1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Article: Lightning Strikes a CFS Patient

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 7, 2010.

  1. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    Thanks for all of this Orla.

    Well. What to say? There are so many alarm bells raised here, so many discrepancies in the claims. Why is this new 'movement' getting such a free ride in the media? Why are so few prepared to raise clearly legitimate concerns with some pretty wild claims being raised by LP proponents? Why are people getting money to practise this form of magical thinking programming on children?
     
  2. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Thanks Zombers!

    Angela,
    Marketing - relentless, focused marketing: you flood YouTube with endless video testimonials, you work the media, and you contract with people to ensure their silence which shuts up anyone who has a negative experience. Brilliant and, I think, highly unethical.

    And, you use old fashioned methods like pyramid schemes: the target pays for "training" following which they solicit new participants... a portion of whom solicit new participants... and so on and so on...

    And, of course, you do all this in an environment where your intended market, or should I say "mark", is vulnerable and desperate and denied protection by both the health care system and the legal system.

    Scary stuff.
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
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    UK
    This is North Devon Letters

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

    Lightning process for ME didn't work for me

    Thursday, January 15, 2009, 07:00
    Comment on this story

    FURTHER to the letter from Dr John Greensmith (January 8, 2008), I would
    like to recount my somewhat less-than-miraculous experience of doing the
    lightning process.

    I attended the three-day seminar at Hallsannery, Bideford, in May last year
    and spent five hours a day listening and concentrating intently with an open
    mind and religiously putting into practice all that I had been taught.

    At the conclusion of the seminar my ME symptoms were neither miraculously
    cured nor inherently worse - just the same.

    As part of the process I received a phone call two weeks later to check on
    my progress since the seminar.

    I told my instructor that, despite practising the process regularly, my
    symptoms had remained the same.

    He then said that I had obviously not followed the process properly,
    otherwise it would have worked.

    There was a dogged refusal to accept that it might be possible for the
    lightning process not to work even if practised religiously.

    I pointed out that to have an unbiased study you have to accommodate both
    sides i.e. those it has worked for and those it has not, but he then said
    that those it had not worked for were usually reluctant to come forward.

    This struck me as odd so I said that I would willingly publicise that it had
    not worked for me but he told me that if I did that he would simply tell
    people that I hadn't done what I had been asked to do.

    He concluded by saying that "we're not really interested in those it hasn't
    worked for anyway".

    Furthermore, he made claims to me that the lightning process was able to
    cure conditions such as cancer if practised properly.

    I feel that people should be aware that the 96% success rate that they claim
    is only their alleged personal figure and not the national statistic; indeed
    the jury is still out on the national success rate, there are no official
    figures as yet.

    What I find disturbing about the lightning process is that not only does it
    extract large sums of money from vulnerable and often desperate people, but
    the instructors' attempt to silence anybody who has not found the process
    beneficial.

    C PUDDIFOOT,
    Bideford.


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

    One comment in response to this disturbing account suggested contacting Trading Standards and national patient organisations.

    To date, none of the main UK national patient groups have issued position statements in response to the 2 March media release that Dr Esther Crawley has been awarded:

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

    "The team will carry out a pilot project to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process and specialist medical care. This will be the first study of its kind in this area, and the team hopes to establish a basis for a larger scale multicentre research project."



    Dr Crawley is a Medical Consultant to AYME, was a member of the NICE Development Group and is a member of the Holgate chaired MRC CFS/ME Expert panel.

    Given that Dr Charles Shepherd doesn't like to rock the boat, I would not hold your breath on the issuing of an opposition statement from the ME Association to this pilot study.

    LP is marketed as a "training programme" delivered, not by "therapists" but by LP "trainers". In order to participate in a course of LP "training" participants need to sign up to "being ready" to undertake the "training". It is reported that if the "training" fails to resolve the condition, then the participant was not "ready" to undertake the process, or failed to carry out the process properly or diligently - so failure to resolve can be attributed to the failings of the participant - not the process, itself, or the way in which the process or "training" was delivered by the "trainer".

    So, this pilot of Dr Crawley's is looking at the feasibility of recruiting for a study applying LP to children aged 8 to 18.

    I'll repeat that

    8 to 18.


    How are children considered capable of giving informed consent to a study which may involve them having to sign up to being "ready" to undertake the "training programme"?

    Will their parents be expected to sign up to their children being "ready"?

    This is a truly shocking business.

    Again - children aged 8 to 18.
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    UK
    The March 2007 edition of Action for M.E.'s magazine InterAction published this article (apologies for the short line measure - it's converted from a PDF of the article page):

    InterAction 59 March 2007

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

    The Lightning Process (LP) has attracted national press coverage but alongside the hype
    and talk of miraculous recovery, InterAction received reports of relapse and failure, and
    decided to find out more.


    Feature
    Page 32 InterAction 59 March 2007

    After receiving a letter from a person
    with M.E. who had tried LP, felt better
    for several weeks then relapsed (see
    InterAction 57, p 43), we asked any
    other readers who had tried LP to share
    their experiences with us. Twenty-two
    people responded, several at length.
    Eight said predominantly positive things
    about the process (usually citing
    recovery), eight gave mostly negative
    reports (describing relapse or a bad
    experience), three were more mixed
    and four wanted to discuss similarities
    with, differences to, or their experiences
    of, other approaches.

    Of those who had undertaken the
    program, most had done so in 2006,
    under the instruction of different
    practitioners across the country.

    What is LP?

    The website describes LP as a training
    program (not a therapy) that combines
    concepts from Neuro Linguistic
    Programming (NLP), hypnotherapy and
    life coaching.

    It claims to help with a range of
    conditions from fear of failure to
    depression, addiction, procrastination
    and stage fright. According to the
    website its also effective for
    enhancing happiness, business success,
    peak performance issues, relationships
    and more.

    The main aim of the process is to
    teach you how to regain the control in
    your life, and so give you the
    opportunity to break the spiral of
    illness, M.E., anxiety & stress,
    overwhelmedness, stuckness or low self
    esteem, or any other destructive
    patterns you have.

    To achieve this the key steps are:
    recognising the patterns which cause
    the destructive feelings in your life;
    creating an effective way of stopping
    these patterns; creating more useful
    alternative patterns of thinking and
    action.

    How exactly it works is one of the
    most commonly asked questions, says
    the website, but its the most difficult
    to answer, not because its a secret, but
    because it takes two hours to explain
    how it works thats whats covered in
    the first session. However people who
    have undergone the process told
    InterAction that the technique is very
    simple.

    Melanie* told us: It basically consists
    of telling yourself Stop! every time you
    feel any symptoms and essentially
    telling yourself that you are okay or
    more than okay Simply doing the
    things you want to do, or would do if
    you were healthy.

    Jillian* said the LP coach had several
    diagrams which showed how the
    constant negative thoughts were meant
    to be making me so anxious or
    depressing my immune system so
    that my body couldnt recover.
    She then asked me how much of
    the time I felt I was happy with my life.

    When I said about 60-70% she seemed
    taken aback. Im a fairly grounded
    person and have learnt to enjoy the
    things I can do and not to focus on the
    negative! She then asked me to redo
    my score to reflect on how much I felt I
    could do compared with what I would
    like to be able to do if I was healthy. A
    bit like the M.E. ability scale. I found
    this difficult and upsetting.

    Once this was established she laid
    out three mats on the floor and got me
    to repeat certain phrases and step
    between them. I practiced doing this
    with her and we used examples of
    negative thoughts which I should try
    and stop as soon as they started. It
    seemed very simple. She went over the
    phrases quite a few times and got me
    to gesture with my arms to show my
    body I was stopping my negative
    thoughts.

    Carly*, who underwent LP in
    February 2006, told us: The Lightning
    Process is all about changing your
    thought patterns in order to reduce the
    adrenaline in your body and thus
    improve your immune system. At first I
    found it very difficult to change my
    thought patterns so I had to work
    very hard at the process. (The coach)
    doesnt cure you, s/he simply tells you
    what you need to do. It is you that has
    to do all the hard work.

    Does it work?

    Acceptance by most LP trainers depends
    upon you signing an application
    agreement which says that you
    understand that LP does not guarantee
    any results and that you accept full
    responsibility for the effects of applying
    or not applying the program.

    Some people report significant
    improvements. Before LP, Terry* had
    had M.E. for 12 years and was
    functioning at less than 40%
    effectiveness and having frequent threeweek
    periods of total bed rest. Then a
    chance remark alerted him to the
    Lightning Process. I followed this up
    and I have now recovered. I am not
    only doing things I have not done at all,
    or so frequently for years, I am enjoying
    food as I want and in what
    combinations I want.

    A former Management Trainer, Terry
    totally embraced one of the key
    propositions in the training, that it
    wouldnt work unless he was fully
    committed to it and worked hard at it
    continually, to make it automatic and
    part of his reflex actions. As the seminar
    progressed he became more and more
    convinced of the effectiveness of the
    training process. Now he says: I know
    my immune system has reverted to
    normal; it feels like new blood coursing
    through my veins.

    Rachel* had a different experience: I
    have had ME for over 30 years in a
    relapse/remission pattern. Before the
    course she was operating at her usual
    70%-ish. She says: After (the course)

    I applied the process as needed. Got
    some strange looks when I did it in the
    middle of a supermarket or a street but
    I didnt mind that. After about six or
    seven weeks I was about the same.

    (The coach) tried a process over the
    phone designed to unplug the brakes
    but it didnt help. Since then I have
    been coming to terms with being as I
    was before.

    Gina* had a more positive
    experience. After the first session of
    LP, my mindset was transformed.
    Having arrived in a wheelchair, I was
    able to walk back to the car park. After
    seven weeks, I am able to drive, see
    friends, walk normally and no longer
    feel fatigue, only normal tiredness. I still
    use the process when necessary and
    apart from being unfit due to being
    virtually housebound for three years, I
    feel fine.

    Pennys* experience was different: I
    have had M.E. since 1991 and multiple
    chemical sensitivities quite severely since
    1998. She took part in a three day
    group course. The course was
    extremely enjoyable and I was carried
    along on a wave of positivity, fully
    believing that this was going to work
    for me. I came home convinced that I
    was getting better and applied the
    process rigorously. However, light
    housework, short walks and sedentary
    hobbies were still the only things I could
    manage.

    Reporting back on my second
    follow-up phone call I was told that I
    was stuck in neutral and that I must list
    things that I was passionate about and
    do these things in order to stimulate
    the endorphins. I began challenging my
    chemical sensitivities, applying the
    positive approach and arranged a five
    day caravan holiday in Essex. I was
    confident.

    On the way back we had a puncture
    on the M1 and I stood on the hard
    shoulder for over an hour breathing in
    motorway fumes on a hot day. There
    was no escape. My respiratory problems
    have been horrendous ever since due
    entirely to the pollution exposure. I
    would never have put myself in such a
    challenging position prior to the
    process.

    Penny concluded: I think that one
    should approach this treatment with
    caution and not be carried away by
    those for whom it has been beneficial.

    It would be interesting to find out how
    many people were truly 100% fit 12
    months after LP. I know of no support
    groups for those who fall by the
    wayside.

    Linda* thinks differently: The
    Lightning Process changed my life
    within days and every day I am still
    improving as I get fitter. I am now
    swimming, riding again, walking,
    dancing, entertaining and I have had
    the time of my life. I feel better for the
    first time since I was 18. If it folded
    round me now (and I dont believe for a
    minute it will) I have had five months
    completely clear and I truly believe I
    have the rest of my life ahead of me.

    Euphoria and disappointment

    Melanie* told us: I went through the
    Lightning Process in the summer of
    2004 and had a couple of follow-up
    sessions a couple of months later. I was
    convinced it would be the answer to
    my prayers.

    I was euphoric after the process. I
    managed a couple of weeks, during
    which I practised the positive process
    all the time and tried out walking a lot
    more than usual. At the end of that
    time, I hit a wall and felt totally
    depleted.

    After a couple of months she went
    back. Her coach said she wasnt
    practising the process rigidly enough,
    and that it would not work if she
    doubted it. She felt euphoria again
    after the sessions.

    On the positive side, I believe it
    helped me to feel more optimistic and
    to focus on the positive. Conversely,
    there was a period of disappointment
    when it didnt turn out as promised and
    I was, in the nicest possible way, led to
    believe that my dedication was the
    problem, she explained.

    Belle* suffered a relapse after
    participating in the program. First I
    was on a real high, but over the weeks I
    increasingly struggled to achieve
    consistent results with the technique I
    was saying stop to the signals of my
    intuition and getting sicker and sicker.
    Realising this, I then had to start a long
    and painful process of forgiving myself
    for failing.

    Judith*, who has benefited from LP,
    says: The few people for whom it
    hasnt made such a notable difference
    need to persevere and get people to
    help them pinpoint the barrier that is
    preventing it from working. From
    experience of helping a friend, once the
    preventing factor is recognised the
    Lightning Process has dramatic results.
    Unfortunately, neither Rachel nor her
    fellow classmate Stella* were able to
    overcome their relapse, despite the best
    attempts of their trained LP practitioner.

    Doing M.E.

    Stan* found LP helpful in terms of
    learning not to dwell on negative
    thoughts, but (it) hasnt alleviated the
    main symptoms of my M.E. He says
    that, Essentially LP assumes that
    people with the condition are doing
    ME.

    Phil Parker, the founder of LP, has said
    that he sees M.E. as a physical illness,
    regarding M.E, CFS, PVS and
    fibromyalgia as the same type of
    condition. Jillian* saw a different LP
    coach. She has chemical sensitivity and
    had been confined to her house for
    most of the last two years prior to
    undertaking LP, as her room is up two
    flights of stairs and she could only
    manage to go down one flight.

    I arranged with (the coach) an
    environment in which I believed I would
    be able to cope with the course, she
    told InterAction. When we arrived I
    found four steps to the front door plus
    a large flight of stairs and the ground
    floor had just been sprayed with air
    freshener.

    Jillian was tired with a headache,
    severe muscle pain and brain fog after
    the session and lay awake most of the
    night trying to use the process to not
    notice the pain. Next day, in less pain
    but still unable to focus, she set off for
    the second session. I told Mum I felt I
    couldnt have grasped what I was
    meant to do properly, that I had either
    misunderstood what I had to do or
    failed to pick something up. I couldnt
    understand quite why I was so much
    worse as well when I should have been
    feeling much better if other people who
    had done it were anything to go by.
    Her mum was not allowed into the
    session with her. This surprised Jillian as
    shed made it clear on the phone that
    this was what she needed and wanted.
    The coach wanted to go over the
    homework.

    I hadnt written it down because by
    the time Id got home Id been too ill,
    explained Jillian. I tried to explain but
    she didnt want me to be negative so
    wouldnt let me. I had to say how it
    had had a positive effect. I had used it
    all the way home the previous day and
    that evening and through the night and
    that morning.

    She said pain is a good thing she
    enjoyed going to the gym and needed
    to hurt afterwards. I felt this was all
    valid but irrelevant. I tried to explain it
    was completely different and explain
    the previous evening. I tried to describe
    it and didnt get very far. I burst into
    tears because she wasnt paying any
    attention. Jillian said she was very
    distressed by the coachs approach
    throughout the session.

    Every time I started to cry I had to
    do the mat thing over again. She told
    me it wasnt any good her being
    sympathetic. It wasnt going to help
    me. She said it was good that it was
    happening and would reinforce
    something good pathways and stop
    negative thoughts. By that point I
    considered walking out but decided to
    stick it out to the end and not later
    blame myself for having given up on
    it.

    Leap of faith

    Ann* was put off LP by the attitude of
    a practitioner: I spoke to a local
    woman who teaches it in order to find
    out more. She was rather cagey when I
    started asking her questions, and said,
    It isnt for me to justify the Lightning
    Process. You need to read the website,
    see if you think youre ready, and then
    its your job to convince me that this is
    for you. Its about you taking that leap
    of faith.

    Michelle* didnt like what she called
    the cloak & dagger approach. Not
    being able to find out beforehand what
    the process entails, or to be able to
    read about the science and theories
    behind it, she explained. They will
    not tell you what actually happens in
    the sessions and the cynical side of me
    wonders if thats because its just such a
    simple technique that anyone could
    start using it for themselves.

    The thing about dont talk about
    the LP to anyone else it will sabotage
    it for you and for them some of this
    makes sense to me, she added. As
    its a behavioural technique that you
    need to practise very intensively initially,
    then you could be sidelined by trying to
    explain and intellectualise about it and
    pick it apart it would lose its
    immediacy. But I dont really see why,
    once youve got the hang of it you
    cant say something about it to others
    who are interested.

    Ann was critical of the application
    process. Even if a person does decide
    to go for LP, you have to fill in a
    detailed questionnaire first, and they
    then select you based on whether they
    think you are suitable. This goes some
    way to explaining their apparent high
    success rate, because they are handpicking
    those they cure.

    Penny had heard of a number of
    people being turned down for the
    program at first, who were later
    accepted. Michelle was one of those
    who was initially refused a place: In
    terms of being ready, I was initially
    turned down, despite having done a lot
    of reading about it on the websites and
    deciding that it made a lot of sense in
    fact I read about Reverse Therapy and
    Mickel Therapy, and chose LP over both
    of these as it seemed more appropriate
    for me. Yet, perhaps because I asked
    some questions about research, and
    why it doesnt work for some people, I
    was told I was not chomping at the bit
    enough. I was then given the phone
    number of someone who had recovered
    to have a chat, and then accepted on
    my second attempt.

    And afterwards? Basically no instant
    miracles, but some significant
    improvements, she reports.

    Who might benefit fromLP?

    InterAction put the question to LPs
    founder Phil Parker. I believe LP has
    the potential to help everyone with
    M.E. but Id like to qualify that
    statement as it seems at first reading an
    unlikely claim, he told us. Firstly its
    important that LP is recognised for
    what it is, as training rather than a
    therapy. This means that your question
    needs to be divided up into its
    component parts. The first question is:
    Do you believe everyone has the
    potential to learn the Lightning
    Process? and in the same way you
    could ask Do you believe everyone has
    the potential to learn French? then my
    answer would be yes.

    The second set of questions would
    be: But would everyone choose to
    learn French, would everyone think they
    could learn French, would everyone love
    to learn French, would everyone do
    their homework and practice hard,
    would everyone whos learnt French
    keep it up? These are very different
    questions and the answer to these are
    of course, no, not everyone. LP is a
    training program that teaches people
    how to create success in their health,
    their lives and their work and for
    those who are prepared to work hard
    and apply it as it is designed to be
    applied the results are consistently
    good. But like any training program, it
    will only produce reliable results if those
    guidelines are adhered to.

    If people choose to apply it
    intermittently, in a different way to the
    way theyve been taught or not apply it
    all, then the results will naturally be
    unpredictable. Independent of how
    many times this is reiterated in our web
    site, pre-training assessment phone
    calls, seminars and follow up sessions,
    there will always be a handful of people
    who choose not to follow the
    suggested approach, and will therefore
    get unpredictable results.

    One of the key purposes of our
    application procedure is to help people
    to decide if and to assess whether they
    are ready or not to undergo training at
    this point in time. We are as keen as
    anyone to make sure trainees only
    come to training when we feel they are
    ready and prepared to do the work
    needed to get results.

    How much does it cost?


    The London program costs 560. This
    buys three sessions, totalling 5-7 hours,
    over three consecutive days (90 per
    hour if you are bedbound needing oneto-
    one sessions). Accommodation is not
    included. The first two sessions last 2-3
    hours and take place in a small group
    setting, usually 3-5 people. On the
    third day you get 1 hour one-to-one
    with your trainer. The fee is payable by
    cash or cheque on application. Your
    cheque will not be cashed unless you
    are accepted but payment is nonrefundable
    in the event of cancellation
    on your part. The website suggests
    applicants should budget another 50-
    100 for follow-up coaching support.

    What do medics think?

    Dr Neil Abbot, ME Research UK, said:
    Many putative therapies for M.E./CFS
    have come and gone over the years
    each with its advocates and successes in
    the short term so the real test of (LP)
    will come with time, and from its
    published objective success rates.
    M.E./CFS is a diagnosis of exclusion
    with probably many different kinds of
    patients, so one therapy will not suit all.
    And are adrenaline (nor/epinephrine)
    levels raised in patients generally? Of
    three research studies which have
    measured plasma levels directly, one
    (Timmers 2002) found epinephrine
    levels significantly increased (to a
    modest level), while two (Ottenweller
    2001; Peterson 1998) found no
    difference in nor/epinephrine, so
    whether adrenaline levels are raised to
    the point where lowering them induces
    a lightening cure is a moot point.

    Dr Hazel ODowd, Consultant
    Clinical Psychologist and Clinical
    Champion for CFS/M.E. services in
    Avon, Gloucestershire, Somerset and
    Wiltshire, said: My personal view is
    that CFS/M.E. is multi-factorial and that
    for a small minority, anxiety or
    overproduction of adrenalin will be a
    significant problem and therefore
    helped by this process or in fact any
    therapy that helps with anxiety based
    problems (and some are much cheaper!
    and available through the NHS).

    What concerns me is that they do
    not select on the basis of how
    problematic adrenalin-driven
    symptomotology is (ie. how much of a
    problem anxiety and its correlates are)
    but on how committed and motivated
    people are, which I do think is insulting.
    No-one wants to be ill.

    Professor L J Findley, Essex
    Neurosciences Unit, is undertaking a
    clinical study into the process. He says:
    The theory of the Lightning Process
    would, at first sight, seem reasonable
    but as yet we do not know. What we
    know thus far is that some people
    benefit and improve but it is also
    known, by anecdotal report, that some
    people do not improve and some have
    claimed relapse following the process.
    A great deal of basic work is
    required in order to ascertain which
    patients are likely to respond to LP,
    those who could be harmed or made
    worse by the treatment, at what point
    in the illness it might be appropriate to
    use the process and the duration of
    effects as they have never been
    measured.

    Until there is more knowledge and
    proper guidelines can be developed,
    individuals practicing in this form of
    training/therapy should keep carefully
    logged follow-ups of all patients
    treated. I also think it would be wise if
    all patients were referred through a
    medical specialist in M.E./CFS.

    Over recent months, Gerri de Vries,
    an LP practitioner and occupational
    therapist with huge experience in
    fatigue syndromes, and I have been
    assessing individuals and offering
    treatment to those we consider likely to
    benefit from the process. Each patient
    has been properly assessed in advance
    and is being followed up by a therapist
    and physician. This is an open clinical
    study to try and provide data to argue
    the case for a proper clinical trial in the
    conventional sense. We hope to have
    some data to publish in the next few
    months.

    Action for M.E. policy

    Action for M.E.s policy remains
    unchanged when it comes to therapies
    which:

    claim to offer a cure
    have not been subject to research
    published in respected peer-reviewed journals
    require the payment of large sums of money

    Action for M.E.s policy is that M.E. is a
    real, physical illness and that any
    treatment, management technique or
    therapy has to recognise this to be
    effective. Interim CEO, Trish Taylor says:

    Whilst we understand peoples desire
    to try therapies in their desperation to
    get well again, we strongly advise
    people to examine any claim with
    scepticism. More research is needed
    into the effectiveness of all treatments,
    management techniques and other
    approaches. There is no one treatment
    that is beneficial to everyone.

    Over the years there have been a
    number of approaches that purport to
    offer a cure for M.E. or lead to recovery.
    Whilst there are some individuals who
    seem to make remarkable
    improvements, sadly we have always
    found that such cases are few in
    number.

    Our surveys have shown that many
    people can hope to make a substantial
    improvement to their health over time
    through a combination of pacing,
    symptom control and good diet. Many
    also report benefits from various
    complementary and nutritional
    approaches but we would always
    advise you to ask questions about the
    evidence for benefit before paying out
    large amounts of money.

    * Names have been changed to protect
    identities.

    http://www.afme.org.uk/

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

    Note, this article was published in March 2007.

    In February, 2007, I had written to Phil Parker. I had asked Mr Parker:

    -----Original Message-----
    From: Suzy Chapman
    Sent: 07 February 2007 15:27
    To: web@philparker.org
    Subject: Research

    [Ed: Quote from the LP website as it stood at January 2007]

    "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"

    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?



    Mr Parker replied that

    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.

    The diagnostic criteria used is the Fukuda one and the data set uses a range of standard tests including HADS, sf-36, VAS and so on.

    We use the shortened form of Myalgic encephalomyelitis, as you probably know there are number of different version of terminology, including Myalgic Encephalomyelitis/ Encephalopathy and myalgic encephalitis. see references below.
    Lancet. 1987 Oct 17;2(8564):918-9. Pathophysiology of myalgic encephalitis.Wakefield D, Lloyd A.

    http://columbia.thefreedictionary.com/Myalgic encephalitis
    http://www.surgerydoor.co.uk/medical_conditions/indices/M/myalgic_encephalitis.htm
    http://www.gpnotebook.co.uk/cache/-1952841719.htm

    adding:

    "I hope this helps, could you let us know why you are asking these questions?"
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  6. Dolphin

    Dolphin Senior Member

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    In Ireland, the Advertising Standards Authority has various specific rules that products can't claim to bring about recovery without it generally being accepted (i.e. within medicine).

    It's probably for the reasons you give - that desperate people would otherwise easily be parted with their money.

    Personally, I have sceptical about the need for a specific recovery section. Talking about what helped people is interesting in itself. So many people claim they're recovered from ME/CFS but aren't really.

    I find the term "recovering" in ME/CFS circles frustrating - who knows if they will get to 100% or close to it - if people get there, it might be of some interest to some people, but not before.
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi Kati,

    In the last few years, Prof Trudie Chalder, King's College London, has published papers on CBT and diabetes.

    Chalder is currently engaged with Prof Rona Moss-Morris in a study of CBT with MS patients. Diabetes PMID listings and MS saMS Trial information appended. The saMS CBT trial is being funded by a grant from the UK MS Society.


    See this page for Lighting Process and MS:

    http://www.lightningprocess.com/Default.aspx?tabid=391&language=en-US

    "New hope for People with MS

    Over the last few years we have seen a number of people who report impressive results when using the Lightning Process with other neurological conditions such as CFS, Parkinsonian type tremors, cerebral palsy and strokes. As a consequence we were asked whether the Lightning Process could be used for improvement and recovery with any other types of neurological illness, particularly Multiple Sclerosis..."

    Parker says he has had discussions with the UK MS Society with a view to "collaborative research and funding".



    If the NHS were to introduce the use of LP in children and/adults with ME and CFS, then it is possible that they might also look into the feasibility of its application in MS patients.

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

    MS saMS Trial:

    (Extracts from a Co-Cure mailing, 04.10.09)

    The Principal Investigators (PIs) for the saMS trial are Professors Rona Moss-Morris (School of Psychology, University of Southampton) and Trudie Chalder (Department of Psychological Medicine, Institute of Psychiatry, King's College London).

    Co-researchers are from the Institute of Psychiatry, King's College London and the Chronic Fatigue Unit, Maudsley Hospital, Denmark Hill, London.

    The saMS trial is funded by a grant from the UK MS Society: http://www.mssociety.org.uk/

    MS Society page listing further MS clinical/research trials:
    http://www.mssociety.org.uk/research/clinical_trials/index.html

    There are parallels with the FINE Trial (Fatigue Intervention by Nurses Evaluation) a randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome - the sister trial to the PACE Trial which is due to publish its findings, this spring.

    Dr Alison Wearden (FINE Trial PI) is cited as a member of the saMS Trial Steering Committee.

    The FINE Trial [ISRCTN74156610] was funded by the Medical Research Council (UK), grant number 200212. The FINE Trial has completed but has yet to publish results. The FINE Trial protocol is also published under Creative Commons Attribution License: http://www.biomedcentral.com/1741-7015/4/9

    Professor Chalder is also working in the area of diabetes, see PubMed: PMID: 19767547; PMID: 17967704; PMID: 19017589 (with Creed, F). See also:
    http://www.kingshealthpartners.org/khp/2008/11/21/talking-therapies-can-help-control-diabetes/

    For additional Chalder MS studies, see PubMed: PMID: 19326649; PMID: 18256342 (with Moss-Morris, R), PMID: 19167801 (with Moss-Morris, R)

    Professor Moss-Morris works in the area of MS, IBS, CFS, cancer, pain, psychosomatics and the so-called FSS and MUS.

    The protocol for the saMS Trial is being distributed under the terms of Creative Commons Attribution License.

    Abstract PubMed: http://preview.ncbi.nlm.nih.gov/pubmed/19698171

    PDF full journal text:
    http://www.biomedcentral.com/content/pdf/1471-2377-9-45.pdf

    Open Access Text:

    BMC Neurol. 2009;9:45.
    http://www.biomedcentral.com/1471-2377/9/45


    Study protocol

    Protocol for the saMS trial (supportive adjustment for multiple sclerosis): a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis

    Rona Moss-Morris1 , Laura Dennison1 , Lucy Yardley1 , Sabine Landau2 , Suzanne Roche3 , Paul McCrone4 and Trudie Chalder5

    1 School of Psychology, University of Southampton, Highfield Campus, Southampton, SO17 1BJ, UK

    2 Department of Biostatistics, Institute of Psychiatry, King's College London, De Crespigny Park, London, SE5 8AF, UK

    3 Chronic Fatigue Unit, Maudsley Hospital, Denmark Hill, London, SE5 9RS, UK

    4 Health Service and Population Research Department, Institute of Psychiatry, King's College London, De Crespigny Park, London, SE5 8AF, UK

    5 Department of Psychological Medicine, Institute of Psychiatry, King's College London, Weston Education Centre, Cutcombe Road, London, SE5 9RJ, UK

    author email corresponding author email [or contact forms refer to website]

    BMC Neurology 2009, 9:45doi:10.1186/1471-2377-9-45

    The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2377/9/45
     
  8. fingers

    fingers Senior Member

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    Great posts and information from everyone.

    For info, I have good dialogue going with one of the funding trusts, and hope to have same with the study lead.

    I will report anything interesting.

    F
     
  9. Orla

    Orla Senior Member

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    Comment from Norway, from Jan 2009

    I got permission to repost this here. It was originally posted on another list where there was a discussion about LP. This shows the problems with the hype the media can create over these "cures". Lukily, apparently, the media fenzy has died down a bit now in Norway.

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

    The media here, and the doctors, are now convinced that LP is the cure for ME. ME patients are under tremendous pressure from their families and doctors. They are refused help and benefits and advised to do the three days course to cure them. Sadly, the many people who have not recovered or have had serious relapse, are suffering terrible guilt feelings, believing that it is their own fault because they are not "doing LP" correctly. They are "taught" to say that they are cured, to ignore their symptoms, made to believe that they do not have ME and they must disassociate themselves from anything to do with ME, including not having any contact with any patient organisation.

    For some people, LP made them cope better, but they still had symptoms. However, they are telling the media that they are cured. For others, it worked for a while and then they suddenly collapsed. I have had crying ME patients on the telephone telling me how they have not recovered or have been made worse and believe that it is their own fault for not recovering. This in spite of totally believing that LP would cure them. They have tried so hard - for months, and followed all the instructions from their "trainers". They also believe that they must be the only ones who have not recovered, and therefore do not dare to tell anybody or to talk to anybody. They are simply not allowed to tell the truth.

    Ellen Vivian Piro, Secretary, Norwegian ME Association,
    Jan 2009
     
  10. willow

    willow Senior Member

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    Anecdotal but I know of someone so impressed by LP that they paid the 10 000 to become a teacher.

    However, although the fatigue type symptoms improved greatly, others were remained very serious. But this is not the message the teacher gives to the LP trainees.

    Guess if people are paying these sorts of sums to train many are hardly going to be honest with themelves about the seriousness of their condition let alone anyone else.
     
  11. Orla

    Orla Senior Member

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    Hi Willow, that is the most expensive I heard so far (I had heard 7-8000 before so the prices have gone up the - probably with every free add/"recovery story" they get published!).

    Yes, that doesn't surprise me. I think some of it is probably belief/denial and also if they have this guilt thing going on, that it is their own fault if they don't get better, that also adds to the problem, and this before one even talks about the vast sums people are parting with to do it and become trainers.

    This is an interestng comment from someone who did LP


    Suzy that article was really interesting and revealing. Contained all the classic LP lines, such as we are "stuck" in faulty ways of thinking, we can get better if we want to, LP works if you apply it correctly and it is your own fault if it doesn't work.

    Orla
     
  12. Koan

    Koan Be the change.

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    ..........
     

    Attached Files:

  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    "The tutor said that if we tell people about the process if won't work..."

    Orla, that says it all for me...

    Fairy spells, Tinkerbell, Sooty's magic Oofle dust...

    I don't see how anyone can buy into a line like that.

    I note that our UK national patient organisations are thus far publicly silent on the Crawley pilot study for children.

    It makes me so angry.

    Or should that be "I'm doing anger"?

    Suzy
     
  14. Angela Kennedy

    Angela Kennedy *****

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    Just like the UK patient organisations are 'doing' silence...
     
  15. willow

    willow Senior Member

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    I guess my figure might have been inflated by the 'refresher' and 'add on' type courses. Unfortunately I can't go back ad verify.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  17. Angela Kennedy

    Angela Kennedy *****

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    I wonder if Jane Colby is aware of this state of affairs...?
     
  18. Countrygirl

    Countrygirl Senior Member

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    In one of Jane Colby's articles in The Brief she wrote that Dr Alan Franklin (pediatrician) maintained that it is quite possible to push children well beyond their limits for a substantial period of time, until they ultimately crash severely. Will there be reassurances that this observation by a very experience pediatrician will be factored into the trial with the 8 to 18 year olds? Are they even aware of it?

    From what I have read of Jane's views on LP she considers that it can only help those who either do not have ME or who have substantially improved but have failed to extend their activity boundaries. She reports cases of children who have severely relapsed as a result of applying the training., so I find it difficult to believe that she would approve of 'the lady on the phone' encouraging callers to undertake the LP. I hope she is aware that people in her organisation are actively promoting LP.
     
  19. Orla

    Orla Senior Member

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    Thanks Willow.

    This is from a blog of someone who did LP and thought it was good. This blog is no longer active so I used archive.org to get the pages. Just a little quote to give you the idea of what people are taught: "Then we were shown a 'recipe' for ME/CFS. First, we tend to amplify how problematic an illness/problem is by filtering out anything that tells us otherwise...We start thinking about how it's not our fault we're ill, and that we can't do anything about it without some sort of outside drugs or therapy. The feeling that you don't really have any control."

    [Orla - this "explanation" of ME/CFS is very similar to the "catasrophic thinking" and misinterpretation of bodily sensations" view of the CBT school on ME/CFS. Bascally we are thinking ourselves "sick" when there is nothing organically wrong with us. In LP you are obviously not suposed to Pace, as that would involved a degree of planning based on assessing likely reactions to certain activities, including bad reactions. But in LP they are saying that we don't have an organic disease causing a bad reaction to activity, we just think we do, and it is this thinking that is causing our symptoms.

    So with LP we are supposed to stop thinking "negatively" about our possible bad reactions to activity. Basically, if we stop worrying about how we might react badly to certain activities, or the amount we do of activities, and apply the process, we will be fine and we won't have a bad reaction. Of course one argument against this is that most people will have done this at some point in their illness. This will be either in the early stages when they didn't make a link between activity and feeling bad, but the activity still caused them to crash, or when during a good patch a person with ME/CFS might think some activity is going to be fine, so just go and do it, but they end up feeling bad afterwards, even though there was no negative thinking or catastrophic worrying involved.]

     
  20. flybro

    flybro Senior Member

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    pluto
    My psoitivity and faith in self mangement techniques have put me in danger a fair few times.

    But recently it put my grand-daughter in harms way.

    This has been the last of many, many times I have used mental strength to overide physical illness.

    the first post in this thread is about that day. http://www.forums.aboutmecfs.org/sh...rents-Children-Grandchildren-Aunts-and-Uncles

    Until this happened I was simply denying the level of my disabilty.
     

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