Dallas MEcfs

M.E. advocate & community organizer. #LongCovid ally. Join us on Facebook at #MEActionTexas

[Liz Burlingame @LizMEActGA]

Real question. People with #MECFS have been told for decades that no set aside funding was available to research the disease... The @NIH just found $300 million for #LongCovid...
@NINDSdirector how is this possible? When will u take action for #pwME ?!
@PlzSolveCFS @MEActNet

[Dallas MEcfs @DallasMecfs]

#MEspine2024 What blood work can be done to confirm collagen break down?

[Dallas MEcfs @DallasMecfs]

Mentioning PEM in this article is important regarding exercise after infection. @nytimes @sunsopeningband @tminsberg

[Julie Rehmeyer @julierehmeyer]

It’s so frustrating that there’s no mention of watching for PEM or Long Covid in this @nytimes article about starting to exercise after an infection. @tminsberg, you might talk to @sunsopeningband to understand why this matters. https://t.co/wsWqTZ5saM

[Jeanne Marrazzo @DrJeanneM]

The #RECOVERTLC portal is open for proposed #LongCovid drugs, devices, or other agents targeted at alleviating symptoms associated with Long COVID. We encourage all individuals to share their ideas
https://t.co/SL7dmV5Ucl

[Meighan Stone @meighanstone]

Thanks @NPR for covering this week's @NIH #RecoverTLC meeting & the call to accelerate interventional, patient-centered trials. Grateful to share @LCCampaign perspective & that all of our collective, cross-community advocacy is keeping #LongCOVID needs & developments in the news.

[Billy Hanlon @bhanlon15]

Ron Davis today at the Santa Clara County ME hearing: “..we think this disease is initiated when you initiate innate immunity…you can turn it back off by JAK-STAT Inhibitor…we have seen 1 patient in Australia who took it..within 3 days of taking the drug was completely cured..”

[Billy Hanlon @bhanlon15]

With RECOVER-TLC coming up, Klimas gives her closing thoughts:

- Monoclonals priority
- Treating reactivation viruses needs a big focus, inc. antivirals
- NIH ME Intramural Study suggests JAK-2 Inhibitors. Exploratory, but should be explored
- A whole litany of ideas..

/1

[Billy Hanlon @bhanlon15]

Nath is asked if deciding to study IACC’s separately is hindering progress.

The panelist says studying them together seems more productive than the siloed approach currently.

Nath responds “I couldn’t agree with you more.”

Part 1

[Mother Jones @MotherJones]

There are more than 400,000 people with Long Covid in Minnesota. Under Walz’s leadership, in May of last year, it became the first state to dedicate funding to Long Covid and associated conditions. https://t.co/bCyCrWDq3Y

[#MEAction Network @MEActNet]

#MillionsMissing 2024: #TeachMETreatME will be here in the next few weeks!

We are excited to share the newly expanded Show Up From Home Toolkit, which lays out an array of ways you can take action from home based on your energy level. https://t.co/KfbUbI73jC

#pwME #MECFS

[Ziyad Al-Aly, MD @zalaly]

The economic cost of #LongCovid covid is staggering!

In the US, #LongCovid could result in 1.5 billion work hours lost in 2024 – a potential cost of more than US$152.6 billion

A report by @TheEconomist

https://t.co/LiQQLskiSm

[Dallas MEcfs @DallasMecfs]

Congratulations! Hard earned and well deserved! @exceedhergrasp1 @millionsmissing @MEActNet @pwME @StopTheLongHaul

[Dallas MEcfs @DallasMecfs]

How many Texans need to suffer with ME/cfs and Long Covid before Congress acts boldly to address this crisis? @JohnCornyn @tedcruz @michaelcburgess @MEActNet @PlzSolveCFS #StopTheLongHaul #millionsmissing

[Sen. Bernie Sanders @SenSanders]

The fight against long COVID is not just a medical one. It is a moral one.

Long COVID can have devastating consequences and too many people now face debilitating symptoms as a result.

How many Americans need to suffer before Congress acts boldly to address this crisis?

[Sen. Bernie Sanders @SenSanders]

The fight against long COVID is not just a medical one. It is a moral one.

Long COVID can have devastating consequences and too many people now face debilitating symptoms as a result.

How many Americans need to suffer before Congress acts boldly to address this crisis?

[TL Gibson @TLGibson5]

Dr. Rowe is truly a pioneer in the research and treatment of these complex chronic conditions, and this is a great opportunity to hear him present. Two different dates covering different topics on each date. Thanks to @remissionbiome @renegaderes and Dr. Rowe for this event. 🙏

[Dallas MEcfs @DallasMecfs]

Thank you @SenMarkey for fighting foe people with ME and Long Covid. #MEAction @MEActNet #MillionsMissing @PlzSolveCFS @LongCOVIDAllian

[Ed Markey @SenMarkey]

Long COVID is real, it is disabling, and it is affecting millions. That's why we must fund long COVID and ME/CFS research to better understand and treat these conditions. To all those struggling and suffering—we see you, we hear you, and we will take action for you.

[#MEActionMaryland @MEActMaryland]

Adding on my thanks for the active participation & listening of the Senators today at the #HELPLongCovid Senate Committee.

Many of the Senators noted that we all know someone with Long Covid-or ARE someone with Long Covid. Improved federal response can't come too soon...

[Billy Hanlon @bhanlon15]

Sen. Sanders: "We have a full house here today. There is a sense that something is going on that we are not addressing. We hear what you are experiencing, we take it seriously, we think as a Congress we have not done nearly enough to help turn that around."

#HELPLongCovid

[Ziyad Al-Aly, MD @zalaly]

Today I testified before the U.S. Senate Committee on Health, Education, Labor & Pensions

I called for the establishment of a new multidisciplinary research institute to address Infection Associated Chronic Conditions

Solving these requires a long-term coordinated approach