bristol team for ME/CFS research and is being done because young people and adults asked for it to be done.

    Research is also being done on aetiology. The team have also just put in for a huge grant to look at genetics.

    Dr Crawley told CHEERS: "There is so much research in lots of different areas. Research on treatment is important. At the moment, we are not comparing treatments but seeing if we can recruit into a trial to see if we could investigate treatments in the future.

    "Lots of people are using LP. It's important to know whether it is helping or not. It is also important to know if there are significant side effects."

    Dr Crawley added: "As well as all of this, we will also use this study to start looking at which outcomes are the best for children. At the moment, no research has looked at those and it is important to find out from young people how best to measure outcome."

    ----------

    Ed: Registered with and licenced by Phil Parker's company. Unregulated.
  19. oerganix

    oerganix Senior Member

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    Yuk! So they're going forward with it? If school attendence is the measure of outcome they at least won't be able to fake that...but those poor kids, subject to brainwashing at a young age. Will there be anybody to keep in touch with the drop outs?

    The 'controls' are to have 'specialist medical care'....is that going to be GET and CBT?
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I am not aware of any action being taken by any party to halt the pilot or to force a review of the decision to grant ethics approval (if ethics approval has already been granted), so it not unexpected that the pilot continues as planned, for September 2010.

    A lot of people making a lot of noise on forums, Facebook and blogs does raise awareness within the patient community and beyond. But Dr Crawley and her research team aren't going to turn round and withdraw the pilot on the basis of internet opposition.

    Dr Crawley is in a position to defend the pilot on the grounds that it has the support of at least two national patient organisations. Action for M.E. are not opposing it and neither is the children and young people's organisation, AYME, (for whom Dr Crawley acts as Medical Consultant).

    So far, The Young ME Sufferers Trust has issued no public position statement and neither has the ME Association. I doubt very much that the MEA will. If they do, I suspect it would be along the lines of: We don't support the concept of LP, in principle, and will be monitoring this pilot, closely.

    Dr Shepherd is unlikely to stick his head above the parapet and oppose Dr Esther Crawley.

    Following up participants beyond the six month point (or beyond the project's life) is one of the questions raised in the FOI.

    This isn't stated in the Press Release. Again, this is covered in the FOI.

    Update on status of FOI: The FOI was submitted to the RNHRD NHS FT who will be responsible for patient recruitment.

    I could have submitted to both the RNHRD and University of Bristol simultaneously, but it gets messy having the same FOI in, at the same time, to two institutions, especially if information were being held across two sites. It also increases the chance of being "ping-ponged" between two information and data offices.

    I have been informed in the last few days that the information requested is not being held by the RNHRD and I shall need to redirect my request for information to the University of Bristol. I shall be doing this on Monday. Unfortunately this means another wait of 20 working days before a response is due.

    Edit: Please see this Post #181 for update

    http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=81589&viewfull=1#post81589

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