Notable ME/CFS Patients

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Aug 7, 2008.

  1. jasminetee

    jasminetee Member

    I just discovered this section in Wikipedia under "Chronic Fatigue Syndrome". I think their article on CFS is very good. I pasted the short Notable ME/CFS patients on here, I think we could add more to it, anyone is allowed to help Wikipedia alter their articles. PWCs I can think of offhand that are missing from this list are: Nancy Kaiser, the first Ampligen patient, Michelle Ackers, the soccer player, Cher, and Dennis Deyoung (the singer from Styx).

    # Rocco Baldelli, baseball player[1]
    # Olaf Bodden, former German soccer player[2]
    # Donna Flowers, former professional figure skater, participating in valganciclovir investigation[3]
    # Clare Francis, British yachtswoman and novelist[4]
    # Leigh Hatcher, Australian journalist and news presenter - who has authored a book on his experience with CFS [5]
    # Susan Harris, television writer and producer, who incorporated her experiences into the fifth season of The Golden Girls[6]
    # Laura Hillenbrand, author of the book Seabiscuit: An American Legend, the basis for the film Seabiscuit[7]
    # Blair Hornstine, a New Jersey resident[8]
    # Keith Jarrett, jazz pianist[9]
    # Martin Lev, British actor, former president of 'Action for M.E.', committed suicide 1992, age 33.[10].
    # Alastair Lynch, Australian rules footballer[11]
    # Peter Marshall, former British squash player[12]
    # Stuart Murdoch, British singer[13]
    # Andrew Oldcorn, British golfer[14]
    # Ali Smith, Scottish author[15]
    # Naomi Weisstein, American author and neuroscientist, completely bedridden since the 1980s

    I've been reading that some men are still being told by their doctors that CFS is a woman's disease. If I were a man with CFS I would bring this list in to my doctor with some of the mens' stories on it printed out as well since there are 9 men out of 16 people on this list.

    It's interesting reading Rocco Baldelli's story because he's had many muscle issues in the beginning, like torn ligaments and muscles and many of us have had similar issues with our bodies. I found this paragraph especially compelling:

    "In the following offseason, Baldelli underwent extensive medical testing to determine the reasons for his muscle problems and extreme fatigue after even brief workouts. Doctors discovered some "metabolic and/or mitochondrial abnormalities" but were unable to provide an exact diagnosis."

    This shows that our body tissues are greatly affected by CFS. I'd highlight this before giving it to a doctor or skeptical friend or family member. These statements also give us insight into what's going on with our own bodies. Clearly, this isn't just some flu-like symptom going on, which is what all the Symptom lists concentrate on after they list Fatigue. Also, these body tissue problems could be from FMS which often accompanies CFS.

    I would think it would be hard for doctors and others to argue against the facts stated in these Bios and it might help enlighten them as to what kind of disease we're really dealing with here.

    Also compelling are Rocco's attempts to get back into the game. When you look at the accomplishments of the people on this list I think it's hard to write them off as malingering whiners who just want to play sick as many of us are accused of doing.

    Here are also some of the Remarks on Naomi Weisstein, the last person on the list in a 1997 speech by Jesse Lemisch, her husband:

    "...when the disease hit, she continued her ferocious exercising -- exactly the wrong thing to do when this disease hits."

    "By 1981 she needed a wheelchair. By 1983 she was bedridden. She lived the nightmare that she had written about in "Psychology Constructs the Female," as an insane and sexist medical profession offered psychojunk to explain a woman's illness. The sharks now morphed into greedy drug companies, and medical insurers that wanted Naomi dead because she was so expensive. We fought and fought and continue to fight.

    Naomi has remained marvelously in touch, though she lives in a darkened room with her eyes covered against the light, rocked by terrible vertigo. The lab she had fought so hard to build went down the drain in 1987, after she had nearly died of esophageal hemorrhage and pulmonary embolism, and spent six weeks in St. Vincent's. The nuns crossed themselves to cover their fury when they found it impossible to throw me out of intensive care. But, with all this, Naomi has remained comical, hip, outrageous and sharp. She has continued her scientific work through collaboration, and is working on the notion of the brain as active agent."

    "After fourteen years in bed, Naomi is deteriorating. Two teeth broke off in a week. Her diabetes is worse, with frightening hypoglycemic episodes that make her shake. She wonders why the drug company won't give her the Ampligen that might save her, before all these secondary effects do her in. And she thinks about what a mean and barbaric time we live in. She knows that her life depends on an attack on the profit system, on medical care as it exists today, and on challenges to the standing order in every area."

    [This Message was Edited on 08/07/2008]
  2. byoungusa

    byoungusa New Member

    Thanks for posting this, very good article.
  3. cct

    cct Member

    If you do a "search" under "content" (upper left corner of this page) on the subject of "spokesperson", you will find several lists of famous people who are afflicted with ME/CFS.

    Many threads have been posted which discuss famous people who might be willing to become a spokesperson for the ME/CFS community.

    Some of these lists are very interesting.

    The CFIDS Association claims that they are trying to find a national spokesperson, with the help of Laura Hillenbrand, but I have not seen any progess on enlisting a person who would speak out for the ME/CFS community.
  4. binxi

    binxi New Member

    duncan armstrong- australian swimmer
    layne beechley- australian multi time world champion surfer
  5. jasminetee

    jasminetee Member

    there doesn't seem to be anyone willing to be a spokesperson for CFS. Then again after seeing all the flack Michael J. Fox got for standing up for Parkinson's patients and seeing how badly we're treated already, who can blame them?

    I think most of them have dreams of returning to their old lives too so they don't want to ruin that for themselves.
  6. cct

    cct Member

    You may be right about the famous wanting to be able to return to work without experiencing any "you're sick" repercussions.

    I just saw a little news clip about Terri Garr and the shunning that she received from her professional peers when she revealed that she was struggling with MS.

    People can be so mean!
  7. jasminetee

    jasminetee Member

    He may be able to play and do well for many years. I once could when my CFS went mild. I haven't met anyone who is afraid that CFS is contagious, except us patients, so he'll probably be OK there.

    I found some quotes by Terri Garr that I think many of can appreciate. She has a great attitude:

    I think it's interesting that she thinks that in the future they may find out that MS is 10 different things. Sound familiar?

    My favorite quote from Terri: "You don't want pity or random advice."

    I think it's good for us to see that people with MS and other diseases like that suffer many of the same social problems we do. It's sad that many people are so mean. I think life is a test and those people are failing big time.
  8. simonedb

    simonedb Member

    and cher

    but she got better i think

    dunno 'bout vidal............
  9. Rafiki

    Rafiki New Member

    I've been stalking you a bit lately. ;~) I know, you know... Been seeing that you've been struggling and wanted to say something but struggling myself and can't seem to think of anything that might help.

    Well, my mindful friend, we do know that all is impermanent. Does that help? You know, this too shall pass?

    Personally, given that my worst symptoms is the complete lack of synaptic activity and just a great sound of sloshing between my ears, it's the best I can do.

    My now rather infrequent posts here are the most energetic thing I do or have done for months. I know that everyone to whom I owe email, or a Facebook comment, or a phone call (NO!), believes I am actually communicating with others and is miffed. Ah well.

    So, what was I going to say to you now that I have rambled all over hither and yon and cannot even remember what thread I'm in -- seriously! Oh yes, famous people with ME!!! ??? Better put an OT in my subject line!

    I remember! I was going to say, re your Terri Garr mention that when I was misdiaguessed with MS and hung out at MS boards I found that, for many, the illness experience is identical to ours in many respects. I, for one, am sure that the patient populations overlap in a major way.

    So, I will not erase this mostly nonsense because I want you to know that I have noticed your struggle and that I care.

    Sloshing out,

  10. jasminetee

    jasminetee Member

    I can imagine that Rocco does look fine. I know I did when I was able to work full time and play softball and soccer with mild CFS. It would be great if someone like him could be a spokesperson for CFS but I think we can all see that it would probably hurt his sports career. Hopefully, someone famous who is retiring anyway can do this for us one of these days.
  11. jasminetee

    jasminetee Member

    Thanks for thinking of me. I'm so sorry to hear that you are struggling with doing worse too. Yes, you are right, all is impermanent, this too shall pass. I like the saying, "Act as if everything matters but know that nothing does." That's gotten me through some rough patches as well.

    Your post was coherent to me and quite humorous as well! :)

    It's good to hear that I'm not the only one who keeps falling behind in e-mail and PHONE cAllS-arg!

    I didn't realize you were Dx with MS at first. It's good to hear your take on how they're treated too.

    Hang in there,