Thank you for all your kind and supportive comments in response to my last post. I continue to be offline even more than usual as I recover from recent setbacks and ongoing activity. However, for those who may be unaware, I wanted to tell you that Chase Community Giving is holding another charity contest, offering a share in $2,500,000 to the 100 charities that receive the most votes from its Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities for which you can vote.
In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.
It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.
To vote for them, all you need to do is the following(Note: Facebook account required)
And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease.
You have 10 votes you can use, so you are free to vote for any other charities of your choice as well. There are also a few other ME/CFS organizations in the running if you'd like to vote for them (search for CFS, CFIDS, ME/CFS, chronic fatigue syndrome or myalgic encephalomyelitis to find them).
Before concluding, I want to take a moment to tell you of a friend of mine who also has severe ME/CFS. Late last year, she suffered a crash that left her eye muscles so weak she was forced to wear an eye mask 24/7, rendering her essentially blind. I have just learned that she recently experienced yet another setback that has severely altered her tolerance to sound. She now lives in total darkness and silence 24 hours of every single day. She writes notes with her eyes closed in order to communicate with family. In return, they reply by spelling out words, letter by letter, in her hand.
Visual problems and sensitivity to light and sound in ME/CFS are not uncommon. I myself suffer from these same symptoms, though thankfully not to such a severe degree. I know many others who also experience these difficulties -- no longer able to be online, read or watch TV. Some are living in darkness, some in silence and some in both.
I have received many emails in the last couple of years from bedridden patients or family members of bedridden patients, telling me details of the utter devastation that this disease has afflicted upon their lives. Some have not left their bed in years; some struggle to eat, drink and even breathe.
I tell you this not to evoke sympathy, but to explain why it is so urgent that we receive funds for research. ME/CFS is a very serious, treacherous disease. It often strikes suddenly (typically following a viral infection), and can afflict men and woman of all ages -- including young children. As with any illness, the disease can range from mild to severe, with some patients experiencing a level of disability equal to that of late-stage AIDS. Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors.
Despite its seriousness and high prevalence (approximately 1 million Americans), ME/CFS remains one of the least funded of all diseases in the United States. More money is spent studying hay fever. We need proper funding to find the answers, discover treatments and a cure, and thus finally end the suffering of millions world-wide.
Thank you so much for your time in reading this, and in voting for the WPI. Please note voting ends on May 4th.