Dear friends in the ME community,
On 4th February 2015, we lost Vanessa Yeuk Lin Li, a beloved daughter, sister, and friend. Her 15-year struggle with ME had taken an immeasurable toll on her and the family, and that it came to an end in this way has been devastating to us. These past few weeks we have been touched by the many kind words and tributes to Vanessa from many members of the ME community, and we have found some comfort in knowing that over the years she has also been able to reach out to an online ME family for companionship and counsel, in both good times and bad.
It goes without saying that M.E. is a cruel illness. Many of you are already familiar with Vanessa’s symptoms. Over the years she suffered from migraines, seizures, fits, stupors, personality changes, muscle cramps, and angina pains. She would be bed-ridden or housebound for months on end, requiring help for things as basic as going to the toilet, and was wholly dependent on her mother as her full-time carer. On Facebook you might see pictures of her in happier times, on travels with family, or in occasional get-togethers with friends – but while she made the most of her healthier interludes, from the outside looking in it could be difficult for people not directly affected by the illness to comprehend. Moreover, despite being such a debilitating condition that changes the lives of so many patients worldwide and those that care for them, ME receives little attention or meaningful research from medical authorities around the world. Most doctors had only a limited grasp of her condition, and often visits ended with a mere cursory examination of her symptoms or outright dismissal.
Fighting M.E. could therefore be a very lonely experience. But in those trying times, the understanding, resourcefulness and courage of the M.E. community was a lifeline for Vanessa and our family. In the early days of her illness, our attempts to find a treatment for Vanessa often felt directionless, but as the online community grew and matured, these forums became an invaluable resource for discovering different possible explanations for this illness and exploring different avenues for treatment. Just as important were the friendships struck with many of you, and we know she counted some of you among her closest friends. Vanessa and the family had the good fortune of meeting some of you on our travels to see different doctors, and we know that it meant a lot to Vanessa that she had allies in the struggle against M.E. around the world. We would like to convey our most heartfelt thanks to the M.E. community for all your support, without which we would have spent more years in the wilderness, and without which Vanessa would not have made it this far.
Though Vanessa’s journey has ended, we will continue to remember her. We know she cared deeply about promoting awareness and understanding of M.E., with the hopes that it would attract more conscientious research into its causes and treatment. We have shared many of our photos, videos and memories of Vanessa on her memorial page on Facebook, and our hearts have been touched by your prayers and condolences. Just as many of you inspired Vanessa over the years, we hope that Vanessa can be a continued source of inspiration in fighting the good fight against this illness.
Blessings to you all from us,
Lisa, Joseph, Jeremy and Julian
