You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and of war.
There is no doubt whatsoever that every one of these brave and triumphant individuals should be celebrated. They have each earned their badge of courage, and they are a symbol of hope and strength to others facing the same challenges.
Still, whenever I hear this word spoken, I can't help but wonder to myself... what does it truly mean to be a survivor? Does it mean to have once been ill and to now be healthy and disease free? Does it mean to have faced an extraordinary hardship and come out the other side? What of those who fought but lost the same difficult battle? Did they not struggle through with the same amount of courage and determination? Did their spirit remain strong and intact despite not ultimately being victorious? And is that not the true victory in the end?
And what of the chronically ill? What of those of us who have suffered a debilitating disease day in and out for years and years on end? What of those of us who face all the multitudes of suffering and loss that come with an unabating chronic illness, and yet do not allow it to daunt our spirits? Are we not survivors as well, even though we remain ill?
I believe, unquestionably, that we are.
Viktor Frankl, a psychiatrist, author and (yes) holocaust survivor, writes: "The greatest human achievement is not success, but facing an unchangeable or difficult fate with great courage."
Success isn't always about winning. It's about how the battle is fought. It's about having the hope that we will eventually conquer despite the odds, and striving for that victorious moment with courage and grace. It's about how we face our obstacles, and not necessarily on when or even if we overcome them. There's more than one way to overcome an obstacle. There's more than one way to be a survivor.
Those of us dealing with a serious and debilitating chronic illness can often feel we have failed in some capacity. Society doesn't look well upon those who have not achieved the usual perception or definition of success. This is often further compounded if one's chronic illness is invisible to the casual observer. Others can't always see our struggle, our determination, or our courage. As we fight the battle of our lives, perhaps even FOR our life, we are not recognized. In fact, we are often ignored. Worse still, we can even be erroneously seen as malingerers. Thus, on top of combating illness, we must also combat against the misconceptions of our illness.
And yet, we still don't give up. We continue to rise to the challenge, even when we may no longer feel we have the strength to do so. We learn to cope, to focus on the small joys of our lives, and every day, to keep up the fight. Stripped of many of the things we once thought defined us, we are forced to look within, and find out who we truly are.
In other words, we discover that we, too, are survivors.
Sunday, November 22, 2009
Thursday, November 5, 2009
October 2009 CFSAC Meeting
I watched/listened to almost all of the 2 day CFS Advisory Committee meeting held on Thursday and Friday of last week. Others have already written a much more in depth commentary, so I am only going to give what were the highlights for me as I remember them. Please feel free to let me know if my memory is incorrect at any point -- it's been a week now so the whole thing is sort of muddled together in my mind already. :)
The meeting opened with a brief and rather dull update from Social Security Administration. They are trying to make it easier for people with ME/CFS to file claims, they said. Dr. Nancy Klimas pointed out that she has never had a single patient who hasn't been initially denied disability. The SSA did not offer much in response.
The meeting then moved on to a talk by Dr. Eleanor Hanna of the NIH, whose discussions again seemed to me to lack much depth. She appeared to have little knowledge on what the NIH is presently doing to move the XMRV research forward, and only projected on what they might be able to do in the future.
Dr. Hanna stated that the NIH will issue a new Request for Applications (RFA) on CFS in the next year.
It was also noted at some point that the NIH did award a $1.6 million grant to Whittemore Peterson Institute (WPI) Research Director Dr. Judy Mikovits and collaborator Dr. Jonathan Kerr of St. George’s College in London. The WPI's website states that "this 5 year grant will provide critical support for the ongoing research into the causes and diagnosis of neuro-immune diseases."
I believe it was Dr. Hanna who also pronounced that, at this point, the NIH feels it is still safe for those with CFS to continue to donate blood. There was strong disagreement about this. The National Cancer Institute has already said that, given the latest XMRV findings and the possibility of its transmission through blood, CFS patients should not donate at this time. Dr. Peterson and the CFSAC panel seemed to agree, pending further research.
Due to the confusion and importance on this matter, a representative from the DHHS was called in to speak on the 2nd day of the meeting. He stated that they are working with the WPI to investigate the matter further, and they hope to have more answers in a matter of weeks.
Dr. Mike Miller of the CDC commented that they are excited by the XMRV findings and are currently attempting to duplicate the results. Not surprisingly, they will be using their Wichita, Kansas and Georgia study participants to do so. Both Dr. Jason and Dr. Klimas pointed out that this will make it difficult for them to replicate the findings, given that their infamous Witchita/Georgia cohort was a mix of "unwell" patients, and not necessarily those with CFS. Dr. Miller then assured the panel that they are taking split samples from the WPI to study as well. This seemed to come as a surprise to the WPI, as neither Dr. Peterson nor Annette Whittemore knew anything about it.
It was good to hear that Dr. Reeves, who heads the CFS division at the CDC, will NOT be the one in charge of trying to duplicate the XMRV results; it will instead be the HIV/retroviral lab. Dr. Reeves, who incidentally was not at the meeting, is well known for having no interest in looking for a biological marker in CFS. Many pointed out how Reeves inappropriately made a public statement that he already feels they will not be able to duplicate the findings. As someone on the panel noted, "you can't find what you are not looking for." I was therefore quite relieved to hear the job is being handled by the retroviral lab instead.
Okay, now on to the more exciting stuff. :)
Dr. Daniel Peterson, who has studied CFS since its first known outbreak in the U.S. back in the early 80's, gave a fascinating presentation of the recent XMRV findings in ME/CFS -- providing data that was at once compelling, disturbing, and hopeful. He pointed out that XMRV was not only found in the large majority of CFS patients (I believe now up to 95%) studied from different regions in the U.S., but also in the frozen blood samples of CFS patients from 25 years ago. XMRV was also found in some patients with atypical MS, autism and in two identical twins with Niemann-Pick Disease (childhood Alzheimer's), and could have implications in a variety of neuro-immune illnesses. Peterson also stated that the presence of XMRV could explain many of the abnormalities often found in CFS (low NK cells, RNase L dysregulation, co-existing infections, etc), as well as the full myriad of multi-systemic symptoms.
Following his presentation, Dr. Peterson received a well-deserved standing ovation from the audience.
If you missed his presentation, you can view it here:
(Note: I haven't actually watched any of these video clips, so I am not sure if the presentation is in its entirety).
Retrovirus expert Dr. John Coffin of Tufts University also gave a fascinating discussion about the latest findings. He mentioned that many virologists are excited to pursue further studies on XMRV and will divert funds from other projects into XMRV research instead. That was great news to hear, as the more research that is done, the faster we get validation, understanding of how the virus works, and (best of all) more ideas on potential treatments.
Dr. Coffin also talked a bit on how the virus may have crossed over from mice to humans, and mentioned how little we actually know of this specific retrovirus at this point. Is it causal or just a co-existing factor? What effect does XMRV have on the body? How is it transmitted? Much more needs to be learned.
Dr. Coffin noted that XMRV appears to be more similar to feline leukemia than HIV in terms of its slow mutation rate. This means, according to Coffin, that it may be harder to find an antiviral treatment for it as compared to HIV. However, it may be much easier to find a vaccine. Much more research is needed to answer these questions.
The good news, to me, is that there are already existing drugs that could potentially be used as treatment -- drugs that have already been well tested for safety.
Coffin warned against labs that are already claiming to test for XMRV. Currently, the only lab affiliated with the WPI and qualified to test for the retrovirus is VIP labs in Reno. The current cost is about $650. It is hoped that a more widely accessible test will be available in the very near future.
Dr. David Bell, a pediatric CFS specialist, also gave a presentation. He described some heart-wrenching cases (as recent as this year) where 2 different children were out of school, bedridden for months with mono-induced CFS. Shockingly, the parents were subsequently accused of abuse for keeping their kids out of school for such lengths of time (allegedly inappropriately denying their children of an education, as CFS was not seen as a legitimate reason for their child's prolonged absence). These parents actually had to fight for custody of their children, spending up to over $100,000 in legal fees. Dr. Bell emphasized the plethora of scientific findings showing a clear biological pathogenesis in CFS, and stated that there is no evidence whatsoever that CFS is in any way a result of child abuse or childhood trauma.
It was a bit absurd to me that we even have to make that point to anyone in this day in age, but such is sadly the case.
Over the course of 2 days, a total of 3 hours were devoted to patient testimonies. Some in person, some by phone, and one (in my case) by video. Speakers included Annette Whittemore, Marly Silverman, Janis Bell, Staci Stevens, Dr. Ken Friedman, Kim McClearly, Robert Miller, Courtney Alexander, Cort Johnson, Meghan-Morgan Shannon, Michael Dessin, myself :) and many people whose names I regretfully do not recall. The testimonies all told of loss, frustration (and at times anger) at the CDC and NIH, as well as the need for change, research, education and Centers of Excellence. All spoke with eloquence and emotion, and many of the testimonies brought tears to my eyes.
Watching my own video testimony was of course a huge highlight for me! It had been a year long goal of mine, and was so rewarding to see it finally come to fruition.
To view some of the other testimonies I was able to find on youtube, click on the names that are hyperlinked above. I hope to add more as they become available (or when I have more energy :)).
For a written version of some of the testimonies, please visit: http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html
Much of the last day was devoted to discussions on recommendations to make to the Secretary of Health. Some of those recommendations included new leadership (Reeves must go), elimination of the empiric definition of CFS (which is too vague), the need for Centers of Excellence, and review/prioritization of the CDC's 5 year plan. The final version of those recommendations will surely be available online soon, and I will try to link them here when that happens.
What does all this mean? Will anything actually come of this? I couldn't help but think how we were all sort of preaching to the choir; that is, the CFSAC panel (made up of various CFS specialists and advocates) is already fully aware of how devastating CFS is and what all the issues are. They hear our stories and all the presentations and then go on to make recommendations to the Secretary of Health based on what we tell them. And then.... well, nothing. Nothing ever happens. We never hear back from the CDC, the NIH, or the Secretary of Health. None of the recommendations are ever really implemented. They, to date, have fallen on deaf ears.
However, many who have attended other meetings in the past have noted that this one was the best by far, and there is a lot of optimism in the air! One can only hope with the latest ground breaking XMRV studies that, this time, our voices will finally have to be heard.
What can we do in the meantime? Once the CFSAC recommendations have been formally written and submitted, we can all write to the Secretary of Health and urge her to take action. The CFIDS Association of America typically sets up a form letter to make this easier for us to do. Keep an eye out for it at: http://www.cfids.org/advocacy/alert-digest.asp
For those who may have missed the meeting and would like to watch it in its entirety, you can see both days on the NIH website at:
Much thanks to the CFS Advisory Committee for all their years of hard work!! And of course, much thanks to Dr. Peterson, the WPI, Dr. Coffin, Dr. Bell and all who spoke or testified. Last but not least, an enormous amount of thanks and praise goes to Dr. Judy Mikovits, the lead scientist at the WPI whose dedicated work led to the discovery of XMRV in CFS. Though she was unable to attend the CFSAC meeting (she's in high demand at the moment), it was clear the amount of gratitude felt towards her by all in attendence.
Well done, everyone!!
Sunday, October 25, 2009
What I Miss Most
Note: This is a journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me. I pretty much bare my soul. But I wanted to share it anyway, because it shows the degree of loss that can come with this illness, as well as all the hopes/dreams that fervently remain. As I continue to try to dig out of a nearly 2 month long crash, many of these emotions have again been stirred, and I wanted to express them.
~~~~
I want my life back. All of it. Every little morsel.
These are just some of the many, many things I miss most.
I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like glorious diamonds in the sky.
I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.
I miss picking up the phone to call and hear the sound of a life-long friend's voice, and hearing in that first familiar "hello" a sweet mix of love and loyalty and joy... knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.
I miss the glorious feeling of a daily shower, and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy clean hair every day, and smelling of scented soap.
I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh… the kind that makes you catch your breath as tears of joy stream down your face.
I miss going for long, scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.
I miss getting to see my fiance's sweet smile each day, and the amazing sense of comfort I get in being wrapped in his arms.
I miss sleep... beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.
I miss the joy of learning to cook, and the satisfaction of creating a well prepared meal.
I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.
I miss having the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work, and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.
I miss going to movies and the fun of getting absorbed into a great story on screen… whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater, or even in front of the TV.
I miss reading… books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.
I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good work out, and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.
I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.
I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day, and that the world awaits me.
~~~~
I also yearn for what I have not yet had.
I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.
I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love and honor and cherish him every day til death do us part, and hear him make those same vows to me in return. I want to know what it's like to share a lifetime with my best friend and husband. I want to be a wife.
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath, and to marvel at the miracle of his/her arrival.
I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.
I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow, and to watch them make simple milestones and boast to everyone with pride.
I want to be able to play and get to know my niece and nephew. I want to be a good godmother to my godson, to be his buddy and friend and someone who he admires and looks up to. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget, and help them make memories they will cherish for a lifetime.
I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad, to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally. I want to watch them grow and become the incredible people I already know they will be.
I want my would-be children to see the deep love and respect I have for their father, and that he has for me, so we can be an example to them of what love and marriage can be about. I want them, too, to see the strong love and passion we have for life, so that they may cultivate that in themselves as well.
I want a successful career doing what I love. I want to get my master's degree, and to make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.
I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.
I want the chance to fully be me.
~~~~
I want my life back. All of it. Every little morsel.
These are just some of the many, many things I miss most.
I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like glorious diamonds in the sky.
I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.
I miss picking up the phone to call and hear the sound of a life-long friend's voice, and hearing in that first familiar "hello" a sweet mix of love and loyalty and joy... knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.
I miss the glorious feeling of a daily shower, and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy clean hair every day, and smelling of scented soap.
I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh… the kind that makes you catch your breath as tears of joy stream down your face.
I miss going for long, scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.
I miss getting to see my fiance's sweet smile each day, and the amazing sense of comfort I get in being wrapped in his arms.
I miss sleep... beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.
I miss the joy of learning to cook, and the satisfaction of creating a well prepared meal.
I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.
I miss having the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work, and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.
I miss going to movies and the fun of getting absorbed into a great story on screen… whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater, or even in front of the TV.
I miss reading… books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.
I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good work out, and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.
I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.
I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day, and that the world awaits me.
~~~~
I also yearn for what I have not yet had.
I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.
I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love and honor and cherish him every day til death do us part, and hear him make those same vows to me in return. I want to know what it's like to share a lifetime with my best friend and husband. I want to be a wife.
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath, and to marvel at the miracle of his/her arrival.
I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.
I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow, and to watch them make simple milestones and boast to everyone with pride.
I want to be able to play and get to know my niece and nephew. I want to be a good godmother to my godson, to be his buddy and friend and someone who he admires and looks up to. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget, and help them make memories they will cherish for a lifetime.
I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad, to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally. I want to watch them grow and become the incredible people I already know they will be.
I want my would-be children to see the deep love and respect I have for their father, and that he has for me, so we can be an example to them of what love and marriage can be about. I want them, too, to see the strong love and passion we have for life, so that they may cultivate that in themselves as well.
I want a successful career doing what I love. I want to get my master's degree, and to make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.
I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.
I want the chance to fully be me.
Tuesday, October 20, 2009
CFS & XMRV on GMA
There are a lot of acronyms in that title. :) Here's a lengthier translation: Dr. Donnica Moore appeared on yesterday's Good Morning America - Health to discuss the newly discovered link between the retrovirus XMRV and chronic fatigue syndrome.
Saturday, October 10, 2009
CFS Linked to Retrovirus XMRV
This will be two-day old news for most of you reading this; however, I wanted to briefly post about it anyway, as it is so rare to get such major and potentially groundbreaking new findings in ME/CFS research.
On October 8th, researchers at the Whittemore-Peterson Institute, the Cleveland Clinic and the National Cancer Institute published a study that reports 67% of ME/CFS subjects tested positive for infection with xenotropic murine leukemia virus–related virus (XMRV), a retrovirus previously associated with prostate cancer. The only other types of known human retroviruses are HIV (which causes AIDS), and HTLV-1 and 2 (which cause certain types of leukemia and lymphoma, respectively). XMRV is a newly discovered retrovirus, and its full implications are not yet known or understood.
Further testing since the study's completion showed a full 95% of ME/CFS patients tested were infected. Only 3.7% of healthy subjects were positive for the virus.
As I am too ill right now to fully formulate my thoughts or give much comment, I am just going to include some informational links as resources. It's quite a bit of info to absorb.
To view the scientific paper published in Science, click here.
For some of the scientific articles and press releases regarding the study, check out the following:
National Cancer Institute Press Release,
Scientific American
Science News
and for just some of the multitude of media stories:
BBC
New York Times
NPR
Wall Street Journal
LA Times
This finding obviously raises a lot of questions. For some of the answers, view the Whittemore-Peterson's Q&A section. The resource page at Phoenix Rising is also very helpful and informative.
Ultimately, what does all this mean? Only time will tell. But I, among many, am incredibly hopeful the answers are finally starting to arrive.
On October 8th, researchers at the Whittemore-Peterson Institute, the Cleveland Clinic and the National Cancer Institute published a study that reports 67% of ME/CFS subjects tested positive for infection with xenotropic murine leukemia virus–related virus (XMRV), a retrovirus previously associated with prostate cancer. The only other types of known human retroviruses are HIV (which causes AIDS), and HTLV-1 and 2 (which cause certain types of leukemia and lymphoma, respectively). XMRV is a newly discovered retrovirus, and its full implications are not yet known or understood.
Further testing since the study's completion showed a full 95% of ME/CFS patients tested were infected. Only 3.7% of healthy subjects were positive for the virus.
As I am too ill right now to fully formulate my thoughts or give much comment, I am just going to include some informational links as resources. It's quite a bit of info to absorb.
To view the scientific paper published in Science, click here.
For some of the scientific articles and press releases regarding the study, check out the following:
National Cancer Institute Press Release,
Scientific American
Science News
and for just some of the multitude of media stories:
BBC
New York Times
NPR
Wall Street Journal
LA Times
This finding obviously raises a lot of questions. For some of the answers, view the Whittemore-Peterson's Q&A section. The resource page at Phoenix Rising is also very helpful and informative.
Ultimately, what does all this mean? Only time will tell. But I, among many, am incredibly hopeful the answers are finally starting to arrive.
Tuesday, October 6, 2009
Update on Video Testimony
I wanted to post a quick update to say that I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m. So I am very excited about that!! The 2 day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/
I hope to post a new blog entry again soon, but am trying to lay low at the moment as I recover from a bad crash. Much thanks to all who left me such kind comments!!
I hope to post a new blog entry again soon, but am trying to lay low at the moment as I recover from a bad crash. Much thanks to all who left me such kind comments!!
Saturday, September 26, 2009
My CFS/CFSAC Video Testimony
At the end of October, the CFS Advisory Committee will once again be meeting to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. The committee meets every 6 months, and they allow only a limited number of patient testimonies per meeting.
It has always frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we can't GO to the meetings. In my hopes to tell my story and perhaps be a voice for the voiceless, I decided this year I would attempt to (with the help of others) create a video testimony to hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.
In the meantime, a non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy) already has it featured on their youtube website, which you can view by clicking here. I've also included the video(s) below.
There was a 5 minute time limit, which is why some of it goes so fast. Also, since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me; so, it is her voice that you hear. I am extremely grateful to her for all her help!
Here is the video to (hopefully) be presented at the upcoming meeting:
I actually did another version without a voice over and set to music (specifically for the purposes of youtube only).
It can be viewed here:
Comments are welcome as always (love them!) but please know I likely won't be able to respond this time around -- I am regretfully in another severe crash at the moment and am too sick to be online for more than a few moments each morning. But I always enjoy getting feedback!
Thanks for watching and for hearing my story.
It has always frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we can't GO to the meetings. In my hopes to tell my story and perhaps be a voice for the voiceless, I decided this year I would attempt to (with the help of others) create a video testimony to hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.
In the meantime, a non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy) already has it featured on their youtube website, which you can view by clicking here. I've also included the video(s) below.
There was a 5 minute time limit, which is why some of it goes so fast. Also, since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me; so, it is her voice that you hear. I am extremely grateful to her for all her help!
Here is the video to (hopefully) be presented at the upcoming meeting:
I actually did another version without a voice over and set to music (specifically for the purposes of youtube only).
It can be viewed here:
Comments are welcome as always (love them!) but please know I likely won't be able to respond this time around -- I am regretfully in another severe crash at the moment and am too sick to be online for more than a few moments each morning. But I always enjoy getting feedback!
Thanks for watching and for hearing my story.
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