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.