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 USA: The RECOVER Initiative - Long Covid research 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
News on Long Covid on this thread: USA: The White House: Memorandum on Addressing the Long-Term Effects of COVID-19
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.
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:
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.
I think "myalgic encephalomyelitis and chronic fatigue syndrome" is most likely a typo by someone with incomplete knowledge of naming conventions.
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.
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’.
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.
United States: Government Memorandum on Addressing the Long-Term Effects of COVID-19 https://www.s4me.info/threads/unite...sing-the-long-term-effects-of-covid-19.28950/
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.
“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
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/
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"
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]”
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.
Merged thread Rep. Jamie Raskin announces he has ‘serious but curable form of cancer’ USA Ugh Jamie Raskin has been a long time supporter of MECFS causes https://www.cnn.com/2022/12/28/politics/jamie-raskin-cancer/index.html E.g. https://raskin.house.gov/2020/6/raskin-introduces-legislation-address-america-s-hidden-health-crisis
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.
Some posts have been moved to: USA university 'investigating the associations between psychiatric internalizing disorders and functional disorders [CFS, FM, IBS]', 2022
