Mike's Story
Mike's story one is not easy one - he has a very severe form of ME/CFS. We don' hear from these patients much - they are simply too impaired physically and cognitively to reach out. Many, like Mike, need to be shielded from almost any kind of inputs and their degree of debility is overwhelming. First we hear from Mike's father and then from Mike himself in a story gathered from several e-mails. Mike's story is posted here to acquaint people with how severe chronic fatigue syndrome (ME/CFS) can get and to hopefully get Mike some support.
Mike' Dessin's Father
This is a story about a living nightmare. My son Michael has a rare and debilitating disease called Myalgic Encephalomyelitis which I will refer to as M.E.
Michael
was a healthy successful businessman with ambition and all the joy one would
want to have when at age 31 in October of 2006 he began to feel weak and unable
to work or focus. Really Michael has not felt well for almost 14 years but
nobody knew why. Now nearly every function of his body is affected including
cardiac function. Within a couple of months of going to doctors and being told
he now has over fifty symptoms plus seizures and cardiac problems. He was flat
on his back barely able to move.
All I can do now is try to keep him alive until a cure is found.
He spent all his time and money trying to get help, but as we would find out there basically is no help. In August of 2007 I brought Michael back home to Columbus, Ohio from Newport Beach California to see If could do anything for him. It is now May, 2008. Michael is barely able to speak or move. He has a full time caretaker who cooks and cleans and gives him his medicine. He is never out of bed. There are many degrees and stages to M.E. In a case as severe as Michael's a patient may be able to complete simple tasks such as talking, listening to speech for 2-10 minute periods throughout the day.Concentration, memory and other cognitive abilities are severely affected. He has the inability to maintain full consciousness throughout the day. No TV is possible. He lives in a totally dark room with no light or noise as he is extremely sensitive to both. His weight is down from a healthy 220 Lbs. to 140 Lbs.
All I can do now is try to keep him alive until a cure is found. Easier
said then done. I am out of funds to care for him. I am retired and have used
all my savings plus credit cards to pay for his needs. His expenses are enormous
and I have no more funds.
I AM MAKING THIS PLEA AS A FATHER TO PLEASE HELP MY SON SURVIVE. (Click here to go to Mike Dessin's website.)
I actually was in your situation, Cort, in college; symptom-wise almost word for word, I recovered and continued through college. I actually lived at 90% for 14 years and was hurt by a well known doctors treatment who has hurt many - with no apologies.
Now I'm more dead than alive and they are trying to put me in a psychiatric facility. I can barely move due to cardiac issues, can barely stand for more than a few minutes plus too many horrible things too mention yet I'm supposed to pass a psychiatric evaluation. Would they do that with an MS patient or an Alzheimer patient? It's cruel what's happening to me and ME sufferers all over this country and elsewhere. We, the sickest ones, are defenseless, and cannot fight.
I can write like this, when I can read or see for a few minutes daily, and it costs me days of health but I want to get my voice out. I'm close to passing, I want to save lives. We need to get images and research to the mainstream doctors, they need to know about how we the severely ill live. Our story is too far behind closed doors in our CFS/ME community.
There is no disease as brutal as this period. Dr. Hyde believes 40% are committing suicide, 20% develop cancer, 10-20% cardiac failure. We can't even go to the hospital because the trip there will kill us along with untrained staff. We can't handle any cognitive input - it's like a knife being put through our head, so we are stuck at home with no help. I need to stay in a dark room all the time with ear plugs. I'm literally in a state of delirium and unconscious most of the day, it's just horrific. As this disease advances to the extreme you can actually feel the ravishing of the spinal cord.
There are many like this, but most jump off a bridge before they get to this point as Dr. Cheney pointed out.
We need to get images and research to the mainstream doctors, they need to know about how we the severely ill live.
Our medical system is not designed for the severity level and restrictions of this disease. The severely ill are not being seen and 1 out of 4 of us is severely ill. We are not getting medical needs taken care of because we are trapped in bed because of heart, neurological and problems in every area of the body...and we continuously get dogged by the doctors.There is so much biomedical testing and research that proves our disease. Dr Kerr is nailing this along with others. I've done all of it; genetic profiling, biomedical tests and so forth, but our precious research is not getting to the mainstream docs. My belief after comparing this to many hours of research and feeling what I have from onset to now there is no doubt in my mind this is absolutely caused by enterovirus, at least the viral onset type, which I believe is atypical M.E.
Mikes steep slide was precipitated by glutathione IV's that apparently
flooded his system with the toxins that they had liberated. This sensitized his
system dramatically and he's in the position of having to very careful with any
substance he takes. I asked him about this.
We are not getting medical needs taken care of because we are trapped in bed because of heart, neurological and problems
I just need to spend more time resting, even the EMFS from the computer making m ill. The GSH IV's left me with a bunch of floating toxins thus I have mercury and pesticides floating around my body killing me and they belong in the fat not floating around. One other note. I started to recover from the IV's but then I did a colonic which pretty much busted my colon up- once again releasing toxins - and destroyed my stomach. The damage I'm suffering from is due to the residual effects and trying to correct that is an evil task. Especially when I have no brain, and when I try to exert like now it worsens my condition. Whew.I can't even listen to footsteps - my nervous system is so overactive. I'm actually trying to get off Klonopin, it's a little too toxic for me now because of the severe MCS I developed. Even though Klonopin hurts me in that regard - it's kind of like I can't live with it or without it. As in so many treatments there's the good, the bad and the ugly.
(Mike's cognitive difficulties make it very difficult for him to write - something very common in people with severe ME/CFS; his story was heavily edited. Compare the paragraph below to the one above.)
"I cant even listen to footsteps, one thing is my nervous system is so overactive and Im actaully tryin gto get off kolonopin, its alittle too toxic for me now because of my sever MCS i develped even the klonopin hurts me in that regardd, Its kinda like I cant live with it or without it as in so many treatments, the good bad and ugly"