This could be GREAT for CFS/FM Awareness..........

Discussion in 'Fibromyalgia Main Forum' started by KingNeptune11, Oct 4, 2008.

  1. KingNeptune11

    KingNeptune11 New Member

    If anyone was watching the Major League Baseball Playoffs last night, on TBS, there is a player on the Tampa Bay Rays named Rocco Baldelli who has CFS......They are calling it a Mitochondrial Disorder though, which could be HUGE for our illness........I think they called it Mitochondrial Myalgia........Just google his name, Rocco Baldelli and research his story.......He may be the Lou Gehrig for our illness.......which is exactly what we need to bring awareness, stimulate research dollars and finally get some respect for our community.......

    The announcers on TBS actually discussed his illness with respect and in an educated manner and I did not hear one comment about "Chronic fatigue" or vague terminology which dismisses our illness......Rocco is getting lots of support for his condition from teammates and fans because he was such a huge talent and the next Joe Dimaggio according to many experts, until he came down with this 3 years ago......

    The great thing is that Tampa Bay has a GREAT chance at making the World Series, which would give this illness NATIONAL COVERAGE during prime time TV for millions to see........If this happens, it could be a huge turning point for CFS and FM patients everywhere......Rocco is receiving hundreds of letters asking him to be the "spokesperson" for this condition, which he may consider once the season is over.......

    This could be so GREAT for all of us......Especially since they are finally calling it a Mitochondrial Disorder, which it is......whether via virus, bacteria or mycoplasm......infection........

    Lets hope that Rocco Baldelli will give us all hope for some serious research and recognition.......Personally, I think they will call it Rocco Baldelli's Disease, just like Lou Gehrig's Disease(ALS)........
  2. victoria

    victoria New Member

    in a somewhat roundabout way, is that it looks like Oprah's TV doc, Dr. Oz, is looking for Lyme pts to tell their story after watching the documentary 'Under Our Skin' -- apparently the link to contact is gone now, likely they were overwhelmed.

    I just KNOW CFIDS/FM/ME will be mentioned as so many with lyme and other stealth infections from ticks (like mycoplasma) have been subsequently dx'd with one or more of these infections.

    [This Message was Edited on 10/04/2008]
  3. Rafiki

    Rafiki New Member

    Thank you so much for reporting back to us re this!!! I hate that I get all excited when I find out that someone is ill with this but, well...

    It is so important that it be seen that people who are fiercely passionate about what they do can be stricken by ME. It is people like Rocco who are such eloquent proof of this.
    I loved what I used to do. I was grateful every single day that I got to do what I did for a living. I felt like the luckiest person in the world. But, it is too often thought that those of us with ME would rather just stay in bed. Rocco Baldelli certainly puts the lie to that.

    Also, thank you so much for reporting so thoroughly on the words used to discuss it. I am delighted to read that it was discussed in a respectful way.

    I would also like to say, thank you Rocco Baldelli!

    Peace out,

  4. Rafiki

    Rafiki New Member

    I will not belabor the point but I can think of several ways that ME being mentioned as a side issue to Lyme Disease could be bad news for those of us who have classic ME in terms of awareness, research and clarity.

    It is such good news that we may have a champion. Let's keep this thread to Rocco Baldelli and the great strides we just made on a widely watched, nationally broadcast event!

  5. Atlanta8

    Atlanta8 New Member

    Did they actually say "Mitochondrial Myalgia" was aka CFS/ ME?? If they didn't that's almost as bad in my mind - like he/ they don't want it to be linked to CFS. I like the term they used, but there are enough issues regarding names so just call it as it is!

    It would be nice if he can get it in the spotlight a bit more and represent us. I hope it leads to some 'good publicity' though.

    Thanks for posting :)
  6. gapsych

    gapsych New Member

    Thank you so much for pointing out this article. At first I thought he might be playing like some other celebrities who supposedly had CFS and then recovered.

    However he is just sitting out and is on the disability list. I would like to know more information about this person.

    Does anyone have any idea how to contact him.

    This is really hopeful.

    Again thanks!!

  7. monicaz49

    monicaz49 New Member

    How is he able to still play with CFS? Maybe he has a mild version? If so, on one hand it's great to have someone in the public eye bring recognition to CFS. However, if it is mild and he is still playing..we'll that could also relay the message that CFS is mild and not debilitating whatsoever.

    I do like that they are not refering to the name so much though.

    Thanks for sharing this.

    Oh! just read gapsychs reply and learned that he is actually not playing at this thx.

    [This Message was Edited on 10/04/2008]
  8. monicaz49

    monicaz49 New Member

    Here is one article I found.
    Its weird because now that a recognizable person in baseball has the condition they give it a more substantial name, one that does not simply imply being tired. Amazing. Also in this article they don't even mention the fact that "mitochandrial whatever it is" is another name for or related to CFS. They even have a nick name for it! "Mito". Sheesh...where have I been?

    Here's one article:

    Rocco, You're Not Alone

    by Cristy Balcells
    Posted in

    * Adult Patients
    * Living with Mito
    * News

    Tampa Rays MLB player Rocco Baldelli Living with Mitochondrial Disease

    He's in the news. His symptoms are vague. He looks tired.

    Most people don't have another point of reference for the disorder that yesterday's New York Times allures to as a "mysterious cell disorder" which causes occasional "muscle weakness".

    For those of us who understand the unpredictable complexity of mitochondrial disease, it's not so mysterious, just exhausting. As my friend 26 year old Lisa Parker (diagnosed when she was 24) told me when we first met, "I thought I had the flu...but then I never got better."

    So his story makes the reader think, "hmmm...poor guy has some rare condition. He probably picked it up while traveling. But he was fine before - how bad could it be? Get back in the game."

    In fact, in some instances, Baldelli has received scathing reviews from fans calling him "a slacker". After all, like most people with mitochondrial disease, "he doesn't look sick".

    Five years from today, when a celebrity is diagnosed with this "mysterious cell disorder", there will be a general public nod of recognition for the label which describes this confusing and complex set of neuromuscular symptoms. Ten years from now, we will all know about mitochondrial disease ("Mito"). It is my passionate hope that our efforts to raise awareness about the disorder will reach people like Rocco Baldelli and his team so he knows that he is not alone. Mitochondrial disorders affect thousands of adults and children regardless of their age, lifestyle, gender, socioeconomic status or race. Treatment is supportive; there is no cure. Quality of life is of utmost importance.

    A conservative estimate suggests that one in 4000 individuals in the US have, or will develop, mitochondrial disease. However, that estimate is about 10 years old (ancient in our current information age) and we are only beginning to get a glimmer of understanding of the role that the mitochondria (the powerhouse of the cell) have on our health and aging process. Five years ago only a handful of basic science researchers were publishing about the link between mitochondrial dysfunction and diseases of aging such as diabetes, Parkinson's and Alzheimers. Today, we (MitoAction) are partnering with major biotechs and pharmas such as Sirtris and Edison to support their efforts to find drugs that will not only effectively treat mitochondrial disease patients, but will improve mitochondrial function in healthy individuals as well, potentially slowing the degenerative aging process.

    I hear so many stories from adults diagnosed with "Mito" who are still coming to grips with the disability they didn't ask for. Many of these patients were successful, bright, athletic, world travelers, mothers, husbands, etc. before the onset of puzzling and multi-system symptoms. Stand two people together with the exact same mitochondrial disorder and they won't necessarily mirror the same symptoms. So many organs can be affected, and in such a vast variety of ways - after all, the mitochondria are providing the energy for the body to function at an incredibly sophisticated and accelerated level. Nonetheless, "Mito" is an energy metabolism disorder and the exhaustion, muscle weakness, and unpredictability of the day is common ground for all children and adults who are faced with a life which includes mitochondrial disease.

    Courage, Rocco, courage.

    Our gift to you is community, a place where you can educate yourself about this complex disease and get the encouragement you need to make the most of your life. In other words, it's about living anyway today, and you are not alone.
    [This Message was Edited on 10/04/2008]
  9. SpecialK82

    SpecialK82 New Member

    Thanks so much for posting. I'm very excited at the possibility at a spokesperson like Rocco. I am so sorry for him and what he is going through so publicly but I hope that he can turn this into something positive.

    It's very interesting how they did not mention FM or CFS by name - almost like they don't want people to stereotype him from their own misconceptions.

    I am not a baseball fan but I will start rooting for Tampa Bay Rays and hope that Rocco can make the best of his condition.

    I thought from what I read that he was playing - which I was amazed at! Maybe I read it wrong....

    Will keep watching with interest to see how he does.

    Thanks again!

  10. Rafiki

    Rafiki New Member

    that they say only that he has a mitochondrial disease.

    There are many established mitochondrial disorders. They/he may want to put some distance between himself and ME/CFS. Who can blame him. It's a career killer in so many ways.

    We'll see how it plays out. No pun intended.

    Poor guy.

    Peace out,

  11. jasminetee

    jasminetee Member

    stated that this guy has CFS but I'm not positive. However, I don't see any mention that this Mitochondrial Disease is CFS in any of the articles I looked at just now. How do we know it's the same thing?

  12. Rafiki

    Rafiki New Member

    I'd read about him, too, and CFS was spoken about.

    We don't know that he doesn't have one of the better understood mitochondrial disorders.

    We'll have to wait and see, I suppose.

    Peace out,
  13. jasminetee

    jasminetee Member

    We'll just have to keep an eye out.

  14. KingNeptune11

    KingNeptune11 New Member

    Rocco Baldelli is playing now, he started back with the team in Aug I believe, after missing most of the last 3 years......There have been all kinds of articles on him that he cant "practice" because he cant run and work out with the team......He gets exhausted after the smallest of things......sound familiar......

    I realize that they may try to "brush over" the fact that he essentially has CFS/FM, but I think this might be the person to carry the torch for us......First of all, Cher and others could not find work if they admitted they had CFS.......Michelle Akers on the Olympic Womens Soccer team just faded into the woodwork, I think the pressure was too great to be the spokesperson and I think the ignorance was still rampant back in the late 90"s.......

    I believe with the minor recognition of the Georgetown Study, the Fibromyalgia ads in magazines and TV and the small increase of acknowledgement we are getting, this may be the "perfect storm" for the right person to step forward to represent us......Rocco Baldelli is getting alot of support from teammates and fans, he is very well liked.......I think this may be our Lou Gehrig.....

    Now, I realize he may stick with the Mitochondrial Myopathy diagnosis, but that sounds like the perfect name for our illness anyway.......We need to convert ourselves to this diagnosis, even if we do it on a grassroots level.......Chronic Fatigue Syndrome is such a joke of a name......Its like calling Parkinsons, Chronic Shaking

    I have said repeatedly on this board and many others that we have a Mitochondrial Disease, whether it is caused by a virus or a bacteria or least we have a more legitimate name to approach doctors with and to raise research money......Maybe we need to lobby for Rocco to be our spokesman, but either way, I am now going to approach my doctors with this information.....

    Some of the articles I read, it sounded like Cleveland Clinic was helpful to him and so was the Mitochondrial Research Societies.......Lets just convert ourselves to "Mito" patients, forget lobbying and all the politics of CFS......Lets just attack this illness with this new info and take our health care to the right doctors......I am going to find a specialist who deals with these Mitochondrial Illnesses and find some answers this way.......

    As ROcco said, there is no cure, but there are things we can take to improve our lives until they come up with something.......Lets hope Rocco makes the World Series, then we will get MAJOR coverage of our illness, whether they call it CFS or not......Personally, I dont want to call it CFS and I dont want ROcco to call it soon as you say that, you are black balled into the abyss.......I have Mitochondrial Disease and that is what I am telling people from now on......Just like the baseball player......

    By the way......Rocco used to be a very athletic outfielder, now he has to DH, which means he only bats now......He cant play in the field because of his fatigue.......SO he is still hurting and it looks like he is not going to recover and look normal again, like people are worring about......The announcers really gave a good story on him........
  15. SpecialK82

    SpecialK82 New Member

    Thanks again for the follow up info. I have to say "chronic shaking syndrome" did make me laugh.

    I wonder what they did for him at Cleveland Clinic. I went to a neurologist there years ago when this first started (mainly because I was presenting with neurological symptoms early on) and he basically ruled out MS and gave my doc here a few more suggestions on tests to run but he did not come up with FM/CFS as a possibility.

    I'm wondering what their current treatment protocal would be??

  16. victoria

    victoria New Member

    and proven over and over... is the old adage,

    There's no such thing as bad publicity

    the more attention one way or another, the better. Some will disagree of course... which can always be discussed elsewhere.

    I really do wish they would devote more research to all these 'autoimmune disorders' as I do think there are many infections at the basis of them. I believe prohealth agrees, given the number of articles on almost any disease etc that is in their library that has been connected to CFIDS/FM/ME.

    Peace to everyone,

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