by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
Although I am pro fibromyalgia, I am aware that there are similar conditions, just as painful with overlapping symptoms and in some cases fatal. Like fibromyalgia, ME, the disease I am referring to, has no known cure. In the story I am about to tell you, it has ravaged a young man’s body, stolen his life and is there is a possibility it could kill him.
The following story landed on my desktop this week and as so many fibromites are also diagnosed with CFS and ME, I felt I must talk about this plea for help for a fellow sufferer.
The email came to me from Jodi Bassett who lives in Australia. Jodi, who is an expert and advocate in the field of ME (www.ahummingbirdsguide.com) talked about a young American called Mike Dessin who has very severe ME. The sad story is his family can no longer afford basic care for him to stay alive.
Mike’s father, in desperation, has started a fund to “keep him alive” and launched his appeal on a new website.
Jodi adds, “Just added to the site are some shocking (and very sad) before M.E. and after M.E. photos of Mike.”
She said, “Mike says he wants everyone to be aware of how dangerous it is to just accept a ‘CFS’ misdiagnosis and to not get proper diagnosis and treatment for your illness, and information about your illness. In the case of M.E., the all-important advice is to REST and avoid over exertion. He does not want what has happened to him, to happen to anyone else.
“He says ‘I wish someone would have told me the truth about this disease when I was first ill. Things must change. People must know the reality of what they have.’ Mike feels as if this lack of basic information may well lead to his death (as has happened already to countless others).
“Please repost this information anywhere you think it may do some good, add it to your links page on your website, or include it in a newsletter, and soon.
“The family is utterly desperate right now. Mike is a really great guy too, not that that makes any difference…Thanks. Jodi.”
The website (http://www.michaeldessinhelp.com.) opens with the heading ‘Michael Dessin Myalgic Encephalomyelitis Foundation’ and talks about a living nightmare. It explains that to keep Michael alive he needs his own apartment, special care nurse, and total silence.
The family tell us Michael was a healthy successful businessman with ambition and all the joys 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 his 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.
He spent all his time and money trying to get help, but as we would find out there basically is no help. In August 2007 his father brought Michael back home to Columbus, Ohio from Newport Beach California to see if they 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.
In a desperate attempt to keep Michael alive, his father says, “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 until a cure or at least relief for him can be found. If you can help please send anything you can to Michael Dessin, 3951 Kedleston Drive Columbus, Ohio 43230, USA. I am starting a fund to help keep him alive. Please help if you can. Thank you, Stan Dessin.”
WHAT IS M.E?
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease, which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3.
M.E. can occur in both epidemic and sporadic forms. Over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.
If you login and look at ‘About’ on Stan Dessin’s website, in the top index you will see photographs of poor Mike, before and after the onset of ME. This must be truly a living nightmare for the family, watching their once ambitious, fit and healthy son, losing his fight for life, before their eyes. Stories such as Michael’s makes me wonder what I have to complain about.
Contact the Dessin family to learn more about Michael or ME. Inviting donation by Paypal with a portion of proceeds to go to the Nightingale Foundation, the family emails are as follows –
The family has said if you wish to make a donation contact Michael’s email address or his father’s or make a payment through Paypal. If you know someone else who might also help, please spread the word.
I am sure that the two million fibromites in the UK would join me in thinking about you Michael, and praying for your recovery. Good luck with the Foundation Stan – wishing you lots of success. Jeanne