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

11193297_1598344087114658_1011865320453080262_nSasha gives you the tour and tells you what it’s all about…

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!

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{ 30 comments… add one }

  • *GG* June 9, 2015, 9:00 pm

    Cool, good to hear!

    GG

  • sarah darwins June 10, 2015, 1:27 am

    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.

  • Sasha June 10, 2015, 2:32 am

    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/

  • Nielk June 10, 2015, 8:19 am

    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.

  • Sasha June 10, 2015, 8:43 am
    Nielk

    -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.

    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

  • Nielk June 10, 2015, 9:11 am
    Sasha

    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 it in with other issues.

    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

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

    This is the letter from MEaction:

    Myalgic encephalomyelitis (often referred to as Chronic Fatigue Syndrome or ME/CFS) is a severe neurological disease that affects at least 1 million Americans and leaves half of its victims disabled and unable to work. Many patients are considered at a greater functional impairment than those with congestive heart failure, multiple sclerosis, and end-stage renal disease.

    The disease’s annual impact to the US economy is an estimated $24 billion in health care costs, lost wages, and lost productivity. However, at present the U.S. government does not have a research plan in place to mitigate this profound cost to society.

    Currently, the U.S. National Institutes of Health (NIH) funds only $5 million per year for research into this disease.

    As the only moral response to more than thirty years of official and medical neglect of this illness, we demand that Congress increase NIH research funding to $250 million per year, a level proportionate to the disease’s severity, prevalence and impact.

    We, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies, demand full and immediate funding equality for ME.

    This is the letter from MEadvocacy.org

    I am writing to you as a constituent and deeply concerned citizen. I need you to be my champion regarding the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME patients are too sick to advocate for themselves, and so this condition doesn’t have the widespread awareness that other severe diseases do. That’s why political action on ME patients’ behalf is vital.

    Specifically, I need your help to increase National Institutes of Health (NIH) funding, establish Department of Health and Human Services (HHS) nomenclature, and modify HHS diagnostic criteria for this horrific disease. An estimated one million Americans suffer from ME, a long-term disease that primarily targets young, previously healthy adults from diverse ethnic and socioeconomic backgrounds. The disease is so severe; it renders a quarter of its patients bedbound and unable to care for themselves. More than half are disabled and can’t work, attend school, or participate in daily life activities. ME patients do not spontaneously recover. ME patients are known to be “more functionally impaired than those with type 2 diabetes, congestive heart failure, [and] multiple sclerosis.”

    The Centers for Disease Control (CDC) estimates ME’s annual burden on the U.S. economy to be $17-24 billion. However, the NIH consistently places ME at the rock bottom of its budget, with barely $5 million/year. This is less than the NIH allocates for hay fever, and is nowhere near its allocation for other similarly burdensome diseases:

    2014 HHS/NIH funding U.S. patient population Funding per patient
    HIV/AIDS $2.9 billion 1,200,000 $2,481
    M.S. $102 million 400,000 $255
    Parkinson’s $139 million 1,000,000 $139
    ME $5 million 1,000,000 $5

    As a result, ME has no known cause, no FDA-approved treatment, and no cure. The lack of progress in ME research over the past 30 years is appalling, and is reflected in the absence of a standard of care for ME or even a knowledgeable response from most medical practitioners when encountering these patients and their families. Accordingly, I strongly urge you to direct the HHS to fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden.

    To move the science forward on ME, the disease also needs appropriate nomenclature and well-defined diagnostic criteria. Originally named Myalgic Encephalomyelitis (ME) in London in 1955, ME is known in the U.S. by the less scientific and more trivial name, Chronic Fatigue Syndrome (CFS). For this reason, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, patients, their advocates, and their families have long implored the HHS to adopt the disease’s historical name, Myalgic Encephalomyelitis, which more accurately refers to the disease’s infectious neuromuscular nature.

    This makes particular sense given that ME will appear in the 2015 U.S. ICD Codes as U.S. ICD-10-CM under the neurological category (G93.3), and it has been coded under the neurological disease code (G93.3) by the World Health Organization (WHO) since 1969. Similarly, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, ME patients, their advocates, and their families have entreated the HHS to strike its current, overly-broad ME diagnostic criteria in favor of the well-defined, globally-accepted Canadian Consensus Criteria (CCC), which was established in 2003 by a team of international ME medical experts. The International Association of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the field’s professional organization, has officially endorsed and adopted the CCC standards, as have at least 50 ME medical experts, almost 200 ME advocates, and more than 6,000 patients. The 2011 International Consensus Criteria (ICC) revision is also well-established and alternatively acceptable.

    In conclusion, as a deeply concerned citizen and your constituent, I strongly urge you to use your powers and direct the HHS to:
    1. Fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden;
    2. Adopt ME’s historical name, Myalgic Encephalomyelitis, and cease using Chronic Fatigue Syndrome; and
    3. Endorse the well-defined, globally-accepted Canadian Consensus Criteria (CCC) for U.S. ME diagnosis and research. By taking these three critical steps, you will eliminate the greatest obstacles to finding an ME cure and thereby significantly ease the enormous physical and economic burden of ME on millions of American patients and family members.

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

  • Sasha June 10, 2015, 9:32 am
    Nielk

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

    That's correct and I've edited my post to make that doubly clear.

  • Eddy Keuninckx June 10, 2015, 11:24 am

    Cool!

  • *GG* June 10, 2015, 12:05 pm

    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!

  • Marylib June 10, 2015, 2:05 pm
    Marylib

    Good idea to sign a petition not linked to any current case definition, until the ICC evolves and moves from a research definition to one that can be used widely. But I signed both I think, as it seems they state the same thing really.

    Here is a page from the CDC website in 2010 that says ME and CFS need a separate definition:
    "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

    The WHO code for myalgic encephalomyelitis still stands. In the USA this code is ICD9 323.9

    https://web.archive.org/web/20100928184236/http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

  • Sasha June 10, 2015, 2:11 pm

    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).

  • Marylib June 10, 2015, 2:20 pm

    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.

    Sasha

    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).

    Sasha

    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).

    Sasha

    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).

    Sasha

    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).

    Sasha

    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).

  • Marylib June 10, 2015, 2:21 pm
    Sasha

    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).

    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.

  • Sasha June 10, 2015, 2:32 pm
    Marylib

    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.

    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. :)

  • deboruth June 10, 2015, 4:31 pm

    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.

  • Nielk June 10, 2015, 4:32 pm
    Sasha

    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).
    .

    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.

  • Sasha June 10, 2015, 5:14 pm
    Nielk

    Sasha – you opened up that topic yourself with your post #6.

    Yes, I did.

    There was no need to bring the issue of IOM/SEID or CCC/ME to this thread

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

    Nielk

    […] you will find: […] -A congressional letter writing campaign with an easy one click app for $250 mil funding for ME. started by MEadvocacy.org.

    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.

  • Nielk June 10, 2015, 5:19 pm
    Sasha

    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.

    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.

  • Nielk June 10, 2015, 5:37 pm
    Sasha

    So do I, but it's not a question of intelligence. PWME don't have much energy and many with brainfog find it hard to read much. I think it's helpful to say concisely what a petition is about upfront, so that people who wouldn't want to sign it don't waste their energy.

    No one should sign a petition which they cannot read.

  • SOC June 10, 2015, 5:58 pm
    Nielk

    No one should sign a petition which they cannot read.

    Agreed. At the same time, I appreciate @Sasha giving us a heads up about what's in the petition so that I don't waste a load of energy reading a long petition I'm ultimately not going to sign.

    The important point is that there's lots of advocacy opportunities highlighted at #MEAction, so not only is there something for everyone, there's plenty for anyone, whatever their views on any number of topics in the realm of ME advocacy.

  • Nielk June 10, 2015, 6:12 pm
    SOC

    Agreed. At the same time, I appreciate @Sasha giving us a heads up about what's in the petition so that I don't waste a load of energy reading a long petition I'm ultimately not going to sign.

    The important point is that there's lots of advocacy opportunities highlighted at #MEAction, so not only is there something for everyone, there's plenty for anyone, whatever their views on any number of topics in the realm of ME advocacy.

    I agree that MEaction has something for everyone and is a great platform. They feature and promote ALL advocacy efforts in the community.
    You might not be interested in signing a petition that promotes funding as well as the name ME and ME criteria but there are many others that do.

  • SOC June 10, 2015, 6:19 pm
    Nielk

    You might not be interested in signing a petition that promotes funding as well as the name ME and ME criteria but there are many others that do.

    Certainly. That's exactly why I made a point of saying there's something for everyone there. For me, there's the MEAction funding petition without additional demands. For those who want to include the demand for a particular name and definition, there's the the MEAdvocacy petition. Perfect! Exactly what we need. :thumbsup:

    Let's move along. There's no problem here. Let's get back to focusing on the amazing mass advocacy platform #MEAction.

  • Sasha June 10, 2015, 6:43 pm
    SOC

    Let's get back to focusing on the amazing mass advocacy platform #MEAction.

    I'd love to know, at some point, how many people they've got signed up to their newsletter, or what sort of traffic they're getting.

    As a community, we need to be mobilising in the tens of thousands, and a high-profile, central point like this has the potential to do that.

  • searcher June 26, 2015, 4:06 pm

    Hi @Sasha
    I have been helping with the site, and these are some stats you may find interesting:

    1. We had roughly 2,000 users last month, 25% of whom went straight to the petition page.

    2. We have 145 members on the site right now. Note that these are people who explicitly set up an account on meaction.net, which is not required for signing petitions.

    3. As of last night we have 2295 petition signatures! There have been 784 on the US petitions and 1511 on the global petition.

    We are working on improving the UI (user interface) for the site so it will be easier for patients to get involved and take action.

  • Sasha June 26, 2015, 4:14 pm

    Thanks, @searcher – those are great numbers. Good to see so much involvement early on and I hope it will keep growing.

    I'm finding the Facebook page a great way to keep up with the news from #MEAction:

    https://www.facebook.com/MEActNet?fref=ts

  • JenB August 2, 2015, 7:49 pm

    Hi Sasha,

    I just wanted to thank you very belatedly for this very generous (if not a little blush-inducing) post. I unfortunately crashed pretty hard after the launch (for mostly unrelated reasons).

    I am so grateful for the faith that you and so many have in the work we are doing. We are trying hard, that's for sure, and hope that #MEAction can become a space to inspire and support all of our efforts to fight for a better future.

    Jen

  • Sasha August 3, 2015, 2:32 am
    JenB

    Hi Sasha,

    I just wanted to thank you very belatedly for this very generous (if not a little blush-inducing) post. I unfortunately crashed pretty hard after the launch (for mostly unrelated reasons).

    I am so grateful for the faith that you and so many have in the work we are doing. We are trying hard, that's for sure, and hope that #MEAction can become a space to inspire and support all of our efforts to fight for a better future.

    Jen

    Thanks, Jen! It's a superb venture, absolutely brilliant. I hope it goes from strength to strength!

    Sorry to hear you crashed – this illness is such a tough one.

  • beaker August 3, 2015, 3:02 am

    I read this article and went to "like" it and found I already had. I have no memory of previously reading it.

    At least I liked it both times I read it !

    I think it's great to have a central clearing house for advocacy.

  • Sasha August 3, 2015, 3:05 am
    beaker

    I read this article and went to "like" it and found I already had. I have no memory of previously reading it.

    At least I liked it both times I read it !

    :thumbsup:

    Glad it's not just me who does that.

    I think it's great to have a central clearing house for advocacy.

    It's crucial that we have one – we want everyone forming a huge crowd in the one spot rather than being scattered over the internet.

    As Jen says, strength in numbers!

  • Seanko September 1, 2015, 8:14 am

    Jen has already done some fantastic work with the #MEAction team. The CDC funding error has been picked up & acted on.

    Shows along with the excellent work of Jenny Spotilla how ME/CFS should be done. The initiatives are something which we can all take part in. :)