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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
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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. Bob

    Bob

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    Hi Dr Yes, you make excellent points...
    I'll explain where I'm coming from on this issue...
    I find it impossible to dismiss everyone who has made a recovery on an LP course, as not really having had CFS/ME in the first place...
    If they had an official diagnosis, then their illness was as valid as ours...
    Don't forget that there maybe subsets of CFS/ME, and that the disease might progress differently in different individuals (see Mithriel's recent point about people who may have made a gradual physical recovery but are unaware of this and psychologically stuck in an illness mindset - he explains this point better than i do.)
    I have heard of enough individual cases to believe that a significant number of people with an official diagnosis of CFS/ME (which would be a CFS diagnosis in the USA) have been helped by LP.

    My argument is that we should develop our criticisms to take into account the reality of LP success stories... I think our arguments should be more focused towards discussions surrounding: the nature of ME, subsets, disease progression etc
  2. Orla

    Orla Senior Member

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    Hi Bob, I suppose for me, with such limited energy as we all have, I try to put what energy I have to good use. I feel that trying to argue with someone convinced of LP wouldn be like banging ones head of a brick wall, and we have enough brick walls to bang our heads off without adding another ;)

    Basically there are so many things to do it is a question of prioritisation. Since I can see good results in some of what I do (nothing spectacular I am afraid) I would rather focus on things which I think will produce tangible results. In a similar way, I woud not waste energy trying to convince Wessely or Sharpe that they were wrong, as they will not hear it or ever be convinced.

    I feel LP will go the way of all the other quack "cures" and will eventually die the death pretty much. Unfortunately this might not happen, or might not happen soon, and untold damage could be caused in the meantime, so this is the importance of critiquing it.

    Orla
  3. oerganix

    oerganix Senior Member

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    No point in arguing or reasoning with a cult member

    No Bob, I am not in favor of arguing with, or trying to reason with, those who have done LP. As for them having experienced a recovery, my point is that there is no reason to believe that they have recovered since part of the LP requires them to say they have even if they haven't, ostensibly as a part of their future recovery.

    I am unable to "accept their reality" when I know that their version of "reality" requires them to deny their present reality in order to gain some future reality that is premised to be a real recovery only if they are successful in denying their present reality.

    I really wish Coxy all the best. AND I would like to see her posting here a year from now, telling us that she is recovered, and not just denying how bad she really feels, so that she will be in compliance with the LP, in order to, at some future point, actually recover, when she believes strongly enough. I, personally, would not submit my ME/CFS child to a process that urges him to be so active that he ends up with blisters on his feet and in a wheelchair and that he is then supposed to deny that he is in more pain than ever before. That a parent would do that, and still support the LP tells me a lot about the lack of analytical thinking of that "trainee". For me, that constitutes child abuse, as does the proposed study in UK.

    I absolutely agree that we need to address our arguments toward those who have not done LP and may be considering it.
  4. Bob

    Bob

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    It seems that I did mis-read one of orla's message (that Dr Yes quoted, above)... apologies for that orla... very late at night... thanks for pointing it out Dr Yes...

    But my general arguments still stand.


    Yes, Dr Yes, this is precisely the point I've (not very successfuly) been trying to make...


    This is precisely what I've been arguing for Dr Yes... I've been trying to develop an argument here, over the last few pages... so please don't read my comments in isolation.
  5. Orla

    Orla Senior Member

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    "Recovery" and LP

    I have known of people who claimed recovery, who subsequently either admitted they were not actually cured, or went on to have relapses.

    It is part of the process to say you are better even if you are not, so unfortunately we cannot just take people's word for it.


    It is not that participats are being deliberately deceiptful (though I don't think you can quite say the same of trainers), but they are desperate, told to do this to cure themselves, and they want to believe this themselves.

    People can ofen get over excited about any treatment (I have done this myself), but LP is particularly bad as encourages a really extreme amount of over-optimism and actively discourages people from critically analysing it.

    Orla
  6. Bob

    Bob

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    Hi orla...
    I mis-read one of your messages, so apologies for that...
    Thanks for engaging in this discussion... I'm finding it very interesting.
    Bob
    :Retro smile:
  7. Dr. Yes

    Dr. Yes Shame on You

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    Actually, I don't think that's what most people here are chiefly concerned about.. they are more concerned that those who really have ME/CFS will be convinced into thinking that they do not, which would be potentially damaging or dangerous.

    Again, that depends on who diagnosed them and on what basis, i.e. by what criteria. As you know, a very significant percentage of those diagnosed with Oxford or Empirical CDC criteria CFS have idiopathic chronic fatigue, depression alone, etc..

    What do you mean by an official diagnosis of CFS/ME? Does that include the Oxford criteria? A CFS diagnosis in the US may be based on the Reeves Empirical Definition, but quite often is also based on the Fukuda criteria. This is where the stringency of diagnostic criteria becomes so important, as we discussed on another thread. If CFS is defined so loosely that it can include many who do NOT have some or any physical component to their illness, then we are burdened with false subsets which may well be muddying the picture of clinical improvement (e.g. in evaluating the efficacy of LP).

    ETA - okay a bunch more posts since I started this one.. can't keep up! Btw, Bob, rest assured that I have been reading your posts and arguments in their entirety, but isolated certain passages and addressed them only because I saw their points as discordant with the rest of your argument. I do agree with the other points you have made.
  8. Bob

    Bob

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    My point is that if someone has experienced a subjective increase in the quality of their life, then how can we can't dispute that?
    For example, we can't tell someone that they are not happier than they used to be, especially if we don't know them... how could we possibly know?

    Have we got a right to disbelieve people who have experienced a recovery?.. it is invalidating their personal experience of life, and it's not dissimilar to someone telling us that ME is not real... it invalidates our personal experience of life, and it makes us angry.

    I am proposing that we develop our arguments to take into account the subjective success stories of the Lightning Process, otherwise we undermine our own cause.

    Any thoughts?
  9. Orla

    Orla Senior Member

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    No worries Bob

    No problem Bob. I was going to try to explain my first post a bit better also, but it might have to wait till tomorrow.

    Orla
  10. Bob

    Bob

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    So maybe we should develop some sort of fact-sheet for people thinking of embarking on an LP course? This would be really constructive.


    Yes, this is exactly the type of arguments which I believe we should be developing (i.e. developing criticisms relating to diagnostic criteria and subsets etc.), rather than dismissing every personal success story relating to LP.


    I am talking about any official diagnosis in the UK or USA (we only use one diagnostic criteria in the UK). I am proposing that we take these issues and differences into account before we dismiss people who have experienced recovery... your questions are exactly what I am proposing we expand upon when criticising the LP... For example...if someone has a diagnosis of CFS, then I suggest that we can't just dismiss that... end of story... but we might do better to argue that not all diagnoses of CFS are identical diseases. And there are still many other issues which concern us that we can use to make a successful case against LP.


    Thanks Dr Yes... I think this is a very constructive discussion.
  11. Bob

    Bob

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    I hope that people understand that I'm not disagreeing with your points of view...
    But I'm trying to get us all to develop arguments which the supporters of the Lightning Process can understand, and can buy into.
    We all understand the issues clearly, but many people, apparently, are not persuaded by our arguments, so I think we need to refine them.

    OK, I'm must to bed now... Thanks for the fascinating discussion everyone... I'll check for comments tomorrow.
  12. flex

    flex *****

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    From the other LP thread



    Originally Posted by coxy hI everyone,

    I thought it may be of interest to some of you as to how myself and my son are doing since returning from our holiday.
    Sadly the LP hasn't helped my son at all. I don't think he got to grips with understanding what he was supposed to be doing anyway which certainly didn't help. He infact ended up needing a wheelchair by day 4 of the holiday, we were doing all the disney theme parks though so it did involve a lot of walking, but he has never needed a chair before. He suffered very badly with his legs on holiday and was tearful on a lot of occasions. He also got a lot of blisters on the soles of his feet which has never occured before, maybe natures way of stopping him walking. We are due to spend another couple of hours follow up with our trainer next monday so i will see what she says about the situation.
    As far as i'm concerned, i was doing fine until about day 10 of the holiday, i then suffered very badly with my legs and ankles, very stiff, they seemed to be worse if i rested, i really struggled to get going again. I feel very tired at the moment and my hands seemed to have died again which is really worrying me as that was one of my first symptoms when i first got ill, when i say died i mean i can squish all my fingers in and they don't spring back, as though the blood has gone from my hands.I'll keep you posted.

    Originally Posted by coxy
    Thanks for all your comments.
    I've been wondering as to why others haven't decided to give feedback after doing the LP? I certainly didn't have my brain taken away by the process, i remembered all of the poor people left behind on the forums that need to get as much info as possible from any treatment that is tried. I wasn't told by my trainer to keep away from forums or keep anything a secret (i had heard rumours to this affect before i tried the process). I don't feel i'm doing myself any negative type of damage by talking about it, i would probably be told i was if it fails i suppose.
    I have no idea what's going to happen to me next and nor would they know! All of us know we can go through periods of remission if we are lucky, only for it all to come flooding back again, i've fallen for getting my hopes up about my 15yr old daughter to often in the past, only to get deflated again.
    At the moment i'm feeling really nervous about going back to the trainer, i scared to death that she's going to tell my son off for not trying hard enough or something. I feel that i would lose my temper if she suggested that! I'm almost tempted not to take him at all. What do you think, especially those amongst you who have been through it?


    Originally Posted by flex
    Coxy,

    as you have asked for feedback I am going to be frank with you. I feel it is down to us to filter out information as patients and particularly parents. You can take my opinion and the counter opinions you may come across and do what you want with them.

    After reading the review of your attendance of the LP course and the fact that your son had to use a wheelchair for the first time ever I was further amazed by this quote:

    "At the moment i'm feeling really nervous about going back to the trainer, i scared to death that she's going to tell my son off for not trying hard enough or something. I feel that i would lose my temper if she suggested that! I'm almost tempted not to take him at all."

    Before reading this closing statement I thought you would have cut all links with this crazy woman. If one of my children was ever in that position I would not need to consider whether I should further expose my child to such potentially damaging nonsense in both a physical and emotional sense.

    I have had a feeling of "the emperors new clothes" about this thread from the beginning with people, who I guess rightfully so, allowed and supported you to make up your own mind about this course. Many others may have not expressed their true sentiment, giving you a slightly flawed sense of overall support. You may not have "had your brain taken away by this course" as you stated but people like this trainer are born manipulators. It is more a case of trying to break down your own competent thinking brain by force or by design to trick or coerce you into submission for their own purpose. This women has no real interest in your families physical improvement. Neither is she qualified, informed enough or capable enough to do so. How could she be if all the best well meaning doctors and scientists in the world are still struggling with such matters.

    If any person put my child in a wheelchair and then had the front to suggest that it was "his fault" somehow for not being a good little student they would not live to tell the tale.


    Please forgive the blunt nature of my reply but it seems right that you should hear what I believe to be the majority, probably silent, opinion considering you have expressly asked for comments.

    If this woman does appear on this thread I will verbally slaughter her with the truth.


    Originally Posted by coxy hi, everyone,

    Things are not going in the right direction i'm afraid.
    Strangely i seem to have taken on a new set of ME symptoms that i didn't suffer from before. Gone are the headaches and extreme brain fog, only to be replaced by an inability to sleep until at least 1am, digestive problems including very noisy tummy, sharp pains in tummy when i try to sleep on either side in bed, backache & a wired feeling most of the day until about 6pm when i suffer extreme tiredness. The tingling in my feet has returned when i stand up first thing in the morning, so has the watery eyes first thing in the morning.
    Has this happened to any other LP tryers after a short amount of time?


    I have emailed my trainer to ask if i can communicate with her via email instead of seeing her again on monday, not heard back yet. I've chickened out, and my son doesn't want to go back.

    Originally Posted by coxy

    Thankyou Koan,

    Don't worry he doesn't feel he's failed & his holiday wasn't spoilt. Before we went he was aware that he may need to use a wheel chair to help with all the walking, the process hasn't made him worse, just not any better. I haven't mentioned the LP to him at all, certainly haven't been going on at him or any such like. The trainer actually said not to mention it and to refrain from asking him if her was doing the process or not.
    It's difficult now not to get involved in an argument with the trainer if i see her, but they must also be aware that it hasn't worked for us. I'm sure lots of people would just say they were doing well at this point to their trainer, just to avoid confrontation, then the trainer goes away and adds another success story to their figures , which is clearly not the case.
  13. Bob

    Bob

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    Thanks flex... I hadn't read that before...

    I'm not sure how to respond... it all seems so distressing for those involved...

    It reinforces all of my opinions about LP...

    And this is a perfect example of why LP shouldn't be tested on children... it seems to be exactly as we all predicted a trial on children would turn out... uncannily, exactly the same... And if a child doesn't have parents who fully understand ME, then they would be in even more danger.

    (now i really must go to bed!)
  14. Orla

    Orla Senior Member

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    Answering something from a few pages ago :eek:

    Bob and Mithriel and all, just to explain my comments. I would not have written my post the way that I had, only I thought Coxy had given Bob, and potentially others, the impression that people had been having a go at her for saying LP had worked for her. I did not see any evidence of this on the thread where she was talking about doing LP, and thought this misperception (as I see it) should be challenged. I felt Coxy's post was very negative towards members of this forum (and this was not the first time I felt she had been negative in this way, I let it go the last few times I saw it).

    I do not feel that I was making personal comments about anyone in my post, but sometimes it is impossible to engage in meaningful debate without referring to people's specific points, or just explaining what post or point is being replied to. If people post openly here people are allowed to disagree.

    I deliberately had avoided any detailed critique of Coxy's reply, but I can see that was a mistake, as my comments may have looked like throwaway remarks. I do admit that as I was making some specific comments about what she had said, as well as some very general ones, so it might have been confusing.

    I have already explained the suspending criticial judgement comment, and why I think it is of general importance in the debate, so I will focus on the rest.

    Coxy may have given the impression that people had made abusive comments to her (strictly speaking if you read her post carefully she does not say this, but the post might give a reader that impression).

    She did say:

    I did not see anyone make personall abusive, or even particularly negative, comments to Coxy on the thread she started, http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week

    I thought people were bending over backwards to be sympathetic and friendly, including those who thought LP was nonsense. But people did make some humorous comments about Phil Parker and LP. But it was all done in the spirit of good humour and not directed at Coxy. She may have found this upsetting, but they could not be considered abusive.

    Coxy also wrote:

    I did not see any abuse here, maybe she is talking about elsewhere? But if so, she should have made this clear.

    As it happens, in her last entry on this thread she had actually given the impression that she was worse and not better after LP. So there was no question of criticising her for saying it worked, as the situation had not arisen, in terms of what she had posted (unless she posted something else on some other thread I did not see).

    This is a link to the last post by her

    OK back to this thread:

    Some of us have learned quite a but about it since it hit the scene. Please do not assume we know nothing about it just because we have not done it. As I said before, we do not have to stick our hands in the fire to know that it is a bad idea. Some of us feel a sense of responsibility to warn others of the potential dangers of it. It also affects us all if the world at large think a 3 day "changing your thoughts" course can cure one of ME/CFS, as Ellen from Norway has pointed out.

    http://www.forums.aboutmecfs.org/sh...ightning-Process&p=76339&viewfull=1#post76339

    "Jibes" at LP, or criticisms of it, are not Jibes at anyone desperate enough to do it. I don't see the point in geting too upset at criticisms of a therapy. People criticise, or criticially analyse, all sorts of therapies, and rightly so. People don't have to read the criticisms if they don't want to.

    Orla
  15. flex

    flex *****

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    Sadly Coxys' son did not benefit from the LP course as she has specifically stated in the numerous quotes above. Also one of the issues discussed here in the thread due to the Esther Crawley study is the impact a negative experience could have on a child. Coxy finished her last remarks on the other LP thread by saying this:

    "It's difficult now not to get involved in an argument with the trainer if i see her, but they must also be aware that it hasn't worked for us. I'm sure lots of people would just say they were doing well at this point to their trainer, just to avoid confrontation, then the trainer goes away and adds another success story to their figures , which is clearly not the case."

    Then she implied on this thread that we were being over critical of the LP and its benefits when to date any improvement she is now claiming was clearly stated by her not to have come from the LP course but instead:

    "Hi, i find it all quite sad that you are all putting something down most of you haven't tried. I appreciate it's expensive but i was willing to pay at all costs to give it a go, isn't it as simple as that? None of you are going to drop dead by trying it.
    It worked for me but not my 12 yr old son as some of you who were following my story will know. I could of given up with it after 3 weeks and said it's not working for me, but luckily i had phone support to keep me going (not LP trainer support i might add), "



    So I think in the light of the Esther Crawley child study and Coxys sons documented experience we are perfectly justified in questioning this whole matter. Secondly Coxy claims to have picked up from the failure of the LP course by engaging in "telephone support" from "not LP trainer support i might add".

    Now I don't know what to make of any of this especially as many people have documented the cult like status and expectations upon participants of LP from the LPs own literature.

    The only realistic conclusion is that the LP is self serving, dangerous, manipulative, expensive nonsense trying not very hard to hide its cult like existence.

    Not that I didnt realise any of this before!!
  16. oerganix

    oerganix Senior Member

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    "Doing" ME vs. "fake it until you make it"

    I guess it depends on how you define our cause. I do not care to try to convince anyone who has done the LP training that they were wrong or that they don't have ME. By definition, a trainee has agreed to not be an analytical thinker regarding their symptoms. That they did it and that they claim recovery tells me that no amount of logic will make any difference to them, so why bother them with it, or waste my time. That they are claiming recovery only indicates that they are still doing the LP, possibly to avoid doing ME/CFS.

    I also would not equate a subjective increase in quality of life or happiness to claims of recovery from ME/CFS.

    I cannot equate my disbelief in any recovery due to LP training with someone not believing in the existance of ME. ME has had a medical and legal description, verified by scientists, and published by the WHO, for decades. Anyone who denies this is denying proven facts. This cannot be said of the LP training. I can see where it might help someone who is depressed or in the habit of thinking poorly of themselves or thinking pessimistically. As I'm sure you know, there are elements which have tried to include those persons in their definitions of ME/CFS, but we on the PR forum have not been deceived into thinking that we are merely depressed and thinking badly, nor have we been deceived into thinking these very real problems should be included in the definition of ME/CFS, Reeves and SW notwithstanding.

    I find it a little troubling that you have insisted that the "recovery" be taken at face value, but have not addressed my concern that saying they have recovered even when they have not is a PART of the LP training program. Therefore, I do not see any value in agreeing to see "the emperor's new clothes" when I don't see them. This, IMO, is enabling behavior, which is not good for them and certainly would be false of me to pretend I believe it when I don't.

    I am dead serious when I say that cooperating with the practice of "fake it until you make it", when it comes to ME/CFS, is not good for such patients. (I doubt it is good for a lot of the sick people the LP claims to cure, but that would be another thread.) It could even kill someone, and already has caused permanent or long term damage to some. This is the same thing as the exercise advocates telling people to "push through" their exhaustion and pain. If you have been following the threads on that subject, you will already know that that advice is contraindicated in this disease. So I do not only see LP as a ripoff and a fraud, I also see it as dangerous to some. This snake oil has some venom in it, for some.

    You ask if we have a right to disbelieve people who have "experienced" a recovery. Not only do we have a right when the "treatment" calls itself a "training" in order to avoid scrutiny as a bona fide treatment, we have, IMO, a duty to disbelieve such a recovery. It is not so much disbelieving the person as it is believing in acknowledging that ME/CFS is a physical illness, not subject to erasing it by disbelieving it. LP is nothing more than a very expensive course in "changing false illness beliefs" and it should be outed as such. I wouldn't cooperate with anyone claiming that CBT rid them of mitochondrial damage, HPA axis imbalance, PEM, brain damage, MCS, EBV, etc., so why would I accomodate the same garbage from LP?
  17. Angela Kennedy

    Angela Kennedy *****

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    Just wanted to support two of your points in particular oerganix: the danger to ME/CFS sufferers of LP (I note Coxy say words to the effect of "no-one dropped dead of the LP" in one of her posts?); and your last paragraph. We are, rightfully, sceptical of claims of miraculous recovery by CBT/GET, because of the biomedical knowledge already available (especially where some people have been relatively lucky in getting the investigations done that throw up these abnormalities. Not many in the NHS do unfortunately) as well as the ideological base of the CBT/GET model being flawed in its reasoning etc.

    You are right - we do not attempt to persuade those people (who claim cure) of the veracity of our objections to CBT/GET models (and psychogenic explanations). Nor should we. Unfortunately, we are also facing a credulous public/medical profession/state, and these are the people easily persuaded by zealous quasi-religious promotions in personal testimonials (both regarding CBT/GET and LP). We do need to show why these might not be the "true story" of "miracles".
  18. Gerwyn

    Gerwyn Guest

    There is no need to challenge any one,s view.ME is a neuroendocrine immune disorder.If the LP process,a psychological therapy, leads to any objectively measurable changes in symptom profile from baseline the cause of these symptoms was psychological.Psychological therapies treat psychological conditions.To assess causation in a particular individual requires objective measurements of symptoms pre treatment and then afterwards in a longitudinal assessment over two or three years.Individual testimony means nothing.When I hear"evidence" reduced to the level of individual anecdote I,m reminded of product advertisement like 7 out of 10 women felt a noticeable difference in this shampoo.From my perspective it appears that people with a biomedical disorder are been bullied and brainwashed into saying they are feeling better.The demand characteristics are stratospheric and no objective measurements of improvement of any kind are provided or the diagnostic criteria used for that matter!
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Coxy wrote:


    Could I ask Coxy, please, when applying for LP "training" was your son expected to sign up to the beliefs and commitments as set out in the LP application form or were you asked to sign up on his behalf?

    I don't know how old your son is, but do you think he understood what he was being asked to sign up to?

    How did your "trainer/coach" (who is presumably not medically qualified):

    Assess your son for his "readiness" to undertake the program.

    Assess his medical condition to determine whether his illness might mean that he was not going to be "suitable" to undertake the program.

    Was this done purely on the basis of the application form, or was this discussed with you and your son by the "trainer"?


    Were you given any data or information sheets about children with "CFS/ME" and the suitability of children with "CFS/ME" for undergoing LP?

    Did you discuss LP with your son's GP before signing up and have you discussed the outcome with your GP, since?

    I don't ask these questions confrontationally, but I am genuinely interested to learn how LP "trainers" are assessing children with "CFS/ME" for their "suitability" for LP.

    Suzy
  20. Adam

    Adam *****

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    I spent 3 weeks in Oldchurch Prison, sorry, I meant to say Hospital in 2000 or was it 2001? I 've tried to eradicate it from my memory. I naively thought they were going to treat me. Never been near anything remotely similar since. We go round and round in circles with all these discussions when the question (for me personally) is very simple:

    Am I post-viral or do I have an ongoing viral infection?

    IMO it is as simple as that.

    If you believe you are post-viral then I assume CBT/GET LP Amygdala whatever, even a secondhand book for 2.76 off Amazon about positive thinking will get you back on track.

    If on the other hand you believe (your personal experience of symptoms should IMO make this abundantly clear to yourself) you have an ongoing infection (XMRV/some other as yet undiscovered retrovirus) then the above brain training methods wil not work.

    Maybe I am over simplifying this?

    If you disagree, please explain where I have gone wrong?

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