ANNOUNCEMENT - HIGHLIGHTS OF QUEST SUMMER 2010 NEWSLETTER
by Lydia Neilson
QUEST
Communication No. 84
SUMMER 2010
HIGHLIGHTS
* XMRV UPDATES
* Centers for Disease Control & Prevention
* The CFIDS Association of America
* Whittemore Peterson Institute
* CAN DETECTION OF XMRV BE LINKED TO CFS?
* AMERICAN COLLEGE OF RHEUMATOLOGY PROPOSES
AN ALTERNATE DEFINITION FOR FIBROMYALGIA
* ADDITION TO NATIONAL ME/FM ACTION NETWORK MEDICAL ADVISORS
* OTTAWA 2011 CONFERENCE UPDATE
Early bird highlights
· PRESIDENT FRIEDBERG EXPLAINS MISSION OF IACFS/ME
· SYNDROME DE FIBROMYALGIA ABREGE DU CONSENSUS CANADIEN
· SUBMISSION ON THE USE OF AUDIOTAPES DURING IMES PART 2
· WHATS NEW WITH CANADA PENSION PLAN DISABILITY PENSIONS
· ANNOUNCEMENT UNHEARD VOICES: MY STORY
· AND MORE
PUBLISHING DATE; WEEK OF JULY 26, 2010
The National ME/FM Action Network is
a Canadian registered charitable organization of
volunteers reaching out internationally and
dedicated to helping the medical, legal and
general public in spreading awareness for Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome
(ME/CFS) and Fibromyalgia (FMS) through support,
advocacy, education and research.
QUEST is the quarterly newsletter of the National
ME/FM Action Network and is free with an annual membership fee.
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
13 years, 9 months
ANNOUNCEMENT: UNHEARD VOICES: MY STORY THANK YOU & FOLLOW UP
by Lydia Neilson
Dear Friends:
First of all, thank you so much for your immediate response. The
outpouring has been tremendous and it will take me awhile to respond
to you all.
I have some suggestions to make when you are telling your story. I
know you're worried about the length of your story so I suggest the following:
1. First write your story exactly as it enters your head and what
you are feeling without worrying about length;
2. Once you have it all written down, give it a rest and then return
to it and look it over;
3. Now, keeping in mind that it is going to be read by others, start
editing it as if you are writing an article for a newspaper; and
4.. Finally submit it to me.
For parents who have children or youth who are ill or have been ill,
please let your children write their story from their perspective and
feelings while parents can relate their experiences and how they
dealt with their children being ill.
From my own experiences in the past, I one day sat down and wrote my
story. The first thing I noticed when I started is that I had a very
hard time doing it. It brought back all kinds of hurts and emotions
and what I thought would be a simple process of putting down my
feelings turned into an emotional battleground. Once I completed my
story and dealt with the feelings and losses while writing, I was
later able to look at it more clearly and write a summary which I
still have but haven't looked at anymore. This turned to be a
healing process. I hope it will be so for you.
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
13 years, 9 months
ANNOUNCEMENT - UNHEARD VOICES: MY STORY
by Lydia Neilson
July 12, 2010
Dear Friend:
Re: Unheard Voices My Story
Are you living or have you recovered from ME/CFS
or FMS? How many times have you become
overwhelmed with emotions you keep up inside that
come from not being believed or were not being
believed? You are burdened with wanting to talk
and yet not wishing to sound that you are
complaining or feeling sorry for yourself. There
is healing in talking and you have a right to be
heard. I would like to give you that opportunity.
This project has been on my mind for some time
but the right opportunity never seems to present
itself. However, I think that moment has now
arrived. I have tentatively titled it Unheard Voices My Story.
I would like to tell your story along with
others, not only to help you but also to help
those who are in a similar situation so that they
would know that they too can survive and go
on. They can learn from your experiences and
solutions as you can learn from theirs.
You can choose to identify yourself, stay
anonymous or take on an alias in the story. I
would like to disclose at least the country where
youre from as I am making this a world-wide
project. We are united in coping with an illness
as illness has no conscious or bias By sharing
your story, someone who has become discouraged may find the courage to go on.
If you would like to participate, please contact
me and put my story in the heading. Your contact
will be treated as confidential and will not be
disclosed. Please use just plain word format in
your story and keep in mind that it needs to be
relevant to the topic. There is no age limit.
There is no timeline on this project as of yet
but if done in time I am hoping that it can be
used for a fundraiser towards the cost of the
2011 IACFS/ME research and clinical conference we
are hosting in September 2011 here in Ottawa.
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
13 years, 9 months
ANNOUNCEMENT - FIBROMYALGIA OVERVIEW NOW IN FRENCH ALSO
by Lydia Neilson
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(a)shaw.ca
FMS Overview French translation: National ME/FM Action Network
613-829-6667;
<mailto:ag922@ncf.ca>ag922(a)ncf.ca; http://www.mefmaction.net
ME/CFS Overview French
translation: AQEM <http://wwwaqem.org/>http://wwwaqem.org
13 years, 10 months
WHITTEMORE PETERSON INSTITUTE STATEMENT ON CDC XMRV STUDY
by Lydia Neilson
Whittemore Peterson Institute Statement regarding
Centers for Disease Control XMRV Study
Contrary to the WPI study published in Science in October, 2009, as
well as studies done by
others, including the NIH and FDA, Mr. William Switzer of the Centers
for Disease Control reported
that his research team was unable to detect XMRV in CFS patient
samples. This negative finding is in
contrast to the WPI study in which we detected XMRV in 67% of CFS
patient samples.
To correctly replicate scientific studies it is imperative that
researchers use the same methods
and patient criteria to ensure accurate results. The methodology used
by the CDC was not the same as
that used in the WPI study nor was the patient selection criteria. In
September 2009, WPI sent the CDC
twenty confirmed positive samples and the appropriate methodology to
help them develop a clinically
validated test. However, this team chose not to do this.
Until researchers use clinically validated tests to detect XMRV in
patient samples, as WPI
and their collaborators have successfully done, an accurate
association of XMRV to any diseased
population cannot be made. For this reason, WPI researchers and many
others are currently validating
more sensitive clinical assays to assist federal agencies in their
search for the true prevalence of XMRV
in the human population.
WPI will continue its core mission to deliver answers to patients
with neuro-immune diseases
by supporting the development of accurate diagnostics and providing
effective therapeutics and clinical
care.
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
13 years, 10 months
ANNOUNCEMENT - DR. VERNON OF CFIDS OF AMERICA'S RESPONSE TO THE CDC ON XMRV STUDY
by Lydia Neilson
>Date: Sat, 03 Jul 2010 08:49:04 -0400
>
> Today at 10:56am
>Researchers at the U.S. Centers for Disease
>Control and Prevention (CDC), along with
>collaborators in California and Germany,
>published a paper in the journal Retrovirology
>titled, Absence of evidence of Xenotropic
>Murine Leukemia Virus-related virus infection in
>persons with Chronic Fatigue Syndrome and
>healthy controls in the United States. Blood
>samples from people with CFS, matched controls
>and 41 healthy blood donors were tested for
>antibodies to XMRV using a western blot assay
>and for XMRV DNA using a nested PCR assay. Three
>independent laboratories, including the
>retrovirus lab at CDC, Blood Systems Research
>Institute (BSRI) and the Robert Koch-Institute
>lab tested coded samples. There is no doubt of
>the technical competence of these laboratories
>to conduct these assays to detect XMRV
>antibodies and DNA. So why wasnt XMRV detected?
>
>If the rate of XMRV in the healthy blood supply
>is 0.1% (or 1 person out of 1000), then there is
>a slim chance of detecting XMRV DNA among 41
>healthy blood donor samples. So, no surprise there.
>
>What about the CFS cases and controls? First, I
>would like to make a request of all authors of
>scientific papers please provide a table that
>describes the subject and sample cohort! Combing
>back and forth in a paper to figure out who is
>who and what is what is frustrating! From what I can decipher,
>
>the samples were drawn from 18 people identified
>through a Georgia registry who met criteria
>described in the paper that is different from 1994 international CFS criteria.
>
>Eleven CFS cases and matched controls were
>identified from the Wichita studies, although it
>is not clear if these samples came from the
>longitudinal studies or the clinical study,
>
>and 22 CFS cases and controls from the Georgia community-based study.
>
>There is little indication that these three
>cohorts are comparable in regard to CFS
>definition, as each cohort was selected using different definition.
>
>The authors strenuously object to application of
>the Canadian case definition in other studies,
>stating that, physical findings in persons
>meeting the Canadian definition may signal the
>presence of a neurological condition considered exclusionary for CFS.
>
>Yet the physical findings listed are those
>commonly experienced by CFS patients,
>
>and one (tender lymphadenopathy) is a
>case-defining symptom of the 1994 criteria.
>
>Further, the samples from these three study
>cohorts were collected using different types of
>tubes, each of which has a distinct way of being processed.
>
>As if this werent bad enough, none of the blood
>tubes used were of the same type used in the Lombardi study.
>
>(They used tubes containing sodium heparin that
>are intended for use with virus isolation). The
>blood tubes from the 18 Georgia registry
>patients are designed to collect whole blood and
>preserve nucleic acid; it is not clear where the
>plasma came from for these subjects since plasma
>cannot be obtained using these blood tube types.
>
>So the explanation for not finding XMRV in these
>samples is simple this was a study designed to
>not detect XMRV using a hodge-podge sample set.
>
>Detecting XMRV is hard. Replication of the
>Science paper will be hard because of the
>exacting methods required and because of the
>heterogeneity and complexity of CFS. Regardless
>of the outcome of any single study, it is
>critical that a valid replication study be
>designed and implemented by multiple
>laboratories, using standard and optimized
>techniques and testing split samples collected
>appropriately from adequate numbers of well-characterized cases and controls.
>
>Studies such as this one from Switzer, et al.,
>continue to absorb time, divert precious
>resources and fuel controversy instead of consensus.
>
>References:
>
>Absence of evidence of Xenotropic Murine
>Leukemia Virus-related virus infection in
>persons with Chronic Fatigue Syndrome and
>healthy controls in the United States. Switzer
>WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A,
>Bannert N, Simmons G, Hendry RM, Falkenberg VR,
>Reeves WC, Heneine W. Retrovirology 1 July 2010.
>
>Detection of an infectious retrovirus, XMRV, in
>blood cells of patients with chronic fatigue
>syndrome. Lombardi VC, Ruscetti FW, Gupta JD,
>Pfost MA, Hagen KS, Peterson DL, Ruscetti SK,
>Bagni RK, Petrow-Sadowski C, Gold B, Dean M,
>Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.
>
>For more information about the CDCs cohorts
>from the Wichita, Georgia and registry studies
>visit:
><http://www.cdc.gov/cfs/publications/surveillance.htm>http://www.cdc.gov/cfs/publications/surveillance.htm
>
>
>Suzanne D. Vernon, PhD
>Scientific Director
>The CFIDS Association of America
>July 1, 2010
>
><http://www.cfids.org/xmrv/070110study.asp>http://www.cfids.org/xmrv/070110study.asp
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
13 years, 10 months
ANNOUNCEMENT: CDC REPORTS NEGATIVE RESULTS ON ITS XMRV STUDY FOR CFS
by Lydia Neilson
Dear Friends:
Please find below a short report on the U.S. Centers for Disease
Control and Prevention (CDC) study on XMRV and CFS.
As you know, this is contary to the October 2009 publication in
Science that suggested a possible link between XMRV and CFS. It is
also contrary to the Whittemore Peterson Institute's research study
and the NIH and FDA report which is not published.
You will note that the definition used was the 1994 International
Definition which stresses the fatigue factor.
Lydia
ABSENCE OF EVIDENCE OF XMRV IN CFS AND HEALTHY CONTROLS IN U.S. POPULATION
On July 1, 2010 the U.S. Centers for Disease Control and Prevention
(CDC) reported results from researchers and colleagues of two
institutions in which they found no evidence of infection with
xenotropic murine leukemia virus-related virus (XMRV) among patients
with chronic fatigue syndrome (CFS) and healthy controls in the United States.
The CDC-led team tested archived blood specimens from CFS patients
and healthy controls. The blinded testing was performed at CDC and
two other laboratories with negative results. The CDC concluded that
these data do not support an association between XMRV and CFS in
their study population. Their report was published in an open-access
journal Retrovirology 2010, 7:57 (July 1, 2010) By William Switzer,
Hongwei Jia, Oliver Hon, et al.
See http://www.retrovirology.com/content/7/1/57 for summary.
It can be seen in its entirety on Provisional at
http://www.retrovirology.com/content/pdf/1742-46907-57.pdf
To evaluate a possible association with XMRV with CFS, the CDC tested
blood specimens from 51 persons with CFS and 56 healthy persons and
were from previous study groups of people who had taken part in
population-based studies of CFS in Wichita, Kansas and in
Georgia. Patients in Georgia had been referred by physicians to a
registry of fatiguing illness and had met the criteria of the 1994
International CFS Research Case Definition.
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
13 years, 10 months
THE XMRV QUESTION
by Lydia Neilson
Dear Friends:
As you are aware, the Whittemore Peterson Institute (WPI) announced
that the XMRV retrovirus had been found in ME/CFS blood samples and
also in FMS, although only a small amount of blood samples had been
tested for FMS. This retrovirus was first discovered in some people
who have prostate cancer.
As a precautionary measure, Canadian Blood Services announced that
people with ME/CFS could no longer give blood donations. This
affects all of Canada except for the Province of Quebec who has its
own blood agency, HEMA Quebec, which is doing its own investigations.
The question has arisen, can a person be tested in Canada for XMRV
and the answer is in the negative. Testing is being done in the U.S.
and some Canadians have gone there at their own expense to get
tested, with varying results.
It is important to remember, that this is research at the moment.
Before we know what role XMRV plays with ME/CFS and FMS, the tests
must be replicated by independent research and once that is
done, then the next question becomes, is it the cause or another way
of contracting the illness? We hope that these questions can be
answered by the time we have the 2011 conference and we can move on
to the next steps.
In the meantime, unless you are involved in a research study, to get
tested for XMRV will lead to more questions than answers. Once you
have been tested, what can be done with that information? What does
it mean to your doctor? In addition, if you are on insurance
disability and the test comes back negative, it may work against you
and the insurance company may give you a hard time and cause you
problems with your disability pension.
What XMRV has done is bring an interest in research and leading to
funding That is a good thing. Due to the extensive research, a
different outcome may occur than what we presently know.
Please rest assured that the National ME/FM Action Network is keeping
a watchful eye on the situation and will keep you informed.
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
13 years, 10 months