Dear Friends:
We are pleased to advise that the Overview for
Fibromyalgia, a summary of the Canadian Consensus
Document, is now available in French on our
website at
http://www.mefmaction.net
The Overviews were Co-authored by Bruce M.
Carruthers, MD, CM, FRCP(C) and Marjorie I. van
de Sande, B. Ed,Grad Dip Ed and have just been
finalized. We are grateful and much appreciate
the efforts of Dr. Carruthers and Marjorie for
their work, not only on the Overviews but also on
the Consensus Documents. Their valued would and
that of the Consensus Panels are much appreciated.
We also would like to thank the Public Health
Agency of Canada who found the funds to get the
Overview translated for us. For now, it is only
available on our website and PHAC but we hope to
have hard copies printed as soon as we find the
funds to do so. It will then be offered at
minimum cost to cover the printing and shipping services.
Please find below an update and background on the
Overviews from co-author, Marj van de Sande.
Lydia
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web:
http://www.mefmaction.net
Overviews of the Canadian Consensus Documents
for ME/CFS and FMS - Update
© Marjorie van de Sande, B. Ed., Grad. Dip. Ed.
Consensus Coordinator & Coauthor of the Canadian Consensus Documents
It is amazing to reflect back to early 1999, when
Dr. Bruce Carruthers and I began working together
drafting the Canadian Consensus Documents
(CCD). What a lot of time and effort was
involved in the several drafts! As soon as the
members of the international Expert Consensus
Panels were selected by Health Canada in December
2000, drafts were sent to them. After further
input and revisions, there was one hundred
percent consensus by all the members of both
international Expert Panels on their respective
consensus documents. Both documents were
published in peer reviewed journals in 2003.
The Canadian College of Family Physicians
suggested that short overviews of the consensus
documents may be of further assistance to busy
medical practitioners. Subsequently, Dr.
Carruthers, principal author of the ME/CFS
Consensus Document and Co-Editor of the FMS
Consensus Document, and I wrote Overviews of the
CCD. Both the CCD and the Overviews were written
independent of any organization. It was
imperative that we owned the copyright so that we
could ensure that the integrity of the Consensus
Documents was maintained and we would have the
ability to grant other organizations permission
to reproduce or translate the Overviews. This
would further our efforts to advance the current
understanding of these illnesses and ensure that
patients receive an accurate diagnosis and
appropriate treatment in a timely fashion. In
order to make this information accessible to as
many people as possible, the Overviews are a
not-for-profit project. People may also download
their copy of the Overviews online.
Canada
In response to the announcement of the upcoming
printing of the Overviews in 2006, numerous
organizations across Canada joined in the order.
The National ME/FM Action Network sent Overviews
to the heads of relevant departments in medical
schools, university medical libraries, colleges
of physicians and surgeons, and rheumatologist
(FMS Overview) throughout Canada. In addition,
they sent Overviews to physicians of family
medicine in the Maritime provinces, territories
and Saskatchewan. As the proceeds from Dr. De
Meirleirs conference in Calgary and the sale of
conference DVDs were designated for Alberta,
Overviews were also sent to physicians of family
medicine, neurologists, specialists in community
health, specialists in internal medicine
(Calgary), nursing schools (Calgary), specialists
in cardiology, infectious diseases, clinical
immunology/allergy (ME/CFS Overview) and some medical classes.
The MEFM Society of BC
[<
http://www.mefm.bc.ca/>www.mefm.bc.ca]
distributed Overviews to physicians of family
medicine and neurologists in British
Columbia. Some organizations sent Overviews to
clinicians in their area while others bought them
for their members. Many patients purchased
copies for their doctors. Sharon Walker
purchased 450 pairs of Overviews to distribute to
medical practitioners in northern B.C. She
stated, People like you give me hope for a
healthier Canada
One day I pray that all of our
Canadian doctors have the booklets [Overviews] &
the "Teach-Me" book is in every school in Canada.
French Translations
AQEM, in Quebec, had the ME/CFS Overview
translated into French and distributed thousands of Overviews across Quebec.
We greatly appreciate and thank the Public Health
Agency of Canada for recently having the
Fibromyalgia Overview translated into French. We
hope it will help more francophone Canadians get
the medical help they need, reported Lisa
Underhill, Senior Chronic Disease Management
Analyst. The translation is presently being
reviewed by a medical doctor. After the final
formatting and our stamp of approval, the
National ME/FM Action Network will distribute the
French translation of the FMS Overview.
It is encouraging that the Public Health Agency
of Canada website
[<
http://www.phac-aspc.gc.ca/>www.phac-aspc.gc.ca] also links to the Overviews.
Conferences
The Overviews have been given out at numerous
conferences throughout Canada and other
countries. For example, in Alberta they were
given to attendees of Dr. David Bells symposium,
Dr. Kenny De Meirleirs Conference and the
University of Calgarys Medical School provided
Overviews at their Continuing Education Conference on ME/CFS.
Other Countries
European Society for ME (European researchers)
stated that the ME/CFS Overview is an important
document to have on a serious ME/CFS website.
The response from other countries was both
surprising and exciting. Upon request, we gave
the printing rights to one organization per
country. They in turn agreed that all other
organizations in their country could order the
Overviews from them and everything would be done on a not-for-profit basis.
United Kingdom: Jeff Brown of the East Anglia ME
Patient Partnership reformatted the ME Overview
to fit the size of paper used in the UK and
Europe. Their first printing included orders
from numerous organizations throughout the UK,
Sweden, Norway, and the Irish ME/CFS Support
Group purchased 3,000 ME/CFS Overviews, which
they sent to primary health practitioners in the
Republic of Ireland. Dr. Mitchell of the UK
ordered 4,000 copies to distribute to primary
health care practitioners in his area and to
patients who are referred to his
clinic. Excitement grew when Dr. Terry Mitchell
MA MD FRCPath, Consultant Haematologist, and
Professor L J Findley TD KLJ MD FRCP FACP Consultant Neurologist, UK stated,
"We recommend and endorse the Canadian
Consensus Document. We regard it as an extremely
important contribution to understanding the physical basis of the condition.
Subsequently, printing rights for the UK were
transferred to Invest in ME.
[<
http://www.investinme.org/>http://www.investinme.org ]
Australia: The Alison Hunter Memorial Foundation
was given the printing rights for the ME/CFS
Overview for Australia and Chris Hunter has done
an amazing job looking after the orders from
organizations in that country.
[<
http://www.ahmf.org/>http://www.ahmf.org]
Fibromyalgia South Australia reprinted the FMS Overview.
Reprint permission was also given to other
organizations in New Zealand and Denmark.
Translations
We think the Canadian Consensus Document and
your Overview of it are two of the most important
documents about our dismissed illness. So we
would like permission to publish
your so
crucial work, in order to make able all Italian
ME/CFS patients know it. Gualtiero Zucconi, CFS Italia
It is very important to the lower countries to
get this magnificent Canadian Document spread so
literally everybody can read it. We want to make
a difference in thinking and treating in these
countries by your help. It is really necessary. MEtrans, Netherlands
Translating lengthy documents containing medical
terms proved challenging and in some cases took
approximately two years. Sometimes the Overview
was transferred to a professional translator. It
was also difficult for busy physicians to find
time to review the translations for medical
accuracy. The translations were sent to me for
formatting and approval. My son, Bob, kindly
formatted the covers and stitched the cover to
the document. The finished Overviews were met
with a sense of relief and celebration.
Dear Marj, A thousand hugs to you!!!!! This is
GREAT! I just got your emails. Wonderful. What
a relief that it is done now! Thank you soooooo
much for your work and your help! I'll put it
immediately on my website. Regina Clos,
professional translator, patient & advocate
(Regina translated the ME/CFS Overview into
German for Fatigatio [<
http://www.fatigatio.de/>http://www.fatigatio.de] )
Cathy van Riel, who was not associated with any
organization, did an excellent job translating
both the ME/CFS and FMS Overviews into Spanish
and had them reviewed by doctors. Cathy gave the
finished translated Overviews to Spanish
organizations and made them accessible
online. CFS Italia had both the ME/CFS and FMS
Overviews translated into
Italian. [<
http://www.cfsitalia.it/>http://www.cfsitalia.it]
Variations of the Same Story World-Wide
We know there is a lot of work to do in Canada as
in other countries. But the UK and the
Netherlands are the cradles of the prevailing
misinformation. The UK has some strong patient
organizations so the story of the patients
plight in the low countries (Netherlands and
Belgium) may paint the most poignant
portrait. Not only is the its all in your
head/CBT/GET doctrine well enshrined, but the
harsh attacks by Wesselyites on any who dare
speak out about all the thousands of research
studies confirming physiological abnormalities
have intimidated many good doctors and advocates.
Special recognition needs to be given to three
organizations that had never worked together
before, MEtrans, Steungroep ME en
Arbeidsongeschiktheid and ME/CVS Stichting
Nederland, for pooling their energy and resources
to have the ME/CFS Overview professionally
translated into Dutch. Press releases went out to
doctors, organizations, politicians, etc. The
organizations wrote to Health departments and
emailed the Overview to thousands of contacts on
their mailing lists. About that time, the
Netherlands held its first conference on ME. A
journalist wrote six pages about ME XMRV,
conference and the Canadian Overview/Consensus
Document for a magazine. First time ever! Many
recipients were unaware of the CCD surprised
but good reactions. An organization for ill
children that supports CBT-GET, posted the
Overview on their website. Organizations in
Belgium quickly joined forces. MEtrans reports,
You have to imagine that this is completely new
in ME world here (Netherlands and Belgium)
We
still have to work very hard for a long
time. Excitement when a minister announced that
there must be help for ME/CFS patients was
quickly deflated when a GET organization told the
minister that ME does not exist in adults. De
Stichting was in contact with The Hague and there
is hope that people with ME/CFS may be given
permission to get help (wheelchairs,
etc.) Government advocates the NICE criteria
from the UK but they are now aware of the
Canadian consensus criteria. As Government was
in the process of changing, patients are hopeful
that the new government will try the Canadian
criteria. Patients have a huge amount of work to
do but, with a really good piece of work in our
hands
I am really positive. Hope you can feel
that in my writings and feel my hope and
happiness. .. Thank you for your time, effort and
communication. It was great. Thanks for
everything. Hugs. [name held in confidence]
The Overviews are a Source of Hope
The lack of knowledge and need to educate medical
practitioners about ME/CFS and FMS is a
world-wide problem. It is hoped that the Overviews are useful tools to:
· enhance recognition and understanding of ME/CFS and FMS
· generate greater and more accurate
knowledge in the medical community
· balance certain biases with credible medical research
· enable sufferers to be treated with more respect and expertise
This sense of hope was expressed repeatedly.
As this erudite and practical clinical tool
[Overview of the Canadian Consensus Document for
ME/CFS] becomes more widely read and applied,
benefits to patients and positive changes in
official ME policy will follow. Jeff Brown,
East Anglia ME Patient Partnership, UK
If the consultants took the central message of
this document on board, we feel the General
Practice doctors could gain knowledge and in turn
the sufferers might be treated with a little more
expertise. Congratulations on a terrific
document. Declan Carroll, Irish ME Trust
We hope that the information and messages in the
Overviews will spread like ripples in the
water. For example, Dr. Pilar Reig of Spain
recently wrote an article about the ME/CFS
Overview for publication in the Magazine of the
College of Physicians of Madrid.
It has been extremely rewarding to get to know
and work with wonderful, knowledgeable people in
so many countries. One very positive outcome is
that Overviews brought individuals and
organizations together to join forces in their
efforts to raise public awareness and enhance the
knowledge about these illnesses, which will
hopefully result in better treatment for patients.
Dr. Carruthers and I would like to thank all the
people involved for their dedication and
perseverance. We want to credit all the members
of the international Expert Consensus Panels for
their gracious contributions to the Consensus
Documents. A special thanks to Bob van de Sande,
who designed the covers of the Overviews. He
thought it was a one time job but formatted
covers at least a dozen times and stitched them
to the documents about twenty times.
We feel blessed that we had the opportunity to
assist others in some small way. Dr. Carruthers
and I would also like to thank those who sent us
such kind words exemplified by Chris Hunters note:
My heartfelt thanks for all the excellent
work. I think we will be able to generate a
significant boost to the recognition of ME/CFS
and better care thanks to all your hard work. .
. The Overview has been an absolutely wonderful
help - far and away the best tool we have for
doctors and for patients very validating. . . You
have done a truly wonderful thing for every
person with ME/CFS one of the few documents I
feel very proud to distribute - the quality of
the publication brings credibility to everyone
with the disease. Thank you so much.
Chris Hunter, Alison Hunter Memorial Foundation, Australia
*****
Where to Purchase Overviews in North America
The Overviews and translations can be found at
<
http://www.mefmaction.net/>http://www.mefmaction.net
Everyone has permission to download their personal copy.
ME/CFS & FMS Overviews English: Marj van
de Sande <mailto:mvandes@shaw.ca>mvandes@shaw.ca
FMS Overview French translation: National ME/FM Action Network
613-829-6667;
<mailto:ag922@ncf.ca>ag922@ncf.ca;
http://www.mefmaction.net
ME/CFS Overview French
translation: AQEM <
http://wwwaqem.org/>http://wwwaqem.org