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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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    Maarten, I don't want to stifle any discussion (but you have still failed to raise any specific issues of discussion with me anyway), but if you persist in accusing me of being a troll, without backing up your statements with evidence, then I will have to resort to reporting you...
    The reason I would take this action is that if people, who don't know me, are reading this thread then they might take you at face value, and assume that I am a trouble maker or 'troll'... which I am not...
    You are clearly going against the forum rules, and you are being disrespectful.
    I have been very patient with you so far, but I will not continue to tolerate the personal attacks.
    Bob
     
  2. flex

    flex *****

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    There is only one issue here and that is that Coxy has categorically stated that she "recovered from "ME/CFS" by turning of her stress responses and that is what the LP is all about".

    Therefore one can only conclude that she was suffering form a stress related psychological condition not ME neuro immune disease. I sincerely hope that is the case otherwise Coxy you run the risk of driving yourself into a serious potentially further damaging relapse. As far as varying levels of "ME/CFS" go that is just a nonsense and it is of course common sense that all sufferers of ME or MS or cancer etc do not experience it in exactly the same way.

    The fact is here that varying non related conditions have been tagged on to the term ME and will of course respond differently to quackery based "treatments" and "therapies".

    http://www.youtube.com/watch?v=uVvcD4Czx4Y

    Actually there is a second issue also:

    BOB IS NOT A TROLL!!!!!

    Relevant declared qualifications: None
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Chill Maartin,

    Suzy
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Maartin, both you and Bob make valued contributions to these forums and this thread has seen much constructive debate around a very contentious subject.

    Today, it's got ugly.

    Take a cold shower, meditate, smoke a spliff, whatever it takes. But please, take some time to cool down.
     
  5. Orla

    Orla Senior Member

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    Bob is not a troll

    Some evidence. What Bob previously posted on this issue on Cort's blog after the first post on LP (and he is obvsiouly not an LP practitioner either):



     
  6. Mithriel

    Mithriel Senior Member

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    Coxy, I think you are brave detailing your experience and this criticism is not aimed at you as you are repeating what you have been told.

    This is a totally meaningless statement. What exactly do they mean by a "stress response"? If such a thing exists where is the evidence that it is "stuck on"? Where is the evidence that any of this has anything to do with any symptoms in anyone, let alone in ME or even widely defined CFS?

    We respond to stress by producing adrenalin, if they mean our bodies are producing too much adrenalin why don't they measure it? Excess adrenalin doesn't produce the symptoms of CFS.

    Low blood volume is not related to stress, neither is mitochondrial dysfunction or any of the other documented abnormalities in ME.

    It is also a fallacy to say that if an illness is caused by stress, removing stress will cure it. Damage that is done needs physical processes to heal if healing is even possible.

    I am sure there is biochemistry being done that may elucidate the stress responses one day but any resemblance to all this will be coincidental. This"explanation" for ME is much the same as the psyches rubbish. It is nonsense dolled up to sound scientific with no evidential underpinning.

    Mithriel
     
  7. Bob

    Bob

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    I agree with the following statement! :Retro smile:

     
  8. Cort

    Cort Phoenix Rising Founder

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    Believe me Cort has not 'arranged things' in any way. This is simply how the program works. This is the first time I've seen this - there are comments pages for both sections but how they've merged or haven't I haven't the slightest idea. Almost all of my blogs are posted on both sections - so whatever happens to this one happens to all of them. I kept this subject off the Front Page because I know the subject is offputting to many. I was astonished to find this conversation still going on actually :)
     
  9. Cort

    Cort Phoenix Rising Founder

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    Bob is one of the last people anyone would suspect of being a troll - he is not in the eyes of the moderators a troll - please stop the troll talk. Such comments are obviously very upsetting to the members who are being accused of that. Thanks.
     
  10. Cort

    Cort Phoenix Rising Founder

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    Please everyone treat everyone with respect! Its fine to question somebody about their particular type of illness - there are lots of different types of illness here - I wouldn't dream that I had the same thing as someone bedridden and crawling with HHV6 - but please do it respectfully.
     
  11. Cort

    Cort Phoenix Rising Founder

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    thankfully in this case, you're not. Bob has been very critical of LP, to my mind, is bending over backwards to be fair - and does not deserve to be accused of 'trolling for LP"

    The question is can we have a decent respectful conversation about this that leave's everybody mostly unbruised...I guess not!

    We all know that ME/CFS is a huge, vague disorder with many subsets.... people have gotten well or better using all sorts of therapies from Vistide to Valtrex to Pregnenolone to antibiotics to envelope therapy,and this one. I thnk there's room for all of us in here.....

    For what its worth I'm not surprised that these types of things can be helpful for some people...My sense is that my system overreacts to everything. For instance I sometimes notice that a negative thought about anything - not necessarily my body or CFS - causes my system to rear up and for me to unconciously hold my breath ,for my muscles to tighten up, etc. - its an unconcious physiological response which exacerbates my symptoms.

    I certainly can't account for the PEM I experience after exercise by this. Usually exercise, at least at first, relaxes me and I feel calmer - its the pain and dullness and fatigue that happens later that is so problematic. I can see in my case how I might make things a bit worse when that happens by being upset - which is natural since it is a frustrating and painful exercise - but I can't see how those thoughts could cause them - because I do watch for them now and I can't see a cause and effect relationship.

    On the other hand - I do derive benefit from slowing my body down and my mind down and putting my body into a more relaxed and healthful state.
     
  12. Gerwyn

    Gerwyn Guest

    i was addressing scientific issues Bob
     
  13. Gerwyn

    Gerwyn Guest

    ME is not a vauge disease Cort it is the various diagnostic ctriterea which are vauge.CCC is the only exact diagnosis.If someone makes claims about a cure and avoids answering any scientific questions then i think that people can draw their own conclusions.I can,t actually believe that you said the words huge vauge disorder with many subsets without any evidence to back those words up.There is nothing vauge about ME.There are people who are vauge about describing it-that is a big difference!
     
  14. Gerwyn

    Gerwyn Guest

    she still wont answer questions about diagnosis and criteria?
     
  15. Gerwyn

    Gerwyn Guest

     
  16. Gerwyn

    Gerwyn Guest

    with respect talk is cheap what we need is objective evidence of effectiveness and potential to do harm
     
  17. Gerwyn

    Gerwyn Guest

    LP summary Objective evidence of effectiveness none objective evidence of harm plenty
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Why astonished, Cort?

    In the UK and elsewhere many of us share enormous concerns about the proposed pilot study for children when no RCTs have been carried out on adults - this pilot is due to start in September.

    So discussion will continue at least until the pilot is halted. I should know in ten days or so, whether research ethics approval has been obtained or is pending - either way, discussion will continue, because many of us are very, very angry that Dr Crawley considers that it is OK to expose children as young as eight to this untested, unregulated program and we are not prepared to sit back and let it happen.

    Suzy
     
  19. Bob

    Bob

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    Hi Gerwyn,

    CFS/ME (as diagnosed in the UK) is a vague disease/s because they do not use the Canadian criteria in the UK, but they still name it CFS/ME.
    When people talk about 'ME', we are not always referring specifically to the Canadian criteria, but we mean CFS or CFS/ME.
    In your mind, ME is one specific disease process, but not everyone understands that point of view, especially if they are referring to CFS or CFS/ME.
    Personally, I believe that ME (Canadian criteria) is probably one single disease process, but I imagine that CFS might encompass quite a few subsets.

    I agree that it is good to discuss the diagnostic criteria etc., but I think it is helpful if we explain what we mean if we say ME is a single disease... because otherwise it just leaves people confused and none the wiser.

    I'm just saying this because I think you lose people from your argument when you say that ME is definitely a single disease, if you don't explain what you mean.

    Just my opinion, meant in the spirit of support and friendship.
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Just plain wrong

    Cort, the issues can be summed up quite briefly:

    1. It's unethical

    If there is going to be a study undertaken, it should first be carried out using adults.
    (See MRC Medical Resarch Involving Children)​

    2. It's unethical

    There is no data on which to assess likely benefit and potential risk to children with CFS/ME; with no data, parents, and children considered competent to give consent, are not in a position to give informed consent.​

    3. It's unethical

    The program invalidates the disease and the child's experience of illness by ignoring the child's symptoms and reframing them as something the child is only choosing "to do" and can therefore choose, or be trained "not to do".

    That is psychological manipulation of a vulnerable patient group and it is shocking.​

    And yet you express astonishment that this discussion is still continuing and stick a smiley on the end of it.
     

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