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Article: An MD on the Lightning Process
- Thread starter Phoenix Rising Team
- Start date
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
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
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
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
Chill Maartin,
Suzy
Suzy
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.
Today, it's got ugly.
Take a cold shower, meditate, smoke a spliff, whatever it takes. But please, take some time to cool down.
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
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
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
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.
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.
G
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!
G
she still wont answer questions about diagnosis and criteria?
G
[maarten,, not everyone can be wrong and you right! I actually physically know many people who have recovered, they haven't recently done the process, they did it years ago and they are still fine, what is your problem with that. There are people there as the evidence, a few of them were completely bed bound, these are not always mildly affected people. I wouldn't of gone ahead with it without evidence. I wouldn't of gambled with my 12 yr old sons health without having some very solid evidence from people i know. Yes i live in an affluent area where more people are likely to outlay the money i guess, but the facts are there on the table for me to see with my own eyes. please don't put everyone off. you clearly have some very strong views, but so do i now i've done the process. I'm opting out of this discussion now as it's winding me up!!QUOTE=Maarten Maartensz;77488]Bob,
you are just using metaphors.Who diagnosed you and what criterea did they use.I know personally several people who have been harmed by this approach.One is still bedridden.As it has potential to do great harm we are entitled to some objective information and not vauge anecdotes.
A billion Maoists, a billion Catholics and a billion Muslims, all ecstatic about their beliefs, just can't be wrong, Bob, I know...
actually they can!
G
with respect talk is cheap what we need is objective evidence of effectiveness and potential to do harm
G
LP summary Objective evidence of effectiveness none objective evidence of harm plenty
... I was astonished to find this conversation still going on actually
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
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.
Just plain wrong
Cort, the issues can be summed up quite briefly:
1. It's unethical
2. It's unethical
3. It's unethical
And yet you express astonishment that this discussion is still continuing and stick a smiley on the end of it.
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)
(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.
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.