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USA: News from #MEAction

Discussion in 'News from Organisations' started by Trish, Mar 18, 2021.

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  1. Trish

    Trish Moderator Staff Member

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    From an email:

    #MEAction to Hold Press Conference on ME & long COVID!

    #MEAction is thrilled to announce that we are hosting a press conference next Thursday, March 25th to educate the media about how myalgic encephalomyelitis (ME) fits into the long COVID picture. We are sounding the alarm across the media that post-viral diseases are not new, a body of research already exists, and the need to invest in researching ME/CFS is critical and urgent.

    We are bringing together a panel of experts who have dedicated their careers to understanding post-viral illnesses like ME, and are in a unique position to speak to the research needed to make sense of some of the questions around long COVID. The panel will also feature a person with long COVID and a person with ME who will share their experiences of getting a virus and never recovering.

    [​IMG]
    Long haulers are overwhelmingly reporting symptoms that resemble ME/CFS at six months, and researchers are expecting the number of people with ME/CFS to more than double during the pandemic, which follows the pattern of past viral outbreaks. Dr. Anthony Fauci has warned repeatedly of the risk for COVID-19 patients to develop ME/CFS.

    Our panel will feature NIH Senior Investigator, Dr. Avindra Nath, MD, who will discuss his intramural studies on both ME/CFS and long COVID; Dr. Lucinda Bateman, MD, who will discuss how 'long haulers' are presenting with symptoms that resemble ME; and Dr. Anthony Komaroff, MD, who will speak to the history of past viral outbreaks that have led to chronic illnesses like ME, and estimates for how many long haulers will meet the criteria for ME. A 'long hauler' and nurse with ME symptoms, Jen M, and person with ME and disabled nurse, Ashanti Daniels, will also join the panel to share their experiences.

    Educating the Press Every. Single. Day.

    Our press conference is a continuation of the year-long work that #MEAction has done day-in and day-out to educate the media about how post-viral illnesses like ME have already devastated millions prior to the pandemic, the need to recognize long haulers who are now developing ME, and the great urgency for researching ME.

    To date, #MEAction has contacted more than 800 journalists reporting on long COVID, and we’ve made an impact on stories reported in The Atlantic, Time, The Guardian, Daily Mail, Scottish Sunday Express, Washington Post, New York Times, Kaiser Health News, US News & Report, Medscape, Vox, Scary Mommy and Bustle.

    Now, is a unique and crucial time for the world to pay attention to ME in the wake of long COVID, and for our governments to take major strides to find answers to this devastating disease.

    Stay tuned for more details about the press conference!

    In solidarity,

    Adriane Tillman
    #MEAction Editor
     
  2. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Yessica, cfsandmore, Trish and 2 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Sounds like great attendance!
     
    Yessica, Mij, ahimsa and 11 others like this.
  4. Forbin

    Forbin Senior Member (Voting Rights)

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    Highlight video can be found here:



    Full video here:

     
    Yessica, Hutan, Sean and 1 other person like this.
  5. Forbin

    Forbin Senior Member (Voting Rights)

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    Dr. Nath talks about "restricted viral replication" here. If I understood him correctly, sometimes following a viral infection, whole viruses may have been eliminated, but fragmentary viral sequences remaining in some cells may still be able to use the cell's machinery to create copies of themselves (yet they cannot replicate the whole virus). These fragments can find their way into other nearby cells and continue the process. The immune system may eventually react to the presence of all these viral fragments.

    Dr. Komaroff then mentions a new study just published in Nature that shows that viral fragments of Covid-19 are indeed able to replicate in the gut and suggests that if this kind of process were to occur in the brain it could result in a "low grade inflammation" there, which he believes may underlie the symptoms of ME/CFS [if I got that right].

    Related to this, Dr. Komaroff suggests that the administration of a vaccine may eventually result in the immune system seeking to dampen down its initial response and that this may be why some people with Long covid (and ME/CFS) might feel a temporary sense of improvement following a vaccination (as immune activity is being constrained for a time).
     
    Last edited: Mar 30, 2021
    Lidia Thompson, Perrier, Wyva and 6 others like this.
  6. Trish

    Trish Moderator Staff Member

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    A Letter From Jennifer Brea: Meet Our New Executive Director!

    https://www.meaction.net/2021/04/14...director/?mc_cid=d33c10affe&mc_eid=83ddbd3a71

    Quote:

    "Last November, I announced that I was stepping down as Executive Director of #MEAction to focus on my health and well-being. Since then, our entire Board of Directors, including myself and #MEAction co-founder Beth Mazur, have led a wide search for the right person to lead #MEAction into the future and grow our community’s capacity to fight for recognition, education, and research

    I am thrilled to share that we have found that passionate, committed, experienced leader … I would like to introduce you to #MEAction’s new Executive Director, Julia Miele.

    For the majority of her career, Julia has been committed to public health and advocacy. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much.

    Julia brings to us 20 years of experience in the nonprofit sector. Most recently, she led The Gabriella Foundation, an arts organization that transforms lives and communities through the power of high-quality dance education in low-income areas of Los Angeles. Prior to that, Julia served as Executive Director of the YWCA Santa Monica / Westside. At the YWCA, Julia spearheaded organizational efforts to become a respected convener of programs and partners working to empower women, girls, and families at every life stage and turning point."

    More at link.
     
  7. Wyva

    Wyva Senior Member (Voting Rights)

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    #MEAction Urges Congress To Hold NIH Accountable

    "MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID.

    Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to hold the NIH accountable for prioritizing and accelerating ME/CFS research as part of its $1.15 billion Long COVID (PASC) research initiative, including expediting clinical treatment trials of repurposed drugs used in treating ME/CFS.

    (We also wrote the NIH to inform them of our request for additional oversight from Congress.)

    (...)

    The NIH needs to act urgently and aggressively to leverage both research and clinical learnings about ME/CFS in order to accelerate delivery of treatments for Long COVID patients – and everyone suffering from ME/CFS. But, NIH Director Francis Collins’ testimony at the hearing – and the recently updated NIH-Wide Strategic Plan for COVID-19 Research – show significant gaps in addressing these issues. "

    More: https://www.meaction.net/2021/05/21/meaction-urges-congress-to-hold-nih-accountable/
     
  8. mango

    mango Senior Member (Voting Rights)

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    "Severe ME Artists Project

    #MEAction is excited to announce our Severe ME Artists Project! This project will be an opportunity for those with severe ME to showcase their artwork with multiple ways to participate.

    The Severe ME Artists Project will feature a video compilation and online gallery of written work. The video and online gallery will be shared with the community around Severe ME Day--August 8th. Our goal is for people to be able to watch the video and read through the gallery when it is best for them.

    To participate in the project, please read the details in the article here."

    https://www.meaction.net/2021/07/12/severe-me-artists-project/
     
    MEMarge, Yessica, Alis and 2 others like this.
  9. 5vforest

    5vforest Senior Member (Voting Rights)

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    I will leave this here...





     
    Dakota15, ahimsa, Alis and 2 others like this.
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Are things taking a wrong turn at CDC?

     
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  11. Trish

    Trish Moderator Staff Member

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    As far as I know this is the evidence review that was published a couple of months ago and which they have invited comments on. It's a research review, not a guideline, and they have said they will not be using it to develop a new guideline as there is no new treatment research that would change the current guideline. We have threads on it here:
    https://www.s4me.info/forums/2021-usa-cdc-me-cfs-diagnosis-and-treatment-review.170/
     
    Ariel, Hutan, Starlight and 8 others like this.
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Thank you @Trish I have not been following this, but will try to catch up.
     
    Hutan, MEMarge, ahimsa and 4 others like this.
  13. mango

    mango Senior Member (Voting Rights)

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  14. ahimsa

    ahimsa Senior Member (Voting Rights)

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    #MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

    https://www.meaction.net/2021/08/23/meaction-6-me-orgs-call-for-cdc-to-change-how-it-tracks-me-cfs/

     
    Hutan, shak8, Peter Trewhitt and 5 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    Last edited: Aug 24, 2021
    Trish and Peter Trewhitt like this.
  16. ahimsa

    ahimsa Senior Member (Voting Rights)

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    #MEAction has announced an official membership program.

    Announcement on twitter (with a short video):
    Code:
    https://twitter.com/MEActNet/status/1435634990717538312
    More details on website:
    Membership starts at $5 a month. Free membership is also available to those who can't make a financial contribution:
     
    Simbindi, Amw66 and Peter Trewhitt like this.

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