An MD on the Lightning Process

View attachment 932 Dr. Frivold is the husband of Berit Frivold, who's recovery from ME/CFS using the Lightning Process, was posted a month or so ago. Dr. Frivold, is naturally very happy that his wife has recovered and, after reading the discussion on Berit's recovery, sent me these observations.

I recognize this is a difficult topic that can be disturbing. My feeling is that any treatment that helps someone deserves space because it could help others. ME/CFS is a broad and variable condition in which we regularly find people responding differently to drugs, supplements and other treatments . LP doesn't appear to be any different; some people clearly respond very well to it, others respond fairly well, others less well and so on.

For myself, I am in the middle category; I have responded 'somewhat well' to the Amygdala Retraining - which has some similarities to the LP - and other mind/body techniques. They have enhanced my quality of life when I am in my 'safety zone' of limited activity. It has not allowed me to substantially increase safety zone but I am happy for its benefits when I'm in it.


Dr. Frivold's comments

Berit (my wife) alerted me to the recent postings on your forum relating to the Lightning Process. I would just say, Im so glad I did not read these blogs prior to Berits deciding to attend the Lightning Process training in Oslo, Norway. I would certainly have been very reluctant to support her decision, and she might well have decided it was too crazy to try out.

Let me first state some disclaimers:

1. I have never had ME/CFS or Fibromyalgia
2. Like most physicians I knew little about ME/CFS and felt rather helpless when my patients presented with such symptoms.
3. After my wife took ill and was diagnosed with Chronic Fatigue Syndrome, I have spent significant time and effort reading up on the topic, but certainly do not consider myself an expert.
4. My wife is now a certified Lightning Process Practitioner and as such I may well have a bias, and my reflections may therefore not be entirely objective.

When this is said let me just make some observations.

A. The change we as a family have experienced after Berit attended the Lightning Process (LP) training in July, 2008 is rather remarkable. I am not in a position to evaluate if she has fully recovered as there are no good biological markers to monitor, but she states that she feels like she has, and generally acts that way. For our family this is an indescribable gift! One could try to estimate the financial impact . - She is no longer spending the average of ~300 dollars/month on a variety of supplements and compound medications (supplied by the CFS clinic), nor the consultation fees (not covered by our insurance), and she has terminated her constant search for new treatments. She has also been able to return to the work-force. More importantly to us as a family with young children is the fact that she is now back fully engaged in our lives. This is truly priceless.

B. I accept that not all patients who have trained with this program have achieved the same remarkable results as Berit. I know of no program or therapy that can assure 100% success.

C. From my very limited and unofficial observations the results are, however, remarkable.

D. It should, however, be noted that the people who are accepted for Lightning Process training is a select group. You have to demonstrate to the trainer that you are willing to commit to reexamine your beliefs, and accept that this is a program that requires the patient to do what sometimes can be hard work .

E. I do not know of reliable long term statistics on the Lightning Process trainees, but from the people I personally know who have trained with this program I am no less than amazed at the results. This includes patients who have been bed-ridden and wheelchair-bound.

F. The reports that some patients have had exacerbations of their illness following Lightning Process training would not at all discourage me from recommending this training. We know that ME/CFS patients lifespan generally are no shorter than their non-afflicted cohorts. The issue is therefore primarily quality of life. Berit was even willing to sacrifice her longevity for a hope of improving her quality of life. I think many ME/CFS patients are. Any meaningful improvement in quality of life is therefore welcome, and from what I have observed it actually appears that the majority of patients recovering using the LP are experiencing sustained results.

G. When it comes to the integrity and ethical practices of the practitioners, I can only say that I have been very impressed with what I have seen so far. Phil Parkers organization actively seeks feedback, and have a process for accepting and evaluating complaints. The practitioners licenses are renewed on a yearly basis and from the information I have gleaned from communication Berit shares with me from the head office, they are very serious about maintaining the highest professional and ethical standards of conduct in their practitioners.

H. Pyramid scheme I do not see any evidence of such. Each practitioner pays a yearly fee to maintain their status a certified practitioner. This fee includes a mandatory continuing education program. There is also a fee the practitioner has to pay the head office for each client they see. These fees support the head office staff and ongoing program development. This arrangement may be classified as a franchise, but certainly not a pyramid scheme.

I. The lightning Process has reportedly been used very successfully with children and adolescents with ME. I applaud the British National Health Service for granting funds for a randomized controlled study in children. I cannot with my best intentions understand the criticism voiced on your forum of this initiative. The reality is that many parents are currently sending their children for the LP training as it is. Making objective observations of LP participants, and having a control group, would be most appropriate. If the LP training does not work we would all be smarter knowing that fact. We have certainly benefited from such studies in other serious childhood illnesses - like leukemia. In the case of leukemia the therapy may actually -in some instances - kill the child. The fact that many children actually can obtain a cure does, however, justify this kind of risk-taking. Parents of children with ME/CFS have serious reasons to be concerned about their childrens future and deserve to have the various treatment options evaluated objectively. They need to be able to make informed decisions based on facts and not just hear-say.

J. I would also love to see objective, randomized, controlled studies of adults using the LP. These kinds of studies are, however, very expensive to perform. This is where public funding could help out and this is where a strong lobby could be helpful.

K. I find it puzzling to read the kind of malignant comments some of your bloggers place on your web-site and else-where (from what I can see its often the same comments from a select group of individuals in a variety of venues). I also find it interesting that some patients in the UK have received very derogatory comments, and even hate-mail after publicly claiming to have recovered using the LP.

L. I realize that it is difficult to live with a disease like ME/CFS where you may look healthy, but feel like you are near dead. Its taken a long time to gain some degree of recognition of this illness, and I can understand that it is difficult to hear that some are making a recovery without the use of a sophisticated medical regimen. The suggestion of any mind-body component of this illness is understandably difficult to accept.

M. Some fear that this fact underminds their efforts to lobby for more research into the etiology, pathology and treatment for ME/CFS. I understand this fear, it is legitimate. Reality is, however, that there has been very little progress in this field over the past couple of decades, and despite the recent glimmer of hope related to the XMRV, the leap to an effective therapy does not appear to be available soon.

N. Berit fought hard to have her illness understood and accepted by her family and friends, but she was so eager to get well that she was willing to try all kinds of unconventional therapies anything that could offer hope of recovery.

O. The concepts of the Lightning Process was not what she was looking for and certainly not the cure she had anticipated but it worked, and it has worked for thousands of patients in Europe.

P. Cort, I have to applaud you for the open-mindedness you have demonstrated on your website. It was in a large part thanks to your reviews of the Amygdala program that both Berit and I were convinced of the potential and took the chance to invest in the training. Berit chose the LP because she was ready for an accelerated program, and the reports that patients had made full recoveries and were not dependent on long-term therapy or nutritional supplements etc. Had we read the recent comments on your forums we would probably not have had the courage to pursue the training. This fact is rather tragic, because most of the criticism of the program is - from my perspective just not legitimate.

Q. Much more expensive and potentially harmful therapies than LP are applauded in the ME/CFS community. Berit was offered therapy by a CFS specialist that was not only expensive, but had significant potential risks and was entirely unproven (some of the treatments were actually proven to be ineffective with significant side-effects). I applaud you for having an open mind to all kinds of therapies and also for raising funds for research. Unbiased/objective, high quality research is urgently needed so we all can be making well informed choices for therapy.

R. I am certainly not asking you to sensor the comments posted on your forums. The fact is, however, that most patients who have recovered using the LP are no longer spending time on ME/CFS web-sites and you therefore will not see their input on your forums. When Berit alerted me to the feature and I read the comments, I just had to express my observations and thoughts.

Comments

I shall have further comment to add, later. But firstly, a misconception on the part of Dr Frivold needs addressing:

"I applaud the British National Health Service for granting funds for a randomized controlled study in children."

Funding for the pilot study in children is not being provided by the NHS. Funding has been awarded externally by the Linbury Trust and the Ashden Trust.

"I would also love to see objective, randomized, controlled studies of adults using the LP."

No study should be undertaken involving children (a vulnerable patient group) until rigorous controlled trials have first been undertaken in adults.

Dr Frivold may wish to familiarise himself with MRC research ethics guidelines for research involving children.

"MRC Medical Research Involving Children (Nov 2004, revised Aug 2007)" and in particular, sections 4.1 and 4.3 which he can access here:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430

Whether the pilot study has received research ethics approval is in the process of being established.

A Freedom of Information request has been raised in relation to this proposed pilot study a copy of which can be accessed here: http://tinyurl.com/FOIrequestLP1

Questions raised include:

a) No rigorous controlled trials have been published on the application of the Lightning Process in adults. What data has been used in order to establish that overall the likely benefits of the research outweigh any risks to the participants?

With reference to the document "MRC Medical Research Involving Children (Nov 2004, revised Aug 2007)" sections 4.1 and 4.3, what is the rationale for undertaking a pilot study in children when rigorous controlled trials have yet to be undertaken and results published on the application of Lightning Process in adults?

[...]

d) Will children or their parents/guardians be expected to sign up in agreement with certain beliefs and commitments in order to demonstrate the child's "readiness" to undertake the program?

If so, what beliefs and commitments will they be expected to sign up to and at what point in the recruitment process would agreement with beliefs and commitments be sought?

For the purposes of the study, how will "readiness" be defined, by whom, and what tools will be used to assess or determine a child's "readiness"?

e) If selection for and participation in the study does not involve the signing up in agreement with certain beliefs and commitments, either by the child or by their parents / guardians on their behalf, through what means are children to be assessed for suitability for and potential to benefit from the application of the Lightning Process?

f) By what means will it be determined that undergoing the training program would not be detrimental to a child's current health status, as a patient diagnosed with CFS/ME?

What safeguards will be put in place to avoid the potential for exacerbation of existing symptoms or the development of new symptoms whilst undertaking the sessions, in-between sessions and in the weeks and months following completion of the program?

What support will be given to children and their families if a child were to experience exacerbation of existing symptoms or develop new symptoms as a result of participating in the program or as a result of practicing the instructions in-between sessions or in the weeks and months following completion of the program?

g) It is understood that the Lightning Process is being marketed by some franchised "instructors/trainers/coaches" as a process that should be effective for all participants in resolving their symptoms if

a) they are "ready" to undertake the process and
b) they carry out the instructions properly.

This might be considered to place a considerable burden of responsibility on a vulnerable research group and their families in terms of compliance and outcome.

What consideration has been given to the issue of power imbalances where participants (or their families) may feel obliged to please or comply with the researcher's requests or with "instructor/trainer/coach" requests while the program is being delivered, and beyond, throughout the life of the project?

By what means 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 failed 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 apparent improvement or resolution of symptoms/disability following the program were short-lived?

What safeguards will be put in place in order to protect the child's psychological well-being?


Suzy Chapman
http://meagenda.wordpress.com
 
Dr Frivold has written:

"The fact that many children actually can obtain a cure does, however, justify this kind of risk-taking."

I strongly disagree with Dr Frivold's opinion - it is contra to UK MRC research ethics guidelines for vulnerable patient groups.

Dr Frivold has written:

"Parents of children with ME/CFS have serious reasons to be concerned about their children’s future and deserve to have the various treatment options evaluated objectively. They need to be able to make informed decisions based on facts and not just ‘hear-say’."


I repeat that rigorous controlled trials have yet to be carried out and published on studies in adults. How are parents, and children and young people considered competent to consent to participation, able to make an informed decision in the absence of data from adult RCTs?

Dr Frivold has written:

"It should, however, be noted that the people who are accepted for Lightning Process training is a select group. You have to demonstrate to the trainer that you are willing to commit to reexamine your beliefs, and accept that this is a program that requires the patient to do what sometimes can be hard work."

I would remind readers that the UK pilot study in childen proposes to include children as young as eight.

Some links:

Sample application form: Statements and “beliefs” to which prospective “trainees” are expected to sign up:

http://www.changeworksforyou.com/applicationform.htm


MRC Medical Research Involving Children (Nov 2004, revised Aug 2007):

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430


Lightning process for ME didn't work for me (account by dissatisfied client):
Thursday, January 15, 2009, 07:00

http://www.thisisnorthdevon.co.uk/n...idn-t-work/article-613394-detail/article.html


UK national patient organisation, Action for M.E., published this article in the March 2007 issue of its magazine InterAction:

http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf

InterAction 59, March 2007

LP: the light at the end of the tunnel or just another flash in the pan?


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...


A copy of a Freedom of Information request in relation to this proposed pilot study can be accessed here and I hope that Dr Frivold will take the time to scrutinise this:

http://tinyurl.com/FOIrequestLP1


Prospective applicants for LP should note that there is no regulatory body to which LP practitioners/trainers/coaches are accountable.

Suzy Chapman
http://meagenda.wordpress.com
 
The reports that some patients have had exacerbations of their illness following Lightning Process training would not at all discourage me from recommending this training.
I find this chilling. I actually had to read it again to check I had not misunderstood. We know that people have become very severely ill by over exertion. They endure severe pain, must live in darkness unable to feed themselves, incontinent and unable to bear being touched. Many choose suicide over this existence.

If his wife had had these sorts of episodes I doubt he would be so cavalier so we must conclude that her illness was not severe.

The risk of one child in Crawley's cohort having to endure the life that Lyn Gilderdale chose to leave would give any right thinking person pause. We might conclude that the risks can be minimized, but this appalling statement surely sums up everything we have to endure from an ignorant uncaring medical profession.

Mithriel
 
In addition to the concerns outlined by Suzy Chapman, I would also like to add that Dr Frivold's comments in particular are misrepresenting the concerns about LP being expressed by people:

"I realize that it is difficult to live with a disease like ME/CFS where you may look healthy, but feel like you are near dead. It’s taken a long time to gain some degree of recognition of this illness, and I can understand that it is difficult to hear that some are making a recovery without the use of a sophisticated medical regimen. The suggestion of any mind-body component of this illness is understandably difficult to accept."

IF there were a 'simple' means of recovery that was safe, people would be taking it up happily. It is because of the known risks - both physical and psychological - associated with belief systems like the LP to ME sufferers that people are objecting, and that is reasonable objection.

The risks include but are not limited to; over-exertion in people with cardio-vascular insufficiency due to their illness, leading to specific forms of relapse to the point where death or permanent disability could occur, and on the psychological side, the taking up of a position of 'author of own misfortune' when the LP does not work - a position actively encouraged by Phil Parker's modus operandi.

As regards the comment "The suggestion of any mind-body component of this illness is understandably difficult to accept..." That is because the 'mind-body components' are not based on rational science principles when they are being promoted, and, whether they be something like the LP or medically sanctioned CBT/GET, they appear, with good reason, implausible. Again, this is reasonable objection on the part of critics. Another reasonable objection to 'mind-body' beliefs is that people are routinely psychogenically dismissed when these are entertained, leading to both unjust social and material inequalities and injustices and, even more crucially, dismissal of serious physiological impairment, with consequent grave risks to health and indeed life.

As an MD, I would hope Dr Frivold would carefully read the information supplied by Suzy Chapman. Doctors do have ethical duties towards patients, and there is much that is ethically and scientifically unsound about the specific intended LP trial on children in particular, but about the LP in general, and indeed all 'mind-body healing' claims per se .
 
In response to Dr Frivold's:

The reports that some patients have had exacerbations of their illness following Lightning Process training would not at all discourage me from recommending this training.
Mithriel wrote:

The risk of one child in Crawley's cohort having to endure the life that Lyn Gilderdale chose to leave would give any right thinking person pause...
I second that.

Suzy Chapman
http://meagenda.wordpress.com
 
There are currently three active threads on Phoenix Rising forums around LP and around the proposed LP pilot study in children, I hope that Dr Frivold will take the time to look at all of these:

http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children
Lightning Process to be Evaluated in Research Study on Children (currently 173 posts)

http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week
My son & i are giving the lightning process a go on this week (currently 148 posts)

http://www.forums.aboutmecfs.org/showthread.php?3628-Article-Lightning-Strikes-a-CFS-Patient
Article: Lightning Strikes a CFS Patient (currently 46 posts)


Here is another site where several first hand accounts may be read:

http://www.sayer.abel.co.uk/LP.html

Suzy Chapman
http://meagenda.wordpress.com
 
I think a better title for this article would be, "A Husband, Who Happens to be an MD, on the Lightning Process."
 
I concur with the above comments on LP. In addition, I'd like to point out some misinformation included in Dr Frivold's piece:

" We know that ME/CFS patient’s lifespan generally are no shorter than their non-afflicted cohorts. The issue is therefore primarily quality of life. Berit was even willing to sacrifice her longevity for a hope of improving her quality of life. I think many ME/CFS patients are. "

The only study done on the longevity and causes of death for CFS sufferers concluded that they die, on average, 15 years earlier than controls. Top three causes of death are heart disease, cancer and suicide.

I have to wonder by which criteria Dr Frivold's wife was diagnosed with CFS and by whom?

I also thank the doctor for acknowledging that his wife is now a LP practioner and therefore he may be biased. I would also be curious to know what, if any, is his specialty or area of medical expertise.
 
Some of what you have to get your mind right on before being accepted into LP training:

"In terms of my issues and my ability to follow instructions, I am similar enough to all those others who have used the process to perform at new levels of health and happinessand/or recover that I am bound to make the same kind of changes as them."

"My type of issues/illness (that I want to use the process on) are generally easy to resolve using the process."

"My specific issues/illness are easy to resolve using the process."

"I understand that the Lightning Process is a training programme, not a therapy . I understand that learning the Lightning Process in itself does not guarantee me good results, because I alone am responsible for applying or not applying it. I recognise that the mind and body can powerfully influence each other. I am prepared to look at and challenge my beliefs about my condition or illness. I am totally prepared to do the work necessary to get myself well."

Re payment:
"Once paid, fees cannot be refunded in the event of a cancellation on your part, or a failure to complete the training..."

"We reserve the right to terminate your training if we feel your continued participation would be unhealthy or unhelpful for you or another member of the training group. Your fees will not be refunded in these circumstances."

Sounds like you have to be pretty healthy in the first place to take this "training" and not be too logical or independent in your thinking. If you can't "group think" you're out the door, and without a refund!

I DO believe in the "mind-body connection", but unfortunately for me, I can't just stop trusting my observations and experiences and just BELIEVE because someone tells me to. What comes to mind with this program is PT Barnum's statement: A sucker is born every minute.

Too bad there is no internet forum where those who have not been "successful" with this training can talk of their experiences. According to posts elsewhere, those who want to speak to their negative experiences are threatened and bullied into not sharing their experiences online.
 
oerganix;bt1931 said:
... I also thank the doctor for acknowledging that his wife is now a LP practioner and therefore he may be biased. I would also be curious to know what, if any, is his specialty or area of medical expertise.
I understand from Cort's previous blog posting that Dr Frivold is a cardiologist.

Suzy Chapman
http://meagenda.wordpress.com
 
I've got absolutely no doubt at all that The Lightning Process is 100% effective at killing the XMRV virus.

I'm certain that it kills all other retroviruses too, such as the HIV virus...
Therefore all AIDS patients should clearly be sent on a Lightning Therapy course, at their own expense...
And if it doesn't cure them? Well, then they didn't take the course seriously enough, of course... they didn't work hard enough... it would be entirely their own fault.


(Please note... to avoid confusion... this message is written ironically, and absolutely no offense, at all, is meant towards AIDS patients... I am just using the example of HIV to demonstrate that The Lightning Process would never be sold as a 'cure' to AIDS patients... and neither would The Lightning Process be offered as a first line of treatment for AIDS patients... if AIDS patients were treated the same way as ME patients, then the world would, rightly, be in uproar... remember how the western governments reacted to the previous South African President's attitude towards AIDS... they were very critical of it).
 
Cort;73629 said:
For myself, I am in the middle category; I have responded 'somewhat well' to the Amygdala Retraining - which has some similarities to the LP - and other mind/body techniques. They have enhanced my quality of life when I am in my 'safety zone' of limited activity. It has not allowed me to substantially increase safety zone but I am happy for its benefits when I'm in it.
Cort, the experience you describe with the Amygdala Retraining is entirely different to the Lightning Process which promises a cure whether you are in your 'safety zone' or dangerously outside your safety zone. The Lightning Process is designed to completely ignore your body and symptoms. It ignores all of the wisdom our community has built up over the years with regards to things like Pacing. Even GET therapists now recognises that people have to work within their safe limits.
 
I accept that some people with CFS are helped by The Lightning Process...
But this letter displays a severe ignorance of the issues that have been raised on the forum.
It's as if there had never been any discussions about The Lightning Process on the forum, as all of the issues and concerns raised on the discussion threads have been completely ignored... Actually, the author of the letter clearly hasn't had the courtesy of even reading the discussions, but just dismisses them anyway.
The writer of this letter displays some considerable ignorance towards both ME and the concerns which have been expressed on the forum.


"I cannot with my best intentions understand the criticism voiced on your forum of this initiative.... The lightning Process has reportedly been used very successfully with children and adolescents with ME."
Clearly our concerns have not been read then, or with 'best intentions', there might be some understanding of the criticisms which have been intelligently expressed.


"I find it puzzling to read the kind of malignant comments some of your bloggers place on your web-site and else-where (from what I can see it’s often the same comments from a select group of individuals in a variety of venues)."
I'm sorry Cort, but this is just provocative and insulting towards all of us. It's an ignorant comment.
I think that this comment insults you too Cort... This does not accurately portray your forum.
In my experience, the members of your forum are pleasant, considerate, caring, highly intelligent, free thinking, fair minded and supportive individuals, and quite the opposite of 'malignant'.

I wouldn't categorise our discussions as malignant at all, but rather, as always, they are healthy discussions surrounding very important issues... In my opinion, we have had some extremely intelligent, fair minded, sensible discussions regarding the Lightning Process.

Cort, I have a great deal of respect for you, but I'm not sure why this letter has been published. For the first time on this forum, I feel offended. I agree that people should have the right of reply, but if I accused random members of the forum, for example, of being a malignant bunch of bloggers, without even engaging with the discussion threads, then I think I might have been challenged by your moderators.


"Cort, I have to applaud you for the open-mindedness you have demonstrated on your website."
I agree with this sentiment entirely, but it would seem that anyone who discusses the Lightning Therapy in a negative way is to be criticised as closed-minded and malignant.

The tone of this letter has left me feeling sad... it feels like a direct and personal attack on members of the forum... Some of us have legitimate concerns about the safety of the Lightning Process which we have expressed and discussed intelligently. If the Lightning Process practitioners believe in their course so much then they should be able to accept rational criticism, and engage in intelligent discussion, rather than dismissing criticism outright, as 'malignant'.
 
I guess we can all discuss the issues surrounding the Lightning Therapy until the end of time, and express our points of view rationally, intelligently and sensibly until we are exhausted...
but we will make no difference, at all, in protecting people with ME, or in being able to demonstrate why some people are helped by the lightning process and some people are made worse by it, until the Canadian criteria are used for diagnosing ME...
Until we use the Canadian criteria, the term 'ME' means nothing, so saying that 'the Lightning Process cures people with 'ME' means absolutely nothing to any of us, because ME/CFS is an umbrella term which includes a variety of conditions...
And the Lightning Process practitioners select only certain patients... a subset of CFS/ME patients... by a process described in the letter, above... so the claims made about the lightning process do not apply to all ME patients, and it should not be promoted or sold as such.

Until we officially use the Canadian criteria, then our views and our opinions will continue to be dismissed as "malignant comments ... from a select group of individuals", and we will continue to be considered a bunch of hysterical-neurotics, as we always have been by much of the medical profession and others.

In my opinion, all of the issues surrounding the Lightning Process are symptomatic of the last 30 years, or more, of the history of ME.
 
http://www.lightningprocess.com/what-does-it-work-for.aspx

"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

?Addiction
?Anxiety & Panic attacks
?Chronic back and neck pain and headaches
?Depression
?Eating issues
?Eczema
?Fear of failure
?Fibromyalgia
?IBS and Digestive problems
?Insomnia
?Low self esteem, self-doubt, guilt and even self-hatred
?M.E. (Myalgic Encephalopathy)/Chronic Fatigue Syndrome [Ed: or rather "doing M.E."]
?M.S (Multiple Sclerosis)
?Obsessive compulsive disorder
?Smoking
?Stage fright and presentation fears
?Stress & Struggle


And it's also effective for enhancing

?Relationships
?Discovering what you really want
?Interview performance
?Confidence
?Sleep"


not forgetting Parker's take on XMRV:

Phil Parker slide presentation on LP, CFS and XMRV:

http://www.lightningprocess.com/LinkClick.aspx?fileticket=Uz7/MsTEqpU=&tabid=371&language=en-US

@ Slide 7

"If we assume that on average:

67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

And according to our findings 85% of these people recover their health in the 3 days of the LP programme

The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)


Chutzpah? He's got it in spades...

He can step into folks' bodies too...


http://www.philparker.org/healingpro.pdf

"...Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other peoples bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join..."

Suzy Chapman
http://meagenda.wordpress.com
 
Bob;bt1939 said:
...It's as if there had never been any discussions about The Lightning Process on the forum, as all of the issues and concerns raised on the discussion threads have been completely ignored...
I also wonder whether, before compiling his second commentary, Dr Frivold had taken the time to read all three active threads around LP on this forum or just the shortest thread in response to Cort's initial posting, that is, this one:

http://www.forums.aboutmecfs.org/showthread.php?3628-Article-Lightning-Strikes-a-CFS-Patient
Article: Lightning Strikes a CFS Patient (currently 46 posts)

I'm sorry Cort, but this is just provocative and insulting towards all of us...In my experience, the members of your forum are pleasant, considerate, caring, highly intelligent, free thinking, fair minded and supportive individuals, and quite the opposite of 'malignant'. I wouldn't categorise our discussions as malignant at all, but rather, as always, they are healthy discussions surrounding very important issues...In my opinion, we have had some extremely intelligent, fair minded, sensible discussions regarding the Lightning Process...
Absolutely, Bob, it is a very provocative piece; I also object very strongly to the inference that discussions have been "malignant". If Dr Frivold is referring to discussions that have taken place elsewhere then he should provide references so that we are able to evaluate his views on the level of discussion taking place elsewhere.

Concerns about exposing young children to a "training program" when no RCTs have been conducted and published on LP in adults are very legitimate concerns which is why specific ethical guidelines are developed for research in vulnerable patient groups like children and the elderly.

Cort, I have a great deal of respect for you, but I'm not sure why this letter has been published. For the first time on this forum, I feel offended. I agree that people should have the right of reply, but if I accused random members of the forum, for example, of being a malignant bunch of bloggers, without even engaging with the discussion threads, then I think I might have been challenged by your moderators.
Agreed.

I also feel that the title of Cort's blog post needs reconsideration.

This is not a balanced report from a medical professional around the safety and efficacy of the application of an unregulated "training program" and a consideration of the ethical issues around the use of a vulnerable research group, when no rigorous adult controlled trials have been undertaken [1]. It is a frequently provocative opinion piece written by a non ME and CFS specialist whose wife is now a licensed LP practitioner, herself.

The question is Cort - where are you going to draw the line?

Did you consider that you would overlook the provocative nature of some of Dr Frivold's opinions because he is an MD, himself? In your view, does Dr Frivold's status as a medical professional license him to publish contentious opinion and lob accusatory comment that you and your moderators might find unacceptable in forum members, themselves?

If you are approached by other licensed LP practitioners who wish to set out their own experience of LP what are your editorial policies going to be?

Will you be accepting any and all personal accounts from those who have undergone the "process" and have trained to become Phil Parker licensed LP practitioners, themselves, or only accounts by medical professionals who are now licensed to deliver LP "training" or from the spouses and family members of those who are now licensed to deliver LP "training", if they happen to be MDs or health professionals, themselves?

I suggest you need to think very carefully how you will handle approaches in the future.

Otherwise you run the risk of being perceived as someone prepared to use his platform to shill for unregulated, expensive, untested and very controversial "training" programs.

[1] A pilot study in adults undertaken in the UK by Prof Leslie Findlay in 2007 was not published.

Suzy Chapman
http://meagenda.wordpress.com
 
A cautionary tale for site owners

In October 2008, a comment for submitted for moderation on my WordPress site. The author wrote that she was very concerned with the way that Lightning Process was perceived on ME sites in general. She talked about her personal experience of LP and how she had benefited from it. She expressed what I considered to be quite confrontational opinions about the motivations of "ME activists".

Towards the end of her comment she said that she had spent the last four months trying to publicise the training program in an informed and responsible way but had come up against what she viewed as an astonishing and unprofessional amount of negativity.

I let the comment through. There had been no prior discussions on my site, via the comment facility, around LP.

What I didn't know at the time I let this comment through was that this lady was a PR professional and that she was handling the PR account for Phil Parker. I was alerted to this by a third party.

I wrote to this lady that I was most concerned that she had failed to adequately disclose what I considered, as a site owner, to be a conflict of interest.

She disagreed.

I gave her two options: either her initial comment and any further comments left on my site by her would need to carry a COI disclosure clearly setting out that she handled the PR for the Lighting Process company or her comments would have be taken down.

There were already responses to her initial post from Angela Kennedy and from Cort, himself.

Her response was that she did not accept that there was a COI and that rather than include a disclosure of interest on every post, she would prefer that I remove her initial posting - so I took the entire thread down.

Around that time, as a result of a posting flagging up a CBT related petition, my site became the focus of therapists offering "Solution Focused Practice". A dozen individuals, some of whom were members and office holders on the committee of the "UK Association of Solution Focused Practice" left comments on my site.

Some of these had failed to disclose that they were practitioners and in some cases, office holders of the "UK Association of Solution Focused Practice" but I was able to confirm this was the case by researching the organisation's membership register.

This led to a number of exchanges with the National Development Officer of UKASFP during which I took the opportunity of providing him with a published paper - the Crowhurst Nursing Standard article on caring for the severely affected - which he said he would circulate to the members of his organisation.

It was all very civil but exchanges of correspondence generated as a result of issues like the failure to disclose a COI when promoting therapies can take up a considerable amount of time.

This is one reason why I no longer have a comment facility.

Suzy Chapman
http://meagenda.wordpress.com
 
I think that most people on the forum would accept that some people diagnosed with CFS have been helped by The Lightning Process... and 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 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.


Our criticisms lay within the following areas:

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.

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 read through the various threads on this forum which relate to the Lightning Process.
 
Bob;bt1946 said:
...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.

Our criticisms lay within the following areas etc
Good summary of concerns, Bob.

Perhaps Cort might alert Dr Frivold to your list of concerns and provide us with a response?

Suzy Chapman
http://meagenda.wordpress.com
 
ME agenda;bt1953 said:
Perhaps Cort might alert Dr Frivold to your list of concerns and provide us with a response?
I think there's not any point in asking for a response unless we elaborate each of these concerns and explain exactly what the issues are relating to each point... (which we could possibly do, as a team effort).
 
I've asked a friend to speak about her experience with something very similar. It was not something she wanted to do as a teenager. It was against her free will. She considered it mental torture. She was dismissed as an uncooperative patient when they realized she was getting worse from the walking therapy. Thus, leaving their 70% success rate intact. If you send away all the physically sick, who is left except the mentally ill? I hope she will feel free to post here soon. People need to hear her story.
 
From Dr Frivold's text:

"J. I would also love to see objective, randomized, controlled studies of adults using the LP. These kinds of studies are, however, very expensive to perform. This is where public funding could help out and this is where a strong lobby could be helpful."

Agreed. Controlled studies of *adults*, not children. And adults who are selected using the Canadian criteria and which represent a broad cross section of symptoms and severity, not just the ones who Mr Parker deems will 'benefit most' from his training programme. And a study which follows the patients for two years post training to assess the longevity of any positive or negative effects.

At a recent ME support group meeting, Dr Crawley was asked specifically about the ethics of researching the LP on children and, apparently, managed to avoid answering the question. She also implied that she did not think the LP would work for children anyway and that the most effective means of treating their 'chronic fatigue' is to rearrange school timetables.
 
The question is Cort - where are you going to draw the line?

Did you consider that you would overlook the provocative nature of some of Dr Frivold's opinions because he is an MD, himself? In your view, does Dr Frivold's status as a medical professional license him to publish contentious opinion and lob accusatory comment that you and your moderators might find unacceptable in forum members, themselves?

If you are approached by other licensed LP practitioners who wish to set out their own experience of LP what are your editorial policies going to be?

Will you be accepting any and all personal accounts from those who have undergone the "process" and have trained to become Phil Parker licensed LP practitioners, themselves, or only accounts by medical professionals who are now licensed to deliver LP "training" or from the spouses and family members of those who are now licensed to deliver LP "training", if they happen to be MDs or health professionals, themselves?

I suggest you need to think very carefully how you will handle approaches in the future.

Otherwise you run the risk of being perceived as someone prepared to use his platform to shill for unregulated, expensive, untested and very controversial "training" programs.

[1] A pilot study in adults undertaken in the UK by Prof Leslie Findlay in 2007 was not published.

Suzy Chapman
I'm going to draw the line where I always draw it: if people with CFS benefit from any therapy they are welcome to portray it here. I am not being deluged with requests for Lightning Practitioners or people who have experienced success with LP to portray their stories. In the 10 months that this Forum has been open there's been one story on Lightning Process followed up by her husband's response.

I think you're jumping to conclusions if you think this Forum is somehow going to be a mouthpiece for LP practitioners because of the initial blog and its followup.

The question whether I will be accepting 'any and all personal accounts' from people who have taken the LP or just medical practitioners is a strange one to me. Everyone is free to post or blog about their experiences using LP. I wish they would. I was under no illusions about how Dr. Frivold's post would be received but I thought he had the right to make it. No attempt has been made to censor anyone. Anyone can post a blog on their experiences with LP or any other treatment -as they have.

I think the idea that I am using this platform to 'shill' for any particular technique is extremely unfortunate.. Here's the definition of shill "somebody who promotes somebody else or makes a sales pitch for something for reasons of self-interest". Your use of that word suggests that I am somehow making money off the LP. I have no connection with LP, I have never taken it and I have no plans to take it and I post blogs on a wide variety of subjects.

I understand this subject is disturbing but this woman did have CFS and she did become well after using LP. My question to you is if someone becomes well should they be ignored? Perhaps you feel that only some cases of success should be posted but I am very uncomfortable at doing that. Nor am I alarmed to hear of a case such as Berit's, In fact I expect them.

I suspect that there are a going to be a percentage of people who do very well on LP. The reason I suspect that is that it seems to be true for people trying alls sorts of protocols from the methylation protocol, antivirals, antibiotics, hormone therapy, homeopathics, to stems cells etc...some people will do very, very well on each of them and most people will do less well or not well. This is very wide disorder with all sorts of subsets and each of them is worthy of discussion. In the next couple of weeks, for instance, I'm going to present blogs on people who significantly improved using pregnenolone and 5-HTP.

There is no one answer to ME/CFS. For most people there is no answer at all - but for a lucky few there is a answer. I would feel uncomfortable denying anyone the possibility of finding something that could help them. I've had this problem for too long to be willing to do that.

I think its best to view this forum in the context of a tool that allows all side of a debate to be presented.

(I did the title because it was catchy, by the way - which was the way I always do titles. I could have said Berit Frivold's husband answers or MD with wife who took LP Replies or something like that...but that was just too cumbersome - it was aesthetically displeasing...:))
 
From Dr Frivold's text:

"J. I would also love to see objective, randomized, controlled studies of adults using the LP. These kinds of studies are, however, very expensive to perform. This is where public funding could help out – and this is where a strong lobby could be helpful."

Expensive?

Since LP practioners make thousands of dollars per trainee for 2-3 days work, perhaps they could set up these controlled studies....hmmm?

Of course, the requirement that participants agree to the statement "My illness is easy to treat with this method" (my paraphrasing) and other non-scientific statements would make it impossible to have any kind of meaningful study in the first place.

This resembles the way the psychobabblers require that anyone with post viral fatigue or other organic disorders be omitted from studies of CFS/ME.

And just how does the good doctor think such "trials" could be randomized? CBT as the placebo?

These very suggestions are part of a campaign to have this training perceived as a treatment and a cure, while they take the liberty to disclaim that it is only a training. One would only have "trials" of a medical treatment, so the inference is that this IS one. But since it is simply a "training", they don't have to adhere to any kind of scientific standards.

It's called having your cake and eating it too. And very expensive cake it is.
 

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