Centralperk

@scott_scientist @JackHadfield14 @IsabelC18904528 This is a really important point thread. The orgs should be doing campaigns to rally the mild and healthy allies to fight for the cause. And working together which they hate to do (partially bc some of them are difficult to work with).

@JackHadfield14 @IsabelC18904528 I tried to get MEAction to do this years ago, before COVID was even around. They refused. They said they believed their letter writing campaign (which was unsuccessful for decades) was bound to work and they wanted to keep at it instead.

HIV activists ACT UP seized the FDA. They dumped patients ashes on the White House lawn. They marched coffins through DC. And it worked. Long Covid patients are being told to wait politely. Polite has never moved the world on a health crisis.

@JasonS1269 @JackHadfield14 Plenty of mild people who could be advocating and ironically, disappear. The groups do not creat campaigns to rally the mild and healthy allies for the cause

@JackHadfield14 We are too sick. Many with HIV had five to ten years until they got sick. We cannot take to the streets. This is the problem. You must be new here.

@JackHadfield14 @kania_felix This!!!!! Why aren’t the orgs organizing the milder patients?! They get mild and then disappear, ironically

@kania_felix For sure. The fact that those hit hardest are now too severe to go out and protest is a huge issue. You’d hope the orgs could mobilize milder patients, carers, and healthy allies to pull off something actually disruptive. But it just isn’t happening.

@JackHadfield14 LONG COVID PATIENTS ARE DYING

Long Covid has millions of disabled people, no approved treatments, and shrinking research budgets. Patients are writing polite emails to agencies that aren’t reading them. The lesson of the AIDS movement is that nothing changed until grief became visible. We should be studying that history right now.

@GrandeBettina These summaries are unbelievably helpful and hopeful for very sick patients who can’t process much. Thank you so much!

Die International ME/CFS Conference ist eröffnet! „speakers and chairs - 10 countries 54 scientific posters - 9 countries 273 participants on site- 17 countr. 6,000+ participants online - 55 countries“ #MECFS #PEM #Berlin events.mecfs-research.org/en/events/conf…

@KevinMcCairnPhD @MaryBowdenMD @DoctorTro @CharlesRixey How many patients thus far were confirmed to be hypovolemic prior to the treatment, and done well? A simple yes is not enough when you’re missing half your needed blood supply to live. Usually hypovolemic LC ME patients feel much worse in the days after a big blood draw. Thanks!

@Centralper86207 @MaryBowdenMD @DoctorTro @CharlesRixey Yes.

Thrilled to report that my injured patient in Japan is responding well to treatment. DFPP - double filtration plasmapheresis - and IV stem cell growth factors are not available in the US, but we are hoping to start a trial soon. Thank you @KevinMcCairnPhD @CharlesRixey and team!

@MaryBowdenMD @DoctorTro @KevinMcCairnPhD @CharlesRixey Is DFPP safe for people who have developed hypovolemic POTS? I’m missing almost half my blood supply (almost 1L) per Daxor’s Blood Volume Analysis Test.

@DoctorTro @KevinMcCairnPhD @CharlesRixey Removing amyloid

@meighanstone Thank you! Does LCC email their distribution list these updates - head’s up a meeting will be forthcoming, actual dates when announced, etc? It would help people organize downstream - eg I know several from my area and maybe we carpool etc

@Centralper86207 The last big FY27 Senate Approps hearing for #LongCOVID is on FY27 NIH budget request, usually NIH Director & larger institute heads testify. It hasn't been announced yet, but will be publicly posted here when scheduled, if want to consider attending: appropriations.senate.gov/hearings?mode=… 2/2

As a wheelchair user at Sec. Kennedy Senate HELP hearing today, I again seemed to be only visibly disabled person there. If I missed anyone in the mayhem, I’d be grateful to know. This isn't to erase invisible illness. It's how broader disabled community isn't in these rooms. 1/x

@winslow_la @ActionCovidLong Idk how they argue against multiple studies that show that LC/ME IgG antibodies damage healthy muscle tissue and endothelial cells and mitochondria. BRAVO to these activists!

La psychologisation des #CovidLong, ça suffit. Action non-violente de patient·es CL de Winslow et @ActionCovidLong lors d’une conférence européenne sur le COVID long organisée par les Pr Lemogne/ Ranque, de l'unité Casper 👇

@PaulGarnerWoof You’re a liar. And a fraud. Long covid and MECFS deserve medical treatments. You can’t CBT or GET the IgG antibodies to stop attacking healthy muscle tissue. Freak.

#LongCovid Hope and recovery. These are important messages. People find their own way and here's mine. theguardian.com/commentisfree/…

@amyrochlin This isn’t the first study confirming this either!

A new ME/CFS and post-COVID ME/CFS paper reports that patient-derived IgG immune complexes can influence cell behavior in vitro. The findings suggest a direct link between immune signaling and cellular function. Additional insights 👇 pmc.ncbi.nlm.nih.gov/articles/PMC12…

@forreferenseize @_CatintheHat @WHOWPRO @SendUnsend @WHO No. Then people get infected and think masks don’t work at all. Not realizing they had the wrong mask. Covid is spread through aerosols not droplets. Need k/n95.

@_CatintheHat @WHOWPRO @SendUnsend @WHO Better a surgical mask or even a cloth mask than nothing. It shows people care and respect healthcare workers and science.

If you are in crowded places with poor ventilation, #WearAMask. Because it helps keep you and your community safe from #COVID19, flu and other respiratory illnesses. And remember these other measures to help protect yourself and others from COVID-19, flu, measles and other respiratory illnesses: -Practice hand hygiene and respiratory etiquette (cover your mouth and nose with a bent elbow or a tissue when you cough or sneeze) -Keep a distance when possible -Keep rooms well-ventilated -Stay home if you feel unwell -Get vaccinated and stay up to date with booster doses

@ArtistCyclist @_CatintheHat @1goodtern @WHOWPRO @SendUnsend @WHO THIS. It’s deliberate.

@_CatintheHat @1goodtern @WHOWPRO @SendUnsend @WHO It seems deliberate. It allows wearing of masks to fail and maintain the ‘masks don’t work’ narrative.

@_CatintheHat @WHOWPRO @SendUnsend @WHO WHO still won’t acknowledge #covidisairborne

@WHOWPRO @SendUnsend It’s brilliant to see @WHO recommending masks - but frustrating to see surgical masks depicted. Surgical masks do NOT provide adequate protection from airborne transmission. Respirator-type masks (FFP2/3, N95) should be recommended to protect the wearer from airborne viruses.

@mryoung151 @WHOWPRO The fact that they’re not clarifying what mask type is really continuing to add to this mess. WHO still can’t acknowledge #covidisairborne

@WHOWPRO People think masks don’t work often because they are wearing the wrong type of mask and the mask is not fitted tightly to their face. This explanation may help. Choose an N95/FFP3 and mold it to your face to form a seal like swim goggles. 👇

@WHOWPRO CRIMINAL that you are meekly suggesting mask wearing SIX YEARS into this pandemic and you still haven’t acknowledged that #covidisairborne … millions of deaths, people still dying, and hundreds of millions disabled with long covid and still getting disabled from covid today.