Just Returned from Georgetown Study

Discussion in 'Fibromyalgia Main Forum' started by aftermath, Aug 24, 2008.

  1. aftermath

    aftermath New Member

    I post to let everyone know that I participated in the study on the proteomics in CFS at Georgetown University Hospital last week.

    I cannot underscore just how pleasant and considerate everyone there was. Although I am on the more functional end of those afflicted, I still appreciated the fact that the staff at the GCRU really understand what it is like to live with this illness.

    I urge everyone who can travel to DC to consider participating. I did not get the spinal headaches from the lumbar puncture which I actually experienced during a previous LP by another physician.

    Moreover, if you have any family members who are willing to be healthy controls in the study, they are sorely needed.

    In the wake of the lukewarm results of the Stanford study, I truly believe that Dr. Baraniuk's theory holds the most water with regard to ideas currently in play.

    TTT for the kind and caring folks at G-Town!
  2. victoria

    victoria New Member

    altho I'm afraid to hold my breath.

    I have a friend who participated in it as well, also thought they were extremely nice and caring; altho going up there and going thru all the testing really took its toll on her, she crashed after returning home... you sound like you've held up really well? That's great.

    She also told me they did give her some of her results, altho I forget which ones, and didn't think it was all the results unfortunately, seems unfair... I don't think that the results they did give her, gave her any real 'pointers' tho.

    Kudos for participating!
    all the best,

  3. Lichu3

    Lichu3 New Member

    No one knows how this will all play out -- I tend to believe that Kerr, Montoya/Lerner, Baraniuk's ideas may be different views of the same thing. Kerr looks at upregulated gene expression with links to immunity/ infection, Baraniuk looks at unusual proteins in the CSF (does he know what the proteins are?), and Montoya/Lerner looks at an infection(s) which can affect the immune system and brain.
  4. gapsych

    gapsych New Member

    Good for you. I wanted to participate in the study but was unable to. I did talk to Dr. R. several times and found him a most compassionate person. Just talking to him, his understanding that CFS is real was therapuetic.

    How did it go as far as being off meds. for three days? Are you very far from Georgetown?

    Thank you for doing such a selfless act.

    Take care.
  5. aftermath

    aftermath New Member

    Thanks for all of the kind comments.

    First, I am on the more functional end of ME/CFS sufferers. Before I got sick (very suddenly during a one month period), I used to sleep 4-6 hours/night. If I slept for 8, I would be calling friends telling them “I can’t believe that I slept 8 hours last night.” I would also be wired for the rest of the day (and the next day too). I was also in the high 90th percentiles for my age with regard to push-ups, sit ups, etc.

    I got sick suddenly during a high stress period during my soph yr of college. Ever since then, I have slept 10-12 hrs/night (and still wake exhausted), test at 40th % on all strength tests, etc, even after taking two years off after college in an attempt to recuperate. I had a positive tilt table test. I also had a positive SPECT scan of my brain (moderate cortical hypoperfusion)

    Still, many here would not consider me sick as I manage to work a full-time job (leaving work every day to head straight for bed). I also have some capability for cardiovascular exercise—I actually managed to work up to running a few miles. I actually do it at 2 or 3 in the morning after a long nap after work (my sleep schedule is totally off ever since getting sick). It helps the cognitive issues tremendously.

    As both Dr. Natelson and Dr. Baraniuk have both told me, everyone experiences this illness differently.

    It wasn't a big deal being off meds, as I’m not regularly on anything as nothing has helped.

    Some of the things I have tried are:
    Provigil: made feel normal w/ regard to being tired, but caused severe cognitive issues (it would take me ten seconds to remember my phone number)

    Ritalin: brought me back to almost 100% for the 1st week, including physical strength (I was bouncing out of bed to actually work out in the morning). After about two weeks, it stopped working. Even after abstaining from it for almost a year and then trying it again, I never got the same effect. Dr. Baraniuk theorized that it tripped a pathway in the brain that has no capability to reset itself.

    With regard to the three theories, I agree that they all may be correct in some subsets. I just know that in my case, Dr. Baraniuk’s theory seems most likely. I have been tested for virtually every pathogen under the sun with negative results. This includes HHV-6 both via blood (Focus) and spinal fluid (Viracor). I am even EBV negative, which is a true rarity among ME/CFS patients.

    Victoria: I had big issues with them not sharing all of the results with patients as well. Still, after speaking at length with Cort Johnson, I was okay with this (I forget the reasoning, but he convinced me).

    Gapsych, I am from NY. It took me a little less than 4 hours to drive down.

    Lastly, Dr. Ravindran is aces. He just finished medical school in India and is looking to land a US residency in neurology. If Baraniuk’s work turns out to be correct, his protégé has the potential to become the top CFS doc in America for the next 50 years. Super nice guy and not arrogant at all.
  6. jasminetee

    jasminetee Member

    Thanks so much for participating in this study. I look forward to hearing what comes of it.

    I hadn't heard of Dr. Baraniuk before so I looked him up just now and found this:

    "James Baraniuk, M.D., Georgetown University, Washington D.C., has found that despite its diverse clinical syndromes, the CFS proteome (the entire group of proteins in an organism or system) is the same, suggesting a strong relationship with malfunctioning of the central nervous system. Dr. Baraniuk developed the first predictive model of CFS based solely on objective data and he now proposes to recruit a new group of CFS and Healthy Control subjects to determine if the proteins in their cerebrospinal fluid will be a predictive marker of the spectrum of CFS symptoms. There is a high probability that these methods and markers will be of diagnostic value and will be useful for assessing changes over time in disease severity and treatment effects."


    That sounds promising. It's nice to know that a study like this is being done for us. :)

    It's interesting to hear about how you reacted to Ritalin as well. I've never tried it but I've thought about it.

    [This Message was Edited on 08/25/2008]
  7. Lichu3

    Lichu3 New Member

    do you mean that you didn't have ANY antibodies at all, not even EBV EBNA?

    Erikmoldwarrior and several folks from the Incline Village (from Osler's Web) had no EBNA even if I remember right.

    Anyhow, CFS-Phoenix's report on HHV-6 International Conference said the following in regards to HHV-6 diagnosis.

    "A recent study showed that HHV-6 can persist in the spinal fluid long after it’s disappeared from the blood. Another study found no evidence of HHV-6 infection in the spinal fluid even though later autopsies suggested it had been active in the brain."
  8. gapsych

    gapsych New Member

    Hello again!

    I have always felt that my FM/CFS is mostly neurological and think Dr. B.'s theories are very exciting, especially if they can come up with a diagnostic test.

    Was he able to tell you if you had the extra proteins?

    I do remember that you would not be able to get back the results for the DNA analysis, because of legal matters regarding confidentiality. I think that would have been interesting to find out.

    I really wanted to participate as I believe I am in the subset of people whose symptoms are neurological. My rheumy and PCP also think this.

    Again thanks.
  9. aftermath

    aftermath New Member

    <blockquote>Was he able to tell you if you had the extra proteins?</blockquote>

    This is info that they are also not releasing. At first I was upset by this and originally refused to do the study. After talking to Cort Johnson, I changed my mind.

    Lichu, with regard to HHV-6, that theory still doesn't do much for explaining fibro, GWS and a bunch of similar illnesses. The results of Dr. Montoya's 2nd study don't appear to be very promising. Still, I'm not saying that it isn't possible in some subsets.

    The trigger behind my illness was massive PHYSICAL stress. Not emotional stress like where you are in debt in credit cards, in a bad relationship, etc.

    The stress came in the form of 22 credits (essentially 2x the courseload of a full-time student), a varsity sport, tons of extracurriculars, etc. It was a very happy time. Still, I was beating the hell out of myself, sleeping 2 hours a night (and feeling totally rested if I got four). I also got a wicked sinus infection (symptoms were bacterial, not viral) that persisted for most of that semester.

    After the last final, I slept for almost 3 days. After that, I never managed to recover.

    Believe me, all of my eggs are not in Dr. B's basket. Still, this is a follow-up study to a smaller one done a few years ago. If the results are the same, it looks like we may finally have our lab test for CFS.

    In any case, they are badly in need of healthy controls. If anyone has a family member or loved one willing to undergo the lumbar puncture, it could really help the work along (it also pays $400).
  10. hensue

    hensue New Member

    Good thing you could go! We need to know everything we can.
    What is this study?
  11. aftermath

    aftermath New Member


    Dr. Baraniuk's theory is that a stressor of some sort causes misfolding of proteins in the brain, or that the body's system to get rid of misfolded proteins is not working properly.

    He is doing some great work, but is barely able to get funding.

    I can't make a post on this forum without stressing how alarming it is that next to no money is being spent by the federal government on ME/CFS research. The budget to research our illness literally could not buy the toilet paper in the AIDS or Cancer labs, or even those for Autism or MS.

    The following was recently posted on Cort Johnson's Phoenix-CFS site:

    <blockquote>Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

    Strong words ,yes, but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same - a loss of power – and an enfeeblement in an environment which is hostile to our interests.

    We desperately need to build these organizations into powerful partners that can make a difference at the highest levels. Sick patients working by themselves can’t do that but they can provide the resources professional organizations need to make a difference. Let’s start with these projects – let’s make a run for it.

    Membership is like $30/yr. I know many of us are in tight financial spots. Still, the patient population (myself inclued) spends thousands of dollars on vitamins and other unproven therapies yet so few are members of the CFS Association of America of IACFS/ME.

    I always ask on threads (and will do so here again since I started this one) the following question.

    Who else besides me is a member of one of the two major organizations fighting for funding by Congress of research like Dr. Baraniuk's?
    [This Message was Edited on 08/27/2008]
  12. marti_zavala

    marti_zavala Member

    It is much appreciated.

    I went in May. Fell in love with both Dr. R and Dr. B.

    Great, great men with so much compassion and integrity and intelligence.

    I have added a link to my report after I returned.

    The testing that they did was helpful to my local doctor and answered some questions for her and me.


  13. SpecialK82

    SpecialK82 New Member

    Out of the FM and CFS organizations, which are the ones that will give us the best bang for our buck? Which ones are you referring to? Is that breaking the rules of the board to say?

    I would be more than happy to provide donations to support lobbying for research. We all have paid taxes for years, its about time that we saw some effort on our behalf!

  14. findmind

    findmind New Member

    Well, I have a thought on this subject: for 12 years I sent every penny I had to the so-called "national" org, and then they went hand-in-hand with the CDC and betrayed me by helping to LOWER the standards of diagnosis.

    In return, they got millions of dollars, which I am sure kept them afloat as many of us abandoned them.

    So tell me, which org should I send my money to?

  15. Rrrr

    Rrrr Member

    i'll be in Wash DC next week. How do I contact the study folks to sign up to be a part of this study?

  16. richvank

    richvank New Member

    Hi, aftermath.

    I'm glad to hear that you are participating in Dr. Baraniuk's study. I have met him at CFS conferences over the past few years, and have enjoyed talking with him.

    I want to encourage you to consider the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS. It is a global hypothesis, including genetics, causes of onset, pathogenesis, pathophysiology, symptomatology, treatment, and hopefully, cure.

    The other theories that have been proposed can be subsumed within it. As I've suggested to Dr. Baraniuk, I believe that the misfolding of proteins that he has observed is a result of glutathione depletion in cells that produce secretory proteins that contain cysteine in their structure. This is known to cause protein misfolding, and there is considerable discussion of it in the peer-reviewed literature.

    I believe that the viruses that Drs. Montoya and Lerner are treating in CFS patients are largely reactivations of latent viruses that most people have in their bodies, and that these reactivations occur because of glutathione depletion and a decrease in the methylation of the viral DNA, which normally silences it, because of the block in the methylation cycle. All the herpes family viruses produce glycoprotein B as part of their proliferation. Low glutathione allows the disulfide bonds in this protein to form, thus allowing the viruses to proliferate.

    I believe that the reason Dr. Kerr found that 85 of the 88 differently expressed genes in CFS were overexpressed is again that a deficit in methylation capacity resulting from a partial block in the methylation cycle removes the normal silencing of these genes.

    I believe that the diastolic dysfunction studied by Dr. Cheney in CFS results from glutathione depletion in the mitochondria of the heart muscle cells, lowering their rate of production of ATP. There is good evidence that glutathione depletion will allow peroxynitrite to block important enzymes in the mitochondria, as Prof. Martin Pall has explained.

    I believe that the elevation of peroxynitrite in CFS, as emphasized by Prof. Pall, results from glutathione depletion and a partial methylation cycle block. The nitric oxide synthase enzymes are normally inhibited by assymetric dimethylarginine. When the methylation capacity drops, less of this is produced, allowing nitric oxide to rise. The depletion of glutathione, which is linked to the methylation cycle block, allows a rise in superoxide, and the reaction of nitric oxide with superoxide produces peroxynitrite.

    I believe that the elevation of RNase-L and its cleavage to form the low molecular weight form, as emphasized by Dr. de Meirleir, also result from glutathione depletion and the methylation cycle block. These abnormalities block the function of the cell-mediated immunity, and the ongoing elevation of RNase-L is a result. It's supposed to be temporary, but because the T cells do not take over, it continues. Glutathione depletion removes the inhibition from calpain, and it cleaves RNase-L, forming the low molecular weight version.

    My overall point is that I believe that the GD-MCB hypothesis has the capacity to combine and unify all the CFS theories that are out there and to explain all the features of CFS, both biochemical and symptomatic.

    You can find website references to this hypothesis in my bio on this board. They can also be found in the files section of several of the CFS internet groups.

    The best evidence for the validity of this hypothesis is the ongoing success of treatment to lift the methylation cycle block in CFS. It appears to be helping about two-thirds of the people who try it. The recovery process is slow, and it appears to be rate-limited by the rate at which the toxins that have accumulated during the illness can be excreted, but the process seems to be continuing for many people on this treatment. You can find reports about this from quite a few people on this board.

    Best regards,

    [This Message was Edited on 09/01/2008]
  17. Rrrr

    Rrrr Member


    i hope it is okay with you if i copy yr above note and post it on the cfs yasko (yahoo) list... it is very helpful to read and they should get to read it too. :)

  18. richvank

    richvank New Member

    Hi, Rivka.

    That's fine with me.

    Best regards,

  19. aftermath

    aftermath New Member

    Where do I start...

    First, I am so glad that people have finally addressed one of my posts regarding the dismal funding and banding together.

    I started on this crusade about a year ago when I found out the following info which alarmed me:

    The Annual Research Budget for AIDS in the US is 3 BILLION DOLLARS per year <a href="http://www.kff.org/hivaids/upload/Fact-Sheet-U-S-Federal-Funding-for-HIV-AIDS-The-FY-2006-Budget-Request.pdf">citation</a>

    The Annual Research Budget for ME/CFS in the US is $4 million dollars, down from 6 million last year <a href="http://phoenix-cfs.org/AdCFSACTestDec07s.htm">citation</a>

    There is no way this is ever going to change if we act as individuals.

    It certainly helps us psychologically to sit here and chat about different doctors, herbal and alternative protocols, etc. As they say, a man can live without food for a month, without water for a week but cannot live for a day without hope.

    Still, if we a real, proven cure, we need to force the government to FUND LEGITIMATE ACADEMIC RESEARCH to discover the mechanism behind the cause of this disease. Once the pharma companies see PROOF the illness is real, they will see loot in helping us and the rest will be history.

    The only way to do this is to pressure elected officials (i.e. Congress) through organized lobbying groups. The kind of people that walk the halls in DC and tell these empty suits (I have XXXX members that are all sick but well enough to manage to vote. If you don't vote for the bill helping fund research for our funding, I'm going to send a newsletter to all of them telling them you opposed us.

    This is how other powerful lobbies including the National Rifle Association, AMA, pharmaceutical groups, run the country.

    The primary group lobbying on our behalf is the <a href="http://www.cfids.org/"> CFIDS Organization of America</a>

    We might not like everything about them. Still, if there are things we don't like, we should still be members and pressure them for change.

    As I posted above, ONLY 2-4% of THOSE OF US WHO HAVE BEEN FORMALLY DIAGNOSED with ME/CFS spend the $35/year that it costs to be counted as part of this group.

    I know money is tight for us as a group because of what this illness has done to our ability to work. Still, when I see post after post describing a person spending 10 GRAND with FFC, Holtorf or any of these other clinics using unproven therapies and then watch my posts on nearly every thread asking who is a member of the lobby group get ignored, it makes me SICK(ER).

    I will ask again. Who else here besides me is a member?[This Message was Edited on 08/31/2008]
  20. aftermath

    aftermath New Member


    I have been following your protocol with interest over the last few months. I certainly believe that it has promise, and I am getting very close to trying it myself.

    What I really like about it is that it is not excessively expensive and uses items from various sources that you do not directly make profit from. It's also not prohibitively expensive.

    Out of curiosity, has anyone expressed any interest in doing a double blind placebo-controlled study to evaluate its efficacy?

    What I am so interested in Dr. Baraniuk's research is that it appears to fit my case very well in particular. My case was sudden onset, during a period of my life where I was way overextended time commitment wise (sleeping 2 hrs/night, etc).

    I look a lot like many CFS patients in that I have had both positive tilt table and brain SPECT scans. My capacity for anaerobic exercise (weights, push-ups) went from 90th% to 25%. I went from being rested on 5-6 hours sleep to destroyed even after 10-12.

    On the other hand, I am negative for basically every virus under the sun. HHV-6 (both by Viracor/CSF and Focus/blood). I am even EBV negative. Also, my cardiovascular exercise capacity was minimally diminished, to the point that I can even run a bit (it helps a ton with the brain fog).

    Again, I am very intrigued by your theory and may try it. Still, I am so jaded from all of the other theories I have tried--they are just theories until a placebo-controlled study is done.

    That's why I am wondering if there are any plans to put your very viable theory to the test...

    [This Message was Edited on 08/31/2008]

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