Mary Schweitzer's Page

Welcome to my new website within the larger ME-CFS Community blogspot. Thanks for making this possible, Dan.

If you are looking for my blog, you will find it here:

Mary's Blog

In January 2008, the gentle physician who headed the hematology/oncology practice where I had been receiving Ampligen by twice-weekly infusions since May 2008, died. He was not my own doctor, but technically I was in an open-label, cost-recovery study, and technically that required a "principal investigator" registered with FDA - and it was the principal investigator who died. The practice reapplied twice for permission to get me (and a young patient in a wheelchair) back on Ampligen, but we were denied because of paperwork problems some years earlier when they had some staff problems.

Seven months later, September 2008, I relapsed. It began with a wicked case of Epstein-Barr - swollen glands, fever, and I felt awful. It was hard to imagine that just a week earlier I had been able to drive and walk on the beach. I now have cytomegalovirus (CMV), HHV-6 (Variant A), and HHV-7. I have the 37kDa Rnase-L defect and my natural killer cell function is around 2%. I do not yet know if I have XMRV, but if I don't, I don't know what can explain all this.

As a result, I am now very sick; often bedridden. I use a cane or a walker, and I do not leave the house without a wheelchair.

We have searched, and waited, and waited, and searched, but there is no doctor in a geographic space that is bounded by New York City to the north and Washington, DC to the south, who still offers Ampligen (mainly because of the paperwork).

Consequently, I will be moving in January to Lake Tahoe. Dr. Peterson has been my specialist for several years now (thanks to Southwest Airlines), but now I will have to leave behind my husband of 35 years, and rent an apartment. The people there couldn't be nicer, and anyone who knows me, knows I will love being in the center of the intellectual action. It will be hard leaving home, but I must remind myself that I am fortunate to be able to do so, fortunate to be able to see such a brilliant and caring physician, fortunate that my husband can work extra jobs to pay for the expenses, fortunate to have insurance, fortunate to have a family that supports me. Maybe I will see some of you there!

I have had M.E. since probably 1990, definitely since 1994. I say M.E. because I have myalgia (generalized muscle pain), significant cognitive dysfunction and significant central nervous system (CNS) dysfunction. In September my VO2 MAX score was 16 (anything below twenty qualifies for social security disability automatically). A SPECT scan “demonstrated decreased activity in the left lateral temporal lobe and occipital lobes.” A haltor monitor test last February turned out abnormal as well, adding to the neuro-cardiac heart problems.

I did well on Ampligen - not well enough to return to teaching, but well enough to write some - what I've published doesn't pay, and I do have a book on this disease but haven't published it. Of course, now it has to be revised!.

You can find other websites of mine here:
The ME and CFIDS Information page: The ME/CFIDS Information Page

and here:

Mary Schweitzer's Essays on ME/CFS.

Oh - the picture is me with my lovely granddaughter Kendall, which made getting to feel better worthwhile. I was already in relapse when I made the video in December 2008. The video was sent with our report to the Obama-Biden transition team.

The Obama-Biden transition team report on ME/CFS is in adobe here:
Just the report: http://www.cfids-me.org/dhhs/simplereport.pdf
Report plus personal stories: http://www.cfids-me.org/dhhs/longreport.pdf

Or you can read it in html here:
http://www.vtcfids.org/obama_biden_report.html

Thanks again, Dan.

Mary Schweitzer