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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. Wildcat

    Wildcat Senior Member

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    Bob wrote:
    "when you seemed to suggest that he shouldn't be entitled to an award."


    I never suggested or implied that Ed Stafford should not be entitled to an award. i said taht the MEA were encouraging their members and other ME sufferers to vote for Ed in the National geographic "Adventurer of the Year" poll. But that members may not want to in view of the fact that Ed endorses Phil Parkers coaching business, and that Phil uses Eds statements about him and his coaching on Parkers website front page for Parker's 'P4' Peak Performance coaching course for high achievers.

    Thats quite different from saying that Ed should not be entitled to an award. I have never suggested taht he should not be entitled to the award.


    I think that you have not taken on board the points that I have raised. As you said that you knew nothing about this subject other than what s posted here, please take some time to read through the links and evidence posted.
     
  2. Wildcat

    Wildcat Senior Member

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    I am not responsible for what others post here, whether or not I agree with what they have written.
     
  3. Bob

    Bob

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    No, that's not what you said in the post that I referred to... That particular post gave me the perception that you didn't think that he deserved the award. You didn't flesh out the point you were making, so it was easy to misinterpret your meaning, which I clearly did.

    OK... I understand that now.

    I have been following this thread, since it was started, and I know about the subject of LP...
    I just wasn't aware of the issues surrounding Ed apart from what I've read in this thread.

    I hear what you have said Wildcat, but that doesn't mean that I automatically agree with you...
    Likewise, I don't think that you have been addressing the concerns that I have raised.
    You've ignored my most pressing concerns.
    So shall we just leave the discussion there?

    Agreed. The other person's post just reinforced my perception of your posts. That was a mistake on my part.
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Other than the joint press release and position statement on the SMILE pilot study, the ME Association has said little publicly about LP since 2007.

    I know that Neil Riley, Chair of Trustees, is very strongly opposed to the use of LP in ME patients and I think it has already been mentioned that he authored an account, some years ago, published in ME Essentials, of having attended a "death by PowerPoint" presentation on LP.

    In the LP background post on my ME agenda site, in June, I had included a link for a statement issued by the MEA in 2007.

    The MEA has since migrated to WordPress software as the platform for their site and the links to old posts were not mapped across to the new site. As a result, most of the links on my ME agenda site to MEA articles and news items no longer point to those articles - so the link below does not work.

    ME Association position statement on Lightning Process, February 2007

    http://www.meassociation.org.uk/?op...he-lightning-process&catid=30:news&Itemid=161

    I haven't found a copy of the entire statement in my files yet, but it had included the following:

    "The Lightning Process is a new and very speculative form of treatment that has not been assessed in a proper clinical trial. So while we are providing information about it, it is not a form of treatment that we are able to endorse. We recommend caution when considering this approach."


    The MEA did not issue a position statement opposing the Bristol/Bath SMILE pilot study until 5 months after the Bristol/Bath media release was issued on 2 March.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    There is already a copy, posted by me, in this thread at Post # 246:

    http://forums.aboutmecfs.org/showth...dy-on-Children&p=101313&viewfull=1#post101313

    Here it is again:

    This position statement was issued by the MEA in early 2007:


    MEA's position on the Lightning Process

    Tuesday, 06 February 2007

    Dozens of people have used this site's search tool to find out more about the "Lightning Process", which was featured in the Daily Mail on February 6 and in other large articles this month in the regional press.

    The ME Association's position on the subject is as follows:

    Whlle we are always pleased to hear of people recovering from ME/CFS, what may work for one person may not work for another.

    The Lightning Process is a new and very speculative form of treatment that has not been assessed in a proper clinical trial. So while we are providing information about it, it is not a form of treatment that we are able to endorse. We recommend caution when considering this approach.

    We welcome feedback from anyone who has used the Lightning Process.

    As ever, The ME Association remains committed to pursuing the funding of research into the physical nature and causes of ME - believing that this is the way to discover a reliable diagnostic test and, ultimately, the real cure.

    [Ends]


    Additionally, the issue of the SMILE pilot has been discussed by the MEA BoT at all the meetings of the Board since the Bristol/Bath press release in early March. The issue of the application of LP in ME patients, in general, and in children in particular, was also discussed by Dr Shepherd at the July 09 meeting of the Countess of Mar's caucus group to the APPG on ME, Forward-ME (recorded in the minutes) where it was agreed that Mary Jane Willows (CEO AYME) would discuss concerns about LP and children with the organisers of a joint GOSH and UCL workshop for professionals working with ME and CFS children at which Phil Parker had been booked to give a presentation in November 09 (he has also presented to Barts, this November).

    So any suggestion that those charged with the running of the MEA and for formulating MEA policy might be ingnues as far as LP is concerned cannot be supported.


    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

    [...]

    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.
     
  6. Wildcat

    Wildcat Senior Member

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    You have sucessfully worn me out Bob.

    But the matter of Ed's public endorsement of Phil Parkers coaching business and Phil Parkers use of Eds statements on his NLP Coaching Company site, and its incogruence in the face of the fact that Ed raised money for biomedcial resarch into ME from his Amazon walk, and all the other issues I have raised on this forum about those issues, have not gone away.

    Do you think that Ed Stafford really needs you to defend him from non existent "attacks" quite so diligently?

    .
     
  7. Bob

    Bob

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    Thanks Suzy,
    It seems that the MEA could do with a review of their position on LP.
    There is no suggestion in that statement that they are aware of the serious concerns of ME patients regarding LP.
     
  8. Bob

    Bob

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    That's heartening to know.
     
  9. Bob

    Bob

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    Apologies for that... But you have been a pretty formidable discussion partner... I think we both might need a rest!

    I'm happy to agree to disagree on the way we approach the subject.

    Well, I was happy to drop the discussion after my third post, but it seems that neither of us could let it go. I was not so much defending Ed personally, I was just expressing my views on what is fair and unfair.

    At least we have established the MEA's position on LP, which is helpful, thanks to Suzy.
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Additionally, the issue of the SMILE pilot has been discussed by the MEA BoT at every the meeting of the Board since the Bristol/Bath press release in early March. The issue of the application of LP in ME patients, in general, and in children in particular, was also discussed by Dr Shepherd at the July 09 meeting of the Countess of Mar's caucus group to the APPG on ME, Forward-ME (recorded in the minutes) where it was agreed that Mary Jane Willows (CEO AYME) would discuss concerns about LP and children with the organisers of a joint GOSH and UCL workshop for professionals working with ME and CFS children at which Phil Parker had been booked to give a presentation in November 09 (he has also presented to Barts, this November).


    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


    [...]

    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.



    So any suggestion that those charged with the running of the MEA and for formulating MEA policy might be ingnues as far as LP is concerned cannot be supported. Also, just about all the research and correspondence I hold on the LP and the LP pilot study has been made available to Mr Riley, including links to personal accounts of undergoing the "process".
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Indeed, Bob, but that statement dates from nearly four years ago.

    You were asking a few days ago for suggestions for what action you might take.

    Here is a suggestion.

    Could you consider writing to the Board, c/o Neil Riley (I can provide you with an email address) and requesting a general position statement on the Lightning Process?

    Suzy
     
  12. Wildcat

    Wildcat Senior Member

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    Bob wrote:
    "Well, I was happy to drop the discussion after my third post, but it seems that neither of us could let it go."


    The matter of Ed's public endorsement of Phil Parkers coaching business and Phil Parkers use of Eds statements on his NLP Coaching Company site, and its incogruence in the face of the fact that Ed raised money for biomedical resarch into ME from his Amazon walk, has not gone away. That is the subject I posted on. Your posts were criticism of mine.

    That Phil Parker has gained such media coverage and business success with Lightning is in no small part due to celebrity endorsements.
     
  13. Bob

    Bob

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    Yes Suzy, thanks, I'd be happy to do that. It's a good idea.
    I'll PM you for the contact details when I need them.
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    If the MEA is prepared to issue a general position statement on LP, that would be useful. I have not asked them for a general position statement because since March my focus with respect to the national patient groups has been to keep them informed around the Bristol/Bath pilot study and to obtain position statements from all of them specifically on the Bristol/Bath pilot.

    Yes, please do contact me for the Chair's email address, when you are ready.

    Suzy
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    BMJ Rapid Response published on 14 September

    On 14 July, this year, I had submitted a Rapid Response to the BMJ.

    This was in response to a letter published on 8 March by a Dr Munglani, Consultant in Pain Medicine, West Suffolk Hospital, in which he had recommended the Lightning Process and given a link to the Lightning Process site in the references at the end of his own Rapid Response to an article about pain management.

    My letter failed to appear on the site and I assumed it had been rejected for some reason by the RR letters editor.

    However, I have just discovered, this evening, while Googling for something else, that my letter was in fact published on the site on 14 September.

    BMJ Rapid Responses usually appear within two or three days following submission. Why this letter of mine has been held back over two months isn't known. I shall be writing to the letters editor to ask why this letter has taken so long to be published.

    At some point in July/August the testimonials by Dr Munglani to which I had referred in my RR were taken down from the website of the Rowan Centre. At some point after July, the Rowan Centre ceased offering the Lightning Process and using the LP logo and now offer their own flavour of the "Process", known as the "BodyMind Programme":

    See here for their rationale: http://www.simpsonandfawdry.com/about-simpson-and-fawdry.htm


    Article:

    Views & Reviews: From the Frontline: Bad medicine: pain
    Des Spence

    BMJ 340:doi:10.1136/bmj.b5683 (Published 6 January 2010)

    http://www.bmj.com/content/340/bmj.b5683.extract


    BMJ Rapid Responses

    Published 14 September 2010

    http://www.bmj.com/content/340/bmj.b5683.extract/reply#bmj_el_238859

    Re: Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine

    Suzy Chapman, Carer
    Dorset XXXXXXX

    In his response "Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine", Dr Munglani, Consultant in Pain Medicine, West Suffolk Hospital, recommends the Lightning Process [1].

    The Lightning Process is a three-day course said to be based on neuro-linguistic programming (NLP) and life coaching. It is marketed not as a therapy or a treatment but as a "training program". It is unregulated and its practitioners are trained and "licensed" by the Phil Parker organisation. Many of those who train to become Lightning Process instructors are former "trainees", themselves.

    I note that Dr Munglani has a provided a number of personal testimonials for the pages of the website of a Suffolk Lightning Process Centre [2].

    The website states that there are now NHS and private consultants, GPs and occupational therapists referring patients to the centre, and that NHS clinicians have attended as observers of the work carried out there. Visitors to the site are encouraged to contact an OT at the James Paget University Hospital pain clinic or OTs at the Norfolk and Suffolk ME/CFS service, for which contact details are given.

    On one of its web pages is the following:

    "What does the Lightning Process work for?

    "People using the Lightning Process have recovered from, or experienced significant improvement with the following issues and conditions

    "ME, chronic fatigue syndrome, PVFS, adrenal fatigue, acute and chronic pain, back pain, fibromyalgia, rheumatoid arthritis, migraine, injury, PMT, perimenopausal symptoms and menopause, clinical depression, bipolar disorder, anxiety and panic attacks, OCD and PTSD, low self- esteem, confidence issues, hay fever, asthma and allergies, candida, interstitial cystitis, urinary infections, bladder and bowel problems, IBS, coeliac disease, crohns disease, food intolerances and allergies, blood pressure, cardiac arrhythmia, type 2 diabetes, restless leg syndrome, hyper/hypo thyroidism, insomnia and sleep disorders, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, weight and food issues, anorexia and eating disorders, multiple sclerosis, cerebral palsy, parkinsonian tremor, motor neurone disease"

    On 16 June, the Advertising Standards Authority (ASA) published an adjudication against a Bournemouth company following its upholding of a complaint about a Lightning Process advertisement [3].

    The ASA records their concerns that "the company did not hold robust evidence to support their claims that the lightning process was an effective treatment for CFS or ME. We therefore reminded them of their obligations under the CAP Code to hold appropriate evidence to substantiate claims prior to publication. Because we had not seen any evidence to demonstrate the efficacy of the lightning process for treating the advertised conditions, we concluded that the claims had not been proven and were therefore misleading."

    The company was advised to ensure "they held substantiation before making similar efficacy claims for the lightning process".

    The Advertising Standards Authority's remit does not extend to website content. But I hope that Dr Munglani, who provides personal testimonials for the Suffolk centre, has satisfied himself that this centre is able to provide robust evidence to substantiate its claims that people using the Lightning Process, said to be based on neuro-linguistic programming (NLP) and life coaching, have "recovered from, or experienced significant improvement" from diseases and conditions which, in addition to ME and chronic fatigue syndrome, include urinary infections, coeliac disease, crohns disease, blood pressure, cardiac arrhythmia, type 2 diabetes, hyper/hypo thyroidism, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, multiple sclerosis, cerebral palsy, parkinsonian tremor and motor neurone disease.

    This is a very topical issue because in March, the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, also known as the Min, and the University of Bristol announced a pilot study looking into interventions and treatment options for Chronic Fatigue Syndrome [4].

    Funding of 164,000 from the Linbury Trust and the Ashden Trust has been awarded to a research team led by Dr Esther Crawley, Consultant Paediatrician, Royal National Hospital for Rheumatic Diseases, Bath, CFS Clinical Lead for Bath NHS FT and a Senior Lecturer, University of Bristol.

    The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing the Lightning Process and specialist medical care. The study has the involvement of Phil Parker and colleagues.

    "The study will involve in depth interviews with the patients and their parents, and the primary outcome measure will be school attendance after six-months. It is hoped that over 90 children aged between eight and 18 and their families will be involved in the study. They will be recruited after assessment by the specialist team at the Min."

    The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups. The document "MRC Medical Research Involving Children" is clear:

    "4.1 Does the research need to be carried out with children? Research involving children should only be carried out if it cannot feasibly be carried out on adults." [5]

    No rigorous RCTs into the application of the Lightning Process in adults with CFS and ME have been undertaken.

    Data from two large patient surveys carried out by Action for M.E./AYME (published 2008) and by the ME Association (published May 2010) show similar levels of worsening of symptoms in CFS and ME patients following the three day "training program", or of no improvement at all (AfME/AYME: Worse:16%, No change: 31%; MEA: Slightly worse 7.9%; Much worse 12.9%: No change: 34.7%) [6].

    With no robust data from the application of Lightning Process in adults, how can the research team determine that overall the likely benefits of the research outweigh any risks to child participants and that undergoing the training program would not be detrimental to a child's current health status and psychological well-being, as a patient diagnosed with CFS or ME?

    There are considerable concerns that an NHS paediatric CFS unit should be planning 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".

    Not only is it feasible to carry out research into the application of the Lightning Process using adults with ME and CFS, many feel it unethical not to do so first.

    References

    [1] Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine: Rajesh Munglani, 8 March 2010: http://www.bmj.com/cgi/eletters/340/jan06_2/b5683#232414

    [2] The Rowan Centre, Suffolk: http://www.simpsonandfawdry.com/about-simpson-and-fawdry.htm

    [3] Advertising Standards Authority Adjudication, 16 June 2010: http://www.asa.org.uk/Complaints-an...ions/2010/6/Withinspiration/TF_ADJ_48612.aspx

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

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

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

    Patient Survey May 2010, ME Association: http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf

    Competing interests: None declared
     
  16. Dolphin

    Dolphin Senior Member

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    I'm not sure what "gatewayed" means I'm afraid. AfME actually wrote a letter of support of the PACE Trial back in 2001 which was used to try to help it get approval for funding. Although that was in the Chris Clark era and I think they have improved a bit anyway since then. AYME seem to me to be the "worst" now.

    The MEA came out with a statement around 2004 against the PACE Trial. I haven't seen any evidence that I recall that they have changed their position. And they have the statement against the SMILE program.
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  18. Dolphin

    Dolphin Senior Member

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    Thanks.

    To me, this is still a treatment claim/is a problematic statement:
    Also below it it says:
    which means it is saying it is effective for the first group of conditions as well.
     
  19. urbantravels

    urbantravels disjecta membra

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    The sign of a true snake oil is that it claims to cure everything.
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Extract from

    Chutzpah hes got it in spades! (Lightning Process and scientific research)

    22 September 2010

    Shortlink: http://wp.me/p5foE-38M


    [...]


    and if the Lightning Process doesnt scientifically fix CFS and ME, well theres plenty more it can sort, according to the sites of some Lightning Process practitioners:


    What does it work for?

    People using the Lightning Process have also recovered from, or experienced significant improvement with the following conditions: -

    Fibromyalgia
    Chronic Fatigue Syndrome
    Post Viral Fatigue
    Asthma
    Rheumatoid Arthritis
    Hayfever
    Depression
    Dyspraxia
    Bipolar Disorder
    Ocd
    Anxiety And Panic Attacks
    Insomnia
    Cerebral Palsy
    Low Self Esteem
    Parkinsons Tremors
    Motor Neurone Disease
    Hyper And Hypo Thyroidism
    Chronic Aches And Pains
    Ibs
    Lyme Disease
    Anger Issues
    Food Intolerances
    Coeliac Disease
    Ptsd
    Candida
    Allergies
    Type 2 Diabetes
    Interstitial Cystitis
    Migraines
    Noise And Light Sensitivity
    And Many More

    Using the Lightning Process has proven effective for clearing ALL the debilitating physical and mind based symptoms of ME, chronic fatigue syndrome, and post viral syndrome.

    Some of the symptoms that people have cleared are listed here

    Addictions, adrenal problems, allergies and intolerances, anxiety, balance problems, bloating, blurry vision, brain fog, candida, chemical sensitivity, compulsive behaviours, concentration problems, confusion, constipation, depression, diarrhoea, dizziness, electrical pulsing sensations, excessive sleeping, exhaustion, fatigue, fear, feeling detached or disconnected, fever and chills, flu-like symptoms, frequent coughs and colds, fybromyalgia, hallucinations, head pain or pressure, heartburn, indigestion, insomnia and other sleep disturbances, irritability, irritable bowel syndrome, itching and rashes, itchy eyes, joint pain, light sensitivity, loss of vision, malaise, memory loss, migraines, muscle pain, nausea, noise sensitivity, oedema, panic attacks, painful and/or swollen glands, pins and needles, restless leg syndrome, runny nose, sensitivity to electrical fields/computers/mobiles etc, shaking, shooting pains, skin sensitivity, stomach pain, sun burn sensation, swelling, temperature control problems, thrush, thyroid problems, unrefreshing sleep, vertigo and similar sensations, vomiting, water retention, watering eyes, weakness


    Lightning Process practioner, Alastair Gibson* who is part of the research team collaborating in the Dr Esther Crawley NHS Bath/University of Bristol pilot study into the application of Lightning Process in children, due to start recruiting this month, can also provide you with relief and enhancement:

    *In June, Mr Gibson was subject to an Advertising Standards Authority ruling in relation to claims made in an advertisement about the efficacy of the Lightning Process for CFS and ME.

    Relief from:

    Addictions
    Anger management
    Childrens Anxieties
    Sadness
    Grief and Loss
    Negative Memories
    Procrastination
    Stomach Problems
    Weight Issues Allergies
    Stress
    Chronic Fatigue Syndrome
    Fears and Phobias inc:
    Public Speaking
    Spiders
    Heights
    Flying

    Relationship Issues

    Anxiety and Panic
    Compulsions and Obsessions
    Guilt
    Headaches
    Limiting Beliefs
    Pain Management
    Stuckness

    And many more..

    Enhancement of:

    Abundance
    Emotional Control
    Relationships
    Self Image
    Creativity & Productivity Concentration
    Healing
    Relaxation
    Work and School Performance
    And many more..

    Confidence
    Life Direction
    Self-Esteem
    Sports Performance

    March 2011 cant come soon enough!
     

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