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Ramsay's definition of M.E.

 

Komaroff Sumarry
2009 IACFS/ME
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2009 InvestinME Conference

 

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I have a new blogsite!

Check it out - anybody can read the posts; if you want to comment, you have to sign in. My new blogsite is: Slightly Alive


XMRV - The Retrovirus behind the misdiagnosis of CFS

In the October 9, 2009, issue of Science, a highly respected academic journal, scientists J. Mikovits and others published the first sound evidence that a retrovirus is associated with the disease outbreak of the 1980s that the U.S. CDC named "chronic fatigue syndrome."

For my best current explanation as a Ph.D. in a social science, a victim of the disease, and a patient advocate, please read my essay on XMRV, XAND, CFS, and M.E..

If you to go my blog Slightly Alive, you can add comments as well.

There is no way to underestimate the significance of this finding. To date, there are only 3 known human retroviruses. Congratulations to the Whittemore-Peterson Institute, the Cleveland Clinic, and the scientists at the National Cancer institute who collaborated on this pathbreaking study. The Whittemore-Peterson Institute is a private foundation created 5 years ago by the parents of a young woman who had been sick with the disease for two decades, while CDC has done nothing. They are affiliated with the University of Nevada. If you can contribute just $10 to help them continue their work on the biomedicine behind ME/CFS, go to their website for donations to the Whittemore-Peterson Institute.


5th Annual Invest in ME Conference in London, 24 May 2010

Once again the group Invest in ME has put together a great one-day international conference on ME/CFS, to be held in London, right across the street from Parliament. This year the conference will be held 24 May 2010. For the conference schedule, go to to the Conference Home Page I was fortunate enough to attend the research conference held in London on May 12, 2006. It was a fantastic experience. This year there is a focus on enteroviruses and on the new retrovirus XMRV. The speakers are all knowledgeable about the biomedical foundations of this disease. If you can go, you should. If not, they will probably make DVD's available for sale as they have in the past.


CFSAC meeting in Washington, DC

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the U.S. Department of Health and Human Services (DHHS) is meeting on Monday, May 10, 2010. You can watch the meeting live-streamed on internet while it is going on. The video will be available to see after the meeting, too (as is true of several of the CFSAC meetings).

To see the May 2010 meeting of CFSAC, go to: http://videocast.nih.gov/. After May 10, click on the link to "past events" on the left side of the page.


Report to Obama-Biden Transition Team

Our report from our ME/CFS health care group has been included to represent my state of Delaware on the White House's new Health Care website:
HCCD Report Delaware, HealthReform.Gov

In mid-December,2008, the Obama-Biden Transition Team asked for community discussions on health care. Reports from these meetings were uploaded and sent to the health care transition group woring with Tom Daschle, Secretary Designate of the Department of Health and Human Services (DHHS), where NIH, CDC, FDA, and public health are housed in the United States. We were also asked to send in personal stories.

A small group of us met on internet and wrote a report that was sent in by the deadline of January 4, 2009. The reports are now available on the web. They may be downloaded and used for any purpose that will help people who share our disease - as long as no changes are made.

Use the reference to the government's Health Care Reform website to add legitimacy to our cause - use quotes from it, and cite it as "HCCD Report Delaware, HealthReform.Gov".

But it's a bit easier to read in the formats we already had online:

1. The report alone (15 pages), in pdf format;
2. The report plus the personal stories (36 pages), in pdf format;
3. The report in html, available at the Vermond CFIDS Association's website.

Pat Fero, Steven Du Pre, Karen Campbell, Rik Carlson, Meghan Shannon, Carol O., PSB, Sue C., and Mary Schweitzer
Ad Hoc Committee to Inform the Obama Transition Team About ME/CFS Issues


International Diagnostic Definition and Treatment Protocol from Canada Protocols

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.


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:

  1. The Realities of ME/CFS by Fogggygyrl
  2. WHO's right? M.E. is neurological not psychiatric
  3. How does Myalgic Encephalomyelitis affect my life?
  4. Suffering from M.E.
  5. A short CFS documentary
  6. 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.

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.

Finally, I tried one of my own to go with the Obama report: Why we need to take ME/CFS seriously.


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.


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


Petitions on Names: M.E., and M.E./CFS

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 marys@cfids-me.org, 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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