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News from the USA, United States of America

Discussion in 'Regional news' started by Andy, Jun 1, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    A thread for news from the US that isn't covered by other threads such as (in no particular order)
    USA: News from the Workwell Foundation.
    USA: News from Solve ME
    USA: NIH National Institutes of Health
    USA: News from #MEAction


    Starting with
    "On May 20, 2021, a bill was passed in NY calling for the addition of #MECFS in Public Health Law and aims to provide education and outreach programs for those working with #pwme. Huge thank you to Richard Gottfried and Senator Rivera for their efforts in helping to increase #MECFSawareness
    https://www.nysenate.gov/legislation/bills/2021/A7712..."

    Code:
    https://www.facebook.com/CfSforMECFS/posts/1104083986783691
     
    cassava7, ahimsa, cfsandmore and 20 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
  3. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA

    Biden–Harris Administration Releases Two New Reports on Long COVID to Support Patients and Further Research

    https://www.hhs.gov/about/news/2022...-covid-support-patients-further-research.html
    Link to PDF for Services and Supports for Longer-Term Impacts of COVID-19 = https://www.covid.gov/assets/files/...-Longer-Term-Impacts-of-COVID-19-08012022.pdf

    Link to PDF for National Research Action Plan on Long COVID =
    https://www.covid.gov/assets/files/National-Research-Action-Plan-on-Long-COVID-08012022.pdf

    I have not read either of these PDFs yet, but a quick search found references to ME/CFS in both documents.
     
    Fizzlou, shak8, Lilas and 6 others like this.
  4. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    I just would like to draw some attention to the National Research Action Plan on Long COVID in @ahimsa's post, in case someone didn't click on the link. These are the parts about ME/CFS:


    From the chapter Summary of Partner Input:

    The text also mentions ongoing or planned LC studies in connection with ME/CFS.


    Then in the Research Priorities section:

     
    cassava7, rvallee, Lilas and 6 others like this.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    Thanks for posting those extracts, @Wyva!

    On a slight tangent, I noticed this phrase several times:
    I don't remember seeing ME/CFS written out with an and in the middle. I think it's usually just a slash, same as in the shortened version.

    I wonder whether phrasing it this way means anything or if it's just a trivial thing that's not important.
     
    Binkie4, Dolphin, Missense and 4 others like this.
  6. RedFox

    RedFox Senior Member (Voting Rights)

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    1,244
    Location:
    Pennsylvania
    I think "myalgic encephalomyelitis and chronic fatigue syndrome" is most likely a typo by someone with incomplete knowledge of naming conventions.
     
    ahimsa and Peter Trewhitt like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    It may not be. There are endless arguments about the name, with some patient groups adamant that ME and CFS are different. We have some very long threads here about it.
     
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    I have always interpreted ME/CFS as incorporating the maximum alternatives in order to include as many views as possible, or at least an attempt to exclude as few people as possible. I would have expanded it, if obliged to, ‘to ME and/or CFS’.
     
    ahimsa, Mij, Dolphin and 1 other person like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    The reason I was surprised by the "and" in the name is because this is a document from a US government organization. I've never seen this phrasing on either the CDC or NIH websites.

    I figured this document would use the same wording that's used by other government bodies.
     
    Binkie4, RedFox, Dolphin and 2 others like this.
  10. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    174
    Location:
    New England, USA
    Trish likes this.
  11. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    174
    Location:
    New England, USA
    https://www.politico.com/news/2022/08/08/long-covid-congress-kaine-00049921

    Tim Kaine has long Covid. That’s not moving Congress to act.
    While Kaine and other Democrats in the House and Senate are pushing for action, they have failed to gain meaningful momentum due to lack of GOP support.

     
    RedFox, ahimsa, Lilas and 1 other person like this.
  12. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    174
    Location:
    New England, USA
    “How Long?” For People with Long COVID, asks Powerful National Public Service Announcement

    https://www.healthrising.org/blog/2022/08/10/how-long-long-covid-psa/

    How Long Until We Solve Long Covid?

    https://solvecfs.org/solve-long-covid/

    https://www.youtube.com/watch?v=LttJPVUhph8





    Edited to add link. "How Long?" PSA starts with Andy's post #72.

    https://www.s4me.info/threads/usa-news-from-solve-me.19489/page-4
     
    Last edited: Aug 11, 2022
    RedFox, ahimsa, Forbin and 5 others like this.
  13. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    174
    Location:
    New England, USA
    Call it data liberation day: Patients can now access all their health records digitally


    https://www.statnews.com/2022/10/06/health-data-information-blocking-records/
     
  14. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    The Institute for Neuro-Immune Medicine at Nova Southeastern University, "a premier research and treatment center for ME/CFS, GWI and other related neuroimmune disorders", where Nancy Klimas is based is now offering

    cupping - "Cupping may look strange, but this pain-free treatment has been proven to regulate immune responses to inflammation & autoimmune disorders."
    and acupuncture - "Time for a most frequently asked question: Does acupuncture hurt? Generally, no, but it depends on the person. After all, they are needles, but they are hair-thin, so it feels “more like a mosquito bite”. #acupuncture #mecfs #painrelief #fatigue"
     
    Peter Trewhitt and Trish like this.
  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,858
    This is ridiculous and embarrassing.


    https://en.m.wikipedia.org/wiki/Cupping_therapy


    “Cupping has been characterized as a pseudoscience and its practice as quackery.[3][4]

    Alternative therapy
    Cupping practitioners attempt to use cupping therapy for a wide array of medical conditions including fevers, chronic low back pain, poor appetite, indigestion, high blood pressure, acne, atopic dermatitis, psoriasis, anemia, stroke rehabilitation, nasal congestion, infertility, and menstrual period cramping.[1][2]

    Despite the numerous ailments for which practitioners claim cupping therapy is useful, there is insufficient evidence it has any health benefits, and there are some risks of harm, especially from wet cupping and fire cupping.[1]Bruising and skin discoloration are among the adverse effects of cupping and are sometimes mistaken for child abuse.[2] In rare instances, the presence of these marks on children has led to legal action against parents who had their children receive cupping therapy.[2]
     
    cfsandmore, Lilas, shak8 and 3 others like this.
  16. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

    Messages:
    987
    I used to have cupping done on my back. It eased my pain by revving up circulation in that area. I've never heard of those other purported benefits. They sound doubtful.

    After my first session, I had a lot of discoloration on my back. It didn't hurt, but looked awful. I was careful not to undress around others in the gym dressing room until it went away. Subsequent sessions did not leave me discolored.

    Cupping was a good experience for me, but I get a similar effect at home by lying on a large acupressure mat.
     
    Binkie4, RedFox, Trish and 1 other person like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  18. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,858
    Last edited by a moderator: Dec 29, 2022
  19. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,107
    so incredibly sad as this is at the same time of year his son committed suicide just 2 years ago. He is a national treasure.
     
  20. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK

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