How far do you think we are from a cure for ME/CFS?

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Apr 15, 2008.

  1. hubcap_halo

    hubcap_halo New Member

    I know this is a very broad question, but I'm curious what some of you patient researchers are thinking. As well as lay folks like me.

    Many things are coming in the future--stem cells (now synthesized, not from embryos if I understand correctly), nano technology, genetic research for gene level cures.

    Sure, some of us have been "cured." In my 12 years of ME/CFS I've had periods of feeling 100%. I believe the Teitelbaum protocol helped me immensely at one time. Chinese medicine at another. Yoga, healthy eating, qi gong, etc. Some are getting better on Valcyte or Methylation, but it seems these are not cures, at least in their current stages.

    I'm talking about a DEEP, REAL, LASTING CURE. Not a cure where you move to the desert and do nothing but juice kale all day.

    I'm talking a cure that restores you to a level of health you enjoyed prior to becoming ill. For me that was a very high level of health. Sleep 8 hours a night and wake refreshed. Work full time. Before that school full time and work part time, able to deviate sometimes from ultra healthy diets with no ill effects. Able to get sick and recover in a week.

    I'm talking about a cure that completely corrects the immune/endocrine/nervous system dysfunction.

    What's your opinion? How far from a cure are we?
    [This Message was Edited on 04/15/2008]
  2. SweetT

    SweetT New Member

    I don't think that any disease will be cured these days. There's more money to be made in managing the symptoms.

    I truly believe that the cure for cancer and AIDS is out there. It's just contained, because the medical and pharmaceutical industry would lose too much money if it got out.

    You'd better believe that if there is a cure out there, it won't be FDA approved or covered by health insuruance companies. Someone eccentric living in the woods or mountains will have it, and the government will have labeled him or her as having severe mental illnesses, to scare the public away from the information.
  3. spacee

    spacee Member

    Discovered by Paul Cheney. Usually THEN comes the cure or at least better treatments cause then big Pharma sees big potential to research meds.

    At least that is my take on it.

  4. ladybugmandy

    ladybugmandy Member

    i think a cure will come along when gene therapy is finally perfected....maybe 50 to 100 years?

    if our illness is in fact caused by a virus and antivirals help us, maybe we can maintain good health with maintenance antiviral therapy with valtrex for example. i heard that dr. lerner still takes a small dose of valtrex but i am not sure.

    there must be some damage done to our bodies (especially our immune systems) so i am not sure if we will ever be the exact same as before we got sick.

    k. loomis of the hhv6 foundation told me that when a person gets mono for example, their immune system is "permanently scarred".

    i am still hoping and praying that i will be able to resume a somewhat normal life at some point and maybe i will be so happy to be better that i won't care if i am not the exact same as i was before i got sick.

    good luck

  5. doxygirl

    doxygirl New Member

    A sad reality that is setting in with me is is the TRUTH it is much more profitable to keep us sick than it is for us to be cured!

    With modern technology today there is NO reason to not have cures and or treatements for MOST of these awful diseases going on....

    It is sad but SweetT is right Iam afraid the harsh truth is that we are no good if we are healthy!

    And while Iam on a roll I may as well go ahead and say that at this point I am not convinced that this disease has not been inflicted intentionally ....

    if you put together the equasion it definatly does have the potential to add up very nicely!
    Just my two cents:)

  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I do not think a cure is soon, or at all. I think of it like Diabetes. There is no cure for diabetes, but there is a way to function almost normally with it. How many people have diabetes?

    And they are further ahead on MS than they are on CFS. MS has been accepted and studied for many years, no cure yet. And, how many have heard of someone with MS? many. But CFS is still something where people say, "What's that?"

    But, I expect soon, like within five years, we will have a treatment that works. I think they are close. In fact, if all the researchers and doctors who treat this could get together and go off for six months with 200, I bet they would figure it out now.

    They are not working together, although they share the results. But, then the others take that and propose a theory and test it. Then that doctor discovers something and shares it.

    So, it is progressing slow, but so much has been discovered in last ten years, and we seem to have eliminated so many things and discovered so much, that I believe a treatment is close.

    And by the way, I expect it will be something affecting the hypothalamus or something neurological.

  7. jprr99

    jprr99 New Member

    I'm sorry but I don't subscribe to these conspiracy theories some poeple here have mentioned...(you know the old "you can't fight city hall, they want to keep us sick" mentality). I do believe the research is working towards a cure sooner rather than later. There are success stories. I for one am frankly fed up with the pity parties I see on this Message Board every single day. What good does negativity get us?!?! We must stress the positive!!
  8. spacee

    spacee Member

    It doesn't just affect CFS. It is a whole new way of looking at chronic illnesses.

    Dr. Bell told my friend at her appt last week that it is BIG.

    Personally, I think/hope it is the thing that gets researchers very excited and on board with the study of the new way of looking at things.

    I hope Cheney gets some kinda big award for it. He deserves it.


  9. Slayadragon

    Slayadragon New Member

    I don't think that there ever will be such a thing as "a cure" for CFS, because it seems to me that it's too multi-faceted for that.

    Seems to me that 50 or 100 years from now, we're still going to be fiddling.

    I now think that CFS has a root cause of toxicity that is too much for the body to handle. Maybe if you could "fix" this, CFS would be fixed.

    With toxicity in the environment getting worse by the minute though, it would have to be a pretty good fix.

    Not that much different than figuring out how to keep people's weight and cardiovascular systems normal while eating three "Super Size" meals from McDonald's per day, I think.
  10. msbsgblue

    msbsgblue Member

    I agree about te toxicity in our world. In my opinion I think our gov'e knows that too make toxins due to gov'e experiments, waste dumps, nuclear dumps and much more are causing this.

    If they ever admitted it, they would be responsible for us all.
  11. SpiroSpero

    SpiroSpero New Member

    In my eyes there will be a cure as soon as the cause of CFS is known.
    Look at Diabetes, Cancer, AIDS. We know to some degree how they work and we know how to treat them, maybe we don't have cures yet but science keeps digging more and more into these fields. You can almost live a normal life with each illness except some sorts of cancer. When will it be able to let organs grow in laboratories and transplant them? When will it be able to inject stem-cells and let organs grow or repair themselves within our bodies?
    As soon as the cause to CFS is known we know where to start the treatment.

    DRAGONSGIRL New Member

    I'm with sweet all the way!!!
    Cures are already out there!! But the powers that be will never let the public have them! They'll lose too much money that way.
    In the same way we're paying these stuid inflated gas prices all over the world.
    Now they've started putting out vehicles that run on other things besides gas driven engines. But who can afford them?
  13. TeaBisqit

    TeaBisqit Member

    I just want something that works, even if I have to inject it into me every day or every week. I just want to be able to have a life without pain and fatigue and lightheadedness again. I wish they would at the very least release Ampligen and let us decide if we want to try it.
  14. spacee

    spacee Member

    Please be sure that I am saying CAUSE not cure.

    It is based on the research that he has done for the past years since his heart transplant. I think a good start on the info is in his 2006 DVDs.

    He is about to speak at a conference in May in California which will be audio taped but he usually uses so much power point, I am not sure how that will work.

    Then he is going to Germany to speak to doctors there.

    It was Dr. Bell who told my friend with CFS that Dr. Cheney had found THE cause and that it was going to announced shortly.

    I am not discouraged that it isn't the cure, YET. I think it is big to know this.

  15. pw7575

    pw7575 New Member

    Thank you for sharing that information with us Spacee! It certainly sounds promising. I hope whatever Dr. Cheney has found out about CFS will indeed be of great significance.

    Here is what I found on another site about Dr. Cheney's big news.

    "Dr. Paul Cheney will be the opening speaker at the 15th International Symposium of Functional Medicine in Carlsbad, CA on Thursday May, 22. He was given the privilege of speaking for the entire morning session of the first day. This is a high profile meeting with 800 to 1,000 attendees gathering from around the world for the four-day conference.

    A 10-person program committee questioned Dr. Cheney at length for two hours via conference call before offering him this opportunity. He will be presenting his current diagnostic and therapeutic model for CFS. This is rather amazing in that the symposium topic this year is pain, but it was felt that Dr. Cheney's work not only offers groundbreaking info on CFS, but also has such profound implications for a great many chronic conditions that his work needs to be presented now."

    Take Care Everyone!
    [This Message was Edited on 04/16/2008]
  16. hubcap_halo

    hubcap_halo New Member

    I agree with many that I would be so happy with an effective treatment that allowed me to live a life similar to someone with (some forms of) diabetes and even some HIV patients I know who are very highly functioning with theire meds.

    Very excited to hear what Dr. Cheney has to say.

    I've been disappointed in the past year with Valcyte, to say the least. But it has at least re-inspired me to take my healing into my own hands and make it (again) a 360 degree affair with diet, yoga, qi gong, TCM, meditation, lemon water, another look at Teiteblaum's protocol and....well just everything that helped me into my semi remissions in the past. Remissions that at least allowed me to make a living. But I got sick of just being healthy enough to work but not date or socialize on any consistent basis. An effective treatment that could help me maintain 75%-80% health would be so welcome. I find I can achieve those goals for a while, but a cold or any stress would knock me back.

    I'm optimistic.

  17. ladybugmandy

    ladybugmandy Member

    hubcap...wondering if you could see dr. lerner? he often adds valtrex to the valcyte and treats for longer periods....i have heard some success stories..

  18. hubcap_halo

    hubcap_halo New Member

    I appreciate the suggestion. But I'm working with a doctor of Chinese Medicine and on very strong herbs that seem to be working. I'm making very slow progress, but progress nonetheless. And I'm not "herxing."

    I'm going to stick with the non 'strong-antiviral" approach for a while and see what happens. My moods are also so much better with the meditation and the general healthy routine I've developed.

    It's like every hour I have a little "get healthy" assignement and even if it's all just placebo, it's giving me a sense of participation and control that I didn't have when on Valcyte.

    For some the AV's seem to be the answer, but I know that for me, more gentle modalities are the way.

    But thank you for the suggestion!

    I'm so curious to hear what Dr. Cheney has to say!

    Hope you are well.
  19. inbetweendays

    inbetweendays New Member

    there is no money in curing anything.....
  20. Waynesrhythm

    Waynesrhythm Member

    Hi Hubcap,

    I tend to think there are as many variations of our illnessess as there are people who have them. I've gone through a number of variations myself in a span of 40 years. My downward cycle seemed to start with a head injury/whiplash. Since then, I've experienced a steadily declining overall health picture.

    This is in line with what I've seen with so many others. Our bodies experience some kind of trauma (accident, mycoplasma, virus, etc.), is unable to fully recover, and then a domino-like effect takes place where our primary regulating systems begin to falter and fail.

    Everybody's deteriorating health patterns are uniquely different, but it seems to resemble an accelerated aging process. And the longer we've been mired in this downward cycle, the more difficult it seems to be able to reverse it. Almost like trying to reverse aging.

    I tend to think that a major component of these health conditions is a disrupted electrical system. Since this involves things like auras, chakras, meridians, etc., it's highly unlikely this aspect will be considered by mainstream medicine for quite some time. I think you're on the right track with doing some of your energy practices like Qi Gong, etc.

    I think with these complex health conditions, we'll need to approach wellness from a number of different angles. I doubt there will be some magic bullet that will show up and completely reverse things. I hope I am wrong.

    Regards, Wayne