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Phoenix Rising supports the Millions Missing global day of protest

Discussion in 'Phoenix Rising Articles' started by Mark, May 10, 2016.

  1. Mark

    Mark Former CEO

    Sofa, UK
    Mark submitted a new blog post:

    Phoenix Rising supports the Millions Missing global day of protest

    Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …


    Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”

    The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.

    Protests will also take place on the same day in London, UK and Melbourne, Australia, with a Canada-wide online protest. Organisers are still sought for US locations with other HHS offices (New York, Philadelphia, Chicago, Kansas City, and Denver).

    This is the first time that the ME/CFS community has taken part in a multi-city campaign. Patients too sick to attend can take part virtually, including by sending their shoes to represent themselves at the protest.

    A list of demands will be presented to each country’s government health department protesting the lack of government funding for research, clinical trials and medical and public education on ME/CFS.

    Phoenix Rising is proud to support the aims of the protest. The demands of the US protestors are:

    1. Increased funding and program investments
    Funding and program investments commensurate with the disease burden.

    2. Clinical trials
    Clinical trials to secure medical treatments for ME/CFS.

    3. Accurate medical education
    Replacement of misinformation with accurate medical education and clinical guidelines.

    4. A serious commitment
    HHS leadership, oversight and a serious commitment to urgently address ME/CFS.

    Further details of the demands and their rationale can be found here.

    The action marks a year since #MEAction was established by documentary-maker Jen Brea with other ME/CFS patients, during which it has grown into a major force in the community.

    The past year has been one of extraordinary change and promise for ME/CFS and the time feels right for patients to push hard at doors that may already be partly open. We wish the protest every success.

    Join in!

    Support Phoenix Rising

    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. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    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.


    Continue reading the Original Blog Post
  2. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    Thanks so much, Mark! We're so excited by everyone who's posting today! :D
  3. Rrrr

    Rrrr Senior Member

    Very exciting to see this protest grow from one city to now seven!
  4. concepcion

    concepcion Senior Member

    #Millions Missing: Canada – virtual


    Canadian #MillionsMissing Event: Virtual March on Ottawa!

    (en français ci-dessous)

    What: #MillionsMissing Protest for ME/CFS: Virtual March on Ottawa
    Why: Urgent Need to Increase ME/CFS Research Funding
    Where: Online Across Canada
    When: May 25th, 2016, 11 a.m. -12 p.m. PST (see below for regional times)
    Regional Protest times:
    Newfoundland Time: 3:30 p.m. – 4:30 p.m.
    Atlantic Time: 3 p.m. – 4 p.m.
    Eastern Time: 2 p.m. – 3 p.m.
    Central Time: 1 p.m. – 2 p.m.
    Mountain Time: 12 p.m. – 1 p.m.
    Pacific Time: 11a.m. to 12 p.m.

    Lack of research into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has led to lack of treatments and lack of understanding of this devastating and disabling disease. For the 2016-2017 year, the Canadian Institutes of Health Research (CIHR) have invested $0.11 per ME/CFS patient in Canada, for a grand total of $45,000 in funding. By comparison, MS (Multiple Sclerosis), a similarly disabling chronic disease, is receiving funding of $54.11 per patient, for a grand total of $5,870,426. That’s close to 500 times less funding per patient for ME/CFS, a disease about which very little is known; a disease for which there are no treatments; a disease that leaves #MillionsMissing from their previously full lives.

    Join us in blasting emails to MPs across Canada to call for:
    • An end to discrimination by successive Canadian governments that has led to #MillionsMissing in research funding for ME/CFS
    • Immediate research funding commitments for ME/CFS equal to those of other disabling and life-destroying diseases
    • Equality for the hundreds of thousands of Canadian citizens with ME/CFS who are missing in action
    How much effort is involved?

    We will provide you with everything to make your participation as easy and fast as possible: a pre-prepared email to send to MPs; a list of all the MP email addresses; instructions for how and when to prepare and send your email.

    Sign up to be kept up-to-date on this campaign and to receive instructions for the email blast:
    Send an email with the subject line “Sign me up for #MillionsMissing – Canada” to:

    Or join and share the event with your social network via Facebook: RSVP – Facebook -

    Other Ways to Participate

    Other ways to help our campaign and the global #MillionsMissing protests:

    Version Français
    (A Noter: Nous avons encore besoin d’aide avec la traduction. Veuillez nous contacter:

    Evenement Canadien #desMillionsManques: Manifestation Virtuel

    Quoi ? La manifestation #MillionsMissing pour l’EM/SFC
    Pourquoi ? Besoin urgents d’augmenter le financement pour la recherche sur l’EM/SFC
    Où ? Sur l’Internet
    Quand ? Le 25 mai 2016, de 11h00 à12h00 HNP (voir les horaires régionaux ci-dessous)

    Le manque de recherche sur l’EM/SFC (L’encéphalomyélite myalgique/syndrome de fatigue chronique) a entrainé une absence de traitement et un manque de compréhension par rapport à cette maladie dévastatrice et invalidante. Pour l’année 2016-2017, par exemple, les Instituts de recherche en santé du Canada (IRSC) ont investi 0,11 $ par patient, pour un financement total de 45 000 $. En comparaison, la sclérose en plaque, une maladie entrainant une invalidité semblable, reçoit en moyenne 54,11 $ par patient, pour un financement total de 5 870 426 $ annuellement. Ça fait presque 500 fois la somme allouée par patient qui souffre d’EM/SFC, une maladie que l’on connait encore très peu, une maladie pour laquelle il n’y a aucun traitement, une maladie qui empêche à des millions de personnes de vivre pleinement.

    Nous vous invitons de nous rejoindre afin d’inonder nos députés canadiens de courriels, dans le but de demander :

    1. La fin de la discrimination menée par les gouvernements canadiens successifs qui a entrainé un tel manque de financement pour la recherche sur l’EM/SFC
    2. Un engagement concret et immédiat en ce qui concerne l’allocation de financement pour l’EM/SFC et ce dans les mêmes proportions que ce qui est attribué aux maladies comparables
    3. L’égalité de traitement pour les centaines de milliers de citoyen(ne)s canadien(ne)s qui vivent avec l’EM/SFC et qui par conséquent ne peuvent plus participer pleinement à la société

    Pour participer et afin de rester informé du progrès de notre campagne:

    Veuillez nous envoyer un courriel ayant comme objet “m’inscrire à #desMillionsManquent — Canada” à l’adresse suivante :

    Ou veuillez nous rejoindre et partager notre évenement avec vos amis chez Facebook:
    panckage and Comet like this.
  5. marygelpi


    Hey friends,
    Just wanted you all to know, you can also SIGN THE PETITION which has gained traction and will be presented to congress members and to the head of NIH and Secretary of Health and Human Services and asks for major increase in ME/CFS research funds. It's at 31,000 signatures now, but trying hard to get to 35 by Thursdsy! People outside of the US can sign, so please, sign and share with any and everyone. Its also a great way for people who are too sick to attend the protest to have their voices heard in this fight. So please please, sign and share with anyone who would have interest or would want to support you or this cause. Here is the link, merci beaucoup! Sante! :)
    Sasha and Jennifer J like this.
  6. lnester7

    lnester7 Seven

    All users ----------------> Please change your Facebook picture to some shoes in your driveway that day!!!!
  7. marygelpi


    Hey Cort, Mark, and Everyone..
    My original comment accidentally got buried inside of another post. I'm glad to see yall supporting the ME Action Group Efforts. I just wanted to make sure everyone who reads this also knows they can sign the petition, which a few of us are working on printing out ALL the signatures and having them to present to state representatives. Right now we are nearing 32,000, which is great, but I think we can do better and there are many people who still haven't seen it. The bigger this number, the more pressure applied to these agencies as well. I've been working with Mary Dimmock from ME Action, and she said when the signatures are dumped onto a page layout in order to print them out, the signatures were 1,500 pages long! That's awesome. We are also printing the comments left on the petition page, which are so telling. So please, sign and's not too late and this is still a "Power in Numbers" game. If we make enough noise, there's no way we can't achieve this change. Thank you all for your hard work, Mary

    p.s. anyone around the world can sign, you don't have to live in the US, just need an address. ok, sign away!
    concepcion and Mark like this.
  8. RUkiddingME

    RUkiddingME Senior Member

    Everyone please place this overlay over your Facebook profile picture today

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