New research - Proteins in spinal fluid may be markers for CFIDS

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Dec 2, 2005.

  1. mbofov

    mbofov Active Member

    I'm re-posting this with a different title -- I think this is very important and don't know why more haven't read it --

    Here is an article dated 12/1/05 from WebMD website which shows biological evidence for CFIDS.

    Proteins in Spinal Fluid May Be Markers of Syndrome, Early Tests Show

    Dec. 1, 2005 -- Scientists may have found biological evidence of chronic fatigue syndrome.
    Chronic fatigue syndrome involves severe, unexplained tiredness that lasts for at least six months and doesn't improve with rest.

    Chronic fatigue syndrome often greatly interferes with patients' lives. But it hasn't been well understood from a scientific point of view, and its cause is unknown.
    The new evidence lies in patients' spinal fluid. Tests show 16 proteins in the spinal fluid of people with chronic fatigue syndrome but not in healthy people, according to a study in BMC Neurology.

    Protein Proof

    Of those 16 proteins, five especially stood out. "If you had one of those that was present, then you had chronic fatigue syndrome," researcher James Baraniuk, MD, tells WebMD.

    Baraniuk is an associate professor of medicine at Georgetown University Medical Center.

    "This ushers in a whole new era for identifying [and] recognizing the legitimacy of these disorders,' he says.
    Baraniuk and colleagues compared spinal fluid from 50 people with chronic fatigue syndrome and related conditions to spinal fluid from 22 healthy people.
    The researchers originally recruited people with fibromyalgia or Persian Gulf War illness and later realized that many of the patients had chronic fatigue syndrome.

    "That's very important because it suggests that these are allied disorders," Baraniuk says, adding that the term "Persian Gulf War illness" is no longer used by the U.S. Army.

    Test Not Ready Yet

    "I don't believe there's much value in getting a spinal tap and finding somebody to measure these different proteins," Baraniuk says.

    "First off, it's a research tool. ... You'd have to measure maybe 20 proteins and look at what the pattern is like. We're not there yet in terms of technology to be able to do that."

    He notes that the proteins were identified in two different sets of patients. "The odds of finding these exact same proteins twice [are] astronomical," Baraniuk says.

    Breaking New Ground

    "People generally and many physicians generally believe chronic fatigue, fibromyalgia are not legitimate disorders," Baraniuk says.

    "They sometimes treat these people extremely rudely and don't pay any attention to their symptoms," he continues. "As a result, these patients will go from doctor to doctor. The average is for them to see seven subspecialists a year and have seven different names for the problem."

    "They will be told they have functional disorders, which means there's no test you can do to prove it and there's very few drugs that you can take to improve it," Baraniuk says.

    "But a study like this shows that these people have something in their cerebral spinal fluid that separates them from the normal population," he says.

    [This Message was Edited on 12/02/2005]
  2. mbofov

    mbofov Active Member

    You're welcome. I know we keep getting tantalizing tiny bits of the puzzle, and no one has been able to put them all together yet, but maybe someday . . ..

    Mary
  3. mbofov

    mbofov Active Member

    I feel the same way, I changed the title of the post hoping more would read this. This is new information, as far as I can tell.

    Mary
  4. sydneysider

    sydneysider Member

    I'm surprised not to have heard about this.

    It will be an amazing day when these symdromes are finally legitamised with a test, and we are all treated with the respect we deserve.

    Maybe this is a step closer.

    Thanks again.
    Robyn.
  5. mbofov

    mbofov Active Member

    You're welcome. I too hope that this research, if nothing else, may lead to a test that will make this DD REAL for our doctors and families and friends --

    Mary
  6. Bruin63

    Bruin63 Member

    I will have to go and check out that article, as I am very interested in this subject.

    Back in 1984 I had to have a Spinal Tap, it didn't go well at all.
    The result was, I had to much Protien in the Spinal Fluid, and also Blood.

    I was bedridden for 3 weeks afterwards, and when I did get back on my feet, I had weird Rashe's, small red spots that looked like flea bites. But weren't.
    I had horrible headaches, from an accident, and I do believe this was the Main start of my FMS.

    So anytime I can find an article that talks about the Spinal Fluid, I am really interested. Also, conditions, with Inflammation inolvement. I had a lot of thoes too, and have most of my life.

    They will have to Knock me out to ever do another ST on me, that's for sure, they have always been hard, for Dr.s to perform on on me.
    It takes a lot of shot's to even NUMB me, but even then I still can feel it,

    Again thanks,
    sharon
  7. tansy

    tansy New Member

    Fewer replies than you expected may be because it's been posted on many other internet sites too.

    There have been studies indicating abnormalities specific to ME/CFS; but it's going to take more done on a large scale to change the opinions of many doctors that these DDs = functional somatic disorders.

    If you read the post on difficult doctors, you will also see an extract from a book there. 30 years ago all this was happening; what we see now is a worldwide emphasis on rehabilitiation as against looking for what is making patients ill and disabled.

    love, Tansy

    [This Message was Edited on 12/03/2005]
  8. karinaxx

    karinaxx New Member

    under what name or exact web details please ?
    i checked on this website and nothing.
    more info.......
    karina
  9. karinaxx

    karinaxx New Member

    and i checked other article on cfids in children and diagnosis. no way i can take this website serious. a lot of nonsense written on cfids in children and parents!
    But who knows , maybe there is something to this research, but personally would be carefull with believing this, i am douptfull.
    karinaxx
  10. tansy

    tansy New Member

    can be read at
    www.co-cure.org/Baraniuk.pdf
  11. mbofov

    mbofov Active Member

    Thanks for posting the link to the complete article. I went to the BMC Neurology website and found a synopsis of it, but yours was more complete.

    I know it will take more than this one study to convince doctors et al. that CFIDS is real. But it's a step. And I found it fascinating that people with "Persian Gulf illness", CFIDS and FM all share similar proteins in their spinal fluid that are not found in other people.

    I saw your post on "difficult doctors" and share many of the same feelings. I won't take any meds or let any doctor do anything to me unless I research it myself. I believe strongly that we need to be our own doctors. I think there are a few good ones who have an open mind and care more about helping a patient rather than appearing to be all-knowing, but even they are often quite ignorant about these DD and need to be educated.

    Anyways, just for myself I found the article fascinating, and hope that tiny step by tiny step we may finally get some answers.

    Mary
  12. karinaxx

    karinaxx New Member

    it seems it is NEWS and it is everywhere.
    so, sorry , mbovof. it was just the website you got this news from, which i found had misleading information on some stuff.
    I will post the article again to bumb this information

    karinaxx
  13. karinaxx

    karinaxx New Member

  14. mbofov

    mbofov Active Member

    I really hope this research leads to some sort of test for CFIDS. Even if it doesn't help with a cure right now, a standard CFIDS test would keep us from having to waste so much energy on trying to convince doctors, family memebers et al. that what we have is real. And also might finally free up some serious research money, if they believe it's real.

    I'm sorry you're exhausted in Paris. I'm exhausted in California (although I have a flu bug right now too).

    Best wishes for the new year --

    Mary
  15. mbofov

    mbofov Active Member

    I live in a small high desert town called Yucca Valley. It's very beautiful and wild-looking up here, sort of like a moonscape, but we do have joshua trees and yucca trees (cactus-type trees). But overall it's very bare, not everyone's cup of tea. I think a major storm is coming in today - it's very windy and cold.

    It does seem that we keep hearing about new research showing evidence of CFIDS and FM -- maybe there will be a break soon. I don't really believe in God, but I'll say a prayer anyways.

    I hope you feel better soon!

    Mary
  16. russiankids3

    russiankids3 New Member

    I was very interested in the info you shared with us.

    I have an autoimmune kidney disease called IgA nephropathy. Damage is caused in the kidney by the abnormal buildup of this protein called IgA. There is no cure and I will eventually need dialysis or transplant. The only way to get a definite diagnosis for this rare disorder is to have a kidney biopsy. It would be great to find a specific test to confirm CFIDS even if the cure is a ways down the road. At least like others have said-- the medical community would believe all of us at last!!!

    I have always felt that FM/CFS is an autoimmune disorder and at least my nephrologist agrees. :)

    Thanks for sharing-very interesting.
    Sue
  17. mbofov

    mbofov Active Member

    I'm glad you found the post of interest. You certainly have your plate full. I read your profile --I don't know how you do all you do, but am sure your 3 adopted children are a joy to you.

    I wish you the best in the new year --

    Mary