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The conference was so fantastic. I now feel
fully armed to battle in ignorance about this
disease in Denmark. How can any doctor look at the
facts and doubt it is a physical disease. And
yet...there was a least one doctor there who still
was a Wessley-schooler. On the second day, I sat
next to this man and when I told him I had ME/CFS
he told me to try deep breathing techniques and
asked me if I was a person who had a ot of
self-doubt...... so...you can lead a fool to facts,
but you can't make them think!
Thanks again for all the
effort that went into this conference. |
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I found the conference to be quite a
revelation. I had no idea how bad the political
situation is with ME.
It has galvanised me into action, with writing to my MP
and a comprehensive and vigorous defence of Dr Myhill.
And I'm going to the Edinburgh Conference too.
Thank you so much for the enormous undertaking you have
embarked on. I shall be doing all I can to support you
all. |
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I thought it was a great conference. I
met many new people, but
I also missed seeing many of those involved in the new
CFS/ME services. |
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Thank you SO MUCH for all your great
work.
And we are so glad you are doing the conference DVD's
again this year, last years were a great resource of
info and encouraging.
I've just downloaded your first journal and will read
it, slowly!!, with great interest.
Will also tell others of the journal and the conference
DVD's in the hope that they will buy them too.
Wishing you and your families improving health,
Best wishes,
Sheila |
Many thanks for the wonderful conference. It
was a great atmosphere and very uplifting to know of the wonderful work and
people involved in helping us ME Sufferers. Back you all the way, and hope you
will all recover soon from the tremendous effort you put in on our behalf and
those of the researchers. It was a conference of excellence and it honoured us
as well as raising us up!
Jane
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Congratulations on your second successful ME/CFS Conference.
I am so pleased that there will be a DVD of the conference.
I am looking forward to watching it and finding out about the latest scientific
research and facts on ME.
I have just downloaded the first IiME Journal. It is very informative and
professionally presented.
I would like to say, "Thank you IiME," for all your hard work.
With best wishes
from
Caroline
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Dear Invest in ME
Just wanted to congratulate you on an excellent conference last week. It was
great to see so many of the leading researchers into ME all in one room, and all
pulling in the same direction.
So thank you for all your efforts in making the conference happen, it's very
much appreciated.
Best wishes,
Chris
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Thank you so much to make
that big event come true. I have a slight idea how
much you worked to get the conference to such a
success, to organise everything so perfectly and to
bring together so many scientists and practitioners
to tell us about their work and their progress in
research and treatment.
I'm sure this event will bring us together more
closely, and only as an international community we
will be strong enough to change things for the
better.
So I'm sure that not only those who were so lucky to
attend the conference are very grateful to you but
all the hundreds of patients who were not able to
come but will profit from its results.
Those were two great days full of extraordinary
lectures, positive information and so many important
contacts!
I profited so much, I learned so much, I've met so
many people I haven't met before - including you -,
all this was so impressive. It will take me some
weeks to process all the information I got which I
will pass it on to the German spoken CFS/ME
community.
Thank you from Germany
Regina |
Congratulations to everyone involved for a
very successful Conference last week.
Both days were
interesting, fascinating, useful, well run and
uplifting.....Thank you very very very much to
everyone for all the work you are doing for
people with M.E.
Priscilla
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Just saw on your website that you did
get a DVD done in the end - my massive thanks to
everyone, there's a whole load of people out there who
appreciate the work you're doing!
Mark
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"Thank you to
the organisers and speakers for a very interesting and
stimulating meeting."
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"Just
wanted to say thanks for organising a conference with
such impressive speakers & at such reasonable cost.
As a humble parent, most conferences are completely out
of my price range, so was really delighted to be able to
attend. I picked up lots of info & have realised
that I need to do loads more h/w to really be on top of
all the stuff that’s been discovered since my daughter
first became ill – 10 yrs ago."
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"Congratulations on
the Conference, it was very well organised with some
excellent speakers. I was very pleased to see a number
of our local CFS team present at the conference but
concerned that some comments by some of the presenters
made may alienate some of these professionals. Please
may I order a DVD. I look forward to next year. Thank
you for all
your efforts and I hope you have a lovely holiday booked
soon! Ann"
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"I am interested in
the DVD & thank you all again for a great conference"
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Dr
Nigel Speight |
4th May 2007 |
"Thanks very much for the invitation. I enjoyed
participating enormously and think the whole conference
was a great success.
Well done!
With Best Wishes"
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"You are certainly running
things efficiently and well and are to be congratulated on
arranging and managing this second excellent conference!
I am only just recovering from
the efforts of attending the 2 day event, having had to
catch up with shopping and other domestic duties yesterday
(Thursday), and was about to send you a note of thanks for
all your efforts and succeeding in facilitating a truly
remarkable conference. It was great to see so many familiar
faces, both amongst the audience and the presenters, and as
you rightly say, the information conveyed was amazing and
exciting. Having said that - so much was known sooooo many
years ago already! - Perhaps two of the most important new
developments were those reported by Ellen Piro on what has
happened in Norway, and the new Clinic in Nevada reported on
by Annette Whittemore and Daniel Peterson - they are very
lucky in both instances!
Thank you all again for all your
hard work and all the trouble you have gone to in
organizing, arranging and managing this remarkable event.
Such conferences should have been arranged by the major UK
ME/CFS charities long ago - Byron Hyde arranged the 1990
Cambridge event."
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"I have come back home
determined to help your cause.
I am working on a plan to get
the Local Press interested in doing a big piece on M.E. in
our paper which is read by a very high percentage of people
living in Guernsey - hopefully during May.
My idea at the moment is to say
that I have attended the Conference in London and have come
back inspired by the efforts of two women and elaborate on
what you have achieved.
Then I want to bring in Dr.
Speight and highlight the children at risk (did I weep
during this?) Dr. Chaudhuri and his findings, etc. etc.
The psychiatric disaster. Norway, etc. etc.
Then I want to turn it and
somehow bring how the Guernsey Doctors are putting at risk
what one doctor has tried to achieve for M.E. patients and
how the attack from the GMC has now spread to many doctors
who are trying to think out of the box and help patients
with complex problems like M.E. These are my initial
thoughts.
A lot of work lies ahead in a
short space of time. One thing that did disappoint me was
the lack of anything much being done for UK patients in the
way of helping them to make a recovery. Sarah Myhill of
course is doing her bit to help but there doesn't appear to
be anyone else doing much. I know from experience there is
so much that can be done but it costs money and time and
can't be dealt with in a seven minute appointment. Just how
does one take that forward?
You are a Great Team and deserve to be
encouraged in every way possible. You are doing
such a fantastic job. Oh boy, do these poor
patients need encouragement!!!!! I happen to be one
of the lucky ones and that is why I am happy to join
in to help fight for those far less fortunate and
with little support."
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"Fantastic conference, many thanks for your
hard work. I thought it was fantastic,
massively informative,
encouraging, inspiring, necessary. It was
very powerful hearing so much material from
the doctors, researchers and speakers
themselves, very, very impressive. I do
agree that the speakers all came across as
deeply humane. As a patient there was an
enormous amount of useful applicable
material and info on research hot from the
lab so to speak. Thanks for enquiring if I
was OK, was only disorientated due to
multiprocessing mayhem, which is worst
symptom. A very good venue too, I noticed
others remarked on what a pleasant
environment, the term 'the organisers did us
proud' came to mind.
I've been thinking about it all day, as
these are serious times requiring
strategies.
Thanks again, it was brilliant, you must be
knackered. A brilliant effort, weight in
gold."
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"Just to say well done for once again
organising such a great conference with brilliant,
knowledgeable and dedicated speakers! We are moving
forward!!"
Kind regards
Louise |
To all the wonderful people who helped
organising the ME Conference in May 2007!!
Just a short note to say Thank you very
much for all the hours that you must have spend to give
us the opportunity to attend the Conference.
Best
wishes to all of you
Petra
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Well done for yet another excellent conference, keep up the
good work. |
I
attended the
second day - an excellent conference - many thanks.
Best regards
Mike
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It was a great pleasure to met up with you
all again in London this week and congratulations must once
more be extended on your terrific organisational talents in
getting the job done.
As well as the huge flow of information gained from the
lectures (OK - some of it went over our heads), Michael and
I both found it very beneficial to be able to meet with the
important players in the ME world, those we were already
acquainted with and some we weren't. |
Hello
To all the hard workers who made this
conference come to fruition, you did a splendid job, and
you so were so very kind to me, and that means so much
to a ME sufferer, when back in my own environment you
are looked on as a malinger, and probably have
psychological problems. Well, I shall battle on
undaunted spreading words and literature the best I can.
A big thank you to all of you.
Joy
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