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An MD on the Lightning Process

Blog entry posted by Cort, Apr 30, 2010.

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.
  1. Dx Revision Watch
    Three further threads associated with the Lightning Process and the Bath/Bristol pilot study in children:

    Article: An MD on the Lightning Process

    http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process

    Lightning Process to be Evaluated in Research Study on Children

    http://www.forums.aboutmecfs.org/showthread.php?3538-Lightning-Process-to-be-Evaluated-in-Research-Study-on-Children

    My son & i are giving the lightning process a go on this week

    http://www.forums.aboutmecfs.org/showthread.php?3827-My-son-amp-i-are-giving-the-lightning-process-a-go-on-this-week
  2. Dx Revision Watch
    ME Association and The Young ME Sufferers Trust joint Press Release


    Press Release

    Scientific trial involving children and the Lightning Process is unethical, says joint statement issued by two national ME charities

    Wednesday, 04 August 2010 17:15


    A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is unethical, say two of Britains leading ME/CFS charities The ME Association and the Young ME Sufferers Trust.

    In a joint statement issued today (4 August 2010), the two charities say:

    We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.

    The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged eight to 18 with ME/CFS into a randomised controlled trial (RCT) comparing the Lightning Process with specialist medical care. It is planned that over 90 children aged between eight and eighteen and their families will be involved in the study.

    The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups. The document MRC Medical Research Involving Children is quite clear on this issue. It poses the question: Does the research need to be carried out with children? In answer, the MRC states: Research involving children should only be carried out if it cannot feasibly be carried out on adults.

    The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process.

    A survey of 4,217 people carried out by the ME Association on the management of ME/CFS found that over a fifth of those who had tried the Lightning Process were made worse (7.9% slightly worse,12.9% much worse). If any trial is to be held, it should first be on adults, who can give informed consent. No rigorous RCTs into the application of the Lightning Process have ever been undertaken.

    Despite many years of scientific research there is still no single diagnostic test for ME/CFS, nor is there a curative treatment. The theory upon which the Lightning Process is based, together with its claim that the prolonged nature of the illness is caused by the adrenaline, nor-adrenaline and cortisol loop is not scientifically proven. Moreover, the Advertising Standards Authority recently ruled that an advertisement in an internet sponsored link containing claims of its effectiveness by a Lightning Process practitioner should be removed. We understand that the practitioner will be involved in this study and we find this concerning.

    The Trading Standards departments of two local authorities have also taken action over therapeutic claims by Lightning Process practitioners following referrals by Dr. Charles Shepherd of the ME Association. The Lightning Process calls itself a training programme, not a medical treatment, combining concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. It claims to be effective for ME/CFS and psychological problems such as anxiety, stress, depression, guilt, low self esteem. Any evidence for this effectiveness on ME/CFS is purely anecdotal. ME has long been classified by the World Health Organisation as a neurological illness, not a psychological condition.

    We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated process with adults.

    Furthermore, we have serious concerns about the primary outcome measure, which is school attendance after six months. Children have a legal right to suitable education for their particular needs, which may or may not include school attendance.

    The statutory guidance Access to Education for Children and Young People with Medical Needs explains that whilst it is desirable for children to be educated in school, other forms of education must be provided for those who need it. The Chief Medical Officers Working Group Report on CFS/ME (DOH 2002) stated that most children with ME will need education in their homes at some time, potentially for a considerable period. In 2009 the Education White Paper Back on Track : A strategy for modernising alternative provision for young people included virtual education. Chapter 7, Learning from the best and supporting innovation, spoke of e-learning and virtual provision, particularly for pupils who cannot attend school due to health needs. Accessible education is also provided for in disability discrimination law.

    If school attendance is the primary outcome measure of this study, families involved may then feel pressurised into avoiding alternative forms of education which would benefit their children and to which they are legally entitled.

    For all these reasons, it is our considered opinion that this study of the Lightning Process in children is unethical and should be abandoned.

    NOTES TO EDITORS

    References:

    '164,000 awarded for new research into the treatment of a chronic childhood condition'.

    Press release issued by The Royal National Hospital for Rheumatic Diseases, which can be found at their press release page:

    http://www.rnhrd.nhs.uk/index_sub_menus/news/news_menu.htm

    Advertising Standards Authority ruling:

    http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx
  3. kermit frogsquire
    Cort, I think it is utterly disgusting that you are, in a fashion, promoting this process and others like it, Gupta's Amygdala.

    All of these treatments are absolutely illegal under UK law, and may I add US law. Under The Consumer Protection from Unfair Trading Regulations 2008 it is an offence to aggressively market such treatments to vulnerable groups. Furthermore it is criminally illegal to claim to treat or cure any disease if it has not been established by independent medical studies. Furthermore all official health organisations outlaw testimonials and other means of selling, as such Gupta was forced to remove any association with his hypnotherapy organisation from his site.

    What you may not know is that UK authorities are extremely lax in upholding the law, in fact they are next to useless, which is why the UK has the rather unenviable nick name internationally of being called 'Treasure Island', as it is open season here for all con men and charlatans.

    Coming to that, in just a few years Gupta has owned a string of dating agencies, property development firms and goodness know what else. Many of them bankrupted. His latest get rich quick scheme is Amygdala retraining.

    If I made up a pill that was nothing more than an M&M, and started advertising that it was a secret recipe that would cure everyone with ME, then put up some testimonials, would you advertise that. And yes M&M would cure many people that think they have ME but really have depression, it is called the placebo effect. In fact I'd have a cure rate of about 30% and up to 50% if I advertised it with enough mysticism as per the Lightning Process.

    Now imagine this was cancer and not ME, do you think any one would stand for M&Ms being sold as cures for cancer?

    I think quite honestly you have destroyed any credibility you have within the ME community. ME needs funding, it needs research and it needs ALL treatments that claim to be a cure to be VALIDATED before they are advertised to others. Furthermore before anyone says they "felt better" they should have a long think to themselves whether in fact it was all in their head, and really a placebo response.

    For the record I have done the Lightning Process. It had zero effect. In my group there were several people with obvious bipolar disorder, and the people that had ME that said they felt better (due to the unbelievable pressure put on them in the seminars) really were not objectively better at all.
  4. Dx Revision Watch
    As published on Co-Cure, 5 July 2010

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1007a&L=co-cure&D=0&T=0&P=4421

    Subject: OTHER: How to complain about an ad that makes a health claim in the UK

    For anyone interesting in complaining about ads that makes a health claim:
    The rules for non-broadcast ads in the UK are at:
    http://bcap.org.uk/The-Codes/~/media/Files/CAP/Codes/CAPCode.ashx

    The ad about Lightning Process broke 3.1 and 50.1.

    -------------------------------------------------

    In connection with:

    Advertising Standards Authority (UK) adjudication on Withinspiration (Lightning Process)

    It should be noted that:

    Lightning Process instructor/trainer/coach, Alastair Gibson, had already
    identified himself, on his "Withinspiration" website, as "one of the two
    practitioners working with the NHS" in connection with the Dr Esther
    Crawley led pilot study.

    At 29 March, his website had carried this information:

    "Breaking News - NHS and Lightning Process research collaboration.

    "A new pilot study involving the Lightning Process and the NHS has
    been awarded 164,000 for research into the treatment of CFS/ME in children
    and adolescents. Alastair Gibson is one of the two practitioners working
    with the NHS and the young people in this exciting research study. Find out
    more..."

    http://www.withinspiration.co.uk/lightning_process_NHS_research.php


    On 16 May, I submitted a comprehensive FOI request for information to the
    University of Bristol in connection with the LP pilot, and I received a
    response on 17 June. I will update on responses, shortly, on ME agenda
    site.

    This pilot study does not yet have research ethics approval.

    Extract from FOI, 17 June 2010:

    "The study is currently going through the ethics approval procedure and
    this information is expected to be published around August / September
    2010."


    Pilot study press release issued 2 March 2010:
    Research study to investigate a chronic childhood condition

    http://www.bris.ac.uk/news/2010/6866.html

    Suzy Chapman
  5. Dx Revision Watch
    Advertising Standards Authority (UK) adjudication on Withinspiration (Lightning Process):

    Complaint against Withinspiration upheld.

    "Lightning Process instructor/trainer/coach, Alastair Gibson, had already
    identified himself, on his "Withinspiration" website, as "one of the two
    practitioners working with the NHS" in connection with the Dr Esther
    Crawley led pilot study."

    For full Adjudication and additional information see:

    Post # 226

    http://www.forums.aboutmecfs.org/showthread.php?3538-Lightning-Process-to-be-Evaluated-in-Research-Study-on-Children&p=99417&viewfull=1#post99417


    Post # 229

    http://www.forums.aboutmecfs.org/showthread.php?3538-Lightning-Process-to-be-Evaluated-in-Research-Study-on-Children&p=99424&viewfull=1#post99424
  6. Bob
    Cort, your link seems to be broken...
    So here's the correct link, for the 'neverending' discussion...
    http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process
  7. Cort
    Another conversation on the LP is going on here: http://www.forums.aboutmecfs.org/newreply.php?do=postreply&t=4687

    This is the main thread for this discussion - which seems at this point - neverending :)
  8. Dx Revision Watch
    Section highlighted in blue refers to LP


    From Dr John H Greensmith, ME Free For All.org

    Open letter to Esther Rantzen, when Independent candidate for Luton South, on behalf of the M.E. Community (4 May 2010)


    CC: all my M.E. contacts; Phil Parker; Dr Esther Crawley, with permission for all to forward and re-publish wherever they choose.

    Dear Esther,

    If you are elected as MP for Luton South on Thursday 6 May 2010, I hope
    that your constituents will think that you serve them well, properly
    represent them and communicate with them, more democratically than in
    another, much wider, constituency that you already represent, albeit in
    an unelected capacity: the M.E. Community.

    For background information, I am a Research Psychologist, PhD, who has
    been unable to work, or live any normal kind of lifestyle, since being
    diagnosed with M.E. (and I mean Myalgic Encephalomyelitis, not any other
    kind of variant, CFS, PVFS, CFIDS etc. and I have had all other known
    illnesses of both physiological and psychiatric origin ruled out) in
    1988 - 22 years, at the time of writing.

    I have been frustrated, on several occasions, at not being able to
    respond to comments you have made, in one medium or another, that are at
    least controversial; in some cases inadvisable or even potentially
    harmful. I will restrict the examples to just a few, in this letter, to
    illustrate the broader principle: that I believe your celebrity to be
    unfair and unhelpful to people with M.E. unless supported by scientific
    evidence.

    On the day after Kay Gilderdale's trial, 26 January 2010, you appeared
    on several television programmes including ITV, BBC and the Jeremy Vine
    radio show, BBC Radio 2, on which you optimistically asserted that 80%
    of M.E. sufferers will make a recovery. At the same time, on Scottish
    Television, Dr Debbie Wake, told viewers that "very few ever recover,
    very few return to work." Now, with such polarised views, both cannot
    possibly be right. So whose version can we believe? Well, to all of the
    people who have suffered from M.E. for decades and those who care from
    them, it feels like Dr Wake is nearer the true mark. The truth is that
    nobody really knows. And why? Because the only official figures we have,
    from the Department of Health, are an estimate, based upon a similar
    estimate made by the Centers for Disease Control (CDC) in America; in
    other words, a guess based upon another guess. But you must have got
    this figure from somewhere, so will you please give us the reference to
    the source you are citing, so that we can check its reliability, or will
    you say that it has no more validity than an opinion, or withdraw it.
    Doing nothing in response to my request would not be a fair option.

    I am pleased to have the opportunity of writing to you today, in your
    capacity as an Independent political candidate for the seat of Luton
    South, to ask your opinion of the intentions expressed in this letter
    (full text below) from Nick Clegg to one of his constituents who has
    M.E., in which he questions the NICE (National Institute for Health and
    Clinical Excellence) Guidelines of 2007 and calls for an independent
    scientific committee to monitor biomedical research:

    Dear Mr xxxxxx

    Thank you for your correspondence regarding some of the problems that
    are currently causing concerns for people with ME/CFS including
    inadequate research and the recent NICE guidelines on the subject.

    Unfortunately, a ballot to secure an adjournment debate on these issues,
    scheduled for the week commencing November 19, was unsuccessful.

    As I'm sure you are aware, one of the main obstacles to the adequate
    treatment of ME is the lack of knowledge and consensus about the
    disease. There are many theories as to the causes of the disease but no
    conclusive proof to fully support any of them. This is why it is vital
    that more research is done into the causes and progression of this
    difficult to diagnose condition.

    What is not in doubt is the very real physical and psychological damage
    caused by this disease. The Liberal Democrats have long argued that
    funding and research must be focused on the `bio-medical' factors
    involved and not just simply managing the `psychological' issues.

    Whilst I welcome the fact that NICE conducted an investigation into
    ME/CFS, I do understand and empathise with the concerns raised about the
    findings. The recommendation that patients with ME/CFS be treated using
    an `Activity Management Programme' made up of Cognitive Behavioural
    Therapy and Graded Exercise Therapy does not follow the World Health
    Organisation guidelines which categorise ME as a neurological condition.
    In failing to recognise the bio-medical problems of ME sufferers, the
    NICE guidelines also fail to recognise the needs of ME sufferers.

    To help address the unique challenges posed by a complex and poorly
    defined condition like ME, the Liberal Democrats believe in the
    establishment of an independent scientific committee to oversee all
    aspects of ME research. We would also like to see the government and the
    Medical Research Council work with ME sufferers and biomedical
    researchers in order to achieve a proper understanding of the condition,
    challenge unjust perceptions and consider the issue of research funding.

    Whilst we welcome the establishing of local centres to focus on ME, we
    feel the NHS is still too centralised and too unresponsive to the needs
    of patients and families. We believe the special needs of those
    suffering conditions like ME can be better addressed by empowering
    patients and making the NHS more accountable at local level.

    Thank you again for taking the time to contact me about this issue.

    Yours sincerely
    Nick Clegg MP


    May I ask, What would your policy, as an Independent MP, be? How would
    you lobby your own MP to represent you?

    I have wanted to reply to some controversial points that you - and
    sometimes, your daughter Emily (Wilcox) - have made in articles,
    especially in the Daily Mail, for example about Emily's recovery after
    treatment by Professor Findlay and to check whether you are advocating
    Cognitive Behaviour Therapy (CBT) and Graded Exercise therapy (GET),
    both recommended by the NICE guidelines, despite all evidence showing
    that CBT is ineffective and GET makes a majority of M.E. sufferers
    worse, some irrecoverably so? For someone with such a high celebrity
    profile, you are very difficult to reach by e-mail, except perhaps via a
    showbiz agent, which is not appropriate for this purpose. You defeat
    every search option I know.

    My most serious complaint about lack of a fair right of reply is with
    respect to the Lightning Process, which you have endorsed on their
    website for some time and do now in other print and broadcasting media,
    including the post Kay Gilderdale trial interview. I have tried to get
    an e-mail address for you from the Daily Mail, Sue Peart, Editor of the
    Mail on Sunday and from several journalists, who wrote pieces with you
    and Emily, before finally asking Phil Parker, inventor of the Lightning
    Process, to forward my e-mails to you and Austin Healey. I am especially
    annoyed that you have not replied to any of the three e-mails that I
    sent to Phil Parker, including two about the proposed research with
    children, under the direction of Dr Esther Crawley and an earlier one,
    around March 2009, following an article "Jane's Flash Recovery" (in You
    magazine of the Mail on Sunday, 22 February 2009). I should say that
    none of the others replied either but all still continue to advocate it
    and/or make careers from it.

    I do not think this is in the spirit of democracy and fair right of
    reply for which, I presume, you are standing in Luton South and I hope
    that you will not ignore this and respond to my personal appeal for a
    reply now and every time your opinions are questioned by scientific
    evidence.

    I imagine that you are very busy with the hustle and bustle of
    electioneering right now, so I shall be content to wait a reasonable
    time for you to attend to a comprehensive answer.

    Yours sincerely
    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All.org
  9. Dx Revision Watch
    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." [1]


    On 3 March, the University of Bristol issued a press release announcing a pilot study on Lightning Process and children [2]. 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" [3] 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 [4]:

    "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." [5]

    But in 2008, Action for M.E. and the children's organisation AYME published results of a joint patient survey [6]. 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 [7]:

    "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%2059%20lightning%20process.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 [8] 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

    "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
    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"

    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 [8]. Read a sample application form, here:
    http://www.changeworksforyou.com/applicationform.htm

    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 [1].

    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


    [1] LP Doesn't Work for ME: Personal accounts from LP "trainees"
    http://www.sayer.abel.co.uk/LP.html
    Contributions to: john23@sayer.abel.co.uk

    Letter: Lightning process for ME didn't work for me
    http://www.thisisnorthdevon.co.uk/news/Lightning-process-didn-t-work/article-613394-detail/article.html

    [2] Press Release: University of Bristol, 3 March 2007
    http://www.bristol.ac.uk/news/2010/6866.html

    [3] MRC Medical Research Involving Children (Nov 2004, revised Aug 2007)
    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430

    [4] Minutes: Forward-ME meeting, House of Lords, 8 July 2009
    http://www.forward-me.org.uk/8th%20July%202009.htm

    [5] Position statement: Action for M.E., April 2010
    http://www.facebook.com/actionforme

    [6] Patient Survey 2008, Action for M.E. and AYME
    http://www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf

    [7] Article: InterAction 59, March 2007
    http://www.afme.org.uk/res/img/resources/IA%2059%20lightning%20process.pdf

    [8] Lightning Process website
    http://www.lightningprocess.com/what-does-it-work-for.aspx

    [9] Sample Lightning Process application form
    http://www.changeworksforyou.com/applicationform.htm

    Suzy Chapman
    http://meagenda.wordpress.com
  10. Julia Rachel
    Dear Dr. Frivold...I think it is FANTASTIC that your wife has had amazing results with the Lightening Process. Since you posted this Blog on our ME/CFS/FIBRO/CFIDS site, I feel it is my right to speak my opinion on this subject and I hope that you read what I have to say. You mentioned two points that I wish to adress specifically with you.
    #1) "you mentioned..... 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). and
    2)". I would also love to see objective, randomized, controlled studies of adults and children 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."

    The reason Dr. Frivold that some if not most folks are upset with the LP process and your story is that this process puts ME/CFS/VICD/CFIDS/FIBRO into a "mental labeling category", Which essentially means that one can use "mind over matter" in order to heal ones self. It is true, a positive attitude and a hopeful outlook can make the best out of a poor situation. Humor, Laughter and being grateful go a long way towards improving ones life when living with a chronic illness.

    But Dr.Frivold: CFS/ME has been scientifically proven to be a biological disease, not a mental syndrome. It has been scientifically proven that In order to contract CFS/ME 2 factors must be present. 1) the patient must have a genetic predisposition (see HLA scientific data) and 2) a virulent trigger must occur to activate the disease.

    In addittion to this, 2 subsets are known to occur. Subset A) (apprx. 20-30% of patients) is when ME/CFS is contracted, then no viral reactivation is present. Then subset B) (apprx. 70-80% of patients) is when CFS/ME is contracted then after the original triggering event occurs; 1) immune activation occurs; 2) cellular dysfunction occurs; 3) viral reactivation occurs. The viral reactivations include EBV, HHV-6A,CMV and 2-4 other co-infections such as Micoplasma and Chlamydia P ongoing infections. When left untreated, these viruses & infections keep reactivating and make the patient chronically ill.

    I would like to know if your wife was tested for the genetic predisposition and what her onset virulent trigger was. I would also like to know what subset your wife has been diagnosed in. Subset A) or Subset B)?

    In additiion to these subsets, factors such as OI (Orthostatic Intolerance), NMH (Neurally Mediated Hypo tension ) and some types of cardiac involvement can be present including heart damage and risk for heart failure; which can all be caused by the viruses present. In addittion to these symptoms, auto immune dysfunction, central nervous dysfunction, Brain Swelling, severe migraines, heat and cold intolerance and fevers have been noted to be associated with CFIDS. In Addittion, extensive sleep studies have been conducted proving that CFIDS patients have serious sleep disorders resulting in insomnia, sleep disturbances and irregularities which interfere with imperative nightly cell restoration needed for bodily function, which without contributes to physical and mental decline. As the HHV-6A virus envelopes the brain and central nervous system, cognitive and physical decline ensues as well.

    Only 1-3% of patients in the group (A) of non-viral reactivation recover spontaneously and fully. It is also noted that both subsets show increased reactions to environmental, mold , food and medications which can be life altering and threatening.

    My QUESTION FOR YOU, IS WHAT GROUP OF me/cfs/cfids has your wife been diagnosed in? As an advocate for recovery for ME/CFS/CFIDS, I am "open" to any type of treatment which will benefit a patients recovery. Also, it must be noted, as it is scientifically proven, that those ME/CFS/CFIDS patients with cardiac involvement are at risk for heart, physical and cognitive problems if pushed beyond their physical and/ or mental capacities. Once again, I commend you for your wifes' recovery, I am happy for you both; yet I truly believe more information about your wifes' diagnosis must be understood and stated publically before a viable decision option to utilize the Lightening Process should be made, in consideration of each individuals ME/CFS/CFIDS/VICD case. And, I believe it would be most advisable to learn as much about this illness as you can, before stating that the Lightening Process may even be a viable option for CFS/ME/CFIDS/VICD/Fibro Patients.

    As a patient of CFIDS and with 6 auto immune diseases along with 6 viruses, my treatment plan consists of antivirals to reduce my viral load and antibiotics to try and stave off my secondary infections. I am also on a special anti-viral as one of the viruses is attacking my optic nerves, so we are stopping my vision loss. My 21 year old son has CFIDS as well. Due to his cardiac involvement and cognitive impairment from the high levels of HHV6-A which are enveloping his brain; cognitive therapy has proven to be harmful for his medical progress. He gets too tired mentally as the virus has affected his brain. A year ago he was in a wheelchair and was unable to read and write. 5 years ago....He was a 3.5 GPA student who played 5 sports first string and was looking at a career as an aeronautical engineer and pilot in the Airforce. Today, 18 months after being on Anti-virals and nutritional supplements, he is 50% better cognitively, getting an "A" in a University Geology class and preparing for phase 2 of treatment for CFIDS.

    1-3% of patients with CFS/ME recover fully without medical treatment. I predict this percentage is in the subgroup A without viral reactivation. Perhaps your wife is in this subgroup? The point is, your wife is now better and living a quality of life and this is great. However, there are approximately 17+ million patients in the world that are not in the same subgroup as your wife, who do not have the same biological issues that your wife has and who many never get the chance for even remotely a decent quality of life.

    So, my point being is that this disease, these viruses, this retro-virus named XMRV is affecting patients in a way in which you and your wife have not experienced. I ask for your compassion and understanding that the diagnosis your wife was given, may not be the same disease which are afflicting so many others on this site. And I ask that in your continual understanding of this disease, that there are many forms, subsets and paths for recovery; all dependent on each patients case file.

    Godspeed for you and your wifes recovery.
    Julia Rachel