Why do we have so few placebo controlled studies?

Discussion in 'Fibromyalgia Main Forum' started by SpiroSpero, Dec 9, 2008.

  1. SpiroSpero

    SpiroSpero New Member

    Hi all,

    how is everyone doing? Yesterday I had a talk with my aunt (she is a doctor). I gave her some papers of Nancy Klimas and other CFS specialists as well as the Montoya study (the new one has not been published has it?).
    Well she read everything and this is good because she is very opposed to CFS in general and thinks activity+behavioural therapy are the only helping treatments.
    So I cracked the ice a little bit but the discussion lead nowhere. Valcyte (we all know that) can have very serious side effects and is no over the counter medication.
    I told her that so many doctors in the US as well as other countries prescribe it because it is one of the few medications that has curing abilities at least for a cohort of patients.

    To bring me down she insisted on asking me why there are so few double blind placebo controlled studies for CFS. And that it exactly what I want to ask you.
    The new Montoya study is db+pc and I will show it to her as soon as it is published.

    Could it be that there simple are so few studies because CFS is so complex, because we lack the medications that could be used for studies? What are the causes? I'd love to get any scientific or realistic comments/input on that.

    Have a nice day :)
    [This Message was Edited on 12/10/2008]
  2. aftermath

    aftermath New Member


    The answer is because the funding for ME/CFS research is so pitiful.

    If you want to see real research, the best thing you can possibly do is to join one of the major CFS advocacy organizations like the CFIDS Association.

    Right now, the research budget for this illness couldn't buy the toilet paper in the AIDS, cancer, MS or autism labs.

    This will not change unless the patient community speaks to congress as a whole.

    The CFIDS Association already caught the CDC misappropriating over $10 million dollars that was earmarked for us to other projects.

    Spending $35/yr to be included is one of the best things you can possibly do.
  3. SpiroSpero

    SpiroSpero New Member

    I already joined the CFIDS Association (60 dollars/year international). I really hope Dr. Reeves takes responsibility and leaves.

    I believe everything you say but why do other illnesses get billions of dollars as funding and CFS not?
  4. Catseye

    Catseye Member

    The main cause could be most anything, but what eventually happens is that the state of the guts becomes imbalanced and damaged. This is where most of the neuropeptides and other components of the immune system are made, and where the body absorbs its nutrients. So it's all centered in the guts and this leads to immune dysfunction, dysbiosis and intestinal hyperpermeability. Then you eventually have problems with organs, the CNS and heavy metal poisoning because of an overtoxified liver. Then you have to undo the damage and that's costly and takes a long time. The basic CFS symptoms are caused by the nutritional deficiencies that result from maldigestion, the overtoxicity of the body caused by the inability of the liver and kidneys to keep up with detoxification and the lack of sufficient amounts of beneficial bacteria in the guts that manufacture the vitamins and enzymes we need and keep the immune system functioning well.

    There are already treatments available, but not from the medical profession because they only use drugs and surgery to fix things. Their approach to CFS is to treat the symptoms instead of the direct cause of symptoms so they can't cure it. And you can't repair a damaged intestine, digestive system and immune system with drugs because drugs need to be detoxified and you can't repair a detoxification system in the body while you are giving it things it needs to detoxify. Drugs mainly work by blocking enzymes and that just causes more problems. The treatments for CFS consist of dietary restrictions and many herbs and supplements. These are not studied because they are not patentable and companies cannot throw away money on them to do studies because they can't recoup the research and development costs. Your aunt, being a medical doctor, has only learned about drugs, not nutrition and supplements, so she won't have a clue how to treat it.

    We all need treatments that are designed specifically for each of us, and that's another problem. What works for one does not work for another, so double blind studies would be useless. You have to do tests that the medical profession does not do regularly, like comprehensive digestive stool analyses and intestinal hyperpermeability tests. They don't do these because they wouldn't know what to do about the results, anyway.

    I suspect that since I can figure out all of this with google in a couple of years, that the "people upstairs" are aware of it and they don't want it to be well known because I think that a bad gut is the cause of 90% of chronic diseases and if we were to all be treated for it, then that would mean a lot less doctor visits and drug sales. You have to seek out a qualified specialist who can interpret stool tests and is also schooled in nutrition. See beatcfsandfms.org or the posts about Dr. Farr. I'm being cured, it's just taking a while and it's costly. And I started out about as bad as you can get - totally bedridden and incapacitated and dependent on others for food and basic human needs. Now I can exercise, read as much as I want and other things I'm reluctant to mention.

    The only drawback is that once you fix yourself, you can't go back to eating the same foods you did before. This is a total lifestyle adjustment. I haven't heard from enough people in remission who had relapses, but I suspect that they probably became lax in their diets and that's what caused a bad gut state once again. Perhaps once the guts are healed, they are in a more delicate state than before and require extra special care to make sure they don't suffer the same fate as before. It is a very complex system, with beneficial bacteria helping to make vitamins and enzymes we need, as well as manage our immune systems. A big sugar binge could overfeed yeast or other bad bacteria which could then overcome the good bacteria and start the whole thing going again.

    Things like Valcyte are just going after "bugs", which may or may not help. Once the guts/immune system is messed up, you will have all sorts of bugs. You won't be able to get rid of them all unless you fix the immune system. Going after one bug at a time is the medical profession's way of doing things. They are the ones who say there is no cure for CFS, but that doesn't mean other people can't do it. They just can't legally call it a "cure" because the treatments have not been approved by the FDA since they're all diet and supplement based. Don't wait around for the medical profession to get a handle on this, I don't think it will happen in our lifetime - there is too much at stake. When enough people know about it and refuse to accept it, it will change.

    It's probably a waste of time arguing with your aunt about it. A doctor's favorite saying is "there is no evidence or studies . . . blah blah blah" and their minds remain closed. She can't help you so don't bother making waves. Just do what you have to to get over it, then you can answer her questions.