My name is Vikki Walker, i am 35 years old and have suffered with M.E/CFS for 7 years now. I like so many others with this disease have lost not only my health, my ability to work, my income, my ability to socialise, my relationship of 13 years, i am no longer able to see or speak with my family as much as i would like to, i have had to watch my beloved dog go off for walks with someone else, i have missed so many special occasions, weddings, birthdays, too numerous to count. I am too sick to have children, i am too sick to spend time with my neice, to visit my grandparents or have them visit me. Washing dishes becomes a dream. This is what my life has been reduced to.
I contracted M.E/CFS after glandular fever(infectious monoculosis) and live with extreme pain, exhaustion, weakness, muscle twitching and spasms, neurological and cognitive problems. Memory loss and confusion. I am plagued by infections and crippling headaches. I suffer paralysis, unable to move, however thirsty, to even drink a glass of water sitting on my bedside table. I have had to be washed by my mother. I wake up in the night soaked in sweat unable to move to change myself. I experience a deficit of energy so severe that i an unable to do ANYTHING, unable to eat, drink, wash.
I was a very active and intelligent person, i excelled at sports at school, i went to university, i travelled the world as cabin crew for a major airline, i became a manager of a health spa running a team of 25 people, i went to the gym, i swam, i ran, bike rides, i went on vacations, i cooked, cleaned i was an active member of society. I am now invisible to society. This is how i feel. My life has been robbed from me.
You have heard personal stories from so many others with this crippling disease over the years and still nothing is being done to fund research into the cause, to offer proper treatments, hope and a cure. The only hope we have is from the Whittemore Peterson Institute who are researching this disease. Why are they not receiving funding? Patients want the WPI to receive funding.
Patients here in the UK are offered nothing but psychological interventions, CBT and graded exercise therapy, which can do so much harm and damage. We want psychologists taken out of all research and discusion into this disease. We want researchers like Judy Mikovits, Leonard Jason, Nancy Klimas, Jose Montoya to receive funding and backing. They understand this disease better than most. They get it.
We are mistreated, ridiculed and ignored by the medical profession and governments worldwide. We are ridiculed by the general public who do not understand this disease or see us sick as it is a hidden illness, we suffer behind closed doors unable to have visitors or talk on the phone without severe consequences afterwards. We suffer from extreme post exertional malaise after the slightest effort from brushing out teeth, to washing ourselves. Many of us live on painkillers, sleeping medications. We dont want medications that mask our symptoms, we want medication that will get us well again, we want ampligen or other medication that will allow us to function normally again.
We want to be seen by neurologists, immunologists, endocrinologists.
We want public awareness, we do not want to be accused of "being lazy" or "just tired", we know everyone gets tired, "tired" or "fatigue" does not even come close to what we experience. The name of Chronic Fatigue Syndrome is ridiculous and hated by everyone who has this disease, We want a name change.
We want the Canadian Guidelines, proper biomarkers established, proper diagnosis, this disease is ridiculously overdiagnosed due to the fukuda guidlelines and doctors being unable to tell the difference between burnout, post viral fatigue and M.E/CFS. We want education and training given to medical students, doctors and nurses alike.
We are battling and surviving just getting through each day and night, we have lost friends to this disease. In the UK we lost Sophia Mirza, a young 32 year old woman to this disease, see http://www.sophiaandme.org.uk/summary.html. We lost Lynn Gilderdale, who suffered for 17 years and could not battle on any longer and took her own life, see http://www.dailymail.co.uk/femail/article-1376605/Kay-Gilderdale-How-I-helped-darling-daughter-die.html#ixzz1JRr2Y3BI
"When her body was examined by the pathologist who specialised in M.E., he discovered 'dorsal root ganglionitis' - infected nerve roots - and nodules of Nageotte, which are liitle tombs of dead cells, in her spinal cord.
These would have caused her terrible pain and sensory nerve damage.
They found similar cells in the body of Sophia Mirza, an M.E. sufferer who died in 2005 at the age of 32,and I believe also in other sufferers."
Lynn and Sophia both suffered at the hands of medical professionals who did not believe they were sick, they were abused and ridiculed, adding to them and their families suffering, accused of pretending to be sick, autopsies proved they WERE sick. There are many many others who have lost their lives. How many more autopsies and deaths will it take for governments and the medical authorities to act? Enough is enough, we cannot go on anymore listening to the same discussions going on from patients begging you for funding research, for proper treatments, to find the cause of this disease.
I beg you to please act now and save one more person from becoming ill with this terrible disease or resorting to taking their own life as a way to end the pain and suffering.