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Lightning Process to be Evaluated in Research Study on Children

Discussion in 'General ME/CFS News' started by Jenny, Mar 4, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes Bob, that was the last meeting of the current APPG on ME before the election. As all APPGs are dissolved at elections, they will all need to be reconvened following the election if they are to continue. So a new committee will need to be assembled plus 20 "qualifying members" (cross party).

    No easy task, especially given that some MPs are on a number of APPGs. Very few of the 20"qualifying members" turn up at meetings. In fact, not all of the office holders turn up, not even for AGMs (usually held in July before the summer recess). AGMs have often been hard pressed to scrape together a quorum.

    If you are interested in APPG on ME issues, a copy of the Legacy Document for the next group (if there is to be another group) is on my site; there is also a response to the Legacy Document by Paul Davis (RiME). The APPG on ME also has its own website, but whether any new group that can be formed will inherite this site, isn't clear. The website has Minutes of previous meetings, and latterly, verbatim transcripts which are being paid for by the secretariat, AfME and the MEA.

    None of the patient orgs (including the secretariat) are members of the APPG on ME. Only parliamentarians are members and only parliamentarians can vote at meetings. However, the reps for Action for ME and the MEA, and AYME and TYMES Trust, are accorded higher status by parliamentarians than other patient group reps and are engaged with as though they were honorary MPs.

    The APPG on ME current Chair, Dr Des Turner, is not standing in the election but taking up a seat in the Lords.

    I will post some of the Minutes of the Forward-ME meeting in the next posting.

    Suzy
     
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Extract: Minutes Forward-ME Meeting Wednesday 8 July 2009

    The July 2009 meeting of Forward-ME is the one at which Dr Esther Crawley and Dr Hazel O'Dowd gave a presentation, during the course of which Dr Crawley is recorded in the Minutes as having stated:

    “Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

    You see how they are all doing this? White, Parry, Spencer, Holgate, Shepherd, Crawley...

    The issue of GOSH giving a platform to Phil Parker was also raised at Item 5 on the Agenda (I have highlighted this section in blue).

    It's already been noted that in February 2009, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded 800,000 for research into “CFS/ME” and “Fatigue” in children:

    http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

    More funds for Dr Crawley here: http://www.bristol.ac.uk/ccah/grants/


    As you may be aware, Bob, there used to be an ME Alliance, this appears to have been replaced by this caucus group to the APPG, which was convened and chaired by the Countess of Mar. Lady Mar decides who will and who will not be extended an invitation to provide a rep to attend her meetings and who will be invited to address the group or give a presentation. The Agenda is set by the group and its chair. Members of the public are not permitted to attend these meetings, even as observers.

    The 25% ME Group withdrew from the group, last year. Invest in ME have been muttering about withdrawing support for the group for some time now, but have yet to make this official.

    See this posting on my site re the GOSH workshop and LP:

    http://meagenda.wordpress.com/2009/07/22/gosh-gives-platform-to-lightning-process/

    I cannot confirm whether it was known in July, last year, that Dr Crawley would be pitching for funding for an LP related pilot study using children. Nor can I confirm what the upshot of Mary Jane Willows' discussions with GOSH/University College London were. Whatever AYME's views are on LP, they are now in a difficult position given that Dr Crawley is their Medical Consultant. Patient orgs need to be careful about whom they jump into bed with.


    http://www.forward-me.org.uk/8th July 2009.htm

    FORWARD-ME

    Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords (in a HoL meeting room)


    1. Present:

    Christine Harrison – BRAME
    Bill and Janice Kent – ReMEmber
    Jane Colby – TYMES Trust
    Peter Spencer – AfME
    Charles Shepherd – MEA
    Mary-Jane Willows – AYME

    Margaret Mar – Chairman



    2. Apologies:

    Tanya Harrison – BRAME
    Sue Waddle – MERUK
    Kathleen McCall – Invest in ME



    3. Minutes of the Meeting held on 21 April 2009:

    The minutes of the meeting were agreed and signed by the Chairman.

    4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical Research Network Collaborative (CCRNC) and Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

    The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

    Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

    She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

    The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

    There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

    Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

    Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

    An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

    Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.


    The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

    Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

    Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

    Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about 100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

    Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

    Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

    Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

    Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

    Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GP’s. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

    Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

    Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

    Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

    Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

    Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

    Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GP’s who do not want to listen.

    Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET . Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

    Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

    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.

    [...]

    ----------------------------
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You've heard that old saying, Dr Yes, "Behind every great woman, there's a guy with a dongle."
     
  4. Koan

    Koan Be the change.

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    :ashamed:
    :D :tear: :D :tear: :D :tear: :D :tear:
     
  5. Bob

    Bob

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    Thanks Suzy for all of that info... I'll print it out and read it later, with a cup of tea.

    Bob

    :sofa:
     
  6. sproggle

    sproggle Jan

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    I don't give a Fukuda! love it :D

    Seriously though it's worrying that children will be put through this "treatment" it's potentially extremely damaging physically and mentally!

    Not up to going through all this thread or being more helpful but just had say how angry I am at it. Why can't they use consenting adults? Will noone consent?

    *Mods* You might get more response if the title of this thread stated it was aimed at children. I would have been straight here if I'd known that -it shocking!! :eek:

    Jan xx
     
  7. Dr. Yes

    Dr. Yes Shame on You

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    suzy, Please Don't Feed the Gibbon!

    I find this to be good advice in general.
     
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    No detailed info, as yet, resulting out of the informal discussions that followed the APPG on ME meeting, but I do have the following:

    I am given to understand that it was explained to Christine Harrison (BRAME) and to Mary Jane Willows (AYME) what LP is and how it works; that Christine Harrison expressed considerable concerns and did not want to see LP used on children.

    That Mary Jane Willows considers that it may help some children and adults and was annoyed that people have been saying that AYME supports LP.

    That Jane Colby (TYMES Trust) left just as the table of charity org reps was approached.

    It is reported that Jane Colby is concerned about the prospect of an LP trial. The source of this information unspecified, so it's not clear whether this was proffered by another charity rep during discussion of LP, yesterday, or whether this was already understood by one of those attending the meeting.

    There may be more detailed information forthcoming in the next few days when folk have recovered from attending the meeting.
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    In 2007, a pilot study on LP was run by Findlay and Gerry de Vries.
     
  10. fingers

    fingers Senior Member

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    Do you know what was reported, Suzy?

    Update from my end:

    Received confirmation that Peter Spencer has got my e-mail, but no response yet.

    Estabished good contact with AYME and Asden trust (one of the funders), and hope to have productive discussions tomorrow.

    There is no way this is going ahead, and no way that Phil Parker will continue to bullshit his way through all of this.

    Anybody have any journalist friends at the broadsheets?
     
  11. fingers

    fingers Senior Member

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    Come on Dr.Yes, I'm enjoying your posts:thumbsup:, but give us the benefit of your intellect (I know you have one), as well as your SOH.
     
  12. Bob

    Bob

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    fingers, total respect to you... and thanks...
    I wish I had some journalist contacts... that would be very useful! But I'm afraid I don't.
     
  13. Bob

    Bob

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    Great stuff Suzy, thanks for the feedback...
    At least it seems that some of them are sitting up and taking notice about this one.

    Bob
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    The Findlay/De Vries study was a pilot and no paper was published. I think it was fairly inconclusive. If you Google there should still be references to it.

    I had some contact with PP in 2007; I contacted him for information about who was running this pilot (at that point it was not generally known that it was Findlay/De Vries).

    The LP website was proclaiming:

    "We are pleased to report that we are currently undertaking research, using established scientifically valid research protocols, under the scrutiny of a leading authority in the field of M.E/CFS"

    I had asked:

    Who is the Principal Investigator, please?
    Who is the "leading authority" in ME/CFS who is supervising this research project?
    Which research criteria are being used in order to select subjects, ie. Oxford, Fukuda, Canadian?
    Myalgic encephalomyelitis is indexed in the WHO under G93.3, what condition is myalgic encephalitis?



    PP's reply was amusing:

    "The"leading authority " in the field has specifically asked that the details of the project be not fully reported until the findings are in. Amazingly it appears that there is such interest and bias within the field that revealing too much at this stage would just cause discussion that would be inappropriate to where the project is at this time..."

    I also had problems with PP's former PR leaving comments on my site promoting LP but where it had not been disclosed that the author of those comments was in fact the PR for PP, at the time.


    Try Private Eye.

    They have already done a small piece in relation to PP and alleged legal threats; it is possible that they are continuing to monitor Parker.

    LP featured in a You and Yours programme in July 2007; and editor received complaints about the programme, generally, and in connection with LP.

    http://meagenda.wordpress.com/2007/08/03/response-from-editor-you-and-yours-me-30-july-2007/

    Response from editor, You and Yours: ME: 30 July 2007

    August 3, 2007

    Todays edition of Radio 4s You and Yours featured a brief follow up to Mondays broadcast about ME an item which had been billed as ME latest knowledge and itself, a follow up to the programme Leo, Rusty and ME [Friday, 27 July]. The production team had received a large response to Mondays programme with complaints that too much time had been given over to Lightning Process. A couple of emails were read out one claiming Lightning Process as a cure, another critical of therapies, the basis for which no underlying science could be provided. A return to the subject of ME (no details given) is being planned by You and Yours for the Autumn.

    Following the Your and Yours broadcast on Monday, I raised the following points by telephone and email with the production team:

    1] At the start of todays You and Yours strand on ME, presenter Peter White introduced the illness as Myalgic encephalitis (which is Phil Parkers preferred term) and not as Myalgic encephalomyelitis which is the term more commonly used and the term under which ME is indexed in WHO ICD-10: G93.3. Why did You and Yours researchers elect not to use the term Myalgic encephalomyelitis?

    2] Professor Findley referred to a pilot study into the Lightning Process but omitted to mention that he is currently undertaking a clinical study into the Lightning Process with colleague, Gerri de Vries, the LP practitioner and occupational therapist who also contributed to the programme. Professor Findley and Ms de Vries professional interest and personal involvement in this LP pilot study should have been disclosed.

    3] This follow up item to Fridays broadcast Leo, Rusty and ME was listed as ME latest knowledge. Why was no-one invited onto the programme to talk specifically about biomedical research into ME and recent UK and international developments or explore the controversy over the dearth of MRC funded biomedical research into this illness? This was disappointing coverage; rather than present a balanced overview of latest knowledge this follow up came across as little more than a promotion for NLP and Lightning Therapy with Ms de Vries even getting in a plug for Phil Parkers new book.

    The following response has been received, today, from You and Yours editor, Andrew Smith:

    I did acknowledge on todays programme that Mondays discussion was unsatisfactory. I thought we did a good job in exploring the Lightning Process which has received a fair degree of media attention in recent months and I think that focus was justified. However in dealing with the wider issues of the various treatments for the condition we palpably failed though only due to lack of airtime. We will be returning to the subject of ME in the autumn and one of our producers may contact you during the research process. I hope you will feel that you want to help.

    On your first point regarding the term we used for ME. I did ask a few minutes before transmission that we use the full title for the condition. This was inevitably hastily researched by someone who hadnt worked on researching the original item and who didnt realise the existence of more than one full term for ME. While we didnt use the more commonly used term, what we broadcast was not incorrect and I think unliklely to mislead a lay audience in any material way.

    On your second point, we are satisfied that Professor Findley is an objective authority on all aspects of ME. If you have evidence to the contrary we will investigate. As I understand it the research he is undertaking on the LP attracts no extra funding and is not an endorsement of LP but simply illustrates a curiosity about it. He works on various approaches to treating ME. Gerri de Vries was cast as an advocate of LP, we made this clear to listeners and they were in a position to judge accordingly.

    Andrew Smith
    Editor
    You and Yours
    BBC Radio 4​
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Private Eye: Critics of the Lightning Process, report on Legal News Page

    10 November 2009

    ME agenda Shortlink: http://wp.me/p5foE-2lP
     
  16. coxy

    coxy Senior Member

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    As far as Prof Findley so called trial goes, i think it was abandoned and he decided to do his own version of the lightning process costing approx 1000 for 3 days. i was offered this option and have not been back to see him since as i can't see how he can help me further if i'm not willing to do the process, the therapist that he has to help with pacing even advised me to carry on with that instead of trying the expensive therapy.!! I was told by one of his therapists that they had removed a few of the things they didn't like about phil parkers LP, but basically it was the same thing. If it was a trial would he be charging 1000!! The actual process is run by his 2 therapists together, i was offered about a year ago when they had not long started it.
     
  17. Bob

    Bob

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    That's interesting coxy... I wondered what had happened to Findley's trial, and why I hadn't heard anymore about it... i think he started it a couple of years ago, if I remember correctly.
    So maybe he discovered that it didn't work very well for a majority of the patients, but that it was a huge money spinner so instead of knocking it, he copied it!?
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  19. sproggle

    sproggle Jan

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    Great site! If there was one about Mickel Therapy I would definitely post my completely negative experience about it. He has promotional videos on youtube but has annoyingly disabled any comments!! I wonder why?! :rolleyes:

    Think I'll post this link about a bit so people know there's a place to share their negative LP experiences. It's soo frustrating being up against a company with powerful PR &not having ya voice heard, hopefully this page will help redress the balance a bit.
     
  20. fingers

    fingers Senior Member

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    FAQ #1, Answer #2
    Q. Why is it called the Lightning Process?
    A. So that YOU can be blamed for not following it.
     

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