Llewellyn King is one of the founders of ME/CFS Alert, a series of videotaped interviews and presentations that help the world better understand ME/CFS. He has been a staunch supporter of the ME/CFS community through his writing and media efforts, and has helped get news and information about the illness out to the broader community, the one that people with ME/CFS seldom can reach.
King’s moving plea for increased funding, increased awareness, and general compassion for ME/CFS is testament to his loyalty and his strength of purpose. I hope you will be able to help support his efforts in the year to come.
To sponsor ME/CFS Alert, please contact MECFSAlert@gmail.com.
“It is Holiday time, a time that can be very joyous, but also very cruel and painful. It is not necessarily a happy time for the sick when people are singing and dancing and you cannot participate. For if you pay a terrible price and collapse after just a little celebration, it’s not such a happy thing.
For those of us who are not afflicted with chronic fatigue syndrome, it is hard even to imagine the restrictions it puts on your life: the pain, the suffering, the isolation, the loneliness, the separateness, the differentness, the sense that life belongs to other people, to those who have not been afflicted. And yet life belongs to everyone, including the afflicted.
It is very hard for the caregivers to see how hard it is to make people who are in a desperate situation happy, fulfilled, and hopeful. Hope requires an anticipation of improvement. Hope requires the knowledge that well-intentioned people in science, across the whole spectrum of medicine, are looking for cures and that they may in the next year, or two years, or three years find the cure.
I sincerely hope they do. I hope for you – very much. I hope for all the caregivers that their compassion will not run out as year after year they are taxed,not through your fault, but through your necessity.
It is a terible business this, a kind of secret business, that nobody knows about. People who do not have ME/CFS in their families, who do not know somebody who suffers, cannot begin to imagine this secret disease, this hidden-in-plain-sight affliction. It is very imporant that they learn. And part of the purpose of this program is to tell them.
It is part of my purpose in my writing and my broadcasting to tell them. Eventually, we will at least get the message out, and in getting the message out we will increase the pressure for more government research, for more private research, for more funds devoted to research, and for more general compassion for those who hurt.
We will prevail, we must prevail, we need to prevail. This day, this week, this month, this year, time cannot be extended indefinitely when hurting is the consequence.”