The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Jen Brea launches mass-advocacy platform — #MEAction goes live!

Discussion in 'Phoenix Rising Articles' started by Sasha, Jun 9, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Sasha submitted a new blog post:

    Jen Brea launches mass-advocacy platform — #MEAction goes live!

    Sasha gives you the tour and tells you what it’s all about...

    [​IMG]

    Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.

    Her health collapsed, and she was forced to go on medical leave. She got married, but was too ill to say her vows.

    This was her entry into the world of ME/CFS. But fortunately for us, she had the skills, connections, support and attitude to use social media to do amazing things.

    First, in October, 2013, she launched a crowdfunding campaign for a documentary about the disease. The footage that she’d already put together looked amazing.

    Patients and supporters piled in with their money and Jen raised over $200,000 (£130,000, €180,000) in 30 days. Filming is underway. While the film crew is on location, she directs them via her iPad.



    Then, despite being stuck in bed, she started Thrive Show, a Google Hangout series about living well with chronic illness.

    And now, with co-founder Beth Mazur and site admin Rachael Korinek, she’s launched another exciting venture: #MEAction. It’s a platform that patients, advocates and organisations can use to get the international community behind them.

    Thanks to Jen’s profile in the community, it has a ready-made audience, and one that we can expect to rapidly grow. Finally, we have a chance to exert our strength in numbers.

    "We were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force." - Jen Brea

    This issue of little groups of patients scattered here and there across the globe and never coming together as a force for mass action has been a longstanding problem for ME/CFS. It’s formed a major barrier in getting our disease treated on an equal footing with comparable conditions such as MS and lupus.

    #MEAction aims to stop all that. Already, it’s launched or promoted a number of advocacy, fundraising and research initiatives, including:

    • a U.S. and overseas petition, already with over 1,500 signatures, calling on the U.S. Congress to support funding equality for ME with an annual $250 million research budget
    • the Chilli ME Challenge, started by ME patients to raise money for Dr. Lipkin and Dr. Hornig’s research team at Columbia and inspired by the success of the ALS Ice Bucket Challenge
    • the $10 Challenge being run by the Microbe Discovery Project team for research at Columbia
    • a crowdfund by Nobel-laureate-stuffed END ME/CFS for their ‘Big Data’ biomarker study of severely ill patients
    • Dr. Leonard Jason's research survey on cause of death in ME/CFS
    • a brother's amazing sponsored-run video to raise funds for ME Research UK to help his sister, who has the disease
    There are three main ways that you can use the platform.

    You can find like-minded people to work on advocacy or fundraising projects by listing your skills and ‘dream projects’ in the #MEAction membership directory. You can propose new action plans, issue calls to action, and connect with other members in the Action Centre. And soon, you’ll be able to start up a local group or one organized around a theme or a cause.

    You can start a petition. You can organize an event, such as a fundraiser or a march. Soon you'll even be able to crowdfund.

    This really does seem like the beginning of something big, and our whole community can join in to grow it. There are millions of us worldwide and it’s time for us to come together as a force for change.

    Imagine the day when a crowdfund is announced and we can raise millions a year instead of thousands. Imagine when we can hit our governments with a tsunami of protest.

    This is the way that we’ll get equality, so let’s go to it. Visit the site, join in the actions, start up your own. Follow the lastest news on Facebook, Twitter and Google+.

    Register on the site to get upcoming weekly emails. Volunteer to help them. Tell other patients, your family, your friends.

    Take some #MEAction!



    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]
    Continue reading the Original Blog Post
     
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  2. *GG*

    *GG* Senior Member

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    Cool, good to hear!

    GG
     
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  3. sarah darwins

    sarah darwins I told you I was ill

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    Fantastic. I find the big social media platforms overwhelming and exhausting, but like it or not they really matter now. Well done, Jen Brea, for having the will and vision to get this done.
     
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  4. Sasha

    Sasha Fine, thank you

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    I'm really excited to see this happening - it's an absolutely fundamental piece of infrastructure that our advocacy and fundraising need in order to grow the base of PWME who want to work towards getting what we need. United we stand, divided (and scattered) we fall.

    BTW, here's the video of the brother of the PWME I mentioned in that article who's fundraising for MERUK. It's brilliantly done. Have a look:



    What a wonderful brother! And he's raised over £7,000. Here's his JustGiving page if you want to donate:

    https://www.justgiving.com/tjwhittingham/
     
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  5. Nielk

    Nielk

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    In addition, when at the event page, click - "see all events" and then click on a specific country. It will give you more events featured for that specific country. For example, if you click on United States, you will find:

    -Llewellyn King's article to the Congress Blog - with a request for US people to send a link of this article to their congressional representatives.

    -A congressional letter writing campaign with an easy one click app for $250 mil funding for ME. started by MEadvocacy.org.

    These two actions/petitions are crucial to reach congressional representatives in the U.S.
     
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  6. Sasha

    Sasha Fine, thank you

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    Potential signatories should note that the MEAdvocacy.org letter also calls for adoption of the CCC and the name 'Myalgic Encephalomyelitis'.

    Those who would prefer the adoption of the proposed IOM criteria and 'SEID' may prefer to sign #MEAction's own petition/letter to congress that also calls for funding equality at $250m/year but that doesn't tie that call for money in with issues of diagnostic criteria or nomenclature.

    Here's the US petition:

    http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new

    and here's the global petition:

    http://my.meaction.net/petitions/us...-around-the-world-care-about-funding-equality
     
    Last edited: Jun 10, 2015
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  7. Nielk

    Nielk

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    Please note that the MEaction petition does not mention the IOM or SEID.

    This is the letter from MEaction:

    This is the letter from MEadvocacy.org

    Please read both letters and take a couple of minutes to sign both or whichever letter you prefer.
     
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  8. Sasha

    Sasha Fine, thank you

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    That's correct and I've edited my post to make that doubly clear.
     
    Last edited: Jun 10, 2015
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  9. Eddy Keuninckx

    Eddy Keuninckx

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  10. *GG*

    *GG* Senior Member

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    http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new

    From this link, once you choose your Petition.

    There is an "email" option on the left side of the page, and this is roughtly the message that is suggested to be copied and sent to friends, trying to make it easier by posting it here, does not copy and paste well from the site. FYI

    Dear Friends,

    I just signed a Petition at #MEAction telling Congress to give Myalgic Encephalomyeltits (ME) the research funding equality it deserves.

    It would mean the world to me if you could also add your support for this important issue affecting patients with ME. Every name that is added builds momentum for #MEAction and makes it more likely that the Funding Equality Petition</a> will reach its goal.

    Will you join me?
    http://www.meaction.net/funding-equality-petition/ >Sign the #MEAction Funding Equality Petition

    After you've signed the petition please also take a moment to share it with others. It's easy – all you need to do is forward this email.

    Thank you!
     
    Last edited: Jun 10, 2015
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  11. Marylib

    Marylib Senior Member

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    Last edited: Jun 10, 2015
  12. Sasha

    Sasha Fine, thank you

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    Thanks, @Marylib - can I suggest we don't let the thread get bogged down in the issue of case definition, though and keep it focused on #MEAction and its new site? I just wanted to flag up the difference between the two petitions on #MEAction for clarity but it would be very easy to get sucked into that side-issue (not that I think that you intend to do that but once that particular topic is raised, people tend to weigh in on it and threads get derailed).

    We had a ton of threads post-IOM on the various issues around the various case definitions and they're easily found if anyone wants to discuss those issues further (or to start a new thread).
     
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  13. Marylib

    Marylib Senior Member

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    Very wise to have a petition that is not supporting any case definition at this point. Until the ICC moves from being a research definition to an accepted clinical definition. There is a mention on the CDC website from 2010 that CFS and ME need to be defined separately.
     
  14. Marylib

    Marylib Senior Member

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    Fine by me, Sasha. My interest is education, not intending to derail anyone. And please feel free to clean up my post or reply. Hard for my eyes and brain to follow too many moving parts. Thanks.
     
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  15. Sasha

    Sasha Fine, thank you

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    No, your post's fine, Marylib - I know you weren't trying to derail anything! It was really a message for anyone who might want to go down that path, and trying to steer them onto a more appropriate thread. :)
     
  16. deboruth

    deboruth

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    Beg pardon Sasha, but we have to start opposing the thought that ME "has no known cause" or "etiology," which is part of the NIH disinformation campaign and excuse for no research. In fact, ever since the CDC's excellent Dubbo project causation has been documented, albeit not completely. Which leaves us at the same stage of awareness as cancer -- also a disease with known causes, though for which not all causes and mechanisms are known. The US government and scientists worldwide have spent $$$ trillions to achieve this partial understanding of cancer etiology, whereas our plucky ME researchers have managed to reach an analagous stage of partial understanding with a worldwide total over the past 70 years numbering only in the $$$$ tens of millions. Clearly our team delivers far better value for money.

    Equally, it is not the whole truth to observe that "there is no FDA approved treatment." This makes it sound as though the FDA is a passive player. The truth is that FDA refuses to allow a number of proven treatments, most notably the highly effective Ampligen, which has better-demonstrated effectiveness than the billions of dollars of statins Americans swallow obediently despite total absence of evidence that this class of drug prevents heart attacks.
    CDC,NIH and FDA simply deny all the achievements of our researchers and clinicians, such as the considerable knowledge achieved (through the under-funded sweat of ME researchers' brows) about biomarkers, in order to excuse their own determination to turn the disease into a mythical psychological phenomena.
    US government policy on M.E. represents the only case in medical history wherein Federal agencies have ruthlessly denied, rejected and contradicted the on-the-record recommendations and conclusions of the recognized body of professional experts. It is extraordinary that for thirty years the Federal agencies have persisted in denying the expertise of M.E. medical professionals and systematically thwarted the efforts of American citizens, taxpayers, and elected officials to aid disabled and dying patients. Instead, leaders in these agencies have willfully and fraudulently banished medical expertise on M.E., along with persons who wish to aid M.E. patients, from the domain of the U.S. Department of Health and Social Services. One person has occupied a position of enormous power and influence long enough to assure this regime. "He hates ME," a source reported to M.E.'s ace investigative reporter, Hillary Johnson (who tweeted the quote.). In a separate context, speaking more generally of staff at NIH, "They hate you," a former Federal official told an audience of ME patients.

    M.E. patients and advocates face a human enemy in a high place who has demonstrated the combination of will to rule and disregard for ethics -- indeed, of human life -- that Stalin showed in acts like banishing Trotsky and killing an estimated 60 million of his own citizens dead in purges and terrors.

    Today people regularly recognize and mourn the six million Jews Hitler killed in the Holocaust, the five million Ukrainians Stalin starved to death in the Holodomyr, and more than one million Armenians who Ataturk's forces massacred.

    Yet individuals at the CDC, NIH and FDA, and also Britain's NHS (National Health Service) go on pursuing policies that deprive of life more than 17 million persons world-wide, including at least one million Americans and 250,000 in the U.K.

    This is no accident. There is real force and drive behind it. For more than a generation now powerful health officials have turned their back on Hippocrates. Instead, men and women blessed with power and authority applied these gifts perversely. Like fallen angels, they used -- and still use -- their influence to silence and cast out the scientists and other experts whose honest work could have reinstated health and productive life for these millions. The vast majority of this 17 million live too disabled and weakened by mitochondrial failure, immune deficiency and neurological impairment to work or attend school, and face early death. Several million exist in near-total helplessness, often with constant pain.

    The officials of CDC, NIH, FDA, and NHS could have chosen to restore these people; instead they pour out propaganda year-round to obscure responsibility for these tragic losses:

    The highest official spouts routine lines of total refusal to help, presuming that America's legislators and journalists are too ignorant of research to see through them. They cannot provide resources because -- blah, blah, blah. He will not help scientists research M.E. because, he claims, they do not know enough; they do not know the etiology, what causes the disease. And why not? Because NIH says so. Because CDC says so. Their officials simply refuse to recognize the causation documented in papers.

    M.E. patients cannot have drugs approved because, in one case, the increase in exercise ability was not big enough to impress FDA. In other words, the patients are too weak to show an improvement big enough to impress FDA. There is such a thing as being too pathetic to deserve FDA's help, or one is crossing the interests of powerful people.

    The big chief says they he will not give money because there are not enough people currently doing research. But how can people be doing reseaarch when it has been made clear for a generation that almost all biomedical research applications will be turned down.

    The big chief and other chiefs say there are not biomarkers because they reject the research showing biomarkers on grounds that a trial population is too small, or the trial has not been replicated. Yet the NIH chiefs will not allow money to be allotted to replicating, or holding bigger trials.

    NIH, CDC, FDA and NHS all seem to have been invented by the late Joseph Heller, author of "Catch 22."

    The other half of HSS' war against people with M.E. played out in 2013 - 2015 with two extensive and expensive compilations of bovine fecal matter that cost at least $3 million of US taxpayers' hard-earned money. As is well known, NIH and/or its contractors recruited groups of medical professionals, the majority knowing little or nothing about M.E., and diverted them from their normal productive work. Once grouped into either AHRQ's P2P or the Institute of Medicine's (IOM) ME/CFS committee these people were steered via NIH influence towards conclusions that would help to achieve NIH objectives; burying M.E. in a fogbank of disinformation, preventing scientific work on ME, and discouraging application of reason.

    To tilt the verdicts and recommendations from these groups NIH skewed the bibliographical inputs: the PACE trial was in, even though it is widely known that its director had had to move the goal posts midway through in order to produce results even slightly favorable to the cognitive behavioral and graded exercise therapies which support NIH's 30 year campaign to characterize the disease as psychological. Forty years of painstaking observations by British clinicians, including the foundational investigator Melvyn Ramsay, was out. That the results showed some common sense despite the skewing reflects considerable intelligence and dedication on the part of at least some of the captive professionals on the committees. Notably, the P2P panel that declared the Oxford Definition not fit for use. But decisions like the IOM ruling out the disease's obvious encephalitic component, even after discussing cognitive dysfunction and other effects, suggest the fix was in.

    And indeed it was. At last, someone from IOM spilled the beans. Malcolm Hooper reported at Invest in ME May 29th that he had been told by a participant that the IOM had been instructed to get rid of Myalgic Encephalomyeltis. At least, my ears think that is what I heard. Could it be? No wonder it is so hard for advocates to get near anything to do with the contract.

    This is the reality dedicated advocates such Sasha face.

    I want to get across that to project power as advocates it is crucial to speak in voices that are clear about the subjects, verbs, objects and modifiers under discussion. If we do not state out loud or in writing who is doing what and to whom -- that people in the Federal Government are choosing to prevent scientific work on ME and have been for years -- we end up repeating the gobbledygook that Federal bureaucrats such as NIH Director Francis Collins use to mis-explain and mis-excuse the lack of funding and attention to the expensive and deadly disease M.E.

    Above all, REJECT THE PASSIVE VOICE. We have to tell the truth. That we are sickening and dying is not the whole truth. Powerful people at NIH, CDC and FDA ARE KILLING US and such people have been contributing to our untimely deaths for 30 years.
     
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  17. Nielk

    Nielk

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    Sasha - you opened up that topic yourself with your post #6. There was no need to bring the issue of IOM/SEID or CCC/ME to this thread...yet, you did.
     
    Last edited by a moderator: Jun 12, 2015
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  18. Sasha

    Sasha Fine, thank you

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    Yes, I did.

    I think there was, out of consideration for people's time and energy. You said:

    You didn't mention that that letter asks not only for $250m but for ME/CCC to be adopted. In order to find out that that's the case, someone here on the forum would have to click through to that link, read that first page that doesn't say what the letter asks for, and click through to another page and read some more text -- over 420 words, by this point -- before it becomes clear that there's also this ME/CCC element.
     
    Last edited by a moderator: Jun 12, 2015
  19. Nielk

    Nielk

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    I didn't mention all that just because I didn't want to highjack this thread with the IOM/CCC debate. You did mention it so now it is open for others to post as well.
     
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  20. Nielk

    Nielk

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    No one should sign a petition which they cannot read.
     
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