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Article: By the Skin of their Teeth! Spotlight On the NJCFSA and the Enterovirus Foundation in the C

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. santi

    santi

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    Any test to detect active Enterovirus infection?
  3. Cort

    Cort Phoenix Rising Founder

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    Dr. Chia has a test to do that. It took him awhile to get the blood test down - but apparently its pretty good now. A better test is testing the gut tissues for them.
  4. Dolphin

    Dolphin Senior Member

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    The two groups are still holding on in the top 100 - but only just!

    100th position is now 925 (+43)

    That means in the last 4 days: +39, +44, +53, +40, +61, +75, +50, +43.

    This is better than I thought - I thought there would have been more of a charge by now.

    Quite a spread of changes in the top 7: range: +20 to +52

    #30 INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME/ME Chicago, IL 1,321 (+40)

    #36 CFSKNOWLEDGECENTER INC Wellington, FL 1,264 (+33)

    #57 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA 1,116 (+50)

    #78 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO 999 (+32)

    #86 WI MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, ASSN, INC. Sun Prairie, WI 975 (+20)

    #92 ENTEROVIRUS FOUNDATION INC San Francisco, CA 948 (+52)

    #99 NJCFSA Florham Park, NJ 931 (+38)

    #159 CFOG, INC Kennesaw, GA 541 (+29)

    #179 CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC Milford, CT 417 (+26)
  5. frenchtulip

    frenchtulip Senior Member

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    NJCFSA and Enterorvirus Foundation are terrific organizations! I just wrote to Dr. Bateman to see if OFFER could send an e-blast to members asking them to help the orgs in the contest--esp. those in danger of slipping off the leaderboard. I desperately hope we can keep all 7 orgs in winning position!
  6. Hip

    Hip Senior Member

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    V O T E F O R T H E E N T E R O V I R U S F O U N D A T I O N !

    Dr John Chia, who is on the board of the Enterovirus Foundation, has not only shown that enteroviruses are linked to CFS[SUP]1[/SUP], but has gone even further, and recently completed a study demonstrating that a percentage of people who initially catch an enterovirus as an acute infection will later go on to get CFS[SUP]2[/SUP]; in other words, Chia is beginning to provide proof that enteroviruses can cause CFS.

    I am amazed at how little interest is shown toward enterovirus research by many people with CFS.

    Slugs and Snails: The Two Sides of An Enterovirus Infection

    Along with others, Chia discovered that there are in fact two sides to a chronic enterovirus infection:

    Firstly there are the regular virus particles, which as per usual, consist of viral shells that house viral RNA inside.

    And then there is a second, hidden side of enterovirus infection, comprising strands of naked enterovirus RNA this naked RNA persistently occupying human cells, and replicating itself inside these cells.


    To make an analogy: If a regular enterovirus is a snail, with the snail's shell representing the viral shell, and the snail's body representing the enteroviral RNA inside, then this naked RNA is a snail's body without its shell; a slug, if you like.

    Unlike the regular "snail" enterovirus, this "slug" enterovirus RNA infection does not kill the cells it infects, but stays in the cell long term. And living hidden inside cells, this RNA does not produce an antibody response, so this infection remains hidden to many lab tests just as is often the case in CFS: the patient is ill, but tests show no infection.

    Dr Chia thinks that the slugs (enterovirus RNA) may be a major factor causing CFS, not just the snails (regular enterovirus). This is because the enterovirus RNA hidden inside cells likely alters the functioning of those cells, and may thus be causing significant problems for the body.

    This means that if you want to treat enterovirus-associated CFS, you probably need to find treatments that kill off BOTH the snails AND the slugs.

    So I understand that Chia is looking for a "snail & slug" killing treatment for CFS.


    Refs:
    1 Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach
    The role of enterovirus in chronic fatigue syndrome
    2 Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence

    See also:
    The Dr. John Chia Interview with Cort Johnson
    Dr. John Chia The Pathogenic Role of Enteroviruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    Enterovirus Foundation: List of Diseases linked to Enterovirus

    Note: This "slug" enterovirus the naked enterovirus RNA infection is also known as: a non-cytopathic enterovirus, a non-cytolytic enterovirus, a defective enterovirus, a terminally-deleted enterovirus, and a replicon. Google search for more info on this RNA enterovirus.
  7. Cort

    Cort Phoenix Rising Founder

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    These are both two great organizations and they are both off the top 100 and Wisconsin is about to drop off - they're at 99 and Rocky Mtn is right behind at 89. Rally support! Get on your emails and Facebook and rally support!
  8. Cort

    Cort Phoenix Rising Founder

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    These are both two great organizations and they are both off the top 100 and Wisconsin is about to drop off - they're at 99 and Rocky Mtn is right behind at 89. Rally support! Get on your emails and Facebook and rally support!
  9. Hip

    Hip Senior Member

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    Can an individual vote for more than one organization, or is it one vote per person?
  10. Dolphin

    Dolphin Senior Member

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    An individual can only vote for an organisation once. But please share your remaining votes around with ME/CFS charities.
  11. rlc

    rlc Senior Member

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    Hi Hip, Re
    I am amazed at how little interest is shown toward enterovirus research by many people with CFS.

    100% agree, I am completely stunned by the complete disinterest of so much of the CFS community towards this research, not only has Dr Chia identified that Enterovirus infection in found in a very high percentage of patients, but he has also developed treatments for the Enteroviruses, that not only greatly help a lot of patients, but in a lot of cases cures them, Dr Chias work is packed up by decades of research that has consistently found Enterovirus infection in patients by blood tests, stomach biopsy, muscle biopsy, and even at autopsy. Yet the majority of patients dont seem to care and instead are far more interested in all the other theories, when the science that backs these theories up is dubious at best and even when proven false people still keep supporting it.

    I also do not understand the logic in peoples thinking regarding these kinds of competitions for funding, all these CFS patient orgs that are included in the competitions, do not do scientific research to find the cause and cure for the patients, in fact to the best of my knowledge they dont even have any medically qualified people in them, voting for them wont get anyone better.

    The Enterovirus foundation is making great progress towards sorting out this problem once and for all, but is struggling due to lack of money, so if people want to get better they should do everything they can to get money to the Enterovirus foundation, instead of the US CFS orgs, who no matter what their intentions will never do anything towards finding a cure because they dont do any research! Supporting them just takes what little money there is away from the real research.

    Personally I think the US orgs should withdraw from trying to get the money and tell everyone to vote for the Enterovirus foundation and send all donations to them instead of the US CFS orgs.

    All the best
  12. Dolphin

    Dolphin Senior Member

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    Well, you can think what you like, but if I don't think that's likely to get the Enterovirus Foundation money. And in particular spending of winnings has to be accounted for to Chase i.e. it was spent on what they said it was going to be spent on.

    The "CFS groups", as you call them, weren't really in competition with the Enterovirus Foundation - people had 10 votes. Also, even if the three winning "CFS groups" withdrew, the Enterovirus Foundation wasn't close enough.

    It doesn't sound like you voted e.g. you posted that message when the contest was finished .
    The contest will hopefully be repeated in the future. I genuinely hope you will do some concrete initiatives to get the Enterovirus Foundation votes then. This time it missed out by less than 200 votes.
  13. Hip

    Hip Senior Member

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    The fact that enteroviruses have been largely ignored by the scientific community, and are generally thought of as "unsexy" as a research subject, is a major tragedy not only for CFS patients, but also for the wider community of sick people with various other illnesses. If you look at the number of both acute and chronic diseases that enteroviruses are linked to, you begin to realize that enteroviruses may well turn out the one of more nasty viruses in common circulation.

    Enterovirus diseases associations are:

    Brain:
    Attention Deficit Hyperactivity Disorder (ADHD)
    Chronic Fatigue Syndrome
    Aseptic Meningitis
    Encephalitis
    Rhombencephalitis (inflammation of the brain stem)

    Autoimmune:
    Guillain-Barre Syndrome
    Diabetes Mellitus Type 1
    Diabetes mellitus type 2
    Seronegative arthritis
    Chronic Fatigue Syndrome (CFS seems to have autoimmune features)

    Heart:
    Myocardial infarction (Heart Attack)
    Cardiac Arrhythmia
    Coronary Heart Disease
    Dilated Cardiomyopathy
    Myocarditis
    Myopericarditis

    Skin:
    Juvenile Dermatomyositis
    Viral Exanthems

    Other:
    Birth Defects and Problems During Pregnancy
    Nonspecific Febrile Illness
    Acute Hemorrhagic Conjunctivitis
    Hand, Foot, and Mouth Disease
    Pleurodynia (Bornholm disease, Devil Grippe)
    Polio
    Herpangina
    Hepatitis

    References:
    List of Diseases linked to Enterovirus
    List of human diseases associated with infectious pathogens

    Even just considering diabetes type 1 and type 1, the yearly economic cost in the US for these diseases is $14.9 billion and $159.5 billion respectively (ref: here). My own concerns are not just for people with CFS, but also for the huge amount of ill health that is perpetrated by various infectious pathogens commonly found in circulation.

    I have nothing against seeking out new viral associations with CFS, such as XMRV; but if only a fraction of the interest and replications studies that XMRV received were directed to enterovirus, I would wager that CFS would be on the way to a cure by now. So in my view, this disinterest in enterovirus research is HUGE tragedy for CFS patients, and also for the wider community of ill people with diabetes, ADHD, GBS, heart disease, etc.
  14. rlc

    rlc Senior Member

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    Hi Hip, again 100% agree, what makes it even worse is the proven link between Enteroviruses and so many of the illnesses it causes,, has been known for decades, apparently the major cause of the lack of interest in the scientific community, is that there are no patents on Enteroviruses, so no money to be made, it would be nice if someone put human suffering above money, but the world we live in at the moment doesnt seem to work that way.

    I hope that the Lipkin pathogen study, if they select that right patient cohort, proves the link between ME and Enteroviruses and then maybe someone will put some money up for treatment research, fingers crossed! But the research that implicated Enteroviruses in ME was done back in the 1980s a lot before CFS was even invented, so again agreed huge tragedy for ME, it should have been the main focus of research decades ago, and so much suffering could have been avoided, but the CDC and Wessely school stopped the research, if Enteroviruses prove to be the cause I can see a lot of class action lawsuits in the future.

    All the best

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