Vote for WPI!

The Vivint Givesback Project needs your help in honoring local charities that are doing heroic work in communitites across the United States.  You can vote for one charity per day.  The charity that has earned the most overall votes will then be awarded $250,000.  The remaining charities that earn the most from each of the regions will each receive a $100,000 donation. 

Rather than sitting around waiting for a new pill or cure to come along, show support for the doctors in our corner!  Our illness robs of of our power to do much of what we want to do in life but it can never take away our power of speech.  The WPI is dedicated to researching neuro-immune disease with a big goal of developing new treatments for those suffering from CFS.  Right now WPI is in 6th place overall and 1st pace in the region.  If we all vote we can push it up to number 1! 

Chase Community Giving: Vote for WPI!

Chase Community Giving is holding a charity contest offering a share in $2,500,000 to the 100 charities that receive the most votes from Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities vying for votes and they need our support! 

WPI is a vital organization to the CFS and fibromyalgia community that drives significant research, awareness, and advances in patient care.  With enough funds, the institute provides hope for the discovery of definitive diagnostics, treatments, and even a cure for these life-altering diseases.  WPI’s work also contributes to advances in the understanding of other neuro-immune diseases, including autism and Lyme’s disease.

Voting is easy and only takes a few minutes!

If you have a facebook account:
1. Go to http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" at the top of the page
3. Go to http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and select vote!

Remember, every vote counts!  Take a minute of your day to make a difference. 

Happy Holidays!

Happy holidays everyone!  This year I decided to send out a holiday card (actually e-mail) to my friends and family with a bit of a chronic fatigue syndrome flare.  Check it out: 

Dear Family and Friends,

Happy Holidays!  This year, I have watched the holiday cards flood into our mailbox with smiling faces and kind greetings.  In the spirit of the season, I wanted to make a holiday card of my own, but with a bit of a twist.  This year has been anything but typical for me and I feel the need to update the people I love about it.  If this were any other year, you might be getting a holiday card from my family (emphasis on might because sometimes they just don’t happen) sharing my accomplishments like making the honor roll or taking a great vacation.  Unfortunately, this year my accomplishments have been of a very different kind.  They have included things like finding a medication to stop me from fainting several times a day and getting strong enough to stop using a wheelchair.  Perhaps I should start from the beginning.

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal.  In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years, which vary from fatigued but functional, to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a major flare up.

While I do plan to return to college this upcoming semester, chronic fatigue syndrome and fibromyalgia are chronic conditions that I will have to contend with for the rest of my life.  While my symptoms can be somewhat managed, there is always a threat that I will have another flare up like I did this year that will leave me unable to function and take care of myself.  However, there is some hope.  On October 8, 2009, a report was printed in the journal Science citing a possibility that chronic fatigue syndrome is caused by a HIV-like retrovirus called XMRV. Motivated by this discovery, scientists are working diligently to devise better treatments for people with my condition.

I have decided that I can no longer sit around and wait for a cure to come along for me.  I want to be part of the solution.  For five months I have been homebound.  I have felt hopeless, helpless, and my faith has been tested.  Knowing that there is a test available that might explain why I have suffered the way I have provides me with a glimmer of hope; but the fact that there is no treatment leaves me in a bad place.

This holiday it is my wish to raise money for the Whittemore Peterson Institute for Neuro Immune Disease, the facility that discovered XMRV and is driving research and treatment efforts.  I know that the economy is horrible and that everyone just had to shop for the holidays, but like many social issues of our day, beyond generating awareness, the only way to fuel action is through donations.  Up to 10 million U.S. citizens could already be infected by XMRV and our blood supply is contaminated. 

Below is a button that you can press to donate through PayPal using your credit card. Thank you so much for all of your support.  Have a wonderful holiday season and a happy new year.

Happy Holidays,

Marah


Like I did with my family and friends, I challenge you to make a donation!  Press the button below...

The Question of XMRV

Lately there has been a lot of discussion in the media about new research on chronic fatigue syndrome given the new discovery of the XMRV retrovirus last October.  Having suffered from the illness for 7 years and feeling like managing my symptoms has become increasingly difficult, I have been following these studies with great interest and hope.  I have always felt as though every doctor I’ve seen (who believes in my condition) only has the capability to treat my long list of individual symptoms rather than their underlying cause.  And with what result?  Medications, medication, and more medications – all with potential interactions and side effects.  It is a nightmare. 

With each new treatment I have to ask myself a series of questions: Is this medication working to treat the symptoms it is designed to?  Is this medication producing sides effects or interacting with other medications?  If so, are these new symptoms worse than the original symptoms or better? If they are better, how will they affect me long term (aka will they create a larger problem that will need to be treated with a new medication).  Long story short, it is constant trial and error and a lot of headaches.

Therefore, when I heard that there was a possibility that chronic fatigue syndrome could be explained by a retrovirus – a legitimate underlying cause – I was hopeful, yet cautious.  As a Sociology student I like to find any excuse to incorporate the topic of chronic fatigue syndrome into my schoolwork so I conducted a research project on the condition’s portrayal in the media since its discovery. Using the keyword function in the Lexis-Nexis Academic database I searched for all articles containing the phrase “chronic fatigue syndrome” and selected 43 articles from international news sources dating from 1987-2010.

Here’s what I discovered: In all 43 articles that I read, each one posited a possible theory for chronic fatigue syndrome, a total of 15 different theories on underlying reasons for the illness (including traditional and alternative medicine).  Furthermore, each theory claimed to be a step closer towards finding a cure.  So the question remains: is XMRV different?  Is this the one we’ve been waiting for?  In my opinion, it is too soon to tell.  However, that does not discredit the wonderful advocacy and awareness that has been generated by the finding of XMRV.  This new research has helped to unite the chronic fatigue community and started to legitimize the illness to the public.

As far as how to proceed with treatment and making the decision of whether or not to get tested is a personal question that we all need to answer for ourselves.  Last week I began seeing a new chronic fatigue specialist and asked his view.  In his opinion, the drugs currently being used to treat XMRV (which are drugs that have been proven to treat HIV) are very toxic to the body so users need to monitor their liver function etc.  HIV sufferers have no choice but to use these drugs to prevent AIDS and death, however, chronic fatigue patients will not die from their condition.  In addition, he believes that the research surrounding the retrovirus is insufficient and is not pleased with the precedent being set by people using these drugs.

Before this doctor’s visit I was planning on being tested.  For me it would represent some peace of mind that my illness is quantifiable.  However, now I have rethought that position.  If my test did come back positive for XMRV I would not feel comfortable trying to find clinical trials in this early phase of research.  Therefore, it is my decision to wait and continue following the progress of his research.  I am hopeful that in my lifetime a cure will be found for this horrible illness and society will finally recognize the struggle of chronic fatigue sufferers.  In the meantime, I am going to stick to the medications that work and try a few more.  I am not looking for a magic pill because at this point I don’t think it’s out there (at least for me).  My ultimate goal is improved management of my symptoms and getting over my most recent flare so that I can get back to school and finish college. 

Some questions to consider:

What is your opinion of the XMRV research?

Has anyone been tested?

Is anyone being treated for XMRV?  What is your experience?