1. Patients launch $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!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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ME/CFS Reseach--Resources

Discussion in 'Action Alerts and Advocacy' started by Christopher, Jan 30, 2014.

  1. Christopher

    Christopher Senior Member

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    Journalism


    The Blue Ribbon: ME/CFS And the Future of Medicine
    • A documentary by Ryan Prior


    Canary in a Coal Mine
    • A documentary led by Jen Brea


    Plague
    • A book authored by Judy Mikovits and Kent Heckenlively


    Llewellyn King
    • Getting the word out through the White House Chronicle


    Miriam Tucker

    David Tuller

    Research


    Healclick.com
    • A web application led by Joey Tuan
    • Goal is to collect patient data and provide anonymously to researchers


    MAR Consulting
    • A company led by Judy Mikovits and Frank Ruscetti


    Dr. Ian Lipkin
    • A sympathetic government researcher
    • Associated with several organizations where we can direct funding


    Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative
    • A treatment and research program under the Stanford School of Medicine


    Enterovirus Foundation
    • Led by John Chia to research enterovirus involvement


    Andrew Mason
    • Dr. Mason is affiliated with the University of Alberta, and is pursuing antiviral therapy for PBC, an autoimmune disease of the liver


    Martin Lerner
    • Treats with antivirals and has conducted studies


    Norwegian Team (Rituximab) Phase 3 Trial



    UK Rituximab Trial
    • Sponsored by IiME (UK-based)


    Simmaron Research
    • Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders.


    Open Medicine Institute
    • The Institute’s immediate research efforts focus on poorly understood diseases such as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Autism, Lyme, Multiple Sclerosis, and other neuro-immune conditions. OMI will apply our unique translational model to a wide range of diseases such as blood cancers and cardiovascular disease.


    CFI (Glen Hutchins)
    • Chronic Fatigue Initiative is a science-based 501(c)(3) nonprofit organization fostering and supporting collaboration among the world’s leading medical research, treatment and public health organizations in understanding the causes, therapies and epidemiology of Chronic Fatigue Syndrome (CFS). Headquartered in New York City and funded by the Hutchins Family Foundation, CFI seeks to accelerate the medical community’s knowledge of CFS through research grants and collaborative processes across institutions.

    NIDA (Neuro-Immune Disease Alliance)
    • has funded OMI and Simmaron


    National Centre for Neuroimmunology and Emerging Diseases - NCNED, Australia
    • Our mission is to perform world class biomedical research that will contribute to the understanding of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) through the identification of physiological mechanisms and biomarkers.


    Lenny Jason


    Whittemore Peterson Institute
    • The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong disease and disability.


    Professor Kenny De Meirleir
    • Affiliated with WPI

    Multiple Sclerosis Charcot Project
    • Antiviral trials for MS

    Michael Pender at the University of Queensland
    • anti-EBV measures for MS


    Information Resource

    Dr. Jamie Deckoff Jones
    • Doctor who blogs about treatment and politics

    Academy of ME & CFS Physicians
    • "composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance."


    Chris Cairns


    Cort Johnson


    CFS Remission Blog
    • Blog by Ken Lassesen mainly discussing how attempting to shape the gut microbiome can help with CFS symptoms

    Bifido Thread on PR
    • Thread with helpful information from @Vegas about the beneficial effects of consuming bifido strains and how to culture yogurt with them.


    RS Thread on PR
    • Thread with helpful information from @Ripley about how consuming foods high in RS (Resistant Starch) increases bifido bacteria in the gut.

    Patient Advocacy

    National ME/FM Action Network of Canada
    • The NATIONAL ME/FM ACTION NETWORK became a Canadian charitable organization on June 18, 1993 dedicated to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research.
    European ME Alliance

    • The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
    Invest in ME

    • We are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
      We have links nationwide and also internationally.

    Lipkin's $1 million dollar appeal
    • Discussion on how to raise funds for Lipkin's proposed gut study with Columbia


    Fundraising

    Wally-World
    • A group effort to push for federal funding into ME/CFS


    MEandYou
    • Maria Gjerpe, to crowdfund Rituximab trials in Norway at Haukeland Hospital
     
    Last edited: Feb 10, 2014
    ahimsa, NK17 and ggingues like this.
  2. August59

    August59 Daughters High School Graduation

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    Hopefully, someone can answer this as I can't remember definitively. Wasn't Dr. Alan and Kathy Light working on trying to come up with a preliminary set of "criteria" for at least 3 to 4 subsets of ME/CFS?
     
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
  4. justy

    justy Senior Member

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    Lenny Jason
    Professor Kenny De Meirleir
    Invest in ME
     
    alex3619 likes this.
  5. Wally

    Wally Senior Member

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    @Christopher - I think this is a great idea. If the patient community is going to get involved in a fund raising campaign, it will be important to evaluate what research projects such a fundraising effort should be focused toward. Also, it may not be easy to get people to agree on which projects should be supported, so the project that is proposed must be marketed in such a way that people will want to support it. After identifying each potential research project, they need to be evaluated by people with a science background to determine if they will give the patient community the most bang for their buck. Also, people/patients will not want to contribute to something unless they are convinced it is well organized and it can fund what it is asking patients to contribute their precious dollars and cents to.
     
    justy likes this.
  6. Firestormm

    Firestormm Guest

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    Cornwall England
    Christopher,

    I think something like this would be very useful as a feature somewhere on our home page and in the forums - maybe even an article/blog can be made out of it? I would be happy to consider any draft if once you felt this call was complete.

    As you know, we have an article coming out very very soon from Ian Lipkin so stay tuned for that and the information it will carry. Just trying to finalise the details with Columbia at this minute...

    Have a look at our Home Page and see if you can think of somewhere prominent where we might slot your efforts in as perhaps a permanent home to which we can direct people.

    Let me know if you want to take this initiative further or have any other ideas.

    Russ
     
  7. Firestormm

    Firestormm Guest

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    Oh I should have said that it was an interview - sorry I thought the cat was already out the bag on this one :)

    @Christopher I wonder if you might not like to change the title of this thread - only I just stumbled across it and perhaps others would find it more easily if it reflected the content and your call for nominations? Or had an introduction so as peeps would know what it was all about.
     
    Last edited: Feb 6, 2014
  8. lnester7

    lnester7 Seven

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    Do we know of anything to attract / support new reaersechers in USA?
     
  9. Wally

    Wally Senior Member

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    Money $$$$$$$ :D
     
    ggingues likes this.
  10. lnester7

    lnester7 Seven

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    @WaIly I meant an organization that helps set up. I am trying to help out somebody to start on CFS (researcher) and it has been SOOOOO hard. If this is an example of how it is, we have no much hope!! `It has been very educational to see the challenges to start up in a new field (for established researcher in other fields).
     
  11. Wally

    Wally Senior Member

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    @Inester7 - in all seriousness it does relate back to money. If a researcher, who is established in another field, wants to do research related to CFS, they will probably need to have a plan on how they will be able to tap into existing or new sources of money to fund their research. There are already so many proposed research studies in the pipeline, it would probably take something pretty remarkable to get anyone's attention to switch to a new proposal from someone unknown to this field. Perhaps, the researcher that you are speaking about might approach the Open Medicine Foundation, which formed the OMNI-Merit group to look at a broad spectrum of research projects, to discuss their ideas. See, http://openmedicineinstitute.org/research-initiatives/mecfs-merit/
     
    lnester7 likes this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes please, @Christopher, I just stumbled on the thread too, but wouldn't have guessed from the title what it was about.

    Something like "ME/CFS Reseach--Resources" ? or something better that you could come up with?

    Thanks,
    Sushi
     
  13. lnester7

    lnester7 Seven

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    This is kinda what I was looking for, But the issue with researchers is (if it is a serious one) you cannot use money from a grant (which is how they are up and running to pay their way) to apply time and resources to another field.

    So where is this start up money will come from for new people.
    @Wally "they will probably need to have a plan on how they will be able to tap into existing or new sources of money to fund their research."

    I am just saying as a community maybe we should think about this question so we can attract new researchers. Just a thought. Now if somebody has the answer let me know please.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I can change it for you. Tell me what you would like. :)

    Sushi
     
  15. Christopher

    Christopher Senior Member

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    Pennsylvania
    2/9/2014

    Added:
    CFS Remission Blog
    • Blog by Ken Lassesen mainly discussing how attempting to shape the gut microbiome can help with CFS symptoms

    Bifido Thread on PR
    • Thread with helpful information from @Vegas about the beneficial effects of consuming bifido strains and how to culture yogurt with them.


    RS Thread on PR
    • Thread with helpful information from @Ripley about how consuming foods high in RS (Resistant Starch) increases bifido bacteria in the gut.
     
  16. deboruth

    deboruth

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    Christopher, I appreciate your Journalism and other listings on your contacts page. Could you please make a small correction? I am Llewellyn King's co-founder and co-worker on MECFS Alert. I myself have been anywhere from partially to wholly disabled by the disease since late July, 1989. MECFS Alert could be said to have been birthed by White House Chronicle, (which did several shows on the topic before MECFS Alert was started) just as Athena was spawned from Zeus' thigh. However, we are now up to more than 65 episodes on Youtube, and MECFS Alert should be mentioned ion your listing n its own name, though it can be accessed via the White House Chronicle website, which is perhaps the easiest way to find it.
     

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