Lightning Process to be Evaluated in Research Study on Children

fingers2022

fingers2022

Senior Member
Messages
427
Posting to keep posted

islandfinn said:
THat's great news fingers. Keep us posted.
Click to expand...

Hi All

So far I've spoken with ME association and RNHRD.

MEA is strongly opposed to this study - watch their space.

I spoke with the young lady who issued the media release at RHNRD and expressed my concerns:
- first, damage to their own PR and credibility through engaging with the LP organisation
- second, but foremost, risk of wrong treatment of children
- third, wrong conclusions through lack of knowledge, poor management, wrong measures, lack of rigour in selection criteria, failure to evaluate the LP and the supplier properly before engaging children et.etc.etc

She obviously could not engage in a detailed clinical discussion, through lack of knowledge, but promised to discuss my points first within the communications team, then to pass on as appropriate within the organisation. I've left my contact details and offered my input and experience as sufferer and failed student of the LP (guess I'm just not very bright :tear:)

This is just a start, I will be following up on this regularly. Please do not all pick up the phone as they will just get swamped and likely refuse to talk.

Onwards
Fingers of Endland
 
G

Gerwyn

Guest
islandfinn said:
Ciaran Farrell posted this to co-cure today

IS UK CFS Charity Action for ME involved in RCT of LP?


Action for ME and the Lightning Process

A call for clarification

By Ciaran Farrell

Phil Parker says : "The Phil Parker Lightning Process is a unique 3 day
training program designed to teach you how to find solutions to life's most
common problems".

http://www.lightningprocess.com/what-is-it.aspx


Phil Parker says that his Lighting Process can be applied equally for
business success, for increasing sales, for individuals and teams, he says
"Dont you or your team deserve to be at your best, achieve your dreams and
avoid being left behind or burning out?"

http://www.p-five.co.uk/Applications.html

http://www.p-five.co.uk/Benefits.html

Introduction

The Press Release that follows was posted on the internet list "EuroLyme"
but it is not clear where to find the document on Action for ME's Website
although the address of the PDF document that gives the details of a
Randomised Controlled Trial of the Lightning Process, (LP) is clearly that
for action for ME as it involves "www.afme.org.uk" which is the web address
of Action for ME's Website.

Lightning Process

The lightning Process is a highly controversial training in certain
techniques and methods which when used according to the teaching provided by
LP Trainers which will, it is claimed, cure ME and a whole host of other
medical conditions, although LP is not a treatment or a therapy. This is
subject to the proviso that the person undergoing training in LP really and
truly and completely committed to being cured by LP, they will be. A
document to this effect must be signed by all trainees prior to their being
accepted upon LP training courses. It has been claimed by some LP Trainers
that their LP "treatment" was so successful that individuals that who were
so sick and disabled that they attended their LP training in wheelchairs
were able to walk home and did not need their wheelchairs again!

LP is not regulated by any form of medial institution or establishment as it
is not a treatment or therapy and it is not accredited by any educational
institute or training body either. LP Trainers are only registered with Phil
Parker who is the creator of the Lightning Process, and not with any
official body whatsoever. This registration centres around whether or not a
given LP Trainer may use Phil Parker's Lightning Process logo and trademark
and training materials in an agreed manner, on the basis of the Trainer
paying a professional fee to Mr. Parker to do so. Therefore this matter is
essentially one about copyright rather than about upholding professional
medical, scientific or educational standards of practice, performance or
behaviour by LP Trainers.

LP is a training not a treatment in mind-body interaction based on life
coaching, Neuro linguistic programming, NLP, Autogenic Training, AT, and
Eriksonian Hypnosis which in combination constitutes a kind of faith healing
(i.e. faith in the Lightning Process) which is used to convince people that
they can cure themselves of just about any medical condition through the
application of will power through the use of LP techniques.

LP perceives ME and other medical conditions to be merely complex forms of
behaviour which the individual has allowed to get out of control, because
according to Phil Parker, this behaviour is reinforced by a supposedly
perceived physiological feedback loop between thoughts and emotions which
cause the "aberrant behaviour", which according to Phil Parker produces an
altered physiological state within the person, that Phil Parker believes
constitutes a vicious circle. This supposed vicious circle is reinforced by
the person themselves craving the altered physiological state into which
their "aberrant" thoughts and emotions instil in them, thus they are
perceived to be addicted not only to their "aberrant" thoughts and emotions,
but also to the perceived physiological state that Phil Parker attributes to
those supposed thoughts and emotions.

Therefore Phil Parker claims that his LP is a supposed means of breaking a
supposed vicious circle and turning it into a supposed virtuous circle which
will lead the person, supposedly out of their "aberrant behaviour" which is
defined within LP as illness, and back to health and wellness.

Therefore the issue becomes within Phil Parker's LP that ME sufferers are
trained to believe that they "do not have ME, they merely do ME", meaning
that ME is treated as a complex aberrant behaviour system and not a physical
neurological disease as far as LP is concerned.

LP concentrates on the application of various NLP linguistic techniques and
what are called post hypnotic suggestions and triggers to reinforce Phil
Parker's remodelling of severe illness and disability as merely aberrant
behaviour which can be initially kept an bay, and then trained away by
continuous repetition of LP.

The consequence of this is that if one is to apply LP as its creator
intends, then one must not acknowledge that one is in pain or suffering
symptoms as this is taken to be the intrusion of the "negative" "sick" self
which corresponds to the personification of the "aberrant" thoughts and
emotions which produce the "aberrant" behaviours that the person is being
trained to banish.

The result of this is that LP trainees/ME sufferers are effectively trained
to disown and deny their pain, suffering, symptoms and illness and to
believe that they are no longer ill because they are in total control of
their "negative sick selves" which are the supposed repository of all their
pain, suffering, sickness and disability and that they can banish this "bad"
and "negative" person from their mind whenever that nasty person rears
his/her ugly head in order to subjugate them to symptoms.

The Royal Society of medicine held a Medicine and Me type of conference
event for ME patients and carers about ME on 11 July 2009. There were a
number of advocates of the Lightning Process present who put forward the
point of view that LP was an effective treatment for ME.

Jane Colby the Executive Director of Tymes Trust, a children's charity for
parents & children with ME said in response to this that she knew of a
number of cases including one in particular of a boy who said he was very
much better, when actually he was not.

The consequence of what the boy said was that he lost all, or very nearly
all, of the help, support and assistance he had from the various
educational, social and health services he and his family were receiving for
him.

I think that this illustrates very well the pitfalls of the Lightning
Process and other techniques that are similar to it. You might think that
you are better; you might even believe that you are no longer ill, but this
does not mean to say that your health has genuinely improved.

I am therefore very concerned that children and young people are to be
subjected to LP as I do not consider that it is appropriate to do so in the
light of this and other evidence about LP, and I am appalled that there
should even be an official clinical trail of LP, and that children and young
people are the subject of the trail.

For background on the Lightning Process please see the following 3 YouTube Videos :-

Part 1 http://www.youtube.com/watch?v=SFGcKmdOVO0

Part 2 http://www.youtube.com/watch?v=bDsc0-dJ640

Part 3 http://www.youtube.com/watch?v=0UvfWW5IA1I


Issues

Action for ME have published the Press Release which appears below, although
not very efficiently, but they are certainly handling the Public Relations
for this Trial of LP. Action for ME is in partnership with the hospital
where the trial is being carried out as can be seen from the Website of the
hospital concerned. Action for ME have worked closely with Dr. Crawley and
the service provided by the hospital at which the trial of LP is to be
undertaken, and Action for ME's Chief Executive is on the Board of that
hospital, and their members magazine, InterAction, regularly carries
advertisements from LP Trainers and they have published feature articles
about LP and other personal growth/coaching packages which all claim to be
effective treatments/cures for ME.

Action for ME have contended wrongly and erroneously that there are five
ME's ranging from the physical to the psychological and they are known
within the UK ME community for their biopsychosocial approach to ME.

Therefore when one puts all these facts and pieces of evidence together one
is prompted by the weight of that evidence to ask if all these instances and
occurrences are merely circumstantial, or if Action for ME is actually
involved in this prospective Randomised Controlled Trial of the Lightning
Process.

I therefore call upon Action for ME to publicly clarify their position on
this trail and state clearly what, if any, their involvement is in this
Trial, and to make a clear commitment to their membership that Action for ME
will not participate in, or be involved in official or unofficial RCT or
other clinical trails without informing and consulting their members.

I also call on Action for ME to make a public position statement on where
they stand on the Lightning Process, and whether Action for ME considers
that LP provides a beneficial treatment or cure for ME, and whether or not
they back this trail and whether or not they could and should recommend LP
to their members, and on what basis, and if they will review their editorial
coverage and advertising policies in the light of this position statement.

I consider that this public position statement together with the above
statement clarifying Action for ME's participation, if any, in the RCT Trial
of LP should be published on Action for ME's Website and in InterAction
magazine as well as on Action for ME's Facebook site.

These matters are of particular importance given that Action for ME states
that is the leading ME charity in the UK and that there may be considerable
implications for the British National Health Service, the hospital
concerned, and its clinical staff where the trial is to take place, and most
of all the ME patients who will undertake this trial, bearing in mind the
contents of Note 5 below.


Press Release

Randomised controlled trial (RCT) on Lightning Process may be on the
cards, according to this press release

This pdf gives the info, but I have copied it below.

http://www.afme.org.uk/res/img/resources/RCT on LP March 2.pdf

2nd March 2010

Media Release

164,000 awarded for new research into the treatment of a chronic childhood
condition A research study looking into interventions and treatment options
for a chronic childhood condition has been awarded funding of 164,000 by
the Linbury Trust and the Ashden Trust. The funding has been awarded to a
research team led by Dr Esther Crawley, Consultant Paediatrician at the
Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, also
known as the Min, and Senior Lecturer at the University of Bristol.

Esther and her team will carry out a pilot project to investigate whether it
is possible to look at two different approaches to the intervention and
treatment of Chronic Fatigue Syndrome/ME (CFS/ME) in Children. CFS/ME in
children is a relatively common and potentially serious condition affecting
over one per cent of children across the UK. Over 50 per cent of affected
children are bed bound at some stage of their illness and have an average
time off school of one academic year. Despite this there is a limited
evidence-base for treatment for children with CFS/ME. This research also
incorporates the first study on health economic cost of this condition in
children.

Dr Esther Crawley said: "We are delighted to have been awarded this research
grant. CFS/ME can have a profound impact on a child's life. We hope that our
research will enable us to understand more about this condition and how we
can help those children who suffer with it." 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. The specialist Paediatric CFS/ME service
at the Min is the largest regional paediatric CFS/ME clinical service in the
UK, and also provides services nationally. The team currently provides
assessment and treatment for over 200 children from across the UK and
Western Europe each year. Approximately ten per cent of the children
referred into the service are housebound and are assessed at home.

The Phil Parker Lightning Process is an intervention that is used for a
variety of conditions including CFS/ME and has been developed from
osteopathy, coaching and neuro-linguistic programming. It is a three-day
training programme run by registered practitioners and designed to teach
individuals a new set of techniques for improving life and health.

Phil Parker, designer of the Lightning Process said: "We are thrilled to
have the opportunity to collaborate on this exciting and groundbreaking
research with Dr Crawley and her team. It is vitally important that all
interventions that could assist children with CFS/ME to return to school and
improve their health are explored. We hope that this study is successful and
leads to further research collaborations between the Lightning Process and
specialist teams like Esther's." The study will involve in depth interviews
with the patients and their parents, and the primary outcome measure will be
school attendance after six-months. It is hoped that over 90 children aged between eight and
18 and their families will be involved in the study. They will be recruited
after assessment by the specialist team at the Min.

The study will begin in September 2010.

Press contact: Emma Mooney, Marketing & Communications Manager RNHRD
01225 465941 ext 211 emma.mooney@...

Notes for Editors:

The RNHRD NHS FT is a national specialist rehabilitation and rheumatology
hospital based in bath. Offering services to adults, children and young
people the Trust has expertise in general and complex:

Rheumatological and musculoskeletal conditions

Neurological rehabilitation

Chronic pain management

Chronic Fatigue Syndrome/ME

www.rnhrd.nhs.uk

Phil Parker Lightning Process http://www.lightningprocess.com

Linbury Trust: http://www.linburytrust.org.uk/

Ashden Trust: http://www.ashdentrust.org.uk/

The University of Bristol is internationally distinguished and is ranked
among the leaders in UK higher education. Research-intensive, with an
international reputation for quality and innovation, the University has
17,000 students from over 100 countries, together with more than 5,500
staff. For further information, see www.bris.ac."


Briefing notes

Note 1 The Bath Royal National Hospital for Rheumatic Diseases Home Page can be
found at :- http://www.rnhrd.nhs.uk

Under the About us page shows that the hospital provides a CFS service
with text that reads as follows :-

Chronic Fatigue Syndrome/ME

A service for people with chronic fatigue syndrome/ME delivered through
outpatient programmes, weekly therapy clinics, community assessment, care
management, and transitional clinics, which are held jointly by the adult
and paediatric teams to assist young people in moving from one service to
another.


Note 2 From the above 'About us' page please select the "How the hospital is
managed tab which shows that Sir Peter Spenser, CEO of Action for ME is a
Non Executive Director

Peter Spencer: Appointed in December 2007. Peter has considerable
experience as Chief Executive of large public sector organisations. He is
currently the CEO of Action for M.E. a national medical charity based in
Bristol.

Note 3 The following information is to be found by clicking on the "Chronic Fategue
Syndrome/ME" heading under "About us" :-

The Bath & Wiltshire Local Multidisciplinary Team provides specialist help
for adults and young people with CFS/ME. The team covers 5 primary care
trusts which are: Bath & North East Somerset, Kennet & North Wiltshire, West
Wiltshire, South Wiltshire and Swindon. This part-time service works on a
'hub and spoke' model to ensure access to services across the geographical
area. Team members based in Bath, Salisbury and Swindon include Occupational
Therapists, 3 GPs with a special interest in CFS/ME, a psychologist, a
physiotherapist and an Administrator.

The Bath & Wiltshire CFS/ME Service is part of a national network set up as
a result of the Department of Health's CFS/ME Service Investment Programme,
which has made 8.5 million available between 2004 and 2006 to develop
services for people with CFS/ME. We link into a regional Clinical
Coordinating Centre based in Bristol.

Location and Service Leads

The hub of the team is based at the RNHRD NHS Foundation Trust in Bath and
is led jointly by Occupational Therapist Advanced Practitioners Nikie
Catchpool and Anne Johnson.

Outpatient Appointments

Therapy led clinics are held weekly at the RNHRD or, if a person is severely
affected, assessment may take place in a community setting. Following a
positive diagnosis of CFS/ME by their own GP or, if appropriate, consultant
medical practitioner locally, patients can be referred to the hub of the
team at the RNHRD using our referral form and criteria. The team will then
decide on the appropriate course of action to be taken.

There are also transitional clinics, which are held jointly by the adult and
paediatric teams, to assist young people in moving from one service to
another.

Supporting Services

A 'Shared Care' approach is adopted in partnership with community based
health and social care agencies and national charities including Action for
ME (AfME). AfME run a part-time CFS/ME Helpline
( 0845 123 2390 0845 123 2390) for patients in the South West.

Interventions

Patients are assessed individually and appropriate treatment options decided
upon in partnership with the Team. These include: one to one input;
attendance on an outpatient based Modular Management Programme; Expert
Patient Programme (EPP) input; or Care Management for people severely
affected by their CFS/ME.

Education, Research and Development

The aim of the Bath & Wiltshire Local Multidisciplinary Team is to provide a
local service for local people. Education of team members and other health
and social care professionals, locally as well as regionally and nationally,
is of high importance, to raise awareness and an understanding of CFS/ME.
The Service leads act as visiting specialist lecturers to the University of
the West of England. The Team are supported by the School for Health at the
University of Bath in rehabilitation research projects and are also active
members of the national PRIME Project - Patients and Researchers in ME.

Partnerships

To achieve our aim, effective partnership working is essential. Our partners
include:

The Patient and Public Involvement Forum, Royal National Hospital for
Rheumatic Diseases NHS Foundation Trust

Bath & North East Somerset PCT, Kennet & North Wiltshire PCT, West
Wiltshire PCT, South Wiltshire PCT and Swindon PCT

Avon and Wiltshire MH Partnership NHS Trust

Action for ME and Action for Young People with ME

ME Support groups in Salisbury and Swindon.

Enquiries Contact : Diane Farmer Administrator/Referrals Coordinator Bath &
Wiltshire CFS/ME Service RNHRD Foundation Trust Upper Borough Walls Bath BA1
1RL E-mail: diane.farmer@rnhrd.nhs.uk
Telephone: 01225 465941 01225 465941, Ext. 202 Fax number: 01225 473411

Links

Action for ME

Action for children and young people with ME

Association of Young People with ME

CFS/ME Helpline


Note 4 The Prime project have a seat on Action for ME's National ME Observatory
Steering Committee which is change of spending over 500, 000 of UK Lottery
money and Prime together with Dr. Derek Pheby were instrumental in setting
up the Observatory. The Observatory is engaged in 6 CFS research projects.

Note 5 M.E. in recent Private Eye (#1248)

Under "Legal News" (p. 10)

"M.E. sufferers were stunned recently to receive threatening letters when
they posted their views on the 'Lightning Process', a programme that
allegedly produces 'amazing results' for people not only with M.E. but
'anxiety, panic attack, over-eating, low self-esteem and guilt' too. When
sufferers started reporting they had paid 600 for a course that did not
work for them, they received warning of defamation proceedings if they did
not recant."


YouTube - Videos from this email

[video]https://www-gm-opensocial.googleusercontent.com/gadgets/proxy/refresh=3600&container=gm&gadget=http%3A%2F%2Fwww.google.com%2Fig%2Fmodules%2Fgm%2Fyoutube%2Fcard-youtube.xml/http://i.ytimg.com/vi/SFGcKmdOVO0/default.jpg[/video]

[video]https://www-gm-opensocial.googleusercontent.com/gadgets/proxy/refresh=3600&container=gm&gadget=http%3A%2F%2Fwww.google.com%2Fig%2Fmodules%2Fgm%2Fyoutube%2Fcard-youtube.xml/http://i.ytimg.com/vi/bDsc0-dJ640/default.jpg[/video]

https://www-gm-opensocial.googleuse...http://i.ytimg.com/vi/0UvfWW5IA1I/default.jpg
Click to expand...

I dont know what it is but a RCT it aint.Who exactly are action for ME and who funds them?
 
G

Gerwyn

Guest
CBT and NLP I cant think of a more toxic combination unless of course you include the hogwash too! Unethical and inhuman
 
Esther12

Esther12

Senior Member
Messages
13,774
Personally, I'd love it if LT turned out to be really effective. It just seems so very quacky - it would be a good punchline to eight years of illness if this was how I recovered.
 
fingers2022

fingers2022

Senior Member
Messages
427
Esther12 said:
Personally, I'd love it if LT turned out to be really effective. It just seems so very quacky - it would be a good punchline to eight years of illness if this was how I recovered.
Click to expand...

Yep, Esther, that's how I saw it too (except for 8, read 20.....and for LT, read LP). Call me naiive, but as the universe is so complicated, and we all actually know didly squat about it, I find it hard not to be open-minded about everything.....at least until I know the facts. I now know that the LP is not effective, not for me and what I suffer from, at least. You may have to find out for yourself, as it stands.

Wonder what Peter Spencer reckons? One for tomorrow.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'm afraid that I got a bit worked up about The Lightning Process and had a bit of a rant in the comments section of the Phoenix Rising blog (see the first link in my message above).

I hadn't been following this thread, and it seems that you've all been having a very intelligent discussion.
For the sake of discussion, I'll re-post one of my comments from the blog, below, although I think most of what I say has been covered by this discussion thread already.

A big thank-you to fingers, for getting on the phone about this...
I will try to get round to writing some letters, but I think I won't have the head space to get around to doing anything about this one...
But I think it's important to tell people how dangerous this study could be for the kids.

Fingers, have you thought about contacting AYME? There's a small chance that they might take an interest in this if they look out for the interests of children with ME. I've always found Action for ME exceptionally friendly and open to dialogue.


Here's a copy of my comment which I posted after the blog:
As for the study that is being carried out on children in the UK, I just do not understand how they can get ethical approval for it. The children will be told that they are going to do a course which will make them better. So they will eagerly embark on the course but without any meaningful insight into the nature of the process. This will, in effect, be coercion because the children will not be mature enough tomake their own decisions, but will simply be told to undertake the course by either their doctors or parents. When they are on the course they will be told that they are not really ill, and must not think about, or talk about their illness. They will be told that there is nothing wrong with them and they must never again say that they are feeling ill, no matter how they may be feeling. If they begin to feel their symptoms worsening, then they will be told to never mention it again, and that they are failing the course, and that they are thinking badly (i.e. they are bad children). They will be taught to ignore their natural body processes and to lie about how they are feeling. Finally, when the course hasn't worked for them, and they experience a worsening of symptoms, they will be told it is because they didn't follow the instructions properly and that they are failures. This will make them believe that they are bad children. The trainers will not have any medical training, or training in medical psychology and so will the children have proper protection from exploitation? The children will be told not to recognise their symptoms. They will not be allowed to slow down, as any normal person would respond to feeling fatigued and exhausted. Finally, as the children crash into the dark depths of a relapse, their parents will be accused of Munchhausen's, and the children will be accused of being fakers, malingerers, and school phobics, and dragged off to a care home where they will suffer even more degradation of their human rights, and their health. This may sound like an outrageous and unlikely representation of what will happen, but it has happened time and time again with people with ME. We have been dragged into psychiatric wards, parents have been accused of Munchausen's, and children are accused of being school phobic and of having psychiatric issues. These questionable techniques (The Lightning Process is not a clinically proven treatment) seem to only encourage this sort of abusive behaviour by the medical profession. It almost seems like a Nazi (and I don't use the word lightly) approach to medicine to put children on this course: disallow the disability; don't recognise or respond to the needs of the child patient; condemn the patient as a failure and second rate citizen; a survival of the fittest mentality; disabled people are considered second-rate citizens (illness and disability is explicitly regarded as a failure, and the children will be told this!) It seems to me that children run a serious risk of being psychologically damaged by being put through this sort of abuse.

The Lightning Process is not a medical treatment, and neither has it been studied medically or scientifically, and I think that we, on the phoenix rising forums should campaign to get this children's study stopped before it does severe damage to these children. Doing a study on volunteer adults, who have all of the information about it, is one thing, but to manipulate children is something else altogether.
 
D

Dolphin

Senior Member
Messages
17,567
fingers said:
Hi All

So far I've spoken with ME association and RNHRD.

MEA is strongly opposed to this study - watch their space.

I spoke with the young lady who issued the media release at RHNRD and expressed my concerns:
- first, damage to their own PR and credibility through engaging with the LP organisation
- second, but foremost, risk of wrong treatment of children
- third, wrong conclusions through lack of knowledge, poor management, wrong measures, lack of rigour in selection criteria, failure to evaluate the LP and the supplier properly before engaging children et.etc.etc

She obviously could not engage in a detailed clinical discussion, through lack of knowledge, but promised to discuss my points first within the communications team, then to pass on as appropriate within the organisation. I've left my contact details and offered my input and experience as sufferer and failed student of the LP (guess I'm just not very bright :tear:)

This is just a start, I will be following up on this regularly. Please do not all pick up the phone as they will just get swamped and likely refuse to talk.

Onwards
Fingers of Endland
Click to expand...
Well done on this. Somebody who is involved in research on another forum said probably the best way to stop it is to contact the ethics committee(s) and complain.
 
fingers2022

fingers2022

Senior Member
Messages
427
Bob said:
Fingers, have you thought about contacting AYME? There's a small chance that they might take an interest in this if they look out for the interests of children with ME. I've always found Action for ME exceptionally friendly and open to dialogue.
Click to expand...

Thanks Bob, I'll check that out.

FYI, I've spoken with the PA to the board at RNHRD, and am awaiting a response to my e-mail tio Peter Spencer (non exec dir. there + CEO at AFME as posted by Islandfinn).
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
fingers said:
Hi All

So far I've spoken with ME association and RNHRD.

MEA is strongly opposed to this study - watch their space.
Click to expand...


Which member of the Board of Trustees has said that the ME Association is strongly opposed to this study?

Dr Crawley was a member of the NICE Guideline Development Group and is a member of the MRC's Holgate chaired, CFS/ME Expert panel.

The MEA's Dr Charles Shepherd has a history of not opposing people holding positions like Dr Crawley.

Can we look forward to a position statement from the MEA?

Suzy
 
D

Dolphin

Senior Member
Messages
17,567
Bob said:
How do we contact the ethics committee? Does anyone know?
Click to expand...
She mentioned the university ethics committee so one might not need to know the exact person.

The press release had:
The University of Bristol is internationally distinguished and is ranked
among the leaders in UK higher education. Research-intensive, with an
international reputation for quality and innovation, the University has
17,000 students from over 100 countries, together with more than 5,500
staff. For further information, see www.bris.ac.uk
Click to expand...
so it must be connected with that.

EC is a Senior Lecturer at the University of Bristol.
 
fingers2022

fingers2022

Senior Member
Messages
427
ME agenda said:
Which member of the Board of Trustees has said that the ME Association is strongly opposed to this study?

Dr Crawley was a member of the NICE Guideline Development Group and is a member of the MRC's Holgate chaired, CFS/ME Expert panel.

The MEA's Dr Charles Shepherd has a history of not opposing people holding positions like Dr Crawley.

Can we look forward to a position statement from the MEA?

Suzy
Click to expand...

Hi Suzy

Sorry, that's got a bit confused.

The board member I am addressing Peter Spencer at AfME, also non--exec at RNHRD.

I have not spoken with Charles Shepherd, although would expect he will be in line with the MEA's position of opposition to the study.

I believe that the MEA will be proactive in opposing this, but don't know whether they will issue a statement - do we need one? Actions speak louder than words.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
fingers said:
Thanks Bob, I'll check that out.

FYI, I've spoken with the PA to the board at RNHRD, and am awaiting a response to my e-mail tio Peter Spencer (non exec dir. there + CEO at AFME as posted by Islandfinn).
Click to expand...

Hi fingers, I expect that you know this already, but just in case you don't...
AYME and AfME are sister organisations, but as far as I can see, they run their affairs separately.
I think that AYME’s present Chief Executive Officer is Mary-Jane Willows.

Thanks for all this amazing activity you've embarked on!
Thanks goodness that someone is looking out for these kids!
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
fingers said:
Hi Suzy

Sorry, that's got a bit confused.

The board member I am addressing Peter Spencer at AfME, also non--exec at RNHRD.

I have not spoken with Charles Shepherd, although would expect he will be in line with the MEA's position of opposition to the study.

I believe that the MEA will be proactive in opposing this, but don't know whether they will issue a statement - do we need one? Actions speak louder than words.
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Can we get this clear, have you spoken to or emailed a member of the ME Association Board of Trustees?

Is so what was their response?

Tony Britton is not a member of the BoT and neither is Gill Briody (MEA HQ, salaried member of staff and Company Secretary).

You've said:

I believe that the MEA will be proactive in opposing this, but don't know whether they will issue a statement - do we need one?
Click to expand...

Most defintely. If the MEA is claiming to oppose this study then the BoT should be prepared to put that in writing.

Don't accept anything less. Shepherd is not comfortable rocking the boat.

So you need a written statement on behalf of the BoT.

Suzy
 
B

Bob

Senior Member
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B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
These are the trusts providing the funds for the research:
http://www.linburytrust.org.uk/
http://www.ashdentrust.org.uk/

So maybe we need to contact these trusts, pointing out: the dangers of the study; the dangers of The Lightning Process; the amateur and unproven nature of The Lightning Process; and our concerns regarding the (ethicalness? ethicity? ok, i'm giving up with that word! lol) ethical implications.
 
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