Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 30, 2010.
... right said fred ...
(sorry, couldn't resist saying it!)
Those young people should get some clothes on. They'll catch their death.
Posting from the webpage:
Cort, would you give consideration, please, to posting a note on both pages where your most recent Dr Frivold blog posting appears pointing out that there are two comment threads running in parallel in response to Dr Frivold's opinion piece and that one of those threads (this one) also appears as a forum thread?
Some members are posting in the blog version here:
unaware of the comments that are being posted in the second version (which displays as a forum thread) and vice versa.
This has confused me. Do you mean that there is space for comments on all front page articles and that they all have their own separate threads too? Just an opinion, but it doesn't seem very foggy-friendly :worried:
Or would it be a good idea to merge the two threads?
This seems to happen with all the blog articles, and it means that there is a disjointed discussion, as there are two separate discussions going on.
Discussion 1 (this discussion thread):
Discussion 1 is also automatically duplicated to this separate page (for extra confusion!):
Perhaps the aim is to half the dissent in any one place at any given time. Right Fred? Said Flex.
Also this could be inadvertently raising the google ranking having it at two seperate places. And of course we don't want this to happen do we!!
Especially as the Drs letter to Cort reads like an infomercial for LP. It would be very unfortunate if this issue gave the extremely controversial LP course some kind of accidental advertising coverage.
Right Bob said Flex? Right Flex said Suzy. Right Flex said Fred? Right Fred said Flex!!
...I'm too sexy for this thread..
I'm typing in my bed..
..and I'm too sexy for this thread...
i've got a brain fog head...
...Cos I've got ME...
..you know what I mean...
and I took a little turn at the bus stop...
yes at the bus stop you know what I mean
...I took a little turn at the bus stop....
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), thank goodness i kept going, as i'm now back at the gym and feel pretty much completely better, it's been amazing for me, but not easy.
I think it's a difficult thing to recommend to children, i don't think most will realize the work they have to put in to make it work. It's very disappointing to us as a family that it hasn't worked for our son, but we have been promised help when he is older.
I'm still on the list for the uk XMRV test as i still believe we could be positive.
I tried to keep giving my updates on here but gave up due to upsetting remarks back. i'm still in contact with a few of you by email who are following my progress with interest.
I certainly have no connection with the LP at all! I urge any of you to give it a go like i did. There is no way in my opinion it could make anyone worse, i just can't see how it could.
I took the opinion before i did the LP that i was fed up hearing negative comments on something that people hadn't tried themselves. Every time someone said it had worked for them they seemed to get abuse, it's ubsurd. Please refrain from commenting on something you know nothing about, you are stopping a lot of people on the forum from giving it a go and maybe getting their life back. I'm saying this knowing it worked for me but not my son (my son wasn't even doing the process, he gave up straight away).
I just get annoyed now when i hear so many jibes at it, i still don't know how it worked for me really, it just did, and yes i had been diagnosed with ME.
I'd prefer to see the threads merged. But failing that, I would like Cort to add a note to both of the two pages he has published Dr Frivold's opinion piece on.
Whatever I write in this thread is going to display here:
and then I have to decide whether I also want to make the same point here:
and I don't quite understand why Cort has elected to arrange things this way.
If you don't understand our criticisms, then maybe you haven't read through the discussion threads where we discuss the issues which we are concerned with... but I accept that the discussions on this subject are complex, so maybe we just haven't outlined, or explained, our concerns clearly enough...
I don't mind if people want to try out the Lightning Process at all, if that's something they decide to do... far from it... it's none of my business anyway... but I would like people to be in possession of the facts before they part with their money, so they can make an informed choice.
Personally, all I am worried about is people being exploited... both on an individual level, and also at a community level...
That is my only concern.
For me, and I think maybe for everyone, it is purely an issue of protecting our community from potentially exploitative commercial interests.
As you say, it didn't help your son, but they did they offer you a refund?
You might have that sort of money spare, to throw away on an unproven course, but 500 is a lot of money for me...
Also, do you not think that there is a risk of serious relapse for people if, as you say, there is so much hard work involved in the course?
I'll copy my message from the other thread, below, so that you can see some of the issues which worry me.
I'm very sorry that you've had upsetting remarks thrown at you, and I don't respect people who make it a personal issue... I try to stick to the issues and argue them rationally and respectfully... I think it's a shame that some people cross the boundary from healthy, rational argument, into personal criticism, but people feel very passionately about it, for many different reasons.
I'm glad that you've had such success with the program, and wish you all the very best for continuing good health.
I would say one other thing... If you can try to understand the issues which we are discussing, then you might not be so upset by all the negative comments which you read, as you would understand where people are coming from, and you would understand that we are coming from a place of compassion and care for each other.
I think that most people on the forum would accept that some people diagnosed with CFS have been helped by The Lightning Process... and also that some people have not been helped by it, and some people have been made worse by it...
But we have absolutely no idea what percentage of CFS patients might potentially be helped by The Lightning Process, and what percentage would be made worse by it, as there have been no independent studies carried out...
We also have no official understanding about what subset of ME/CFS patients would be helped by the process.
On this forum, our many criticisms of The Lightning Process have been made rationally and have been expressed very intelligently.
Personally, all I am worried about is people being exploited... both on an individual level, and also at a community level... That is my only concern.
Our criticisms lay within the following areas (except, obviously I don't speak for everyone):
Some patients have been made worse by The Lightning Process (there are no independently verified figures, so we don't know what percentage suffer harm from the course) (If a medication was found to cause harm, to the patients it was administered to, then it would be banned).
There is no transparency about the nature of the training course - it is a very secretive organisation - customers are not allowed to discuss the course, or their personal experience of the program, and they have to sign a contract to confirm this. (This limits the amount of independent scrutiny that The Lightning Process can be subjected to).
It is not an officially recognised medical treatment, nor has it undergone any medical trials, but it is sold to patients as a course which leads to 'recovery' from ME.
We have no independent insight into how many patients are made better, what improvement they experience in symptoms, and how long they remain improved for (in other words, we have absolutely no idea how successful the program is, other than going by what the people who are selling the program tell us).
The nature of the training course flies in the face of current scientific knowledge about ME.
Propaganda/marketing from course practitioners seems to be so easily accepted, as fact, by otherwise intelligent people who would usually have a more enquiring mind - this seems to suggest an extremely effective PR and marketing operation.
The course invalidates the disease (ME) and patients' experience of illness, by ignoring symptoms and treating ME as a psychological disease.
The 'training' ignores the symptom of 'post exertional malaise' and goes against current understanding of the illness.
The training is the exact opposite of 'pacing', which is a very popular, and widely used, symptom management technique used by many ME patients.
The main component of The Lightning Process is a purely psychological technique (NLP), which suggests that ME is a psychiatric disease.
There is anecdotal evidence that the course can be run in a manner that is ignorant about the disease and the symptoms of the patients.
There is anecdotal evidence that some patients are treated as failures when they can't complete the course, or if the course is unsuccessful for them, or if they are in too much pain to be able to comfortably carry out the tasks.
There have been no independent trials or studies of the program (so the only information that we have is from the course promoters).
The Lightning Process is based on an NLP technique, which is a form of positive thinking (How many other physical diseases are seriously treated with positive thinking, or NLP, as a route to 'recovery'?) (Note that NLP does not involve CBT, as some people mistakenly believe).
The NLP technique used in the Lightning Process is a cross between positive thinking and a belief system. The technique has appears to have similar qualities to faith healing.
ME patients are vulnerable and need to be presented with all the facts, so that they can make an informed choice. The only information that we have about the Lightning Process is individual recovery stories and Lightning Process propaganda/marketing/PR.
The Lightning Process does not offer refunds if it doesn't work. This means that if someone does not recover, or is made worse by the course, then they are about 500 (about $750) worse off. If the Lightning Process offered a refund for participants who were not satisfied, and for those who dropped out, or for those who do not see an improvement, then this would at least make them more credible. If they are so convinced about the success rate of their program, then they could easily offer a refund. It is such a controversial program, that offer a refund would at least make the organisers look like they really cared for the people who the course didn't work for.
There seems to be an aversion, on the part of the organisers, to accept that the course fails, or simply won't work, for a significant proportion of people with ME. The failure to acknowledge this clearly enough appears like dishonesty. There are individual stories of failure, and CFS/ME may well have large subsets of patients which do not respond to therapies like this.
It seems, from reading individual testimonies, that the nature of the Lightning Process is such that if a participant does not respond positively to the Lightning Process then they themselves are blamed for their failure to recover because they have not worked hard enough at the technique. Individual testimonies have explained that this has been very stressful for some participants when they have complained that they are unable to comfortably carry out the expected activities, their worries have been dismissed and they have been told to work harder, even though it is causing them distress.
The Medical Trial to be carried out on children:
There is going to be a medical trial carried out on children, before a safety study has been carried out on adults. (We have discussed the potential dangers involved for the children involved in the study, including issues surrounding: informed consent; parental pressure; parental ignorance of the details of the course; potential developmental and psychological damage; undue pressure placed on the children to get well; inappropriate pressure to return to school too early; abuse potential; potential of physical harm; potential of a severe worsening of symptoms; pressure on the patients to conform to the beliefs of the practitioners; pressure on the children to say that they feel better in order for the study to look successful; invalidation of the patients' experience of illness and symptoms; undermining the child patients' sense of self and the legitimacy of their personal experiences; the dangers of teaching a child to ignore and to override the sensations of illness and exhaustion that the patient receives from their own bodies; and other issues).
If elaboration is required for any of these points, then please ask questions, or read through the various threads on this forum which relate to the Lightning Process.
Arguing the Issues...
This isn't aimed at anyone personally, but it's to all of us who feel passionately about this subject...
This is a subject that we get very passionate about, and some of the criticisms may have crossed the line from passionate discussion and criticism of the issues, to personal criticism...
I would just like to suggest that we always remain vigilant that we keep arguing the issues, rationally, fairly and intelligently... and that we don't allow our passion to move us away from this... there is always a danger of posting comments where we stop respecting each other...
All of us, on the forum, are in the same boat... we all just want to get well... and the reason that some of us are so passionate about this subject is just because we care about each other... and we don't want to see our community exploited.
So I would suggest that if people don't understand why some of us are so negative about the Lightning Process, then we just haven't argued our case clearly enough... even if we think that we have.
There is no censorship on the discussion forum, and I am very grateful for that... everyone is allowed to express their opinions openly and freely... let's keep it that way, and not criticise people personally, even if we don't agree with each other all of the time.
At the end of the day, all we want to do is support each other because we are all caring people.
If we stick to top quality debate then hopefully we will avoid any future accusation of posting 'malignant' comments...
Again, this message isn't aimed at anyone... I'm including myself in this as well...
And I hope this isn't taken as being patronising (please let me know if it is)... I'm just trying to be constructive, and helpful.
Respect to you all,
Addition: This message is not aimed at any one specific interaction... I just think it's something we should keep in mind when discussing this subject.
Most of our discussion has been top quality, and I am always so impressed with the quality, and intelligence, of everyone on this forum, but there have been a few personal comments.
Bob, I saw no one criticising Coxy personally, but she is making generalised criticisms of us which I feel are unfounded and unfair, along with a touch of the "if you really wanted to get better you would try this" argument (I know she didn't exactly say this, but it was implied in her comment above).
I feel sometimes when people do treatments they get too emotionally involved in the thing, because they are desperate and see it as a way out of their illness, so don't want their "cure" taken away. Seeing as LP relies so much on suspending ones critical judgement and "believing" in it, I can see why someone who wanted to do it would react badly to criticisms of it, as in some ways to do LP one needs to keep ones eyes shut. Coxy explicitely said elsewhere that she was trying to distance herself from being skeptical about it (this was before she did it).
If people want to suspend critical judgement about things it is up to them, but please don't expect the rest of us to do it, and complain when we don't.
About LP more generally. I think basically it is placebo. I don't think any money should be wasted on clinical trials because of this and:
(a) LP is an expensive rip-off of NLP techniques, marketed and branded to make it more expensive and make money for Phil Parker and co. In some ways it is like when a drug goes out of patent, and a drug company makes some slight alterations to the drug, so that they can re-market a patented version of the drug again to make money. If there is going to be a trial of NLP then it should be a trial of NLP, not "LP", in order not to indluge this money making scam.
(b) do we really want money spent on a trial of LP, when there is not enough money for drug trials or basic research? The people who would benefit from a trial of LP are the practitioners, not the patients.
(c) It is part of the process to say you are better, even if you are not. It is considered "negative" to mention continuing symptoms, ongoing problems and so on. No one who does it can be relied upon to be telling the whole truth if they are saying they are better. Basically objective evidence is required (they should be living a fully normal life, doing a normal job, able to socialise and exercise, for at least a year or more before they can say they are a lot better or recovered). Some people seem to be able to run on adreneline for a bit and can crash very badly ages later, so a long view is required.
Sorry Bob, I had meant to say that your post starting on "The Issues" was very good, a great summary of the key points people are concerned about. Like you I am also worried about people being exploited.
I think maybe the MD's comment could be said to be malignant in itself, and a substitute for proper discussion. (If you don't have a real argument it is easier to accuse ones criticis of just being malignant)
Thank you Ellen for posting this, it touches on many of the issues that would concern a lot of us.
I have to say, I actually do see some large similarities between the LP and CBT/GET approaches, in terms of ideology, claims made, forms of fallacious reasoning, use of rhetorical language in 'patient testimonials', even problems as summarised by Bob above etc.
These are evident in the PACE manuals discussed in 'Magical Medicine', in the Liverpool CFS clinic literature supplied and analysed by Orla and others, some of the testimonials on certain literature, including the PACE newsletter and the Oldchurch 'Chronic Fatigue Unit' website, as only a small selection of examples.
You can also try a Google Site Search
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