Dr. Oz + CFIDS- just saw show

Discussion in 'Fibromyalgia Main Forum' started by sascha, Dec 3, 2009.

  1. sascha

    sascha Member

    much better portrayal. not enough time to get into it, but covered some key points. Dr. Donica supplied pertinent information that Dr. Oz didn't; like fact that men have the condition, that is has many symptoms besides exhaustion. a cfids patient diagnosed with XMRV told her story.

    did certain amount of justice to reality of cfids- of course incomplete- stated categorically that the condition is NOT in our heads. the patient had that experience of being told she needed psycho-therapy as her treatment (her only treatment). described how retrovirus works. listed symptoms besides fatigue, but not nearly all of them.

    DIDN'T: show how bad disease is for many people who are bed-ridden, house-bound, can't move, speak... the patient on the show manages to keep on working- that's not possible for most PWCs... didn't say that it can go on for decades with no end in sight... didn't mention MCS that many of us have... lots didn't get said, but big step taken here on mainstream tv.

    Dr. Oz DID push concept of exercise, however small, to help keep some degree of functioning capacity going, even if it's just stretching out a bit. emphasized that every bit can help (i suppose to fend off deterioration)

    so for Reader's Digest condensed version, it was ok, and i commend him for taking it on again and putting out there a much more accurate picture of CFIDS condition- Sascha
  2. TigerLilea

    TigerLilea Active Member

    The show isn't on here until 3:00 this afternoon.

    Dr. Pall's opinion is that for the people who don't get any form of exercise, there is almost zero chance of any recovery. He believes we must get some exercise each day, but to be sure not to get to the point of over-exertion and PEM.
  3. rausten

    rausten New Member

    Just saw show. If I had blinked, I would have missed the CFS part. As far as I'm concerned the information was slam-bam-thank-you-mam, and virtually useless. So it costs $400 to get a test for something we still have no idea is the real cause, or only just part of it. And where do Dr.'s go to find out more if the have a patient who the agree to have tested? Just eat right and do the best you can for exercise!!!! No list of web sites either. Not happy.
  4. dvdav2000

    dvdav2000 New Member

    Dr. Oz was a good segment. They gave it 1/4 of the show and opened the show with the XMRV.. excellent , generous placement... didn't see Dr. T drinking D- Ribose, or folding balloons in the background for the kiddies...lol...

    I feel good explaination, without pulling all of the fire alarms ( YET ). Contaminating the " blood supply " is the nugget that we must take away... if this is classified incorretly you will not be able to get life ins., or be turned down for pre-existing... if you have this marker... EBV, HHV 6 are all not biggie pre existings... if handled and politically masssed the wrong way this will be labeled the new A&%S... pleas e be careful that we get awareness... but go too far and X mrv will be subset with doom dx. All scientists will be careful I hope...

  5. goldielocks

    goldielocks New Member

    i just watched the show also i feel they did much better explaining cfs than the last show givin the time that they had i liked that they had a cfs m.e patient on they touched on alot of things but need to explain more but this was a big step for more bigger steps to come i hope.
  6. TeaBisqit

    TeaBisqit Member

    It was on at the same time as OLTL and I didn't realize it, so I watched Todd and Tea instead :p Maybe someone will put it up on Youtube.

    If they did at least associate CFIDS with XMRV or any virus, it is a small step. But I wish they would do some shows focusing on the severe cases, those who are housebound and bedbound and have been for like twenty years. They need to show the severity of the disease and stop showing people who can work.
  7. TigerLilea

    TigerLilea Active Member

    I thought the show was good, especially after having seen the first one last month. Both Dr. Donnica Moore and the patient, Gina, did a good job of presenting CFS.

    Dr. Oz did mention exercise, however, he did not push it as a cure in any way.

    Very well done!
  8. TigerLilea

    TigerLilea Active Member

    Definitely check out the information on Dr. Oz's website. Dr. Donnica Moore wrote the article, and it is very well written.
  9. joanierav

    joanierav Member

    i thought it was excellent. im going to e-mail him a thank you, since he probably got so many negative e-mails from his last show. also very nice of him to follow up so quickly from the last one. i loved the look on the audiences faces. all so serious. i could almost feel their compassion. joanierav
  10. onset1990

    onset1990 Member

    okay, I'm "okay" with this segment although I was nervous at first. Far better than the last one on fibro. But he did say "women" far too many times in the beginning (maybe he's glad he might not get it!). He did clarify later that it is women + men, but far more women. I don't know why that mattered so much to him.

    The good...

    •Donnica was succinct and got in a lot in her short time. But the part about the test was premature. Most doctors won't know what to do with the results of a test yet. But at least she mentioned it's expensive and prob not covered by insurance. For me, that points out how unattended this disease has been/is.

    • Great quick presentation on retrovirus vs virus and the lifelong component.

    • Having a patient on has more impact than saying "there are women out there who are sick"

    The bad, but...

    • Too much focus on fatigue or exhaustion vs the cognitive and immunological impact (I mean, yes, I'm upset at the fatigue but I'm more worried about my body's defenses against cancer and heart disease with CFS and with not being able to work full time - also a risk to my longevity)

    • Too many quick photos of women with their head in their hands at work, and looking distressed. Had a psychological impact that I don't think they would have done with AIDS sufferers. By the way, this was my field, advertising, so choosing these images was my job previously. I didn't like the photo collage.

    • I know why he'd focus on the exercise - the body deconditioned is a threat... but in that short a time, I could have done without it. It smacks of it being our fault if we don't get better, or we get worse, and I haven't seen that to be the case.

    • The patient was very nervous. I can see some Drs out there thinking she's got a nervous disorder not a disease. After all, we are all suffering from psychological effects of chronic illness - but AIDS patients aren't called hysterics (maybe because initially they were predominately men?)

    I'll be happy when we can have a presentation about CFS that doesn't have to say "I jumped horses before I became ill" to prove she isn't just sedate, and they don't have to keep saying this is an illness that many doctors believe doesn't exist. I don't ever need to hear that again.

  11. skeptik2

    skeptik2 Member

    At first I said, 'oh no!', when he said it was women with a possible
    retrovirus; I was so glad when the incredibly concise and highly
    verbal Dr. Donnica corrected it.

    I do believe this will heighten awareness considerably, and may
    help us be believed, validated, and maybe get some help from
    our friends and families, at least.

    I wrote him after his first show, telling him he was smart, so I
    think he would be interested in the XMRV findings in the Science
    magazine. This is the article that should be broadcast far and
    wide; it cannot be refuted, or it would never have been in the
    most prestigious journal in the world.

    I do believe we must move our bodies some each day if at all
    possible; the deconditioning we can get is severe and makes
    us frailer and frailer with each passing year. The suggestion to
    just make it to the mailbox was a good one; if your mailbox is
    in front of the house, not a "block" of them 25 houses away!

    I will write and thank him for his serious approach to this new
    XMRV finding and that I hope he will do a series on CFS,
    showing various degrees of the illness. I'm sure he could get
    a bed-bound patient airlifted to his show and brought to a bed
    in his studio, maybe with Dr. Cheney in attendance! That would
    be something, wouldn't it?

    HOPE is around, but PATIENCE will have to be found...

  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I just thought of something, we may all be forgetting the most important thing Dr. Oz's segment did.

    Imagine there is a woman (most likely) who is having so much fatigue and memory problems and aching that she is having a hard time continuing to work. So this woman sees the clips on the Dr. Oz show (because her mother who stays home and watches Dr. Oz told her daughter about the segment).

    So this woman has seen doctor who said she needs a vacation, she is working too much, she is at a time in her life where depression is common for women. So she is taking ant-depressants. She sees a little, but no significant improvement with the anti-depressants in three months.

    So she is just continuing. Maybe she goes back to her doctor, and he gives her different anti-depressants.

    Imagine this woman seeing Gina and her story. Suddenly, this woman says, "That sounds just like me."

    So this woman fires her doctor and goes to another one. Then, she asks, "Do I have chronic fatigue syndrome?"

    The doctor says, "no, you have depression." But this woman remembers Gina's story, of many doctors saying that to her too. So this woman looks up information on the Internet. And she sees that the CFS symptoms include mild sore throats. Oh, she has that. And sound sensitivity, she has that.

    And so she is empowered to find the doctor who will recognize her true illness.

    Dr. Oz's segment empowered many women with CFS with power to reject their doctor's misdiagnosis. This is huge for them. It is the most important thing that I believe could have come from this segment, and it did.

    In time, doctors will have to accept CFS as real only because their patients who have it believe it is real (thanks to Dr. Oz) and doctors want patients.

  13. simonedb

    simonedb Member

    glen right now your posts are the only ones at doc oz site, what happend to the other ones from yesterday? I posted on there as did a number of other people.

    afterthought--ok this is weird, after i wrote the above i went and got your link from yesterday to go to oz discussion board:
    and that one shows everyones posts, but the link you put up today only shows your posts...I dont get it..
    [This Message was Edited on 12/03/2009]
  14. mbofov

    mbofov Active Member

    thanking him for the show and giving a very brief outline of the CDC's indifference and neglect and how so many people are bedridden or unable to work and have been sick for decades.

    I am sure the more comments he gets the better.

    I hope he does not get hit by the medical establishment which seems to have a vested interest in discouraging any real interest in CFS! That will be interesting to see, what follow-up, if any there will be --

  15. onset1990

    onset1990 Member

    "Dr. Oz's segment empowered many women with CFS with power to reject their doctor's misdiagnosis."

    I forgot he did that! I like his shows, even though he has to go so fast
  16. dvdav2000

    dvdav2000 New Member

    The Dr. Oz TV piece was well done. For some of us who have been involved in this " struggle " for years this piece was ok and I even lrarned something new re: animation with the cells, and invaders..lol... ... for those viewers that may have symptoms or who have not been " verified " by docs that are not informed then this was great and a warning professionally... This was 10 time better than the Dr. OZ with Sr. T. piece.

    Hey.. we are getting there.. and with that...

    The CFS Clinic in Miami/ Kendall started by Nancy Klimas, M.D., and a capable staff opened for business today... it is a truly great day for being a " sufferer "... nothing in life is free but at the Klimas Clinic they will do all the tests that will dx you, get the legal definitions if needed, and get an rx by one of the best in the world... for what I gave seen a very fair price... WOW...
  17. QuayMan

    QuayMan Member

    Can you re-post what Dr Pall (who is a PhD, not an MD) wrote (post #2 in this thread)

    I remain to be convinced. There may be a correlation - the people who are able to exercise may have best chance of a good recovery but I'm not sure about it causing it. Similarly, people who are bad may not be able to exercise and often people who get bad stay bad (for one thing, if you're severely affected, it's so easy to overdo it and have a set-back).

    There is no real evidence that exercise leads to recovery in the literature.

    And I think the recovery rate is pretty low in this illness especially if you don't get better in the first year or two (possibly if you have EBV you can better later).

    I have come people who are not that "functional" because they use up a lot of their energy on exercise programmes. Friedberg has published research which used pedometers which found people encouraged to do walking programs can on average do less total steps across the day - so the exercise can simply be replacing other activity.
  18. TigerLilea

    TigerLilea Active Member

    Dr Pall and I had been discussing exercise via email several years ago. Unfortunately when I purchased my new computer my emails didn't get transferred over from the old computer so I lost all my emails. I did print off some of these so if I find that I have it, I'll let you know exactly what he said. This goes back to the days when he was still at WSU, before his book.