Would Dr. Patrick Soon-Shiong's drug Anktiva, already approved for 1 kind of bladder cancer, work 4 ME? Anktiva boosts NK cell number & function. It's in trials now 4 long Covid & many cancers. Most ME patients have low & dysfunctional Natural Killer (NK) cells, which kill viruses & cancers. For 40 years, CDC & NIH paid no attention to this fact. Some ME patients I interviewed developed cancer, especially blood cancers like the rare mantle-cell lymphoma, an aggressive, non-Hodgkin B-cell lymphoma. Patients w mantle-cell lymphoma often show reduced NK cell # & function. Lower NK levels = worse prognosis. Every ME patient I've interviewed who's been tested had low/dysfunctional NK levels. Many people w chronic enterovirus infections have low or dysfunctional NK cells too. And enteroviruses have been linked to ME. (See the work of Dr. John Chia, ID doc at Enterovirus Medical Research Center, in California & @DrMaureenHanson at Cornell.) Evaluating NK cells at the beginning & end of a study could be an excellent marker to evaluate the success of a treatment. As opposed to the few ME drug trials, in which researchers looked only at "fatigue"--even though they *knew* ME patients had low NK cells numbers & function. They ignored what was staring them in the face. So did CDC. Instead of connecting low NK cells to severe ME symptoms, CDC spent much of its puny budget cold-calling people who weren't sick, trying to convince them they had ME because they were "tired." As a result, many w bona fide ME have died, or spend their lives waiting to live, or end their lives. Treatments for ME, including Anktiva, are detailed in my new book, "Shots In The Dark: An Investigation Into Covid Vaccines, Long Covid and ME/CFS." On Amazon, worldwide: amazon.com/Shots-Dark-Invest… Buying my book supports my reporting on ME, long Covid & long vax. @DrPatrick #MECFS @thesicktimes @AimImmuno @MECFSNews @polybioRF @StenHelmfrid @AliceOutThere @Rivkatweets @GabbyKlein1 @davidtuller1 @EricaVerrillo @MEAssociation @IrishMECFSAssoc @TomKindlon @PlzSolveCFS @covidmecfshelp1 @imMEurMEweallME @MMissingGermany @LongCovidAdvoc @CovidCastaways @polybioRF @chrisca70578779 @CornellMECFS @ABrokenBattery @MECentraal @MEActNetUK @DrMaureenHanson @twoShaws @useless_priest @FStevenChalmers @JanetDafoe @MEActNet @oslersweb #MECFS @MEActionNetwork @MEActNetUK @me_awareness @MMissingGermany @LongCovidAdvoc @mhornig @MassMECFS @useless_priest @MillionsMissin2 @MyhillNews @JKBurmeister @paulthedaid @DafoeWhitney

アメリカの団体 #MEActionNetwork　は、 ME/CFS、Long COVID、その他の障害者コミュニティとして、5月12日午後12時～2時（米国東部時間）ワシントンDCの国会議事堂に隣接するアッパー・セネート・パークで抗議活動を行い、議会にSOSを送ります。その様子はライブ中継するのでどなたでも視聴できます。

🆘#SaveOurScience 🆘 #MEActionNetwork #MillionsMissing #MECFS #LongCovid #LongCovidKids #MEAwarenessDay #MEAwarenessMonth @NIHDirector_Jay @RobertKennedyJr @DrMakaryFDA @DrOzCMS

To my fellow CPPs, Zebras, and Spoonies: Please join me in supporting the #MEActionNetwork by signing and sharing their petition to demand that the NIH fund the ME/CSF Roadmap. This community is ridiculously undersupported, underfunded, and underresearched and needs our support!

Congratulations @owasow 👏🏼🎉 MEActionNetwork we pwME are lucky to have him on the board!

@RobWust - @jenbrea a pwME, cofounder of MEActionNetwork maker of @unrestfilm is looking for some latest information about CCI in people with MECFS, LongCovid and MCAS - she's been through surgery for it- looking to catch up on the latest. Thought you might be able to help.

Daniel Dugger keeps telling pwME and MEActionNetwork that patients deaths are on them - what does he do!? He keeps a day job, hasn't started a nonprofit, hasn't organized, hasn't formed advocacy groups hasn't gotten a Congress hearing. Just wants to 💩 on pwME.

Thread 🧵👇 Could someone let us know what the current edition says please? @MEAssociation @ActionforME @MEActionNetwork #MEcfs #pwME #MyalgicEncephalomyelitis #LongCovid #MedEd #MedTwitter

without gaslighting and causing further trauma. What would you want clinicians to know? What has been helpful for you and what has NOT been helpful? Thank you for your input. #MECFS #LongCOVID #MEActionNetwork

They are brutal to you. This is brutal. Have you watched the #MEActionNetwork post demonstration podcast? I can't find it right now so to link. There are women of color educating me and so so so smart about organized efforts. All in podcast are all so polished and funded as well.

#MEAwarenessHour Become a part of @movie_about_ME! Tell your story, work on the crew, become a sponsor or producer! Simply complete the contact form in the link below. movieaboutme.com/join-me #MECFS #MillionsMissing #Covid19 #LongCovid #MEActionNetwork #movieaboutME

Become a part of the movie! Tell your story, work on the crew, become a sponsor. Simply complete the contact form in the link below. movieaboutme.com/join-me #MECFS #ChronicFatigue #MillionsMissing #Covid19 #LongCovid #MEAction #MEActionNetwork #movieaboutME #pwME

Become a part of the movie! Tell your story, work on the crew, become a sponsor. Simply complete the contact form in the link below. Hastags... #MECFS #ChronicFatigue #MillionsMissing #Covid19 #LongCovid #MEAction #MEActionNetwork #movieaboutME movieaboutme.com/join-me

The epic and masterful @AlizaPearl is the GM for meactionnetwork 1st D&D debut on Twitch! twitch.tv/meactionnetwork?sr…

#pwME #meawarenesshour #MEActionNetwork

Can anyone tell me if there is a local #MEActionNetwork or similar in Spain. Any options? Also help fundraising for #openmedicinefoundation. #MECFS #pwME #NEISvoid #activismSpain #MillionsMissing

New online survey researching into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is available to complete from the link below: cardiffmet.eu.qualtrics.com/… Thank you to #MEActionNetwork @MEActNet for spreading the word about this survey! #CFS #ME #ChronicFatigueSyndrome

A wonderful initiative. Thank you #MeActionNetwork! I've written 'Higher Maintenance' in 2016, a simple memoir/self-helpful story for patients, family and friends. Please visit: mariannegranger.com and learn how to become a #DragonTamer ;)

#ME RESEARCH SUMMARY 2019 Revised and compiled by the extraordinary @exceedhergrasp1 of #MEActionNetwork Please #PwME and carers share widely w/ MDs and support @MEActNet w/ a donation, if you can meaction.net/wp-content/uplo…

#MEactionNetwork verzorgt vandaag live tweets van de Accelerating Research on ME/CFS conferentie. Zijn jullie er allemaal klaar voor?