CFS and LYME Are REAL!!! CBS NEWS Wed. Nite

Discussion in 'Fibromyalgia Main Forum' started by spacee, Feb 23, 2011.

  1. spacee

    spacee Member

    Protein markers in the spinal fluid tells the tale. Too many (757) for CFS is in the fluid.
    They didn't say for Lyme. But, at least gives weight to the Lyme diagnosis!!!!!

    Expecting tests to be made for patients. Had a woman patient on and they asked her
    if doctors had ever acted as if she wasn't sick. She said "One doctor told me that all
    women are tired."

    It's a good day in the ME/CFS and Lyme world.


    PS nothing was said about FM but the woman on the news had a LOT of pain.
    [This Message was Edited on 02/23/2011]
    [This Message was Edited on 02/24/2011]
  2. tansy

    tansy New Member

    Thanks Spacee.

    UMDNJ researchers discover Chronic Fatigue Syndrome proteins in spinal fluid

    Published: Wednesday, February 23, 2011, 5:01 PM Updated:
    Wednesday, February 23, 2011, 5:17 PM

    By Seth Augenstein/The Star-Ledger

    NEWARK — Researchers this afternoon said they have found more than 700
    proteins unique to the spinal fluids of people who suffer from Chronic
    Fatigue Syndrome, a discovery that could verify that the often scoffed
    at ailment is real, according to a report by the University of
    Medicine and Dentistry of New Jersey.

    The syndrome has remained a mystery to the medical world for almost
    three decades. Originally called “yuppie flu” when it was discovered
    in the 1980s, doctors and scientists have never been able to pinpoint
    biological reasons why anywhere from 1 million to 4 million sufferers
    in the country are constantly, overwhelmingly tired.

    But the UMDNJ work identifies a protein trail that may eventually lead
    microbiological sleuths to find out what causes Chronic Fatigue
    Syndrome and how it can be treated.

    “It’s evidence that there’s biological stuff involved … that it’s not
    imagined,” said Steven Schutzer, the lead researcher.

    Schutzer, a UMDNJ-New Jersey Medical School physician and scientist
    who specializes in Lyme disease research, worked with colleagues at
    the Pacific Northwest National Laboratory in Washington. Together they
    zeroed in on the spinal fluid — a “liquid window to the brain,” as
    Schutzer calls it — to distinguish biological differences between Lyme
    disease and chronic fatigue syndrome. The work did just that, using an
    advanced mass spectrometer technique to identify hundreds of proteins
    unique to each condition and sort out protein differences between
    Lyme, chronic fatigue and a group of healthy test subjects.

    The Lyme findings — nearly 700 distinct proteins — are a discovery in
    their own right. But the chronic fatigue connection to specific
    biology is being embraced by groups that advocate against the disease.

    “They looked at a really important fluid, using a really advanced
    technology — and they found clear differences,” said Suzanne Vernon,
    the scientific director for the Chronic Fatigue and Immune Dysfunction
    Syndrome Association of America.

    “I’m very excited about this — you can’t dispute these biological
    findings,” Vernon added.

    Chronic Fatigue Syndrome has been controversial. It affects mostly
    women, and little is understood about it scientifically. Some recent
    studies have pointed to a viral cause, but others have found no
    evidence of it. Different federal government agencies — the Food and
    Drug Administration, the National Institutes of Health and the Centers
    for Disease Control and Prevention — have even taken part in
    contradictory studies.

    Just last week, the British medical journal the Lancet released a
    study that surveyed the condition of Chronic Fatigue Syndrome patients
    after an increase in exercise and psychotherapy. The Chronic Fatigue
    Syndrome association and other disease advocates vehemently attacked
    the report because the findings were based only on the patients’
    assessments of their progress.

    The UMDNJ study is based solely on biology, Schutzer said. He said his
    results heavily favor a biological and physical component to the
    syndrome, but the true proof of a cause -- and a treatment -- can only
    be determined by further research into the hundreds of proteins
    counted up in the mass spectrometer.

    Vernon said the UMDNJ discovery is an important one for Chronic
    Fatigue Syndrome patients — especially after the British study.

    “If there’s not a medical explanation for why you’re sick, it’s
    devastating,” she said.

  3. Bunchy

    Bunchy New Member

    How come the UK is taking no notice of this type of thing or other physical evidence eg Dr Kerr's genetic studies and the Sophia Mirza autopsy etc etc?

    I'm finding the UK angle so very depressing not to mention frightening.

    Hope you are OK

    Bunchy x
  4. tansy

    tansy New Member

    Hi Bunchy.

    The results of this study have only just been released so I'm waiting to see what happens in the UK media tomorrow and how the Wessely School attempts to counter these findings.

    What's so frightening about the situation in the UK is that the Wessely School have been able to get away with it so long and be funded with tax payers money.

    Take care, Tansy x
  5. ChuckNBerkeley

    ChuckNBerkeley New Member

    Article is here:
    pdf link is directly to the right of the article title.

    Interesting read. For those of us who started out with CFIDS and subsequently also seem to have lyme. Which may have been the problem all along. Or not.

    "Lyme disease, particularly Neurologic Post Treatment Lyme disease syndrome (nPTLS)" which I do not have as I have not been treated.
  6. spacee

    spacee Member

    I agree with Tansy. I think the UK will probably be the last nation to topple cause of
    Wessely. Sad. But I am hoping and praying it will come.

    Interested in watching how the other European nations react. The Netherlands who have
    invested so heavily into CBT at Radbound. I mean, we are talking ppl's jobs. How easily
    will they let go and say it is real.

  7. quanked

    quanked Member

    This is most interesting.

    Anyone out there know about retroviruses causing abnormal spinal fluid? For instance, the aids retrovirus--does anyone know whether or not altered spinal fluid in aids patients?

    Has anyone heard about a spinal fluid test?

    Any discussion of duplicating these findings?

    I hope information takes us forward.

  8. quanked

    quanked Member

    on the study.
  9. victoria

    victoria New Member

    research concerning those who had CFIDS and then also got Lyme. I wonder if they have all the proteins present in each cohort?
  10. karynwolfe

    karynwolfe New Member

    That's what I'm interested in as well. I had M.E. four years before I got Lyme, so what would they find in me?

    I'm not a fan of this study because I feel like it ignores.. a lot of things.

    They only had to fit the Fukada critera for CFS, so anyone who was sick with unexplained fatigue and could have been gotten into the study.

    Their Lyme participants had to be diagnosed with "post treatment lyme syndrome" or some other nonsense? My heart breaks for all the people who don't realize the treatment wasn't enough in the first place. One month of antibitoics isn't enough; if you're still sick after that, the infection is still there, probably becuase you've had it longer than you think or you got infected with multiple infections from the one tick bite, making it incredibly difficult to fight. The fact that they'd even use something like "Post Lyme syndrome" says to me they don't have a clue about what they're getting into.

    And they didn't find XMRV in any of the CFS candidates.

    It's NOT that I don't like it because they didn't find what I wanted them to, I didn't like it because it uses poorly defined subject groups and the researchers don't seem to be knowledgeable past mainsteam CFS and Lyme information, which is HORRIBLY construed and we all know it!

    They found something, but goodness knows who it will actually end up applying to.

    Enough about spinal proteins, we have a retrovirus in the blood supply to worry about.

  11. skeptik2

    skeptik2 Member

    Remember, WPI found XMRV in 100% of the Lyme patients

    So, there will be a "connection" to Lyme, whether researchers
    intended, or not.

    BTW, I saw nothing about these patients being tested for
    XMRV. Where did you see that?

    This study was funded by the NIAID, the head of which is
    Fauce of HIV fame and CFS infamy. He has been part of the
    U.S. gov't cover-up of CFS. He was directed by the new
    head of the NIH, however, to get to the bottom of CFS...
    so he asked the famous "virus hunter", Lipkin, to get
    100 XMRV samples from WPI, put them out to
    4 different labs/scientists, to see if they can find it, then
    switch the samples between labs to see if they can find
    the same number of positives.

    Now, on Feb 29, Lipkin and Mikovits are speaking at the
    same NIH conference in N.Y. (forgot name of it!). A
    virology conference, I think. That should be very very

    When Mikovits let Alter (of the positive Alter/Lo PNAS
    study on XMRV/PMLVs) meet actual patients and there
    corresponding labs, he was convinced these patients
    were really sick, and if XMRV isn't the reason, he said
    ''we have to find out why''.

    Maybe (fingers crossed), the same thing has happened
    with Lipkin and we'll be pleasantly surprised at the
    conference on the 29th.

  12. Mikie

    Mikie Moderator

    Docs in Europe have used injections of peptides to correct amino acid production in the body to treat CFIDS and many immune and autoimmune illnesses. Amino acids are the building blocks for the body to use in making proteins.

    Starting April 1, I will be seeing a new doc who is using this protocol here in the US. He will be my PCP. I don't know whether I'll try this treatment protocol or not; it's expensive and not covered by Medicare. Stiil, there have been no side effects and a high level of improvement and even what are considered cures in some areas like cancer. I believe I will eventually try it before the FDA tries to stop it here. I posted about it in a thread I started.

    Love, Mikie
  13. spacee

    spacee Member

    Dr. Judy said a few weeks ago "that within 6 months all the politics about CFS would go
    away". She was speaking to a group and there was a hush over the audience.

    Now, just wondering if the NIH wanted to "be the first (through a state university not a
    clinic started by a patient's parents) to announce that CFS and Lyme are real.
    That they wanted to do that before they do anything about the XMRV virus and how
    to treat Lyme and if they are all connected.

    The Feds have a lot of dots to connect and from past history, they will drag their feet.
    So, it's just a start. A lot of us have been sick so long. I will repeat what I have posted
    what Cheney has said. The Lyme Docs saw a huge increase in their practice about the
    time CFS was having outbreaks.

    Oh, if the Feds would only listen to the docs who see the patients. Incredible sad.

  14. tansy

    tansy New Member

    Hi Karyn. It's early days in this area of research, we already know that the tests for XMRV are somewhat specialised that's why some labs could not replicate them. So for the time being we cannot rely upon researchers to look for, or idenitfy, what role XMRV plays in ME.

    Looking at those who had ME or CFS prior to Lyme Disease would be interesting as a follow up study but I can understand why they did not attempt this at the first stage.

    As for the diagnostic ctriteria that concerns me too, hopefully as this research evolves they will be able to distinguish the various conditions that currently that get placed under the CFS umbrella. Dr Kerr found subsets in his gene based research.

    TC, Tansy
  15. tansy

    tansy New Member

    Hi Spacee. Given their history it's no wonder that they will drag their feet, I see it taking a long time in The Netherlands and UK especially because careers will be at stake. Building one's reputation on shaky foundations is unwise, in the UK we're dealing with people whose behaviour indicates a mindset akin to fanaticism.

    ME is a complex illness so even with sufficient funding it's going to take time to start joining the dots. It's become unnecessarily complicated as a result of naysayers complicating the issue with worthless definitions both sides of the big pond.

    TC, Tansy
  16. tansy

    tansy New Member

    Hi Mikie. I've been reading you posts on this Tx, the cost of potentially beneficial therapies unfortunately puts them out of the reach of many.

    TC, Tansy
  17. tansy

    tansy New Member

    Hi Skeptik. Finding this virus in both sets of patients was a real eye opener and I hope further research will identify what role it is playing in both of them because of their similarities.

    TC, Tansy
  18. tansy

    tansy New Member

    Thanks Quanked. Science Daily were also quick to publish a report on their website.

    I've not seen anything in the UK media yet. :-(

    TC, Tansy
  19. karynwolfe

    karynwolfe New Member

    I got the XMRV thing from this:

    "Schutzer is also involved in A SEPERATE STUDY looking for microbes — including the virus XMRV — in the spinal fluid of the 43 CFS patients. An abstract published earlier this month in Annals of Neurology reported that the team was unable to find XMRV in the spinal fluid of the CFS patients. Schutzer says the study is still underway and that he can’t comment further because it hasn’t been published yet."

    Source: Wall street journal online
  20. Mikie

    Mikie Moderator

    Soooo good to hear from you. How have you been doing? I know how hard you have fought to find treatments in a very hostile environment to our illnesses.

    All the news releases talk about studying spinal fluid. The treatment protocol for the peptide injections used blood serum to identify these peptide abnormalities, which lead to protein abnormalities. Seems it would be less costly and much less invasive, and dangerous, than using spinal fluid.

    Yes, the cost of the injections would put them out of the reach of many people. Fortunately, you do not have to take them indefinitely. After about ten of them, the body learns to build its protein using the correct peptide molecules. It can take ten injections at a cost of $300. I would take one injection a month. I would have to really squeeze my budget and dig into savings but if they helped, it would be worth it.

    Seems to me that this research is being done at a more basic level in the chain of events which lead to making the proteins. I'm sure it's much more complicated than what was presented at the seminar but I plan to find out more.

    Love, Mikie