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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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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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    Orla, I respectfully suggest that we stick to arguing the issues, rationally, fairly, clearly and intelligently, no matter what other people might be doing.
    It is just my personal opinion that this is the right thing to do.
  2. Orla

    Orla Senior Member

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    I thought that was what I was doing Bob :Retro smile: That might not have come out the way I said it. I was not making a personal comment, but a general one. This problem of suspending ones critical judgement is a fact relevant to the debate. LP requires people to suspend critical judgement. If people want to do that to do LP then it is their choice and they have a right to do it (I am not approving of this choice, just saying they have a right to do this if they want to). But they should also recognise our right not to do this.

    But I think it is the duty of those of us who are either involved in groups, or concerned about the general welfare, not to suspend critical judgement.

    In general I think if someone is thinking of trying a treatment it makes sense to hear about positive and negative experiences in order to make an informed choice. But some people only want to hear positive experiences, and even sometimes get annoyed by hearing negative ones, and almost treat them like they are invalid. I think it is because people are desperate. While this is understandable I think it is a bad idea myself to ignore warnings. But it would be worse if groups were to adopt this blinkered approach.

    Orla
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Open letter to Esther Rantzen, J Greensmith

    Section highlighted in blue refers to LP


    From Dr John H Greensmith, ME Free For All.org

    Open letter to Esther Rantzen, when Independent candidate for Luton South, on behalf of the M.E. Community (4 May 2010)


    CC: all my M.E. contacts; Phil Parker; Dr Esther Crawley, with permission for all to forward and re-publish wherever they choose.

    Dear Esther,

    If you are elected as MP for Luton South on Thursday 6 May 2010, I hope
    that your constituents will think that you serve them well, properly
    represent them and communicate with them, more democratically than in
    another, much wider, constituency that you already represent, albeit in
    an unelected capacity: the M.E. Community.

    For background information, I am a Research Psychologist, PhD, who has
    been unable to work, or live any normal kind of lifestyle, since being
    diagnosed with M.E. (and I mean Myalgic Encephalomyelitis, not any other
    kind of variant, CFS, PVFS, CFIDS etc. and I have had all other known
    illnesses of both physiological and psychiatric origin ruled out) in
    1988 - 22 years, at the time of writing.

    I have been frustrated, on several occasions, at not being able to
    respond to comments you have made, in one medium or another, that are at
    least controversial; in some cases inadvisable or even potentially
    harmful. I will restrict the examples to just a few, in this letter, to
    illustrate the broader principle: that I believe your celebrity to be
    unfair and unhelpful to people with M.E. unless supported by scientific
    evidence.

    On the day after Kay Gilderdale's trial, 26 January 2010, you appeared
    on several television programmes including ITV, BBC and the Jeremy Vine
    radio show, BBC Radio 2, on which you optimistically asserted that 80%
    of M.E. sufferers will make a recovery. At the same time, on Scottish
    Television, Dr Debbie Wake, told viewers that "very few ever recover,
    very few return to work." Now, with such polarised views, both cannot
    possibly be right. So whose version can we believe? Well, to all of the
    people who have suffered from M.E. for decades and those who care from
    them, it feels like Dr Wake is nearer the true mark. The truth is that
    nobody really knows. And why? Because the only official figures we have,
    from the Department of Health, are an estimate, based upon a similar
    estimate made by the Centers for Disease Control (CDC) in America; in
    other words, a guess based upon another guess. But you must have got
    this figure from somewhere, so will you please give us the reference to
    the source you are citing, so that we can check its reliability, or will
    you say that it has no more validity than an opinion, or withdraw it.
    Doing nothing in response to my request would not be a fair option.

    I am pleased to have the opportunity of writing to you today, in your
    capacity as an Independent political candidate for the seat of Luton
    South, to ask your opinion of the intentions expressed in this letter
    (full text below) from Nick Clegg to one of his constituents who has
    M.E., in which he questions the NICE (National Institute for Health and
    Clinical Excellence) Guidelines of 2007 and calls for an independent
    scientific committee to monitor biomedical research:

    Dear Mr xxxxxx

    Thank you for your correspondence regarding some of the problems that
    are currently causing concerns for people with ME/CFS including
    inadequate research and the recent NICE guidelines on the subject.

    Unfortunately, a ballot to secure an adjournment debate on these issues,
    scheduled for the week commencing November 19, was unsuccessful.

    As I'm sure you are aware, one of the main obstacles to the adequate
    treatment of ME is the lack of knowledge and consensus about the
    disease. There are many theories as to the causes of the disease but no
    conclusive proof to fully support any of them. This is why it is vital
    that more research is done into the causes and progression of this
    difficult to diagnose condition.

    What is not in doubt is the very real physical and psychological damage
    caused by this disease. The Liberal Democrats have long argued that
    funding and research must be focused on the `bio-medical' factors
    involved and not just simply managing the `psychological' issues.

    Whilst I welcome the fact that NICE conducted an investigation into
    ME/CFS, I do understand and empathise with the concerns raised about the
    findings. The recommendation that patients with ME/CFS be treated using
    an `Activity Management Programme' made up of Cognitive Behavioural
    Therapy and Graded Exercise Therapy does not follow the World Health
    Organisation guidelines which categorise ME as a neurological condition.
    In failing to recognise the bio-medical problems of ME sufferers, the
    NICE guidelines also fail to recognise the needs of ME sufferers.

    To help address the unique challenges posed by a complex and poorly
    defined condition like ME, the Liberal Democrats believe in the
    establishment of an independent scientific committee to oversee all
    aspects of ME research. We would also like to see the government and the
    Medical Research Council work with ME sufferers and biomedical
    researchers in order to achieve a proper understanding of the condition,
    challenge unjust perceptions and consider the issue of research funding.

    Whilst we welcome the establishing of local centres to focus on ME, we
    feel the NHS is still too centralised and too unresponsive to the needs
    of patients and families. We believe the special needs of those
    suffering conditions like ME can be better addressed by empowering
    patients and making the NHS more accountable at local level.

    Thank you again for taking the time to contact me about this issue.

    Yours sincerely
    Nick Clegg MP


    May I ask, What would your policy, as an Independent MP, be? How would
    you lobby your own MP to represent you?

    I have wanted to reply to some controversial points that you - and
    sometimes, your daughter Emily (Wilcox) - have made in articles,
    especially in the Daily Mail, for example about Emily's recovery after
    treatment by Professor Findlay and to check whether you are advocating
    Cognitive Behaviour Therapy (CBT) and Graded Exercise therapy (GET),
    both recommended by the NICE guidelines, despite all evidence showing
    that CBT is ineffective and GET makes a majority of M.E. sufferers
    worse, some irrecoverably so? For someone with such a high celebrity
    profile, you are very difficult to reach by e-mail, except perhaps via a
    showbiz agent, which is not appropriate for this purpose. You defeat
    every search option I know.

    My most serious complaint about lack of a fair right of reply is with
    respect to the Lightning Process, which you have endorsed on their
    website for some time and do now in other print and broadcasting media,
    including the post Kay Gilderdale trial interview. I have tried to get
    an e-mail address for you from the Daily Mail, Sue Peart, Editor of the
    Mail on Sunday and from several journalists, who wrote pieces with you
    and Emily, before finally asking Phil Parker, inventor of the Lightning
    Process, to forward my e-mails to you and Austin Healey. I am especially
    annoyed that you have not replied to any of the three e-mails that I
    sent to Phil Parker, including two about the proposed research with
    children, under the direction of Dr Esther Crawley and an earlier one,
    around March 2009, following an article "Jane's Flash Recovery" (in You
    magazine of the Mail on Sunday, 22 February 2009). I should say that
    none of the others replied either but all still continue to advocate it
    and/or make careers from it.


    I do not think this is in the spirit of democracy and fair right of
    reply for which, I presume, you are standing in Luton South and I hope
    that you will not ignore this and respond to my personal appeal for a
    reply now and every time your opinions are questioned by scientific
    evidence.

    I imagine that you are very busy with the hustle and bustle of
    electioneering right now, so I shall be content to wait a reasonable
    time for you to attend to a comprehensive answer.

    Yours sincerely
    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All.org
  4. Mithriel

    Mithriel Senior Member

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    Orla said

    and Bob answered

    I think this is an important point to clarify. I can't see why Orla's point isn't a valid part of the discussion. We skirt round the things we truly believe because we don't want to offend anyone or upset anyone, but this means we have to leave out important aspects.

    I don't mean personal insults like "How could you be so stupid as to think the Earth is flat?" but must we skirt round the fact the earth really is round because someone else thinks it isn't?

    My experience of ME, all the research papers I have read over the past thirty years about damaged mitochondria, low blood volume and brain damage makes me firmly believe that ME/CFS involves physical damage to the body. Nothing I have read about the LP indicates how it could rectify these things any more than it could reset a broken bone.

    I am glad that people have got better using the technique, good health is something I wish for everyone, but I do not see how these physical abnormalities can be cured especially in a few days or weeks. The fact that Crawley can even suggest it might help children with CFS makes me think that she has a very strange and ignorant view of ME or the children she deals with do not actually have it.
    Either is possible in the strange world of ME/CFS in the UK these days.

    Years ago Ramsay said that the only use for exercise in ME was to sort out who had it from who did not. I think the same could be said for LP. This is not an attack on anyone who feels it has helped but we do no one any favours by skirting round it.

    Even if we all have XMRV and take antiretrovirals I do not expect it to work as quickly as LP claims.

    Mithriel
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Bob, I've already thanked you for your summary of concerns when you posted an earlier version of this post on the other thread - but again, thanks for this.

    Suzy
  6. Bob

    Bob

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    Thanks Suzy... glad you like the summary... :Retro smile:
  7. Bob

    Bob

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    Mithriel, I completely agree with everything you said in your message...

    With reference to the above quote... I omitted Orla's personal references in my quote... and I was partly referring to those... so please don't read my message in isolation...
    But also, as I said in my previous message... I think that the best way to win our argument isn't to accuse other people of suspending their critical judgement, nor to complain that people are complaining about us when we criticise them...
    Personally... and this is a personal opinion... I think that we would do better to be clear about the issues, just as you were in your own message Mithriel.
    As you know, I am one of the biggest critics of LP.
    Bob
  8. Mithriel

    Mithriel Senior Member

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    Thanks for explaining Bob, I see what you meant.

    Your posts about LP have been very good,

    Mithriel
  9. fred

    fred The game is afoot

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    La Rantzen is a trustee of the UK National Society for the Prevention of Cruelty to Children (NSPCC). I wonder what would happen if the LP trial on children was reported to this society. Anything? Nothing?
  10. Bob

    Bob

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    Can we develop our arguments so they make clear sense to everybody else?

    We have made many intelligent criticisms of the Lightning Process that make perfect sense to us... but do these criticisms make perfect sense to everyone else? Apparently not.

    If someone, like Cort, has a friend who has made a 'recovery' due to LP, then we won't change his opinion about LP, unless we clearly explain what our issues our and why our worries about LP don't just relate just to ourselves, but why they relate to our whole community...

    If I had experienced a 'recovery' due to the LP, and then someone told me that LP was useless, and that I probably didn't have ME in the first place, then i would get quite upset about it, and i would think that the person was being unreasonable... we need to be very clear about what we are talking about... we can't just tell someone they are wrong when they have experienced a personal recovery... and we can't just say, as our argument, that ME is not a psychological illness... we need to clearly explain all our worries and why we have those worries.

    If LP works for an individual then there's no point us getting personal about it.

    Arguing that ME is not a psychological illness, or that an individual wasn't really ill, are not helpful arguments to someone who was previously really ill, but who is now experiencing a subjective recovery thanks to the Lightning Process.

    Please be clear that I'm not saying that we haven't made intelligent arguments... we have made exceptionally intelligent criticisms... but what I'm saying is that we need to develop them so that they make perfect sense to someone who says they have recovered from CFS/ME thanks to the Lightning Process.


    Update: I've added a couple of words to my original message, to be more clear about what I mean.
  11. Bob

    Bob

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    Thanks Mithriel :Retro smile:
  12. Mithriel

    Mithriel Senior Member

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    Bob said

    But it works both ways Bob. The people claiming that LP can help people recover from ME must clarify exactly what they mean by ME. If they are claiming that it will cure mitochondrial abnormalities or reverse neurological deficits they should explain how it can do that.

    Until they can give a reasonable hypothesis, I don't demand a proven process just something beyond blind faith, we are justified in wondering exactly what sort of illness people had.

    And ME is not a psychological illness and I will argue that with anyone. People with psychological illness are misdiagnosed as ME especially when all that is required is CF but there is no more of a psychological component in ME than in RA or MS.

    I have also never read anything that convinced me somatisation is a possible cause of any physical disease.

    However, I can believe people have ME and are in remission but psychological factors are keeping them at a low activity level and I can believe people with ME can be persuaded to ignore their symptoms for a while and force themselves to do more than their bodies can cope with thus damaging themselves even more.

    Mithriel
  13. Orla

    Orla Senior Member

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    Hi Bob, Personally I am not trying to convince anyone that thinks they have been cured by LP. To me LP is a like a cult and while people are under its spell they will not be convinced of any argument against it. I am just interested in getting information out there to other sufferers and interested people about what it actually involves and know about the potential problems, and I would support anyone trying to stop that Crawley study. I feel this is probably the best we can do.

    Orla
  14. Bob

    Bob

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    Yes, you make totally valid points Mithriel... all of which I agree with...

    On the one hand we are dealing with the PR machine of the Lightning Process, which I believe is our biggest issue... But on the other hand we are dealing with people's personal stories...

    I think that my point is that if people say they have been made better by LP, then we have to accept that they were ill, and that they did have a form of CFS/ME (even if it's not one we recognise)... After all, they did have a diagnosis of CFS or ME... and I think that we have to accept that they have experienced some sort of improvement in their symptoms, even if it is only a subjective improvement.

    I believe that we have to find a way to accept that person's reality, whilst still dealing with all our valid concerns about the Lightning Process and the way it is promoted.

    I believe that the valid points you raise, about LP not being able to cure a physical illness, should not be directed at individuals, but we should be having a wider discussion about ME and about diagnostic criteria, and subsets...

    Of course I agree with you about the psychological aspect of ME (i.e. it isn't psychological), but I think we need to move beyond that argument against LP, because the people who are experiencing recovery have not been diagnosed with depression, so maybe our arguments need to be even more sophisticated or more subtle...

    I'm just trying to get us all to develop our arguments so that they make sense to people who have benefited from LP... I'm not proposing that we stop criticising LP, just that we discuss our criticisms and develop our arguments.

    It's late in the evening now, and this is so complex that my head has seized up and my eyes are crossed, so I'm probably talking total twaddle by now!
  15. Bob

    Bob

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    Orla, I totally understand where you are coming from...
    but now imagine that I had gone on a LP course, and I experienced a massive recovery...
    How do you think I would feel if you said that LP was a cult and that I had closed my mind to rational argument...
    I would say: "But it made me better, so you don't know what you are talking about, and you are being irrational."
    Do you see where I'm coming from?

    I'm just trying to get us all to see the other side of the coin, so that we can develop our arguments and criticisms, so that they make sense to everyone else.
  16. oerganix

    oerganix Senior Member

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    Since the LP requires that any of its "trainees" always deny anything negative going on in their lives until they are cured and no longer have such negative experiences, I can only conclude it requires them to lie to themselves and to lie to everyone else, in typical cult fashion. Therefore, developing "clear arguments" will fall upon deaf ears for those who are already under the influence of this cult. If "clear arguments" produced "clear sense" in the minds of those already in the cult, they would not continue to deny the reality of their bodies in order to comply with the requirements of being a member of said cult.

    So, there is no point in trying to be any clearer than we already have been, for those who are already in such denial. We can only point out the logical fallacies, the emotional manipulation and the fact that LP offers treatment and cures, while not having to submit to the scrutiny that treatment and cures should submit to, by calling itself a "training", an ingenious way of avoiding "truth in advertising". We can only hope that anyone thinking of trying this who actually has ME/CFS, the neuroimmune disease, will not be seduced into losing their money on it.

    It is nothing more than positive thinking,which is wonderful and useful, but cannot cure a virus, retrovirus, bacterial infection, etc., etc. One can buy a book on positive thinking for around $5, quite a discount from the $750-3000 price tag on a training that has been revealed to be nothing more than repeating the same thing over and over.

    To say one hasn't any right to criticize it if they haven't tried it is nonsense. First, there are many testimonies of people who have tried it and found it to be abusive and manipulative. That would be a huge red flag to me. Second, there are many things I haven't tried but I can tell, using my intellect, my education and my common sense that they wouldn't work and are only out to get my money.

    Any "training"/treatment that requires me to agree to the statement that my illness will easily be cured by this training method, and tells me that if the trainer decides my being in the trainee group is bad for me or for anyone else in the group, I can be eliminated from the group, without refund or recourse, gives me all the information I need to know that this is a scam.
  17. Orla

    Orla Senior Member

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    Suspending critical judgement

    Just to explain my comment more fully. If one reads up on LP one can see you are supposed to suspend critical judgement. This is relevant as it can influence a patients evaulation of the process, at least initially while they still think it is going to work. I think it also lends credence to the view that it is a placebo, as you have to totally believe in it for it to work. The whole application process weeds out people who are likely to be more questioning.

    People who do it talk about trying to suppress their critical judgement (from some of the accounts I have read). Coxy herself mentioned this (this is nothing personal, but I am purely using it as an example, and also backing up my earlier statement in case people thought I was making it up):

    and she didn't seem to really want to hear from people it hadn't worked for

    The "MD" (really commenting as a husband of a practitoner I feel, and hope!) also said this, almost encouraging people not to listen to "negative" stories.

    I will post on the LP application form below as that is even more interesting.

    Orla
  18. Dr. Yes

    Dr. Yes Shame on You

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    I have to disagree Bob (unless I am misunderstanding you). I don't understand why we "have to accept" that those who have been made better by LP have a form of CFS/ME, any more than one would simply accept the story that a paralyzed person was able to walk after a faith healing. Both are anecdotal claims, and both can and should be subject to objective and indeed scientific scrutiny, as should any other claim of improvement from a proposed treatment. Why should we "accept that reality" if we do not know it is, in fact, reality? The mere fact that they were diagnosed with CFS/ME does not mean much unless we know on what basis they were diagnosed, by what criteria, etc, given the incredible vagueness of that diagnostic label and its overuse by clinicians.

    Orla's point, I believe, is that our task should not be to convince those who have already undergone LP that they are wrong or never had ME, but to educate those who have not undergone it yet about the issues that everyone has raised here, including about the nature of LP itself, and about the physiological (and non-psychosomatic) nature of ME. I agree with Orla that attempting to argue with those who have seen benefit from LP is not likely to be fruitful at all; inquiring about their medical histories and means of diagnosis would be more helpful, if they are willing to share that information, but unless official documents are provided this of course would also be anecdotal.

    The main concern should be to take on the public, governmental and medical community's perceptions of LP, based on what we know of LP and ME already.
  19. Bob

    Bob

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    But oerganix, this sounds like you are having an argument with people who have been on an LP course and experienced a recovery...
    I can't see much point in doing that... if someone says they have recovered, then how can you disagree?
    I'm suggesting that our arguments should be refined so that we can win the argument, not picking an argument with those who have experienced recovery on a LP course, but by taking their experiences into account, and accepting their reality.
    And I think that we need to address our arguments towards the authorities and organisations who will not have been on a LP course, rather than individuals who have gained benefit from LP.
  20. Orla

    Orla Senior Member

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    No doubters allowed! - LP application process

    [Sorry bob and oerganix I have not read your posts yet as I was writing this off list and then posting]

    If you look at the application forms to participate in LP courses, you can see that they do not want anyone who does the course to be questioning, skeptical, or doubtful at all. So they discourage critical thinking, and weed out people who they think might engage in such thinking.

    This the lead in blurb to the application form:

    So they don't even want people to be doubtful.

    You have to agree to this comment (or they won't accept you on to the course):

    This is another interesting section:






    Analytical



    and I just "love" this bit

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