The significance of oxidative stress in the pathophysiology of Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). esmed.org/MRA/mra/articl
Its ME Matina
@justask
#MyalgicE Patient Advocacy 4 better treatment & cure. UR life/dreams are gone before ur eyes! Federal Advocacy Research Education & Funding #Dysautonomia
USAJoined July 2007
Its ME Matina’s Tweets
1/2 Surgical, cancer, sickle cell, and chronic pain patients across the country often have extreme difficulty filling legitimate prescriptions for pain medication at retail pharmacies. Ignorant politicians, like , who created this mess should be held accountable.
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Left the RECOVER program. #LongCovid
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“Patient Perspectives” is a collection of narratives that describe the experience of a patient with a medical condition in their own words. We applaud this effort as it is critical to include the patient experience in medical education. Thank you to for sharing!
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The wise and beloved by all of us here at #MEAction Wilhelmina Jenkins ( member) shared her patient perspective with . Up-To-date helps "healthcare professionals make appropriate care decisions and drive better outcomes."
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"If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it." shares in Patient Perspectives. #pwME #LongCovid
uptodate.com/contents/patie
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Apparently, this is an ironic joke aimed at mocking Veterans. Vets across Nevada and the entire country have had their pain medications discontinued in forced opioid tapers that lead to destabilization. It’s one of the reasons the Veteran suicide rate is so high.
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Living with pain, whether acute or chronic, can be challenging. Your VA medical team can suggest treatments, from medication to non-drug therapy. @VAResearch continues to search for new ways to help Veterans manage pain. research.va.gov/topics/pain.cfm
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I mean, if you think the objective tests are lit, wait till you hear about the symptom reports. Turns out you can identify someone with probable PESE without even testing them. You just have to listen.
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Cedars-Sinai investigators identified a #gene called NLRP11 that plays an essential role in activating the #inflammatory response that instructs the body’s white blood cells to go on the attack against a foreign presence.
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I'm working on a piece today that's a reader's guide for disability coverage: how to recognize the good stuff and how readers can respond. One idea: the best stuff is usually written by . Readers can respond by amplifying stories like his today on #mecfs & #longcovid.
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Thanks to for this article on #MECFS, #LongCOVID, & the loooming clinical care crisis due to decades of neglect of infection-associated complex chronic disease. Yong spoke to the clinical community's luminaries to produce a well-rounded article.
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🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it.
This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
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Ed Yong nails #LongCovid reporting once again.
Yong wrote an incredibly important article about how our country's handful of #MECFS specialists are nearing retirement even as millions more develop the disease following COVID-19.
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During Childhood Cancer Awareness Month, we're raising awareness for better, safer treatments for kids fighting cancer. #ChildhoodCancerAwarenessMonth 🎗️
💡 Learn more at ccrf.org/ccam-learn-more
🙌 Get involved at ccrf.org/ccam-get-invol
💛 Donate at ccrf.org/ccam-donate
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I totally get the allure of hope, but hope can be dangerous. So can hopelessness. It is better, if possible, to get off the hope-train altogether and deal with reality honestly and pragmatically.
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How many good, innocent people have to die or loose their lives for the world to give a shit about us? This is a curable illness. Literally all we need is for the world to care.
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🚨 In a new study comparing #MECFS and #LongCovid patients, "the frequency of fatigue, myalgia, sleep problems, cognitive dysfunction, and PEM as well as the magnitude of exercise-induced muscle membrane alterations were the same in the two groups."
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Excellent op-ed in by writer & #MEcfs advocate , who is one smart cookie🍪 She makes a well-written case that the pandemic is *not* over. I agree 💯+10%
Biden says the COVID pandemic is over. He could have fooled me
sfchronicle.com/opinion/openfo via
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The new guidelines explicitly *prohibit exercise* in #LongCovid patients with post-exertional malaise/post-exertional symptom exacerbation.
#MedTwitter and others, please internalize this!
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Finally! New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION.
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
Please RT
For more info see 

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We have amazing news to share! #MEAction and Mayo Clinic applied for a grant together from Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS! #PwME #MECFS meaction.net/2022/09/22/may
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The most important ME/CFS advice, and this includes people with long covid, if you suspect ME, start treating and acting like you *have* ME, and then start assessing a dx. Preventing as much damage to your body at the start is so important. #mecfs #pwME #longcovid
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Yes! Thx, . In my earlier tweets I missed recognizing some of the good folks who put their bodies on the line for us. Each one of you is a 🌟STAR!: , , , Pls tell me who else am I missing?
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Replying to @Rivkatweets and @r_prior
There is also Matina, JD, Therese, me, and folks from the Long COVID community. Everything is a blur so just recognizing those right now.
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My health has plummeted this last week…It takes everything I’ve got to not push myself to make or work on something. I’m trying my best to just lie here and listen to music and keep my dreams at bay...
New post on my blog:
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We patients shouldn't be forced to put our bodies in the line and beg for treatment, research, awareness, and funding! I'd like to be able to go to the Dr and not have to educate them about my conditions! THIS IS A NATIONAL EMERGENCY
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Can we all applaud for demonstrating community care yesterday as part of the #MillionsMissing protest? Everyone in high quality masks, outdoors with focus on health safety, prioritizing rest breaks, providing water. This is what we need to see in all justice movements!
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If you missed yesterday's protest, I hosted a recap w/ last night with some of the organizers on the ground in DC, as well as those organizing from home. It was great to be in conversation with
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MEAction Post-Protest Discussion twitter.com/i/broadcasts/1
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21st September 2022 | World Alzheimer’s Day
This year’s theme is ‘Know dementia, know Alzheimer’s’
Explore ow.ly/4JKV50KxPvf to learn more from our #Alzheimers and #Dementia experts!
#WorldAlzDay #KnowDementia #KnowAlzheimers #Dementia
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I have been diagnosed with some comorbids and have access to treatments that help. Most ME patients are diagnosed and written off without exploring common comorbids like POTS, MCAS, and spine issues that CAN be treated. I was bedbound before these.
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Young adults in Massachusetts: drop in to a support group on Tuesday at 3:30! Led by , this group provides a space for young adults with #MECFS, #fibromyalgia, and #LongCovid to share stories, ask questions, and offer support.
🔸 Register now: bit.ly/3DCToBZ
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Long COVID experts, patients, and advocates say the U.S. government isn't doing enough to prevent the condition and support people with it
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I don't hear it talked about enough that our disability benefits system in the US is by design not equipped to handle the influx of people from Long Covid. It's basically a patchwork w/a steep learning curve, but sure, Joe, the pandemic's over.
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To be clear, the protest is a demand for President Biden to declare a national emergency with regard to #LongCovid #Mecfs and other post- infection illnesses. We need a moonshot effort to treat and cure these disabling conditions! #StillSickStillFighting
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needs to FUND #LongCovid research! How can the NIH not fund research on something afflicting millions of Americans?
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Why I'm Getting Arrested on Monday at the White House, and How You Can Help:
Join the first national civil disobedience protest for #LongCOVID and #MECFS , or take action at home to support! thecrankyqueer.substack.com/p/why-im-getti
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Bedbound, but in solidarity with the millions of Americans who are #StillSickStillFighting. #LongCOVID, #MECFS & associated diseases are a national emergency. #MillionsMissing
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HUGE thanks to SENATOR TIM KAINE for backing The Long Haul. His quote calling it "A book we need right now" will appear on the cover. For 2 years, has been vocal about being a long hauler, asked tough #longcovid questions in hearings, and channeled the patient voice
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Standing in solidarity with #MillionsMissing today. I am so grateful to those of you able to take action in person or from home today. I’m resting this afternoon…like so many days that feel stolen from my life due to #LongCovid & #ME declare an emergency now. 💖
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Hello, #MillionsMissing! I am in solidarity with those protesting in DC today!
Millions of people are fighting for their lives. Prouder than I can say to be behind you, working to keep the home fires burning. @POTUS must heed our call. #LongCovid #MECFS @MEActNet.
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