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Pivotal ME/CFS Study Desperate for Healthy Controls

Discussion in 'Active Clinical Studies' started by Cort, Jul 31, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    This was posted by someone on the CFIDS Association Facebook site. Dr. Baraniuk is attempting to replicate and expand his potentially groundbreaking Brain Proteome study (Phoenix Rising Study of the Year) that found evidence of vascular damage, oxidative stress and amyloid deposition in the brains of ME/CFS patients. But he can't find healthy controls. The study requires a spinal tap and its been tough to get them in. These are great people; I have an article coming out on the study - I did it. It really needs to get done

    Here's the study:
  2. Cort

    Cort Phoenix Rising Founder

    Yes it is! They're offering $400 - not enough I guess. I had a spinal headache afterwards but I was fine until I flew the next day.

    If it replicates the old studies results I think it could have a profound effect. Researchers have been trying and trying - with little success I think - to get at this thing through gene expression. Here Baraniuk does one study looking a protein expression in the spinal fluid and the results jump off the charts. It's got to get done!
  3. Aftermath

    Aftermath Guest


    I also participated in this VERY worthwhile study.

    That being said, $400 is not a substantial enough sum to entice very many healthy people to deal with such an invasive procedure.

    I can only hope that they find other health people with connections to this illness (family members, friends, etc) that are willing to participate.
  4. Dolphin

    Dolphin Senior Member

    Maybe if somebody with the illness is going to do it and ask somebody they could offer them a bit of the money they'll get.
  5. Cort

    Cort Phoenix Rising Founder

    I think you're right; it's going to take family and friends to step in and keep this thing going. I'll bet they've gotten all the ME/CFS patients they need; when I was there they had people flying in from all over the country to participate - they were amazed - but they'd had hardly any healthy controls.
  6. lisaxxx

    lisaxxx Guest

    Been There Done That

    It was sort of painful but been thru worse
    My biggest concern ?

    The chaos of the study

    People were running around, seemed to have great difficulty
    keeping up with blood samples, with getting draws done when they were due,
    one draw tube was still in bathroom on shelf when I left


    I really frakin hope they are following solid established
    procedures to ensure the validity of the results

    BTW - Has anyone gotten an explanation of thier own test results ? Have you been told if you have the abnormal whatever it is ?

    Several months and no info on these two things
    Is this normal ?

    Thx for any info
  7. I would have a spinal tap in a heartbeat. But when I said I wanted one, my doctor laughed out loud and made fun of, and deliberately humiliated me.

    When I said I am pretty sure I have a mitochondrial defect, he laughed like a maniac and was alternately patronizing and sarcastic.

    When I said I wanted to see an endocrinologist and he laughed some more. I keep him because I am terrified that things could be worse. But I am abused by the very person who is supposed to help me. He throws any literature I bring him in the trash front of me.

    I am desperate to find a CFIDS/ME doctor east of Dallas or in north of Tyler,Texas area. I need one who treats CFIDS/ME and accepts Medicare. Help me. My doctor may kill me

    I came to him already on clonazepam, folic acid, Armour thyroid, cortef, CoQ10 and Brewer's yeast, celebrex, DHEA/pregnenolone, and more. I still take all of the above but
    no more cortef or DHEA. Current doc dc'd the cortef and DHEA. I don't know why. But he is adamnant and cruel when I ask questions. He doesn't hear the saga of how I got where I am, what I did in order to access any medical help at all. ( I dragged my 80 year old parents on 600 mile RT's to a teaching hospital, had a craniotomy, stayed at the Salvation Army in a strange town, moved in with a stranger...lied to a doctor to get in to see him...). And now this doc is so stupid he thinks this is all a psych problem.

    I am bedridden and have been since Feb 3, 1993.

    Tests show denervation of my right side. "And so?", my current doc says. I learned of this when I first landed at the teaching hospital and had an EMG. The teaching hospital was a protracted and cruel inhumane experimental nightmare culminating in a craniotomy of the most insidious and dangerous sort, for a clipping of a basilar tip aneurysm which really did not need to be done( trust me) . But THAT did get me into an ER post-op where I found clonazepam which helps me with CFIDS/WTF more than anything else. I have horrific nerve pain, OI, POTS and cannot metabolize most meds. I cannot take Lyrica.

    When my previous primary doctor dumped all his Medicare clients, I found it almost impossible to find any new doctor who would accept me as a patient. I keep telling myself I am lucky to have any doc. But my current doc dc'd the DHEA/pregnenolone, the cortef two years ago saying 'no one should take it'. I am much much worse.

    He laughs at me as I try to educate him.

    I really need a new doctor. I would do a spinal tap in a heartbeat. I have nothing to lose. This isn't living. A spinal has a much worse rep than it deserves. Get your's now if you can afford it.

    Sorry about this post. I am not well at all. Got no clue where this should be posted. But yeah, I have no reservation about a spinal tap. None.

    If you know of a doc near me, please let me know. Thanks.

    ( I was dx'd with CFIDS post-op my craniotomy in 1995 by Patricia Salvato.)
  8. starryeyes

    starryeyes Senior Member

    Bay Area, California

    That doctor of yours is very mean and unprofessional. I'm so sorry you have to put up with him.

  9. Countrygirl

    Countrygirl Senior Member

    For Bluebird


    I'm so sorry to read how badly your ignorant doc is treating you. He is probably a member of the Flat Earth Society, British trained in quackery, and is no doubt handicapped by a severe narcissistic personality disorder.

    It's disgraceful! :mad: :mad: :mad:

    I send you hugs.
  10. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina

    When we get vindicated let's sue the pants off that a-hole. (Excuse my language.)
  11. iofiel

    iofiel Guest

    When I was diagnosed and ask what I could take to get rid of CFS/ME (I knew practically nothing about it at the time) the Dr. laughed at me as well.

    Is this a common response? Why are Dr's acting like this?
  12. SickOfSickness

    SickOfSickness Senior Member

    I hope they find people too.

    I asked for one and was given one. I didn't know it was going to hurt so much. If I had known, I would not have done it. Especially since I doubt they did GOOD testing on the CSF, just standard testing. But then again, my sensitivity to pain is prob greater than other people's especially healthy people's.
  13. I had a spinal for anesthesia in childbirth. The pain was nothing compared to having a baby without anything at all ( done that, as well) , or compared to the excruciating pain I've lived with every day of my life since 1993. I would consider it well worth the transient pain of a spinal tap, well worth being tested even if the results were only useful to the greater good, towards understanding this disease we call CFIDS/ME/XAND... this insidious life-stealing, soul crushing watever. I just cannot get a doctor to do it. I am among the disenfranchised poverty-stricken. I ride with me and with angels. Everyone else has abandoned me.

    If its done anything beneficial, this illness has made me and most others dig deep to find our strength not unlike soldiers who know that pain, the ability to endure, the realistic and cold possiblity of death is the name of this game. So we get knocked down and we get back up. We get knocked down and we get back up.

    Bring on a spinal tap, I say. I have nothing left to lose. Shoot me. I will try to get back up.
  14. markmc20001

    markmc20001 Guest

    healthy folks

    Does the docotr have a word document with "healthy controls" criteria and monetary award in a simple one page flyer format?

    1) find out locations where spinal taps need to be taken, if location is not important, I think the best way to get it done would be to take the outbreak map and look for plains states (montana, wosconsin?)were there is fewer "clusters" of sick people.

    2) print out 1000 flyers and distribute to food banks, churches, etc in areas of spinal taps?

    3) docs could screen folks and do spinal tap. $400 is a lot of money to many unemployed that are hungry and in need.

    4) maybe advocacy section would be place to recruit volunteers to distribute flyers? "printable", and approved flyers could be posted in advocacy section and interested volunteers can print and distrbute to local churches and food banks.
  15. lucysun



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