Imagine you suffer a catastrophic change to your life. You lose your footing on the career ladder or the chance of a good education. Envisage now, an insecure financial future. Picture feeling so wretched that taking a shower, brushing your teeth or eating makes you reel with pain, fatigue and weakness. Imagine not being able to hold and play with your kids, support your loved-ones, or socialize with your friends and family.
Now, imagine that the caring medical professionals you turn to, have no answers or useful therapy, and they doubt or ridicule you.
This is the reality of the estimated 17 million ME/CFS sufferers worldwide.
The ME/CFS Worldwide Patient Alliance cause-project wants to change this deplorable situation. Our campaign aims to highlight the need for more biomedical research, increased public awareness, superior education for physicians and other health professionals involved in our care, and the need for a new name, one that shows the true severity of the illness and not just a single symptom, present in a multitude of other illnesses.
“This newly discovered retrovirus affects everyone and not just us ME/CFS sick, and that will be made very clear in the advertisement in the Washington Post and in all other media. The bottom line is that there is very little funding going towards research on this retrovirus and that must change immediately. This is the third known human retrovirus and it must, by scientific rights, be researched and investigated to find out what other diseases and cancers it might cause or be involved in. Remember, the first known human retrovirus, HIV, causes AIDS; the second known retrovirus, HTLV, causes leukemia; this third known retrovirus may cause or be part of a cause for many diseases and cancers.” Sarah
“We have a right to let the world know how devastating our condition is- The world has a right to know the stakes of these findings- And the FDA/CDC has an obligation to mount an unprecedented effort as demonstrated by funding appropriate for a disease as debilitating as CFS.” Brian Simmons