Re: Cheney and Lerner presentations

Discussion in 'Fibromyalgia Main Forum' started by romalaw, May 30, 2008.

  1. romalaw

    romalaw Member

    Am I the only one who is disappointed at the recent presentations by Dr. Lerner and Dr. Cheney. I was really hoping for some new CFS information and breakthrough treatments. It's so discouraging when so little progress is made by even the experts.


    All the reseach and experimentation still leaves us grappling with this chronic illness that has taken away our lives as we knew them.

    Just venting, I guess
  2. marti_zavala

    marti_zavala Member

    I cautioned against this on several threads.

    We will know what Cheney and Lerner present long before a public announcement is made.

    There are so many Cheney Lerner patients - we are part of the new ideas, we are the guinea pigs.

    These presentations are just to get the rest of the world, medical or otherwise, up to speed.

    There was nothing in the pre-event press releases that would have shown a new announement.

    This expectation makes Cheney and Lerner look bad but they did not claim that they were making a breakthrough announcement.

    Any breakthroughs will be 1-2 years after we have discussed the pros and cons HERE and on other boards. It will not be NEWS to us.

    Marti
  3. ladybugmandy

    ladybugmandy Member

    excellent point.

    however, there was some evidence that lerner's presentation was gonna be big. and it may have been big...maybe we aren't looking at it from the right perspective.

    we were hoping for him to say he cured everyone with this magic pill....its an excrutiatingly slow process..maybe it takes even longer than the 6 yrs he followed the patients, to fine-tune the recovery...?

    sue
  4. acer2000

    acer2000 New Member

    I don't think anything dramatic has changed. Lerner treats patients that he thinks fit his research with antivirals. Some feel better, some don't. He believes in the chronic herpesvirus theory of CFS and he thinks its linked to a heart infection. In the patients who fit his theory and who could tolerate the treatment, a large portion of them improved. This is the same thing he has been saying for years, its just now that Stanford did a simlar study, its getting more press.

    The real question is why did people get better enough 6 months to take them off the drug at stanford, and they take years according to Lerner...
  5. romalaw

    romalaw Member

    You all made good points.

    I have followed Cheney's research for the ten years I've been ill and have experimented with much of his protocol and have found some of it to be a great help to me. I have a lot of respect for his work and feel he is very dedicated to unlocking the mysteries of this illness.

    I saw Dr. Lerner when I first got sick and nobody had really heard of his CFS work back then. When I saw him again this year, I found he had tweaked his treatment protocol somewhat but it was basically the same. Maybe he felt it was "big" because he's finally getting recognition for his work.

    There has been such little progress in the ten years since I became ill.

    It just seems if research could find effective treatments for AIDS that (which was 100% fatal) that have not only extended lives but also greatly increased levels of functioning, that they could have done the same with CFS by now.

    Many of us who have this condition are very disabled from it. It seems to me most of us experiment around with lots of traditional/alternative treatments to find a combination that helps us, but very few of us ever recover a quality of life even close to what we had before we were ill.


    [This Message was Edited on 05/30/2008]
  6. marti_zavala

    marti_zavala Member

    "There has been such little progress in the ten years since I became ill.

    It just seems if research could find effective treatments for AIDS that (which was 100% fatal) that have not only extended lives but also greatly increased levels of functioning, that they could have done the same with CFS by now.

    Many of us who have this condition are very disabled from it. It seems to me most of us experiment around with lots of traditional/alternative treatments to find a combination that helps us, but very few of us ever recover a quality of life even close to what we had before we were ill. "


    Boy, am I with you here. I used to see Dr. Salvato in Houston. I was so hopeful as she was the top Aids/Cancer and CFS doctor in HOuston. She was treating AIds patients before their life expectancy was extended. Then when they were now living again, I thought help for me was right around the corner. NOT!

    And I don't know why....

    Marti
  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Progress is evolution, not revolution. CFS is so complex, involving multiple systems, has cellular level and genetic abnormalities. So, different researchers are looking at different aspects. But, I do think a lot of progress has been made in the last twenty years. We went from an unknown virus affecting people in Incline Village, to knowing it is same as ME in Europe. We know so much more of what is going wrong. We have a list of meds and supplements to try. And most see some improvement with the right combination for them. We know the B12, Fibrin, Homocystene, blood pressure and Vit. D factors. We know the gene activation abnormalities. We see breathing and oxygen and mitochondria are part of the picture. We see the connection to the autonomic system and we have learned what causes the FM pain. And, a medicine has been approved and is being advertised for the FM pain.

    Just last year, the second day exercise test revealed more, and could lead to diagnostic test. And Sakudo in Japan announced at the Florida conference that a blood test distinguished from CFS and healthy with 97%.

    Remember, diabetes and arthritis has been recognized a lot longer, and there is no cure for them either.

    Tina
  8. ladybugmandy

    ladybugmandy Member

    i think the 6-month valcyte thing was released by stanford prematurely. michael manson is 98% recovered NOW...he kept improving long after that article came out and i know he took the antiviral more than 6 months.

    i would bet that all the initial patients are either still on some dose of valcyte or valtrex, or have relapsed.

    sue
    [This Message was Edited on 05/31/2008]
  9. gettingwell

    gettingwell New Member

    How do you know Michael Mason's current status? Has that been published somewhere?
  10. acer2000

    acer2000 New Member

    I agree sue, I don't think that everyone was 100% better at 6 months, but I do think there is a discrepancy here. He felt well enough to go on a hike with his son at month 4, after being sick for almost 2 decades. It showed people who were sick for years had significant improvement in under 6 months. I am just saying I'd like them to figure out why their results differ... It will be interesting to see the new study.
    [This Message was Edited on 05/31/2008]
  11. ladybugmandy

    ladybugmandy Member

    arosen...you are right. montoya told him not to go on the hikes but he did and i guess he did not relapse.

    gettingwell...someone on this board asked dr. montoya, who said that manson now considers himself 98% well...and this was a while ago.

    sue