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Professional
Organizations
IACFS/ME
"The mission of the IACFS/ME is
to promote, stimulate and coordinate the exchange of ideas related
to CFS, ME and fibromyalgia (FM) research, patient care and
treatment. In addition, the IACFS/ME periodically reviews the
current research and treatment literature and media reports for
the benefit of scientists, clinicians and patients. The IACFS/ME
also conducts and/or participates in local, national, and
international scientific conferences in order to promote and
evaluate new research and to encourage future research ventures
and cooperative activities to advance scientific and clinical
knowledge of these illnesses."
Simmaron Research
"Our mission is to play a key role in bringing
science to the clinician to better diagnose, treat, and manage
patients with CFIDS/ME. We will help fund and conduct pilot
studies to determine diagnostic markers and potential treatments
for CFIDS/ME. We will openly share our findings with the
scientific and medical communities to help develop translational
science that ultimately improves the quality of life for people
suffering from CFIDS/ME. We envision a future where CFIDS/ME
is a treatable disease. Simmaron Research Foundation is
dedicated to helping make this vision a reality."
ME Research
UK
"ME Research UK is a national UK charity funding biomedical
research into Myalgic Encephalomyelitis (also known as ME/CFS).
Our principal aim is to commission and fund high-quality
scientific (biomedical) investigation into the causes,
consequences and treatment of ME, but we also have a mission to "Energise
ME Research".
Our in-house team is involved in:
Identifying potentially important biomedical projects
Publishing scientific papers on biomedical aspects of the illness
Producing high-quality professional reviews and reports
Presenting research at meetings and conferences
Facilitating research applications by established researchers to
grant-awarding bodies."
Nightingale
Research Foundation
"The Nightingale Research
Foundation is a charitable foundation located in Ottawa, Canada.
The Foundation was incorporated in 1988 to conduct and assist
research into the cause and cure of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome (M.E./CFS) and to serve as an educational
institution for the Canadian public, physicians, nurses, teachers
and their professional societies.
Our Foundation is named after Florence Nightingale, who fell ill
with an infectious disease during her service in the Crimean War.
She then developed a disease process that was indistinguishable
from M.E./CFS. Despite her severe disability, and the fact that
she was a virtual shut-in for the rest of her life, she went on to
reform both public health and health care, helping to bring
medicine and particularly the care and treatment of the ill
patient into the twentieth century."
HHV-6 Foundation
"The HHV-6 Foundation is a
non-profit entity formed in 2004 to encourage scientific exchange
among scientists and to provide pilot grants for promising
scientific and clinical research. An important mission of the
foundation is to disseminate new knowledge about this virus. While
many clinicians believe it to be ubiquitous and benign, new
research suggests that chronic HHV-6 infections can become
pathogenic. The Foundation seeks to help scientists prove or
disprove the disease associations that have been suggested for
HHV-6." HHV-6A is known to cause encephalitis, and has been
linked to ME/CFS. A summary of the May 2006 conference in
Barcelona includes reviews of studies involving HHV-6 and ME/CFS
patients.
Enterovirus Foundation
Extensive info on EV, including symptoms, associated afflictions
(such as ME/CFS), diagnostics, treatment, research and much more.
"Even though the Enterovirus Foundation is just getting started,
we have big plans for 2009. Here are our prospective projects:
"Determine the role of EV in disease... Find
antiviral compounds for effective treatment... Develop better
diagnostic capabilities for "hard to detect" enteroviral
infections... Accelerate communication across the research and
medical communities... Raise public awareness and improve
education about enteroviruses...."
CFS Research
Foundation
"The CFS Research Foundation is
dedicated to supporting high quality research aimed at
understanding the basis of CFS/ME and developing a reliable
diagnostic test and specific treatments." This U.K based
group has published on immune, genetic and other aspects of ME/CFS,
and currently has a large study underway to develop a diagnostic
test for ME/CFS.
Research
Article Collections
ME Research UK Research Database
The most comprehensive
collection we're aware of on the web.
CFS
Research
David Axford's ME & CFS References
Alison
Hunter Memorial Foundation
Pub Med Article Search
Journal of Chronic Fatigue Syndrome
Doctors/Researchers
David S. Bell, M.D.
Joseph H.
Brewer, M.D.
Paul Cheney, M.D.
Derek
Enlander, M.D.
Hunter Hopkins
Center
Byron Hyde, M.D.
Dr. Leonard Jason
Nancy Klimas, M.D.
A. Martin Lerner, M.D.
New Jersey Research Center for CFS
Dr. Benjamin Natelson
Dr. Martin L. Pall
Daniel Peterson, M.D.
Dr. Robert J. Suhadolnik
Research &
Diagnostic Labs
VIP DX
Viral Immune Pathology Diagnostics (formerly RedLabs USA)
Does XMRV testing, 37-kd RNase-L and related immune function testing.
Red Laboratories, Belgium
Does 37-kd RNase-L and related immune function testing.
Wisconsin
Viral Research Group
Does immune function testing relative to ME/CFS; specializes in
HHV-6 and EBV
General
Information
Co-Cure
"The name 'Co-Cure' stands for
'Co-operate and Communicate for a Cure.'" Co-Cure highlights news
and research, general information and maintains an international email news
list.
M.E. Society of America
Definitional info, research
info, advocacy articles and editorial comment. Excellent
descriptions of ME/CFS and the political history.
MEAction
U.K.
Highly active and productive
group. Their website contains research and definition
articles, political actions and a link to their busy Yahoo forum.
Invest in ME
U.K. "Our aim is to bring
together like-minded individuals and groups to campaign for
research and funding to establish an understanding of the
Aetiology (causes), Pathogenesis (harmful effects) and
Epidemiology (the pattern of distribution of a disease through a
population) of M.E. This should lead to the development of a
universal "Thumb-Print Test" that can confirm the presence of M.E.
and, subsequently, medical treatments to cure or alleviate the
effects of the illness." News, research, patient stories and
more.
National
ME/FM Action Network of Canada
"...is a Canadian, registered,
non-profit organization dedicated to advancing the recognition and
understanding of Myalgic Encephalomyelitis / Chronic Fatigue
Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through
education, advocacy, support, and research. As our name
implies, we are an ACTION organization. We do not react to
unfairness, we act for change. We are actively involved in issues
that affect individuals who have myalgic encephalomyelitis /
chronic fatigue syndrome and / or fibromyalgia syndrome. We assist
our membership through education, advocacy, support, and
research." This is the organization that "spearheaded
the drive for the development of an expert
consensus document for
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)."
Alison
Hunter Memorial Foundation
Based in Australia, AHMF provides research, advocacy, news and
other info. "The Foundation is an enduring memorial to Alison
Hunter and all those whose lives have been devastated by ME/CFS.
Alison died in 1996, aged 19, from complications arising from ME/CFS
which included seizures, paralysis, gastrointestinal paresis and
overwhelming infection resembling Behcets Disease. Such
complications are rare and only present in a severe subgroup.
Alison courageously fought ME/CFS for ten years and was an
unstinting advocate for young people."
Axford's Abode
A gold mine of ME/CFS info. "Our website aims to provide
factually accurate, reliable and up-to-date information about
chronic fatigue syndromes. The summaries of the research are
compiled and checked by qualified health professionals with more
than ten years experience in this field. The editor is a chartered
health psychologist and psychophysiologist who has followed the
research on ME since 1984. [Dr.
Ellen Goudsmit]"
A Hummingbird's Guide to M.E.
Severe M.E. sufferer Jodi
Bassett from Australia manages to maintain an extensive
informational website. Numerous research articles,
editorials, advocacy issues, patient support and quotes.
MEFreeForAll.org
"ME Free For All is a single meeting place for people with M.E.,
their carers, doctors and researchers to gather. Everyone
concerned with M.E. may have access to the same information and
exchange views here."
CFS-Information International
Lists many research and other articles.
TCJRME
The Committee for Justice and Recognition of
Myalgic Encephalomyelitis "is an international patient based
association dedicated to promoting Justice for the victims of
Myalgic Encephalomyelitis; and we are dedicated to achieve the
full public Recognition of the dangers of this worldwide disease
epidemic. The Committee supports educational efforts toward
the recognition that Myalgic Encephalomyelitis is a complex
multi-systemic disease, producing neurological and metabolic
dysfunctions. ME is a devastating disease from which few recover,
and results in a large number of people permanently disabled."
History, politics and advocacy education for ME/CFS patients and
caregivers.
The ME/CFS Information Page
by Mary Schweitzer, PhD
CFS/FM Support Group - Dallas/Fort Worth
This Northern Texas support group offers general
ME/CFS info, and includes articles on most of Dr. Paul Cheney's
treatment protocols.
Wisconsin Chronic Fatigue Syndrome Association, Inc.
"Serving Those With Myalgic Encephalomyelitis (ME)
and Chronic Fatigue Syndrome (CFS)." A nationally active
group.
CFSFacts
A site dedicated to dispelling the the myths about ME/CFS.
Vermont CFIDS Association
"The Vermont CFIDS Association Inc., has passed
legislation to educate primary care physicians about CFS/ME.
Follow the progress as they circumvent resistance with material
that wasn’t taught in medical school. Turning the tides of modern
medicine is no small task."
Bringing Ryan Home
ME/CFS patient, Ryan Baldwin, son of Lisa and Rodney Baldwin,
was unjustly removed from his parents' care by Social Services
for having this misunderstood and maligned neuroimmune disease.
After years of legal and medical struggles Ryan has finally been
returned to his family now, but he and his family continue to
share their experiences for the benefit of other ME/CFS families
who still struggle with similar systemic abuse. "This
website is about our struggles as we try to educate a community
regarding our son's illnesses. We never once stopped fighting
for our son’s return. We fought hard and with all we had –
financially, emotionally and physically, to regain custody of
our son. This is our story and through this website we hope to
educate families and the public."
25% M.E. Group
"The 25% ME Group is a unique nationwide charitable
organisation [UK] managed entirely by volunteers (most of whom are
severely affected by ME) and was set up to offer support services
to those severely affected by ME (Myalgic Encephalomyelitis), and
their carers. The group is also supported by two part-time admin
staff. We provide a wide range of services to people affected by
severe ME many of whom are virtually housebound and/or bedbound."
The M.E. Association of Ontario
"Mission Statement: to provide M.E. sufferers with support,
current information and direction to the best possible
professional services; to educate the public on the illness, its
debilitating effects, and concomitant social and economic
consequences; and to promote, facilitate and raise funds for
research on the causes and cure for Myalgic Encephalomyelitis."
ME/CFS
(Swedish) Myalgisk Encefalomyelit - Kroniskt Trötthetssyndrom -
information för läkare och patienter (Myalgic Encephalomyelitis -
Chronic Fatigue Syndrome - information for doctors and patients)
"Swedish internet site made by ME patient with link collection for
doctors, patients and media. One page collects links about vitamin
B12 injections for ME patients. Text in site mostly in Swedish,
but most the links are to English pages."
MEsite
ME info in English and
Danish. "...an informational website dealing with
various aspects of ME and the life with ME, with Research and with
International matters."
Norges
ME-forening
Norwegian ME Association
European ME Alliance
"The alliance was formed in 2008 by national
charities and organisations from Belgium, Denmark, Germany,
Ireland, Norway, Sweden and the UK."
Sophia and M.E.
Sophia Mirza's mum, Criona Wilson: "Sophia died from M.E. in
November 2005. The day before she died I promised Sophia that her
life would help many other people." Criona publishes
documents exposing M.E. patient abuse. "The coroner gave the
cause of Sophia’s death as : SHE DIED AS A RESULT OF ACUTE RENAL
FAILURE ARISING FROM THE EFFECTS OF CHRONIC FATIGUE SYNDROME (also
known as M.E.)."
Stonebird
Caregiver Greg Crowhurst and his severely disabled wife Linda
reach out with the realities of isolation, financial hardship
and neglect most of us with severe ME have known for years,
often decades. "The Stonebird represents the idea that you
don't have to do anything to be of beauty and value in the
world. Even if you cannot move, even if you cannot communicate,
even if you cannot think, still you are precious and your
presence matters."
Books and other reading
Missed Diagnoses
"Thirty years ago when a patient presented to a hospital clinic
with unexplained fatigue, any medical school physician would
have told the students to search for an occult malignancy,
cardiac or other organ disease or chronic infection. The concept
that there is an entity called chronic fatigue syndrome has
totally altered that essential medical guideline. Patients are
now being diagnosed with CFS as though it were a disease. It is
not. It is a patchwork of symptoms that could mean anything. The
original concepts of searching for occult disease are relevant
to patients today with CFS, ME and other fatiguing illnesses.
Furthermore, because you do not find pathology does not mean
there is none."
Byron Hyde MD
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical
Working Case Definition, Diagnostic Treatment and Protocols A
Consensus Document
Carruthers et al; co-edited by De Meirleir and McGregor
The clinical case definition was developed by an expert medical
consensus panel of treating physicians, teaching faculty and world
leaders in the research of ME/CFS. The definition more
adequately reflects the complexity of symptoms of a given
patient’s
pathogenesis and should establish ME/CFS as a distinct medical
entity and help distinguish it from overlapping medical conditions
in the absence of a definitive laboratory test. "It is now
possible to define abnormalities in the neurological, immune,
autonomic, and neuroendocrine systems in a concise way that can
paint a portrait of this disabling illness. The Canadian
Consensus document should be read and studied by every
medical provider."
--David Bell, M.D.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical
Case Definition and Guidelines for Medical Practitioners
Bruce M. Carruthers, Marjorie I. van de Sande
A concise overview of the above document. Every patient and
health care provider should have a copy. "This is THE MANUAL
for diagnosing patients with ME/CFS." -Charles Lapp, M.D.
ME/CFS Guidelines
"A taskforce of South Australian clinicians and others with
experience in ME/CFS have developed this more succinct set of
guidelines for GPs and other medical practitioners. It
focuses on the basic diagnosis and managements of the condition in
the community or primary care setting."
The Clinical and Scientific Basis of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome
Edited by Byron Hyde, M.D.
"Eighty of the world's leading M.E./CFS authorities have
contributed their knowledge to produce a 725-page encyclopedia on
the disease process that may be one of the biggest single causes
of chronic illness in the world today. Known in the United States
as Chronic Fatigue Syndrome and in Great Britain both as Myalgic
Encephalomyelitis and Post-Viral Fatigue Syndrome, M.E./CFS has
provoked a chronic disabling illness in an estimated 1,000,000
persons in North America and Europe.
This is an essential reference
book for medical, government and public library reference rooms.
This text is a unique vehicle for researchers, physicians and
other health education and government officials, and is easily
understandable by the general public interested in M.E./CFS."
Though published in 1992, this book still remains one of the most
comprehensive and relevant references on this disease.
Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome and Other Organ Pathologies
Dr. John Richardson Physician, Newcastle Research Group, England
Share the results of 45 years of front-line medical research!
This valuable book covers varied organ pathology in a wide range
of syndromes induced by viral infection and toxin exposure.
Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome and Other Organ Pathologies discusses such lethal
problems as cardiomyopathy, liver failure, pancreatic cancer,
brain tumors, and renal disease, as well as the debilitating
disorders of myalgic encephalomyelitis/chronic fatigue syndrome
and other post-viral syndromes. This essential text is profusely
illustrated with photographs, photomicrographs, charts, EKGs,
X-rays, and graphic depictions of other medical test results.
Chronic Fatigue Syndrome: A Biological Approach
Edited by Patrick Englebienne & Kenny De Meirleir
Summarizes the most recent advances made in this field and
discusses insights that support CFS as a distinct and specific
physical disease. Because of the multifactorial aspects of the
disease, the book addresses various fields of the biomedical
sciences, such as protein biochemistry, virology, and
pharmacology.
Handbook of Chronic Fatigue Syndrome
Leonard A. Jason (Editor), Patricia A. Fennell (Editor), Renée R.
Taylor (Editor)
"Highly recommended for all academic, medical, and hospital
libraries as well as all who are concerned with this complex
disease." (Medical Reference Services Quarterly, Vol.23, No.3;
Fall 2004)
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome
Epidemic
Hillary Johnson
Johnson interviewed hundreds of patients, scientists, doctors and
government officials, building a devastating picture of the U.S.
government research establishment's decade-long (now two
decades) strategy of avoidance and denial. She combines
heartbreaking stories of the irreversible effects this disease has
on its victims' lives with profiles of the scientists who have
dedicated themselves to finding the cause and a cure.
Faces of CFS
David S. Bell, MD, FAAP
Case Histories of Chronic Fatigue Syndrome by one of the leading
experts in the field. Dr. Bell offers this book in PDF
format for free on his website. He also demonstrates in this
publication his compassion that few doctors these days have for
their patients. "As a group, CFS patients have something
vast in scope and vitally important to teach all of us.
Doctors, in particular, who are unfamiliar with the faces of CFS,
will never really understand the disease from reading a scientific
article. They can, however, learn a great deal from simply
talking with someone who suffers from it."--Dr. David Bell
Betrayal by the Brain: The Neurologic Basis of Chronic
Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural
Network Disorders by Dr. Jay A. Goldstein
"In his trademark, revolutionary style, Dr. Goldstein uses his
model of neural dysregulation to incorporate basic neuroscience
research into pathophysiology and treatment. Betrayal by the Brain
presents a comprehensive thesis that clearly defines the
biological basis for many of the varied symptoms experienced by
chronic fatigue syndrome patients."
Summary of Goldstein's text by Dr. J. A. Sherkey.
News and
Editorial
Co-Cure
Co-Cure maintains a substantive
ME/CFS
news email list, and a vast archive dating back to 1996.
They also have a
discussion forum.
Phoenix
Rising
CFS sufferer Cort Johnson does an excellent job of interpreting
complex research articles into lay terms for those of us who are
"scientifically-challenged." He also comments on other
happenings around the patient, clinical and research ME/CFS
community.
The
CFIDS Report
Craig Maupin reports on news around the ME/CFS patient, clinical
and research community.
The ME-CFS Information Page
Commentary and information by Mary Schweitzer.
Videos & DVDs
The INTERNATIONAL ME/CFS CONFERENCE 2009
- The 4th International ME/CFS Conference 2009 took place on 29th
May 2009 in London and was attended by presenters and delegates
from 14 countries and four continents.
The 3rd Invest in ME INTERNATIONAL ME/CFS Conference 2008 -
The 3rd International ME/CFS Conference 2008 took place on 23rd
May 2008 in London and was attended by presenters and delegates
from 13 countries, from Europe, USA, Australia, New Zealand and
South Korea.
The International IiME ME/CFS Conference 2007
"The 2nd International ME/CFS Conference 2007 took place in early
May 2007 in London and was attended by presenters and delegates
from 12 countries, from Europe, USA, Canada and even South Korea.
An amazing amount of knowledge was presented showing the organic
nature of myalgic encephalomyelitis."
CFS: The Heart of the Matter
This outstanding seminar contains important, fascinating and
unique material that will eventually be published. There is an
overview of chronic fatigue syndrome, an in-depth look at the
cardiovascular issues in CFS, a new model of the illness, and a
full update on Dr. Cheney's latest study, including the treatment
protocol.
The ME Conference 2006
An Update on Clinical Diagnosis, Research Trends and Educational
Support
Presentations by:
Professor Malcolm Hooper Emeritus Professor of Medicinal
Chemistry, University of Sunderland
Dr. Byron Hyde Nightingale Research Foundation
Dr.Bruce Carruthers Principal Author of the Canadian Guidelines
Jane Colby Former Head Teacher; Executive Director of Tymes Trust
Dr. Jonathan Kerr Sir Joseph Hotung Senior Lecturer in
Inflammation, St George's University of London
Professor Basant Puri Consultant at Hammersmith Hospital
Dr. Ian Gibson MP MP for Norwich North and chair of the Proposed
Inquiry into ME
National ME/FM Action Network
Offers DVDs of the 2006 Calgary lectures by Dr.
Kenny De Meirleir, Dr. Pierre Flor- Henry (limited time offer),
and Dr. David Bell.
Engaging With M.E.
Dr. Malcolm Hooper discusses the research and politics of ME/CFS
in his 2005 seminar in Norfolk (UK).
Dr. Hooper and ME Support Norfolk have made this DVD
copyright-free so it can be easily and widely distributed.
Medical Terminology
mondofacto
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