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Visit us at canadaconsensus.ning.com!
My essays on ME/CFS
HHV-6 Foundation
Ramsay's definition of M.E.
What it was like
to have M.E.
"Help Us!" Leaflet
Disability Insurance Issues
Links to
ME/CFS Info
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In 2001, an international committee of physicians and researchers created a new clinical diagnostic definition
and set of treatment guidelines for ME/CFS. The
National ME/FM Action Network of Canada spearheaded the drive
for the development of the guidelines, and the committee was chosen through Health Canada. The result, known
as the Canadian Consensus Document for CFS (there is also one for fibromyalgia) was published in the
Journal of Chronic Fatigue Syndrome in 2003. Dr. Bruce Carruthers and Marjorie van de Sande wrote
a 30-page Overview that can be downloaded or ordered as a pamphlet. You can find the Overview of the Canadian
Consensus Document for ME/CFS in four languages besides English at:
http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx
There are also links to a separate Consensus Document, and Overview, for Fibromyalgia, at the same website.
Patients in the United States have gone too long without doctors to diagnose and treat them! Let's take the issue
to Congress. The U.S. needs to adopt the international diagnostic criteria and treatment
protocol summarized in the
Canadian consensus document. You can
download the petition, get signatures, and mail them in. Or, if you can't do an on-the-ground petition,
then you can sign the petition by email and send it to me and I'll compile the names. Finally, there's a
sample letter so you can send a personal email to your Senators and Congressman. There's information about
the Consensus Document and various ways to participate in the campaign in the links below.
The international M.E. and CFS community has much to thank the National ME/FM Action Network of Canada for: having
worked with Health Canada to achieve the Consensus Document, writing the Overview of the Document, and maintaining
the Overview in pamphlet form and on the web. Those who would like to order copies of the Overview of the Consensus
Document in pamphlet form to distribute to doctors or patient groups should go to the following website:
http://www.mefmaction.net/Patients/Overviews/HowtoOrder/tabid/631/Default.aspx
M.E. and CFS don't have to be invisible
You can view videos of patients with M.E. telling their own story here:
http://www.youtube.com/group/mecfsmystory
AND, you can also become a member and put your OWN self-made digital video telling your own ME or CFS story there.
Many many thanks to Paul, who created this site.
Some of my own personal favorites on Youtube include:
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WHO's right? M.E. is neurological not psychiatric
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How does Myalgic Encephalomyelitis affect my life?
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Suffering from M.E.
- A short CFS documentary
-
BOD gets M.E.
I'm not sure I should admit to liking that last one, but it's a doozy. Hey, you need a sense of humor
living with this stuff.
Finally, take a look at this one,
Caring for someone with severe ME/CFS, and then just to the right,
click on the link to the other videos by Greg and his wife Linda.
At "Fatigue's Root" you'll find neurasthenia, but nothing resembling
M.E. or CFS
Washington Post science reporter Jennifer Huget wrote on 4 March 2008, that the root of fatigue lay in the
concept of neurasthenia. Huget's expert was British psychiatrist Simon Wessely, whom she quoted as saying
"Fatigue as a medical condition first appears in 1869 with George Beard, a New York neurologist, who coined
the term 'neurasthenia," meaning nerve weakness ... What was labeled neurasthenia in the 19th century is clearly
what we now call CFS," or chronic fatigue syndrome." Is it? Read my response to that reference to Beard,
commonly cited by not only Wessely, but also the late U.S. expert on CFS at NIH, Stephen Straus, here:
At "Fatigue's Root" you'll find neurasthenia, but nothing
resembling M.E. or CFS.
Whittemore Peterson Institute for Neuro-Immune Disease The University of Nevada
has broken ground on a new building to house the
Whittemore Peterson Institute for Neuro-Immune Disease. Researchers there will continue
advances in molecular medicine and other avenues for both answers - both tests and treatments - to
ME/CFS. Reno, Nevada, is also home to Redlabs USA, where
patients can be tested for the 37kDa Rnase-L Factor, HHV-6A, and other abnormalities related to
ME/CFS, as well as the new HHV-6 Foundation
dedicated to the study of both variants of human herpesvirus 6, or HHV-6. While HHV-6B is common in the
general population (it causes the childhood disease roseola), active infections of HHV-6A are relatively rare.
HHV-6A is known to cause encephalitis, meningitis, and cases of myocarditis. Hopefully the new foundation for
the study of HHV-6 will encourage research that can shed light on the presence of active HHV-6A in patients
undergoing cancer treatment, and patients with ME/CFS, AIDS, and Multiple Sclerosis.
Corporate Collusion?
Professor Malcolm Hooper, Eileen Marshall, and Margaret Williams of the UK
have uncovered a "secret file on Myalgic Encephalomyelitis" being kept by the UK Medical Research
Council. According to these respected M.E. advocates, the secret file "contains records and correspondence since
at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023. This
present document is an overview of the misinformation and contradictions about Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS) that have pervaded some UK Departments of State and other agencies since 1988. It also
considers the involvement of certain UK psychiatrists who have proven vested interests in the propagation of
this misinformation that is contrary to world-wide scientific evidence and that for two decades has resulted
in the medical abuse of UK patients with ME/CFS."
The File is available on the web at
www.meationuk.org.uk/Corporate_Collusion_2.htm thanks to the
M.E. Action UK.
The National Alliance for Myalgic Encephalomyelitis in the U.S.
The NAME-US website is invaluable for information and resources regarding efforts to
recognize Myalgic Encephalomyelitis in the United States.
See http://www.name-us.org/.
New Research Links CFS to an Enterovirus in the Gastrointestinal system
"New research links chronic fatigue syndrome to a particular type of virus that resides in the stomach,"
By CARLA WILLIAMS, ABC News Medical Unit, 13 September 2007. You can read the story
here. There were also articles in the BBC, CBC, London papers, and the Washington Post.
Drs. John and Andrew Chia found high levels of enteroviruses (polio or coxsackie type viruses) in
82 percent of 165 patients diagnosed with CFS, after analyzing samples of stomach
tissue taken through endoscopies. For decades M.E. researchers have followed evidence that
enteroviruses are a major culprit in that disease, and this research would seem to confirm that.
Other research on the virus HHV-6A and M.E./CFS can be found at the
HHV-6 Foundation. Research on the 37kDA RNase-L immune defect would suggest that
patients might be susceptible to more than one virus. It is not yet clear which causes what -
but the body of evidence mounting towards a combination of immune defects and viral assaults is
sufficiently strong that it should not continue to be ignored by the mainstream medical community. This
finding should also lead to treatments for patients; the authors suggested antivirals might be of use.
The Classic Definition of M.E.
Click here for Dr. Melvin Ramsays's Definition of
Myalgic Encephalomyelitis, from his 1986 textbook; revised in 1988.
The Nightingale Definition of M.E., by Byron Hyde
Another new definition and set of diagnostic criteria has been offered by
Dr. Byron Hyde of Canada, who has been studying this disease for a quarter
of a century. Dr. Hyde considers Chronic Fatigue Syndrome to be a misdiagnosis -
either the patient has M.E., or the physician needs to figure out what is wrong.
CFS itself is meaningless. It is a condition found in all serious illnesses,
not a disease in and of itself. Click on
The Nightingale Definition for Dr. Hyde's criteria.
Research Conference on Myalgic Encephalomyelitis in London, May 1-2, 2007
I was fortunate enough to attend the research conference held in London on May 12, 2006, to publicize
research about the physicality of the illness M.E. For information about the group behind both
conferences, go to their website: Invest in M.E..
DVD's of the 2007 conference are now available (in a format that can be used with U.S. and Canadian machines
as well as those in a European format) - and well worth it. There are four DVD's in the set. Speakers included
two members of Parliament, researchers Jonathan Kerr, Kenny De Meirleir, Dan Peterson, Vance Spence,
Malcolm Hooper, Byron Hyde, Martin Pall, Abhijit Chaudhuri, Sarah Myhill and Nigel Speight; plus patient
advocates Annette Whittemore (from the Whittemore-Peterson Institute for neuroimmune diseases in Nevada, USA), and
Ellen Piro, who was instrumental in the adoption by the Norwegian government of a model of biological causation
in M.E. (and the rejection of the "biopsychosocial" or somatization model popularized by British psychiatriss).
Patient groups might want to purchase a copy, view one or two talks at a time and perhaps discuss the contents.
CDC and NIH need to focus on urgency: existing testing and treatment for various subgroups
of patients with ME/CFS must be funded now. CDC admits that over 1 million adult Americans suffer
from this severely disabling illness. Research funding is almost nonexistent, but there has already been
over 4,000 articles into biological causes and treatments. The patient awareness program currently
underway must contain an unbiased picture of the available evidence from scientific journals and clinical
specialists. For my testimony on this issue, see
Mary Schweitzer's Testimony to CFSAC November 20-21, 2006.
Gibson Inquiry Report Now Available on Web
The conclusions of the report by Ian Gibson, M.P., and his committee in the UK Parliament is now available
on the web. It is certain to spark discussion and debate. I took from it the strong statement that there
is insufficient research funding into biological causation and treatment for a disease of this severity that
impacts so many British citizens. The report is available here:
Inquiry into the status of CFS/M.E. and research into causes and treatment, November 2006.
The response of the group Invest in M.E. is also available now. Click here:
Invest in M.E.'s website.
The Rnase-L Factor and HHV-6, Variant A
I was diagnosed with both the Rnase-L Factor and HHV-6, Variant A, in the fall of 1998. I started taking
medication for both in 1999, and it has helped me tremendously. I am not saying that everybody with an
ME-CFS diagnosis has this, but I would heartily recommend that if you have a lot of the brainfog side with your
ME-CFS symptoms, along with pain behind your eyes and in the back of your neck, you consider these tests. For
information about the Rnase-L Factor, go to my Rnase-L Enzyme Dysfunction
website, and for information about HHV-6, Variant A, go to
The HHV-6 Foundation. I believe that most people diagnosed with M.E. probably have the Rnase-L Factor,
and at least half of patients in the United States with CDC-defined CFS probably have it as well - which
would mean 500,000 Americans have it. The CDC does not approve of the testing, so we patients have to do it
ourselves to find out just how many of us have it.
New Books on ME/CFS
Osler's Web, journalist Hilary Johnson's pathbreaking book published in 1996 about the story behind the disease labeled
"chronic fatigue syndrome," is now available in paperback, including new material.
It's available at Amazon, or at the publisher's:
Osler's Web at BackinPrint.com. For a completely different approach, see Peggy Munson's
edited book of essays by patients with CFIDS/M.E. and fibromyalgia:
Stricken: Voices from the
Hidden Epidemic of Chronic Fatigue Syndrome. Katrina Berne's
new book, Chronic Fatigue Syndrome, Fibromyalgia, and Other
Invisible Illnesses, is also able at
Amazon.Com. Finally, the new version of the classic Our Bodies,
Ourselves is available from the Boston
Women's Health Collective and contains an excellent description of
the disease and some of the issues surrounding it.
Recommendations by CFSAC to U.S. Secretary of DHHS
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the
United States Department of Health and Human Services (DHHS),
after careful consideration, has sent a set of 11 recommendations
to the Secretary of DHHS. The Secretary of DHHS has responded with, basically a non-response.
Although the Secretary has sent some able and talented assistants to work with the
committee, the explanation of ex officio members that "nothing more can be done than what
is already being done" should not satisfy anyone. I still believe these well thought
out, concrete suggestions, need to be considered more thoroughly. The patient
publicity campaign has been an improvement over prior policies, but we are still
left with no change in CDC's recommendations as to what patients and doctors do. The
new CFS Toolkit for Professionals devotes a two-sided page (out of six) to cognitive
behavior therapy and only a paragraph to pharmaceutical treatments. I think we
need to continue to consider these recommendations. Let your congressman and
senators know that one million people are desperately ill, and we need more - more
research funding, more diversity of research (beyond the CDC's conviction that this
disease is merely the result of an inability to "handle stress") and a concerted
effort to get patients diagnosed and treated. Again, I suggest the
Canadian Consensus Document (see above) as a more useful handout to give your physician,
and I think we need to rethink these recommendations. You can find the 11 recommendations
at the following website:
CFSAC's 11 Recommendations. The letter in full is available in html
at: CFSAC letter, and
in Adobe Acrobat at:
CFSAC letter in
The petition for the U.S. to adopt Myalgic Encephalomyelitis (M.E.) along with the
Ramsay or Hyde definitions can be found here:
http://www.rescindinc.org/me-petition.html
The "Fair Name" petition initiative, which advocates for the name ME/CFS,
where M.E. can stand for Myalgic Encephalomyelitis OR Myalgic Encephalopathy, is here:
http://www.afairname.org/cause.cfm
Note: These two petitions conflict with each other. One advocates adopting Myalgic Encephalomyelitis (M.E.)
in the United States for the disease known for years in the U.S. as Epidemic Neuromyesthenia, which has been
subsumed within "chronic fatigue syndrome" since 1988. The second petition offers two compromises: M.E./CFS
obvioiusly continues to use CFS. M.E. no longer would stand for Myalgic Encephalomyelitis, as it has for a half
century in England. It is thought of as a middle way until CFS can be discarded.
Some patient advocates and researchers believe that Myalgic Encephalopathy, which carries no implication of
inflammation, would more readily be adopted by researchers internationally. They also believe "encephalopathy"
(brain damage) to be more accurate than encephalomyelitis (encephalitis and meningitis, usually taken to mean
enephalitis plus significant CNS dysfunction). Many patients and clinicians in some regions
of the world still use Myalgic Encephalomyelitis. The idea was for M.E. to mean either Myalgic Encephalomyuelitis
or Myalgic Encephalopathy, and to decide later which was the more appropriate name after scientiic
breakthroughs made that more clear. Consequently, the initials M.E. are intended in the "Fair Name" petition to
mean whatever you want them to mean. It is your choice which petition, if any, you choose to support - but they
are not compatible or interchangeable.
Finally, there is the petition to adopt the International (Canadian) diagnostic and treatment protocol for M.E./CFS
in the United States. For that petition, go to:
Petition to adopt the Canadian Consensus Document for ME/CFS in the U.S.
To discuss and debate the issues raised in these petitions, you can go
to this website:
http://canadaconsensus.ning.com/
As long as the language is civil, it is perfectly okay (and indeed expected) to disagree.
To return to the top of the page, click Return to the top of the page.
This web domain is owned and written by
Mary Schweitzer, a former college professor who has had the
Disease since the fall of 1994. I
have been diagnosed with chronic Epstein-Barr; HHV-6 (Variant A), and
the 37kDa Rnase-L Factor (Rnase-L Enzyme Dysfunction Disease). I have
improved using the experimental drug Ampligen, but I continue to have
NMH/POTS, restless leg syndrome, Hashimoto's hypothyrodism, and
fibromyalgia. You can read my story here:
Mary's story.
If you want to write me at me-cfs@comcast.net,
please put "ME-CFS" in the subject line so I can tell that it isn't a spam!
Nearly a million adult Americans have this disease, and at
most, only 15 percent have a diagnosis. The NIH claims there
simply aren't enough researchers willing to review studies about
CFS, and even if there were, they don't get enough quality
submissions. The CDC repeats the same study over and over again,
demographic studies that blur the definition and lead to nothing
constructive. On their website, they write "There are no tests
and there are no treatments." I'm proof that there are, but neither
the CDC nor the NIH wants to devote time or money to them.
It is difficult to be doing so much better, while my friends
deteriorate physically, and sink deeper into financial distress.
Until we get more help from the community at large, I hope these
webpages can offer some assistance.
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