Live ME/CFS Q & A Chat This Friday With Suzanne Vernon

Discussion in 'Fibromyalgia Main Forum' started by Holly-Admin, Dec 2, 2008.

  1. Holly-Admin

    Holly-Admin Administrator

    ProHealth invites you to join a Live Chat with Suzanne Vernon, PhD – Scientific Director of the CFIDS Association of America.

    The Time and Place: This Friday, December 5, beginning at 3 PM Pacific Time in the Community Chat Rooms.

    Dr. Vernon will discuss breaking news about exciting research the CFIDS Association has chosen to fund in 2009.

    Who is Dr. Suzanne Vernon? Last November, Dr. Vernon - a noted virologist - left an important post with the CDC’s prolific ME/CFS gene and pathogen research team to join forces with the CFIDS Association – a nonprofit patient advocacy organization dedicated to finding a cure for CFS by funding the most promising science.

    For the past year, she has been working to organize an ambitious global collaboration of ME/CFS research capabilities to deliver "groundbreaking results at unprecedented speed."

    If you would like to pre-submit questions, please enter them below.

  2. victoria

    victoria New Member

    What does she think about the overlap with bacterial infections, such as mycoplasma, lyme, cpn, etc? ie, regardless of what might show positive on tests which don't seem very reliable overall for anything, is it likely most of us have more than one type of infection and more than one virus or bacteria?

    hmmm sorry if that's not too coherent.... will come back later and try to rephrase.

  3. nd2no

    nd2no New Member

    There is a study being done i think in the UK where people are being put into drug induced coma's to alleviate chronic pain. It has been successful on a temporary basis. I have read Dr. Paul Cheneys work. Your work, Dr. Suzanne Vernon, Dr. Petersons. Gone to a symposium of his... any way. What if the mitochondria is in a state of life or death fright or flight due to excessive pain and taxation and could be allowed, like a computer to defragment and reboot by being turned off (coma) for awhile. Or at least resting, a chance to heal. I took Dr Cheneys advice on Klonopin and our threshhold for stimulis. I no longer have the Myoclonic jerks that tortured me when I tried to sleep, Theres a drug called Ketamine, I think, and perhaps Klonopin used together to produce a very deep sleep or coma... I once tried to talk to Dr peterson about this and he said that if it were anything along the lines of what I was thinking then, I would feel like I was on Cocaine... Well, had no answer at the time as I had never done cocaine, but post that discussion. I have a sister who is a drug addict. She explained what a coke bender felt like and it is equivalent to how cfs feels. The more I learn about this desease the more I think I know. 15 years ago in MY research I figured it was mitochondrial. We can't heal, and keep in mind that it tends to be type A personalities...So I think its like a switch in our brain gets flipped (so to speak) and we cant turn it off because we are in the flight or fright mode, due to the switch being on. Our brains deviated way of protecting ourselfs from dying of exhaustion. Stay alert to dangers, but shut down physically. I pushed too hard for too long thru too many infections,my immune system got weak. To this day if I start a day and don't stop, I can keep going as long as I don't stop. And don't eat. The very second I stop... I crash. Survival as single parent, I've had to push hard to keep going for as long as I can. Now, when I pace myself I don' have the major crashes. I just want to say I whole heartedly believe that You as researchers should have live in patients to observe. On a minute to minute basis, with them hooked up to every kind of monitor possible, especially brain, muscle, and heart. constant blood tests .This is a complicated disease that can't be monitored with snapshots. You need to take long videos and be able to freeze frame. I'm desperate for a cure. If I die while still having this disease. I will feel robbed of ever having lived.
  4. Empower

    Empower New Member

    Is there any research out there that has showed Chronic Fatigue Syndrome starting after a surgery?

  5. findmind

    findmind New Member

    uhhhh, sorry, couldn't resist.

    How can we access Dr. Vernon's Q and A of today?

    Thanks, and have good holidays instead, ok? Thanks for your hard work on our behalf!

  6. Holly-Admin

    Holly-Admin Administrator

    We'll be posting the chat transcripts soon, but I don't have an exact date. If you're subscribed to our newsletters, the transcripts will be included in a future issue. If you want to subscribe, just use the "Subscribe to our free e-newsletters" section at the very top of this page.

    Or, keep an eye out on our home page.

  7. findmind

    findmind New Member

    thanks, dear one...

    of course I'm subscribed!!

    look forward to it...