SKIN DEEP

What the heck is going on?

I'm speechless.

For me, that's saying quite a bit.

What has happened to courtesy? Common or otherwise?  It's been an amazing couple of days for me and the whipped cream with the cherry on top is the shooting of Congresswoman Giffords in Tuscon, Arizona.

Let me go back a day or so.

I got an email from a friend of mine who is working to help get research on the XMRV retrovirus. He suffers from Chronic Fatigue and Fibromyalgia and has worked very hard to get funding for research. He happened to mention it on a forum and from that moment on his life has been a living hell. I have never read such vile attacks as those I read on a Chronic Fatigue forum by their members. What kind of people are these? As I wrote back to him, rabid attack dogs are kinder than those people. 

There is ABSOLUTELY no room in forums for people like this. Research is limited at best. Funding dollars haven't exactly been thrown at researchers for Chronic Fatigue/ME or Fibromyalgia. After reading what I read I wouldn't want to spend my dollars to help finding a cure for these people. It sounds like they'd still have a problem even if they didn't have this disease. I know I sound very, VERY harsh, but, I hate this kind of garbage. I hate injustice and their vile attacks on someone who is trying to do something good and to pay it forward is unwarranted.

Why can't people just say thank you?

Why can't we just agree to disagree?

Why can't we all just get along?

I sound like Rodney King.

I am on the more conservative side of the fence and I have many friends that tend to be on the more liberal side. Do we agree on every issue? No. Would I ever question their intentions? Absolutely not. 

I was raised to believe that I should treat people with kindness. Not everyone will respond in kind, however, that had no bearing on the way I should act or react, for that matter.  I was raised with class and dignity and will say right here and now that people that use this forum to say vile and hateful things are classless. 

There is a way to disagree with civility.

Things can get heated because issues that are near and dear to our hearts cause us to get quite passionate. That is understandable. To resort to rhetorical or physical violence is hard for me to fathom. What have we done as a society that caused us to bypass discipline when raising our children? What have we done as a society when accountability for our actions accuses us of being intolerant or not "politically correct?"

How do people justify their actions? What warped and twisted rationale is used to say that this is the appropriate way to voice their opinion?

I'm watching CNN and I'm appalled by the shooting of Congresswoman Giffords. Again, I will never understand actions like this. 

It's becoming acceptable to become verbally abusive and to write vile comments when we disagree. 

Physical violence has, sadly, become a part of our everyday lives. 

We only need to turn on the TV and be bombarded.

I pray for a society that doesn't know how to exercise control over our mouths or our actions.

WALK ANOTHER MILE IN MY SHOES

You're on top.

At your peak.

At the height of your career.

Life is good.

And then everything changes.

Think back to the worst flu that you've ever experienced. It's the kind of flu that makes every bone in your body ache so bad that you want to cry. When you try to lift your head up, it feels like there is a two-ton weight on your pillow. Even a little bit of light causes your eyes to quickly close. As you gingerly shuffle to the bathroom to look at yourself in the mirror, you know that there is NO WAY that you'll be going to work. All you want to do is to go back to bed and put the covers over your head but it even hurts when the sheets touch your hyper-sensitive skin. Everything hurts, everything aches and you wish you could be put out of your misery. The only reason you get through it is because you know it will be out of your system in a couple of days.

Imagine living like that every day.

Imagine no one believes you.

Imagine there is nothing that can be done for you. 

You feel a combination of fear and frustration because you keep forgetting things that you would normally remember. The fear and frustration is compounded because you want to get up and return to the work that you love. You want to do something, anything that will take the pain and fatigue away so that you can get out of bed and do something productive with your day. And then, feeling resigned, you go back to bed because even simple movements drain the last bit of energy that you possess.

Imagine the sick feeling in the pit of your stomach when you realize you can't go back to work.

Imagine the fear knowing your once bright future is now bleak and uncertain.

Every day that goes by becomes a struggle to overcome the stigma of an invisible illness. 


To the outside world you look fine. 


How is it possible that you find it so difficult to get up and get moving? 


How can you feel so sick when you don't look sick? 

Imagine now that nothing is being done to find out why.

BY GEORGE, I THINK I'VE GOT IT

Yes, I think I've got it.

Unfortunately, I think it's 

the XMRV retrovirus.

One of the best things about blogging is the interesting people that I get to meet. One man, "George" contacted me and every so often we trade information about Chronic Fatigue/ME and Fibromyalgia. He also has both illnesses but leaning more to the Chronic Fatigue side. I have both but lean more toward the Fibromyalgia side. He has been very helpful with his knowledge of medications and is very much into the research end of these illnesses. He has provided me with some wonderful links which I will add at the end of this post.

He asked me to announce some studies with people who have tested positive for the XMRV virus. I'm going to copy his email on to the blog so that I don't miss anything important by trying to summarize.

" In the mean time do you or any of your friends been tested positive for the XMRV retrovirus. The reason I am asking as a very prominent researcher is looking into XMRV and also MLV, MULV as causing Fibromyalgia and CFS as per NIH Alter, discoverer of Hepatitis B & C, and FDA Dr. Lo recent research study. The NIH is researching the cause of these illnesses by putting the world renown  expert, Dr. Ian Lipkin, known for rapidly discovering the agents of emerging infectious diseases in charge of finding out what's going on.

Another prominent researcher is looking for patients who tested positive for XMRV. He works at the world famous Fred Hutchinson Cancer Research Institute and the University of Washington in virology and molecular biology.

So maybe you can the get the word out via your blog to determine if anyone was tested for XMRV as he wants them in his research. I am a fund raiser for Fibromyalgia and CFS and I am also a member of a very large philanthropic foundation. I am trying to contact researchers who are willing to investigate this disease as well as obtaining funding through my foundation."

I'm also going to forward this information to Dominee Bush who has a fantastic newsletter for sufferers of chronic illness. If you haven't signed up for her newsletter, I encourage you to do so. It really is helpful. Funnily enough, I had no idea who she was when I signed up for her newsletter. I happened to stumble upon it and liked it, so I subscribed. Believe it or not, I went to high school with her! Amazing, isn't it? I will also include the link to her newsletter at the bottom of this post.

So if any of you have tested positive for XMRV, please let me know and I'll forward your information on to George. If you would like to use this post or link back to it from your blog, please feel free to do so, in fact, it would be very much appreciated.

I have a post, funnily enough, about my distrust of doctors and looking for people that might actually be interested in looking for a cure or one that wants to treat the whole person. Then, I got the email from George. Things always happen for a reason!!

So here are the links that George has provided and again, if any of you would like to get information from George on this research, please don't hesitate to contact me at roselee3@cox.net. 

CFIDS Association of America

CFS Central

Retroviral Activity in CFIDS

ME Society of America

Fibromyalgia Newsletters