Back from IACFS Conf. Added De Meileir info

Discussion in 'Fibromyalgia Main Forum' started by spacee, Jan 12, 2007.

  1. spacee

    spacee Member

    It was wonderful. The hotel was small enough so that we were the only conference being held. We easily rubbed shoulders with all the "who's who" speakers. Rich Carson, too, was there to recieved a Sand Castle award for Marc Iverson. Mark started the CFIDS Journal and was described as "the father" of those getting the info to CFS patients.

    Pamj and DV and I met a couple of times!! Really, really great people.

    I wish there were cures announced. There were none.

    I wish at the $50 a person banquet that Dr. Cheney had had time to talk about his treatment for the heart. He was able to give his explanation of the cause but nothing about the treatment. That was a major gliche. I am guessing that the hotel didn't say that we had to be out of the room by 9:30pm so they could set up for the AM meeting.

    I wish that the person representing the NIH had not said that because of the current president and the war, we would not see any funding for CFS. It seems to me that the diseases that get funding are ones that have big drug company lobbyist and the war doesn't seem to have anything to do with it. We are an orphan illness. And the NIH has turned a cold shoulder to us from the start. To blame it on an unpopular war seemed a low blow. MHO

    I extremely glad to hear they are having fewer children diagnosed with CFS.

    I was surprised at the number of people with walking aides...scooters, walkers and canes. And well over half of us were eligible for AARP...maybe more.

    I was very surprised to hear that after 20 years they have, with collaboration with Canada, come up with a diagnostic questionnaire to diagnose children. What took so long? No money, I think.

    Who did I hear speak? Cheney, Bell, Belgium doc (sorry don't have my agenda here). All were great. Also heard a panel headed by Dr. Kilmas (she being her usual wonderful person). The panel comprised of the NIH person, Stanford researcher,
    a doc from Japan (do they EVER seem to have it together over there) and a woman who was an expert on brain imagining of CFS patients.

    Ths last woman seemed to think that the white places on the MIRs of CFS patients meant NOTHING. She thought we were pretty well off mentally and that we did process info more slowly. That we use our brains to function the same way that "older people" do. I did NOT get the feeling that she is seeing the sickest of us as patients. If she did, that would probably be very different. MHO again.

    The exhibition area was a great place to meet. I bought some ribose powder there, talked to the Ampligen people. Prohealth's Transfer Factors had a table.

    Sadly, the presenters that I heard did not give handouts. So, I have only my notes to rely on. I have not gone through them yet but will.

    When all is said and done. As much as I thoroughly enjoyed the conference, the info for CFS comes mainly from the internet sources that people here use and post about. This is a great group of people here and thanks to ProHealth for providing this for us.

    Spacee







    [This Message was Edited on 01/12/2007]
    [This Message was Edited on 01/20/2007]
  2. musikmaker

    musikmaker New Member

    Spacee,
    Thanks for the run down on events. I think it would be great to go just to meet others. For me that would be reaffirming.

    Too bad you didn't hear about a great cure in the works or anything much different than what we discuss on the board. But,,,the day will come for us. Thanks again.
  3. spacee

    spacee Member

    Most of the people I talked to were from other countries. Two women from Norway, a woman MD from Canada who was going to be a presentor on Cognitive Behaviour Therapy and a woman from London. Her 23 yo daughter has had ME for 11 years.

    While the presenters kept talking about subsets of CFS patients, I found the patiens felt like the approach they were taking was "the way for every one". (smile). I found that somewhat odd since they were using scooters and I was walking.
    To each his own.

    Spacee
  4. musikmaker

    musikmaker New Member

    One of the problems in the medical community and society as a whole is that they want to put us all in the same box. All of us that have the DD know that "one size does NOT fit all" ha.

    Maybe I'll be up to going next time. If I remember you said it was taking place close to your home this year. Did they say where it was going to be next time? Sometimes they book way ahead. Musik
  5. Pianowoman

    Pianowoman New Member

    Thanks so much for your perspective. My Doctor ( from Canada) is there all week and I'm looking forward to what she brings back.

    Kathy
  6. spacee

    spacee Member

    Part of the cost of registration was that they required you to become a member for 1 year. If it is not announced at the ned of this meeting (pamj is staying for all of it). Then I am sure that it will be in some of their newletters soon.

    Last year's meeting was in Seattle.

    Hope the next one is close to you!

    At one point while waiting for the next session I stumbled across a Patient Refreshment Center. Oh boy, I thought...food!
    But it was a room for people who had driven in for the day to rest. There were beds for people and about 5 people were really zonked out. That was a very helpful thing.

    Spacee
    [This Message was Edited on 01/12/2007]
  7. musikmaker

    musikmaker New Member

    I live about 40 miles south of Seattle. It probably won't come around to this area again for quite sometime. Dang!!
  8. spacee

    spacee Member

    That is the pits.

    One thing Dr. Cheney did say about his new treatment was that patients who responded to O2 therapy showed improvement with his treatment. Those who did not respond to O2 treatment did not respond at all to his treatment.

    There again...subgroups.

    BTW, I am thinking that O2 therapy is just using inhaled oxygen like a COPD patient would use.

    Spacee
    [This Message was Edited on 01/12/2007]
  9. IntuneJune

    IntuneJune New Member

    Spacee

    Thank you for updating us. As WONDERFUL as our board is, there must have been some excitement in your seeing the FACE of our cause.

    Computers and keyboards do lack a personal touch.

    Thank you again.
    June
  10. Forebearance

    Forebearance Member

    Thanks for the report, Spacee!

    Love, Forebearance
  11. spacee

    spacee Member

    Yes, it was wonderful to see the faces. Very wonderful. One thing that struck my sis and me is the lack of younger docs SPEAKING at the conference. Most of these seemed like old friends. Ones that I had either seen in their practice or heard speak before at the conference in Sarasota. Who is going to carry the torch when they retire?

    On another note. One way Nancy Kimas has studied CFS is that in her study of HIV, she would always throw in a CFS control group. And a normal control group. She had the funding to study HIV. No funding for CFS but she studied it anyway.

    Another thing is that with the genetic studies that are being done, answers to CFS may well be answered not by just the study of CFS but of how the individual body is effected by illness.

    Dr. D. from Belgium did say that soon medicine would need to be practiced on an individual basis. However, he said that this will be difficult to achieve with insurance companies paying for office visits of 8 minutes. And the ease of lumping patients into groups...i.e. all lupus patients get one of these meds.

    Spacee

  12. wish_to_be_healthy

    wish_to_be_healthy New Member

    I wish they had a cure for us too...

    But as someone else posted, we are all showing up with variables, different things that triggered the disease for each of us...

    When they can get that teased out, and figure out what subgroups we have going on here, I think it will be easier for them for find cures.

    We do need the funding! If we had the backing that the Aids movemet has, or even the Autism movement...I'd think we'd be closer to knowing what is going on, and how to cure it.

    Thanks again for the update : )

    Suz
  13. spacee

    spacee Member

    There is a group of patients who think that Autism and CFS are the same disease. I was able to talk to a psychologist in the exhibit room about it. He posts on the Co-cure site.

    To me that is a theory that hasn't been proven BUT they have a good big of money for research and that may prove to help us!!

    Our "cures" may well come through the study of other diseases.

    Spacee
  14. u34rb

    u34rb New Member

    spacee,

    O2 therapy could be anything from O2 nasal delivery at ambient pressure to full blown hyperbaric O2, which I benefit from. Also, it can embrace H2O2 therapy, (hydrogen peroxide, oral or IV). And if ozone (O3) is considered an enhanced O2, then that offers a whole raft of different possibilities too.
  15. spacee

    spacee Member

    In the part that Dr. Cheney had time to speak on, he did not mention at what types of O2 methods that he used. I wish that he had. Just to say O2 is too general.

    I will say that he called his knowledge about the heart in CFS a "epiphany". Very strong language for a research doc.

    Glad you are having improvement with your treatments.

    Spacee

  16. wish_to_be_healthy

    wish_to_be_healthy New Member

    It may well be that thru Autism research if there is cross over between CFS and Autism, then there would be more funding...groups like Autism Speaks are doing a great job at fundrasing for research...

    I'm not sure it that just made sense...I've got a fever.

    I know that I have CFS, my youngest is on the spectrum, my older sister is on the spectrum, my other son is ADHD,(and I think he may come out on the spectrum when all is said and done

    All of us have sensory intergration issues...Other's in my family seem to have issues with organic/brain issues.

    I need to research this more.

    Suz (in a slight daze from fever...If that makes sense?)
  17. acer2000

    acer2000 New Member

    If CFS is the same as autism, Andy Cutler is a smart man. :) They do seem to have almost every feature in common. Perhaps if we had all be born in the past 10 years when they were shooting up kids with 20 vaccines with thimerasol before their first birthday, we'd be autistic? Kind of scary to think... Perhaps I should look more seriously into chelation.
  18. spacee

    spacee Member

    Between genetics and vaccines it is indeed scary. My father in law is probably ADD, Hubby also and sis in law with Lupus and FM. That is the fraternal side.

    My twin and I CFS (twin recovered throughs supplements) and first cousin disabled in early 40's with FM. That is the maternal side.

    Two sons with ADD. It can really get you down if you dwell on it.

    Dr. D. from Belgium doesn't think that everyone is a good candidate for mercury chelation. That it can do more harm than good. He thinks that nickel is equally a culprit and you have to take different things to get rid of each. If you do chelate, he is in favor of natural products. Well, that can go on and on with the pros and cons.

    BTW I talked to a man who has a son who is severely autistic (not at this conference). His opinion is that autism is NOT on the rise but that they have put all forms of retardation into the "autistic arena" and that is what is giving the bigger numbers. Sounds like that works for the good since they get better funding with more numbers.

    Spacee
  19. acer2000

    acer2000 New Member

    Interesting, have any of your family members been tested for the genes associated with increased susceptibility to mercury toxicity? I think they are CPOX4, APOE4, and also a mutation on the glutathione S transferase... Anyone in your fam ever had Alzheimer's?
  20. spacee

    spacee Member

    No, I have never even heard of the tests. Thinking along those lines kind of rings a bell to me with what Dr. D. said. I know my twin tested low in glutatione at the Cheney Clinic years ago.

    No,no alzheimers at all, thankfully. But my brother's wife's family gets it very early. Maybe they should be checked.

    Where do you get gene tests done? I know when my daughter in law worked at a children's hospital in the cystic fibrosis wing, to relieve her fears of having a child with CF, she got tested. She WAS positive! But my son is not so they should not have a child with CF.

    I live in a rural area but between Tampa and Orlando. I wrote in my "important" notebook about the genes.

    Thanks for posting!

    Spacee