I still am
despite this
with this
fighting this
under this
molded
burned
touched
taught
humbled by this
uninvited illness
engraved upon my life
not yet named
not yet understood
I still am
here
loving
laughing
feeling
thinking
creating
dreaming
enduring
I still am
a soul born into an
awesome, mysterious
wonderful and sometimes
cruel and unjust world
Despite this
with this
under this
fighting this
humbled by this
I still am
and I will not
give up
by, Kerry Ryan-Kuhn (published in CFIDS Chronicle-Winter 2003)
Monday morning, I took part in the XMRV-CFS Webinar with Dr. Lucinda Bateman as the speaker. Literally I took part…because with this CFS cognitively affected brain of mine I took the first third, or the first thirty minutes, then had to leave my hubby to the remainder because my brain lost its charge, meaning it had taken in as much as it could process and needed a good long rest before it could take in more.
How I appreciate the CFS dedicated doctors and CFS non-profit organizers who must work extra hard to condense scientific information into a time frame for CFS brain processing. I often find myself looking at my cell phone charger, dreaming of one made especially for my brain. How amazing it would be if I could recharge my brain for a half hour and it would run like it used to for 24.
In order to get a full scoop of information given throughout the Webinar (About Retroviruses, what we know about the specifics of the XRMV as a Retrovirus, details about research and much more), take a visit on over to The CFIDS Association of America or OFFER (both links are under Chronic Illness Support on the right side bar of this blog.) Take a short read below for the gems I was able to steal away from my third of the Webinar.
Dr. Bateman took us on a chronological journey from the fall research revelation of finding XRMV in the blood of a high percentage of CFS patients and the excitement throughout the CFS community that followed. Then she brought us to the January British study which didn’t find the retrovirus in its CFS subjects, which caused confusion and a wondering whether or not we should still be excited.
No need to throw all our excitement away, for a number of reasons: what we know about XMRV, even exactly where it should be looked for in the blood or cells, is still very little and the definitions of CFS are many and vary considerably. Both of the above have a direct effect on research findings.
It is possible for two different studies to inadvertently (or with a bias) test people who fit into one very broad definition of CFS, and another to test people who fitted in a more narrow, honed definition. It is possible for different studies to be looking at different parts of the blood/tissue than another study is.
Hope…there is so much research going with XMRV right now as you are reading this. We are going to learn more, and more and more. The blood banks, Cancer researchers, CFS and ME researchers…public and private researchers, are all working hard to learn more about XRMV.
Here’s the worst case scenario after all the findings come in; Kerry’s translation of Dr. Bateman’s worst case scenario. We learn the virus is found only in a sub-set of patients with CFS and it isn’t the cause of the disease. XMRV is long, long, long at last, bringing attention and focus by the scientific community to this incapacitating illness. (Research findings could even uncover other important information that will help us to further underestand and treat CFS, as well as prostrate cancer and other illnesses).
One more exciting gem… Suzanne Vernon, Virologist and the CFIDS scientific coordinator, shared that the CFIDS Association in the midst of creating a Bio-bank. This means that each of us, where ever we live, can be a part of putting the scientific CFS puzzle together! Look for information about this; it should be coming out soon.
You can’t applaud on a Webinar, but you can fill out an evaluation form. Its not the same. You can’t really applaud on a blog either, but I can try…Clap, clap, whistle, stand up, and clap more. Thank you CFIDS Association, Dr. Bateman and Suzanne Vernon for giving us a greater understanding of what is happening right now with XMRV and what it means for the CFS community.
The “patient hope” Dr. Bateman conveys with her scientific knowledge, her involvement in the research community and her dedication to her patients, is contagious…the major symptom of “patient hope” is…peace of mind. It is a definite means of CFS brain recharging.
Sue Jackson (www.livewithcfs@blogspot.com) just shared another way each of us can be a part of research and can do so now. The Whittemore-Peterson Institute is creating a Databank of CFS patients. Visit www.WPInstitute.org for more info.
I am incredibly grateful to be in the care of one of the top CFS doctors in the world, Dr. Lucinda Bateman. The CFIDS Association of America is putting on a Webinar in which Dr. Bateman will speak about the XMRV virus on January 18th at 12:00 Eastern time. The Webinar will be moderated by virologist, Dr. Susan Vernon.
Last Friday I had an appointment with Dr. Bateman. I travel five hours to her office. Every moment of my time with her is worth each mile. In person I had the opportunity to hear her knowledge and thoughts on the XRMV findings, what they mean and what’s coming next. It was fascinating. I came away grateful not only to be in the care of such a doctor and scientist, but excited to be a part of the CFS community during this time of discovery.
To register for the Webinar, go to The CFIDS Association of America, Grass Roots Action Site.
The CFIDS Association of America is asking us to “Tell us what its like to be you”. They want to share what we tell them with the medical community and the public so this darn tootin’, pain in the booty (and many other parts), life tripping up, misunderstood disease with a misfit name (Chronic Fatigue Syndrome), can come further out of the shadows of ignorance and into public/medical consiousness and medical journals. After the medical journals…diagnostic tests, treatments follow (and the road to a cure begins).
Every little bitty step will pave the road that gets us there. This step just takes a few minutes…Share what its like to be you, living with CFS (or living with someone or loving someone who has CFS). Survey, “tell us what its like…”–scroll down to “YOU MATTER”, survey link is just below. (*link no longer works as survey has been completed).
Hi readers and fellow bloggers. I’ve missed you. Our son’s wedding was last week and being able to just focus on a thing or two at a time (good ole CFS affected brain), I set my online life aside for a couple weeks.
In being away, I missed this urgent, time sensitive request by the CFIDS Association of America. The CDC’S five year CFS research and advocacy plan falls far far short of what is needed. Each electronic email letter sent (It only takes a moment) adds power to our voice and hope that the CDC will change the proposal to match our needs. CDC is accepting our input officially through tomorrow.
We have been waiting too long, to be taken seriously, to have research adequately funded, to have the medical and public community understand this serious Neuro-Endocrine-Immunological disease that alters and devastates lives. We have waited too long for the stigma of a disease so non-chalantly named and quickly judged, to be lifted. We have waited too long for medical care, for a diagnostic test, for treatment, for hope….
Please take just a moment and send this electronic letter to the CDC. Click here. The numbers they receive count!
I look forward to posting soon…so much has been happening…much to share. Also, look forward to catching up on blogs. Wishing you a feel as good as you possibly can day, Kerry
