1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

To Give Or Not To Give...and How Much?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 15, 2013.

  1. Banksy

    Banksy

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    i also think first money should go to advertisement of cfs so people know.
  2. Sasha

    Sasha Fine, thank you

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    I think it's an important point that patients funding research gives us some control over the research agenda. In established diseases where there are drug treatments, pharma companies publish a lot of trials that have seem to have been designed more for marketing than to advance clinical knowledge - statistically underpowered trials with selectively reported outcome measures, the same trial 'salami-sliced' into multiple publications that make it look like many trials and so on. And, as you say, Dolphin, governments have let ME patients down in the research that they've been funding - in fact, they've made our situation worse by pushing the psych agenda. Supporting our research charities is hugely important.

    And you're right, the money really does add up. Simmaron pulled in the final $20,000 since October to fully fund its $225,000 pilot study on NK cells in spinal fluid - a crucial study - and that in turn pulled in a guaranteed $800,000 from another foundation for a full-scale follow-up.
    Dolphin likes this.
  3. Sasha

    Sasha Fine, thank you

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    Hi Banksy - a group of patients did a really big push after the Science publication of XMRV to get an ad in the Washington Post (I think). It was hugely expensive. I don't know how much it pulled in, in terms of donations - I can't remember after all this time but I expect they were fundraising for WPI. Does anyone remember?

    Our difficulty is that our story is complicated and not easy to get across in an ad to a public who have been educated to dismiss us. Breakthroughs such as if the FDA approves Ampligen for CFS or if the Lipkin study comes up with something clearcut or if a Rituximab trial gets strong results would give us something to push, but it has to be worth it in terms of what we would get back.

    Just did a bit of googling, here's the XMRV thing:

    http://givenmeathorn.blogspot.co.uk/2010/12/xmrv-mecfs-ad-campaign.html

    It was an impressive achievement to get it set up and for them to manage to fund the ad.
    Banksy likes this.
  4. GcMAF Australia

    GcMAF Australia Senior Member

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    ...
    Hi Tan {{{{{Hugs}}}}}}
    and mega -hugs
    At the moment Lyme groups in Australia are getting organised.
    They are looking into this awareness issue and research etc raising money and more etc
    I have been meaning to post a lot here but have been busy recently with these groups.
    I have spoken to relatives in adelaide (where tan is) regarding possible donations and support from a company that would have very good connections. My nephew knew about US Open champion 20011 Sam Stosur having had Lyme. So i think this helped set up a connection. By the way about 40 ppl in South Australia have now been diagnosed with Lyme. although it does not exist.
    His wife is in the projects section of SA Health and so could be a very handy contact.
    .
    And yes a sign in the local community regarding money for CFS would be a fantastic idea. It automatically tells the community what is happening.
    I want to nominate Tania for Australian of the Year- there are many catagories
    Sasha likes this.
  5. GcMAF Australia

    GcMAF Australia Senior Member

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    PS i could do with a bigger microscope
    (just kidding)
    ;)
    Sasha likes this.
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    Mish Mash
    yes the H. pylori and stomach ulcers and cancer came out of the left field (somewhere in the peanut gallery/ bleachers section i think ) Currently there is a lot of things coming out that link many many diseases -(eg MS, alzheimers etc etc)
    namely infection with bacteria or viruses or both
    and inflammation and immune imbalance
    so a treatment that works for one disease often has applications in many others
  7. taniaaust1

    taniaaust1 Senior Member

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    That's great to hear that PR is seriously considering these things. Yes.. I do think a forum poll would be the best way to choose a ME/CFS fundraising focus which most would like to support and see more publicized and supported.

    No PR Australian Amazon store?? I dont know if its just my thought or not but I thought this site may be getting more popular with Australians over time.
  8. Mark

    Mark Acting CEO

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    As far as we can determine, there's no such store ('amazon associates') for Australia. A shame, because you're right, we do have lots of Australian members.
    taniaaust1 likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Good post Dolphin

    I'd like to point out that Australia has done a lot of interesting ME/CFS studies over the years, some of them groundbreaking. We get hardly any gov money towards ME/CFS research at all (except from one of the states govs) and hence most of our ME/CFS studies have been achieved by private donations (usually to one of our trusts which support ME/CFS eg Alison Hunter Memorial Foundation or the The Judith Jane Mason and Harold Stannett Williams Memorial Foundation (which supports both ME/CFS research and Alzheimers research.. 60% goes towards ME/CFS research). The power of private donation and what it can achieve (sometimes more then what governments are doing), shouldnt be underestimated and most of the Australian studies show that.

    To check out what mostly private donations can achieve.. see the Australian study list (note.. its still missing a lot of the studies).. many (or most) of the uni and other studies were funded by the private orgs above which rely on private donations. http://forums.phoenixrising.me/index.php?threads/australian-cfs-me-history-and-events.5722/
    Sasha and GcMAF Australia like this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, I am impressed with some of the results out of Australia. I will likely donate to a worthy cause when I have the money and it is brought to my attention.

    GG
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    considering who to give too??
    well there a lot of infections that may be involved
    http://www.thepowerhour.com/news/mycoplasma_testing.htm
    -->
    |
    • LYME DISEASE
    • "CHRONIC LYME DISEASE" or "NEW LYME DISEASE"
    • "MONTANA LYME DISEASE"
    If bitten by ticks or fleas carrying Borrelia burgdorferi you can develop traditional Lyme Disease, which is self-limiting and carried by a deer tick. Our experience with patients suggests that if the tick or flea also carries co-infections, such as Babesiosis or especially Mycoplasmas, you may develop "Chronic Lyme Disease" also known as "New Lyme Disease" as well as Chronic Fatigue Syndrome, Fibromyalgia and Autoimmune Diseases.
    "Montana Lyme Disease" symptoms are similar to Lyme Disease. However, it is caused by a Lyme disease-like agent that has adapted to the Rocky Mountain wood ticks found in Montana and the Western United States.
    "Chronic Lyme Disease" is a combination of the pathogen:
    Lyme Disease and one or more of the following Co-infections:
    Spirochetes (Borrelia bacteria):
    Lyme Disease caused by three types of Spirochete Borrelia bacteria:
    Borrelia burgdorferi sensu stricto (USA, UK, Europe)
    Borrelia garinii (UK, Europe)
    Borrelia afzelii. (UK, Europe)
    Relapsing Fever caused by the spirochetes:
    Borrelia hermsii
    Borrelia turicatae

    Mycoplasmas: Mycoplasma fermentans
    Mycoplasma pneumoniae
    Chlamydia pneumoniae
    Rickettsial Diseases:
    Rocky Mountain Spotted Fever
    Coxiella burnetti (Q-Fever and "Post-Q Fever Fatigue Syndrome")
    Colorado Tick Fever
    Eastern tick-borne Rickettsiosis
    Rickettsialpox
    Tularemia (rabbit fever)
    Ehrlichiosis (caused by Ehrlichia, a rickettsia-like bacteria)
    Anaplasmas (related to the genera Rickettsia and Ehrlichia)
    Babesiosis:
    Babesia microti
    Babesia WA-1
    Hepatitis-C

    Bartonellosis:
    Bartonella henselae (cat scratch fever)
    Bartonella quintana (trench fever)
    Viral Meningitis
    • CHRONIC FATIGUE SYNDROME & FIBROMYALGIA
    The top three pathogens that Chronic Fatigue Syndrome and Fibromyalgia patients on the Mycoplasma Registry
    test positive for using PCR blood tests:
    1. Mycoplasma fermentans (incognitus strain and various other strains)
    2. Human Herpes Virus-6a (HHV-6a)
    3. Chlamydia pneumoniae ("Chronic Chlamydia pneumoniae infection")
    Others pathogens found:
    Mycoplasmas:
    Mycoplasma pneumoniae
    Mycoplasma hominis
    Ureaplasma urealyticum
    Mycoplasma genitalium
    Mycoplasma penetrans
    Borrelia burgdorferi ("Chronic Lyme Disease"
    may cause or trigger fibromyalgia)
    Brucellosis ("Chronic Brucellosis")

    Rickettsia Diseases:
    Coxiella burnetii (Q-Fever and "Post-Q Fever Fatigue Syndrome") Staphylococcus
    Viruses:
    Epstein-Bar Virus (reactivation)
    Coxsackie B Viruses(1-6)("Chronic Coxsackie Infection" may cause or trigger fibromyalgia, myalgias and other diseases.)
    Parvovirus B19("Chronic Parovirus Infection" may cause or trigger fibromyalgia, arthralgia, arthritis)
    Enteroviruses (causes: "Chronic inflammatory muscle disease"or fibromyalgia)
    Cytomegalovirus
    Borna Disease virus
    Cytocidal Viruses
    Hepatitis C ("Chronic Hepatitis C" may cause or trigger fibromyalgia)
    * * * * * * * * * * * * * * * * * * * * * * * * *
    • PERSIAN GULF WAR VETERANS
    The Gulf War Mycoplasma Study showed that nearly all the Gulf War veterans who tested positive for mycoplasma infections were positive for Mycoplasma fermentans. Mycoplasma genitalium was also found and a very small percentage tested positive for Mycoplasma pneumoniae.
    We recommend that all Gulf War veterans also get tested for: uranium poisoning from exposure to depleted uranium, antibodies to experimental vaccine adjuvants such as squalene, and if there has been any exposure to organophosphate pesticides or sarin nerve gas get tested for the blood enzyme, paraoxonase.
    In addition, Veterans have experience long term side effects from prescription drugs such as:
    pyridostigmine bromide, given to troops to protect against nerve gas, and the antimalarial drug Lariam (mefloquine).
    * * * * * * * * * * * * * * * * * * * * * * * * *
    • AIDS ASSOCIATED MYCOPLASMAS and VIRUSES
    Mycoplasmas:
    Mycoplasma penetrans
    Mycoplasma pirum
    Mycoplasma fermentans (incognitus strain)
    Mycoplasma fermentans (various other strains)
    Mycoplasma hominis
    Mycoplasma genitalium
    Mycoplasma pneumoniae
    Ureaplasma urealyticum
    Viruses:Human Immunodeficiency Virus (HIV)
    Human Herpes Virus-6a (HHV-6a)
    Cytomegalovirus
    Herpes Simplex virus
    Enterovirus
    taniaaust1 likes this.
  12. GcMAF Australia

    GcMAF Australia Senior Member

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    Then maybe it is worth looking more at the treatments possible rather than the causes
  13. Sasha

    Sasha Fine, thank you

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    The current Lipkin study is looking at a very wide range of pathogens including unknown ones on a kind of DNA hunting trip, as I understand it - now that the technology is available to test for a whole ton of things at once, it doesn't make sense to do studies looking for one pathogen at a time. He's also looking at host response to see if there's a common kind of damage.

    Studies are hugely more efficient and powerful than they used to be, because of this new technology so I don't think we need to be daunted by a big list of pathogens.
    MishMash and taniaaust1 like this.
  14. cruzgirl

    cruzgirl

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    Is there a way to have an Amazon icon that is linked to Phoenix Rising site that you can just click from your own page. It would be much easier then having to go to this site first and then find the link. Hopeful...

    I also would like us somehow to get to a stage where we are as big as Breast Cancer charity, they get so much support and they are so organized. They are everywhere. How did they do it and how can we mimic that when we are so sick. We really need a leader willing to help us. Perhaps our money that we have needs to be channeled into a director we pay who then goes forward and promotes our disease and gets the fund raising really going. This would be a big step and would need volunteers (healthy) and perhaps paid staff. Eventually the money we would make would pay everyone much like Heart and Stroke Foundation etc.
  15. Sasha

    Sasha Fine, thank you

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    I think the team are working on this.

    This is the remit of the various countries' ME charities - they do their best, I think!
  16. Mark

    Mark Acting CEO

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    You can right-click on the Amazon link on the Phoenix Rising page, 'Copy Link Location', then you can paste that address in to your browser favourite for Amazon. We do need to write some instructions on how to do that, for all the different browsers, but cruzgirl, if that explanation isn't enough to explain how to do it, perhaps somebody can write some kind of explanation here and we can then add that to the Donate page.
  17. cruzgirl

    cruzgirl

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    Thanks Mark, I will try and see if that works for me. I guess I would need two of those Amazon links, one for Canada Amazon and one for US Amazon. Thanks for the help.

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