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Article: Lightning Strikes a CFS Patient
- Thread starter Phoenix Rising Team
- Start date
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?
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?
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.
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.
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.
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.
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?"
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?"
URL for the article above:
InterAction 59 March 2007
LP: the light at the end of the tunnel or just another flash in the pan?
http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf
(AfME's site is down at the time of posting)
InterAction 59 March 2007
LP: the light at the end of the tunnel or just another flash in the pan?
http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf
(AfME's site is down at the time of posting)
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.
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
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
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
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
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
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.
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.
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
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
"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
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
Just like the UK patient organisations are 'doing' silence...
http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week
"...My mind was swung after talking to one of the lovely phone line people
at the Tymes trust (charity for children with ME/CFS). The trust obviously
do not recommend this therapy or many others , so it was purely the phone
lady who got my interest...."
"...My mind was swung after talking to one of the lovely phone line people
at the Tymes trust (charity for children with ME/CFS). The trust obviously
do not recommend this therapy or many others , so it was purely the phone
lady who got my interest...."
I wonder if Jane Colby is aware of this state of affairs...?
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.
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.]
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.]
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.
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.