Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 30, 2010.
I think that the hypothesis that the earth is flat actually has more evidence supporting it than LP
I thought I had posted a comment, but I can't find it, so here goes again.
I was very disturbed by this statement. I actually had to read it again to check I hadn't misunderstood.
He doesn't think it is important that some people could get worse!
At best this cavalier attitude shows an ignorance of how severe ME/CFS can be, at worst a cold disregard for the suffering of others.
A child could be left to spend years in a darkened room in agony and he doesn't think it is worth consideration.
lol, yes Mithriel, i think you posted the comment on one of actual blog pages...
it's confusing having two discussions going on side by side...
I'm not sure if I should post my comments on this thread, or on the blog page, or both.
I agree with what you say...
I can't quite believe the contents of the letter...
I was going to ignore it, but couldn't.
Hi Bob and Mithriel,
Yes, it's confusing having a blog thread and a forum thread. But I'm posting most of the comment I've left on the blog posting over in this thread, as well.
One blog, two different discussion threads, three different webpages...
I was just looking for Mithriel's lost message, and I noticed that there are two blog pages with the same article on them, but with different discussion threads...
and there are three discussion pages altogether, but with only two discussions (one of the discussions is automatically duplicated).
There is a standard forum discussion page, with this discussion thread on it (the one you are reading now), here...
And there is a separate blog page, which has this discussion thread duplicated onto it, here...
But there is another blog page which has an entirely different discussion thread here...
(and it's worth having a look at the comments on this page)
(Don't be confused by the Suzy posting the same first message in both discussion threads - the threads get different after that!)
One blog, two different discussion threads, three different webpages...
So, in other words, there is an entirely separate discussion going on about the same blog article, on this webpage:
Wooly Dollies exist?
Wooly Dollies exist.
As Flex said folks 'After the break we shifted into a parallel universe'. Which makes perfect sense to me, and my other self.
lol, Suzy that makes perfect sense!
But what if we're already reading your message from the page that you've linked to?!?
We'd start looping in on ourselves, forever trapped in an endless loop... like being stuck in a black hole!
lol, Adam, it all makes sense now!
Lightning Strikes Children
Will we stand by and watch lightning strike children?
The Lightning Process - comments
I am happy to read that Dr. Frivolds wife has recovered from her medical problems doing the Lightning Process. However, if Dr. Frivolds wife had become totally bedridden, needing constant care day and night, in constant pain and extremely sensitive to light, sound and touch as a result of doing the Lighting Process (LP), I wonder if he had made a posting on this site to inform, or perhaps worn people about what can happen to some people doing the process? Lightning Process for ME patients is a bit like Russian Roulette. It depends entirely on the diagnosis - whether the patient has ME, CFS, CF, neurasthenia or some other condition which can give similar symptoms. There are no diagnostic test for ME/CFS. It is a well known fact that CFS or ME/CFS has become a collective term for anybody with symptoms of fatigue - and in particular in Norway where the "Wessely school" of doctors are very strong and are in favour of the bio-psychosocial model, the NICE Guideline and are against any thorough investigations for underlying infections, immune dysfunctions and other possible causes. Sadly the media in Norway has given the Lightning Process an awful lot of free advertising, and refused to tell the stories of the many who have suffered the opposite effect of what is claimed because "this would ruin the miracle cure". Many of these patients are now too ill the tell their stories.
The marketing of LP has indeed been very successful - so successful that most people believe that it takes only three day to get rid of ME if the patient wants to and is motivated enough. Health personnel, without any knowledge about ME, or the patients medical history or situation, recommend LP without any reservations and persuade them to take up loans and try LP. If the patients have reservations, they are looked upon as giving signals that they have themselves to thank for not getting well. Some benefits offices in Norway offer to pay for the LP course, although it is against their own rules and regulations to pay for undocumented treatments. And at the same time, patients are denied their rightful help and benefits. Through Phil Parker and "Aktiv Prosess" in Norway, where the practitioners have no medical qualifications, the patients are not covered by medical laws and ethics because they are marketing LP as training and not as treatment. The patients must take the responsibility for the training themselves. In other words, it is possible for people, without any medical education or background, to ask very ill people to ignore the signals from their bodies. The LP practitioners are not taking any responsibility for what might happen to them.
As yet, there are no studies done to substantiate Phil Parker and Aktiv Prosess results, nor any follow-up studies to show how the LP participants are doing after 12 or 18 months. Many participants are struggling. To friends and family they have announced that they have recovered and must not be looked upon as ill. If their symptoms get worse as they are increasing their activities, they get into an explanation-problem situation. Their symptoms are no longer looked upon as an expression of disease, but as a result of that they are not able to stop "doing ME" and are not motivated or good enough to do the training. This can feed self-contempt. Previously psychologically stable people have become deeply depressed. They continue to push themselves physically and mentally even when their symptoms increase. Some have become extremely ill. They seem to have lost the ability to listen to their own bodies, and drive themselves into deterioration. These patients will need a different type of coping strategies and "off-learning".
The Lightning Process should be of great concern to all - especially seen in the light of biomedical research on ME which have uncovered many biological markers.
It's the MAGICAL part I like the best!
And I wish he COULD step into my body during PEM when my legs and feet feel like they're made of lead and glued to the floor.
And while he's in my body, I wish I could have his ATM card for just a few minutes, right after one of his "training"s starts and he's collected several thousand dollars for his magic!
I really wanted to stay away from the LP stuff but this article really went too far.
If this man is speaking as an "MD" and recommending the Lightning Process on a public forum for ME/CFS patients who may be "bed-ridden" or "wheelchair-bound", then even ignorance does not excuse such statements. Desperate or uninformed patients could be seriously injured by following this person's advice, especially if they have inordinate faith in medical degrees.
Just what is the implication there?
"Dr." Frivold's statements here are both utterly disgusting and deeply disturbing.
Cort, the last time you posted about this, you said you had been unaware of the UK study proposal and expressed shock and concern that anyone would consider running an LP trial on children. But now you have allowed space on this forum for the view that IT IS OKAY TO DO BEHAVIORAL EXPERIMENTS ON CHILDREN with totally untested, poorly documented techniques... Uncritically at that, and even attempting to give it the 'imprimatur' of an "MD".
How do you find any of this acceptable?
Thank you for this report, Ellen, of the situation in Norway.
Suzy, I'm sure you didn't mean to suggest that Cort has a vested interest in LP or is even paid to promote it while pretending to be a neutral journalist. It's just that 'shill' is the Yiddish-American term for the good old British 'plant', i.e. an accomplice planted in the crowd round the stall who eggs people on to spend.
I think it's highly unlikely that any money changes hands. Mr Parker is known to favour viral marketing of the sort his PR consultant used to infect your blog, and he is adept at getting free advertising space.
The alternative explanation is that these people crash so badly that they are no longer able to turn on a PC.
It is hard to understand that you Cort publish something so controversial into this forum own by you. In my opinion you risk that people leave for a forum that is free of such insults to science. This article just doesn't look good.
FOI and Bristol Pilot study: Lightning Process and children 8 to 18
A version of this post was published on Co-Cure on 3 May and will also be available on ME agenda site.
Bristol Pilot study: Lightning Process and children 8 to 18 and Freedom of Information request:
"The first thing was to take responsibility for our illness. I had to stop saying I had M.E. Instead I have to say I am 'doing M.E', I wasn't tired, I was 'doing tired and doing muscle aches'. The implication being if I am doing it I can stop doing it." 
On 3 March, the University of Bristol issued a press release announcing a pilot study on Lightning Process and children . The study is due to start in September 2010.
The study is expected to recruit 90 children with "CFS/ME" between the ages of 8 and 18. The primary outcome measure will be school attendance after six months.
Funding of 164,000 has been awarded by the Linbury Trust and the Ashden Trust and the research team is led by Dr Esther Crawley.
Dr Crawley, FRCPCH, PhD, is Consultant Senior Lecturer in the University of Bristol's Centre for Child and Adolescent Health and a Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust (RNHRD NHS FT).
Dr Crawley chairs the CFS/ME Clinical Research Network Collaborative (CCRNC) and is Medical Adviser to the children and young person's patient organisation, AYME.
The research team will carry out a pilot project "to investigate whether it is possible to look at two different approaches to the intervention and treatment of Chronic Fatigue Syndrome/ME (CFS/ME) in Children."
This pilot project and any study resulting out of it should not receive research ethics approval.
The MRC produces specific guidelines for research involving vulnerable patient groups. The document "MRC Medical Research Involving Children"  is clear:
"4.1 Does the research need to be carried out with children? Research involving children should only be carried out if it cannot feasibly be carried out on adults."
No rigorous controlled studies have been carried out on Lightning Process in adults. To date, not a single study into the application of LP has been published.
At the July 2009 meeting of the Countess of Mar's "Forward-ME" group, the Lightning Process had been tabled on the Agenda :
"5. Lightning Process:
"Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns."
The outcome of this Forward-ME group initiative has not been reported on.
Action for M.E. Chief Executive, Sir Peter Spencer, is a non executive director of the RNHRD. Asked for a position statement, Action for M.E. has said:
"Action for M.E. sees no reason to oppose this pilot study. As was made clear when it was announced, the research at this stage is simply a pilot designed to see if it would be possible to set up a trial that can independently assess the Lightning process against specialised medical care. It is a fact that many parents are already taking their children to LP practitioners and so there are urgent questions that need to be addressed in order to assure the safety of those children. Dr Crawley's initiative aspires to find a way of answering some of those questions." 
But in 2008, Action for M.E. and the children's organisation AYME published results of a joint patient survey . Of the people who reported their experience of the Lightning Process, 53% stated they had improved, 31% reported no difference and 16% reported an adverse outcome.
Figures from an ME Association survey in 2009 reported 45% improvement but 21% said they had been made "worse" or "much worse".
In 2007, Action for M.E. had published this article in the March edition of its magazine, InterAction :
"LP: the light at the end of the tunnel or just another flash in the pan?"
http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf
"The Lightning Process (LP) has attracted national press coverage but alongside the hype and talk of miraculous recovery, InterAction received reports of relapse and failure, and decided to find out more."
To date, the ME Association and The Young ME Sufferers Trust have remained silent on their position on LP and this planned pilot study.
What is the Lightning Process claimed to be effective for?
The website  says:
"Over the years we've discovered that it's such a powerful process that it seems to be very effective in areas where people feel stuck. Due to the nature of the training we can't guarantee results as every individual is different, however we have had considerable success in helping people with chronic health issues.
"This includes, but is not limited to
Anxiety & Panic attacks
Chronic back and neck pain and headaches
Fear of failure
IBS and Digestive problems
Low self esteem, self-doubt, guilt and even self-hatred
M.E. (Myalgic Encephalopathy)/Chronic Fatigue Syndrome
M.S (Multiple Sclerosis)
Obsessive compulsive disorder
Stage fright and presentation fears
Stress & Struggle
"And it's also effective for enhancing
Discovering what you really want
Some prospective "trainees" report that they had been led to understand the "training" should work for everyone if they are "ready" to undertake the process and if they "carry out the instructions properly".
When applying for "training" sessions, prospective "trainees" are asked to sign up to a set of beliefs and undertakings that are shockingly manipulative . Read a sample application form, here:
No child should be exposed to this.
What data has been used in order to establish that overall the likely benefits of this research outweigh any risks to children with "CFS/ME"?
How will it be determined that undergoing the "process" will not be detrimental to the child's psychological well-being or impact negatively on the family dynamic if the child fails to gain benefit from the program, or if the child were to experience set-back or significant relapse during or following the program, or if an apparent improvement or resolution of their symptoms and disability were short-lived?
What are the ethical issues of applying psychology and NLP techniques to children and young people with CFS/ME (and it is proposed to include children as young as eight) which invalidates their experience of the illness and motivates them to ignore their symptoms and their post exertional malaise because they are "doing M.E."
Accounts by those with misgivings about LP and its failure to "cure" them, how the "process" is applied during "Seminars" and "Training" sessions and concerns about how some "Trainers/Coaches" have reacted to complaints from clients are beginning to seep into the public domain .
Despite considerable controversy surrounding this unregulated "Training Program"; despite no rigorous controlled studies having been carried out with adults and with no data on its safety and efficacy, this study plans to recruit children with "CFS/ME" as young as eight.
It is unconscionable that this pilot study should go ahead; unconscionable that apart from Invest in ME, no UK national ME organisation has publicly opposed this study.
On 16 April, I submitted a request for information under FOIA in relation to this Dr Crawley led pilot study. A full copy can be accessed here: http://tinyurl.com/FOIrequestLP1
 LP Doesn't Work for ME: Personal accounts from LP "trainees"
Contributions to: firstname.lastname@example.org
Letter: Lightning process for ME didn't work for me
 Press Release: University of Bristol, 3 March 2007
 MRC Medical Research Involving Children (Nov 2004, revised Aug 2007)
 Minutes: Forward-ME meeting, House of Lords, 8 July 2009
http://www.forward-me.org.uk/8th July 2009.htm
 Position statement: Action for M.E., April 2010
 Patient Survey 2008, Action for M.E. and AYME
http://www.afme.org.uk/res/img/resources/Survey Summary Report 2008.pdf
 Article: InterAction 59, March 2007
http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf
 Lightning Process website
 Sample Lightning Process application form
Imagine that a country in Africa announced its intention to test a training programme on HIV positive children with the aim of helping them to 'stop doing AIDS' and that this would be measured over a six month period according to school attendance.
There would be a tidal wave of righteous indignation from 'developed' countries. The media would call it a scandal; politicians would declare it a violation of the human rights of children; diplomats would be wheeled out to 'negotiate' its closure; the Red Cross and international children's charities would start web campaigns; and perhaps even Bob Geldof might get a look in.
But set this 'research' in the leafy suburbs of 'cultured' Bristol and no-one bats an eyelid.
Well said fred... I just can't believe that this nonsense is going ahead.
Very well said Fred.
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