Cynthia Adinig @CynthiaAdinig Twitter profile

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Cynthia Adinig

5 months

🚨 Alert: Concerns are rising around the LC/DC march legitimacy. Are donations raised legally by Long Covid Foundation? Is LCDC even a company? Transparency is crucial in advocacy. Huge Scandal?!! 🤯 #LongCovidAwarenessDay #ISupportLCDCBecause #WomensHistoryMonth

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Cynthia Adinig

@CynthiaAdinig

2 years

So I'm in the ER because my long covid symptoms are in a severe flare. Making me react to even water touching my body and every food. I warned staff that I could have an allergic reaction to even prior "safe" items, meds etc. Sure enough I had a severe reaction to saline flush.

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Cynthia Adinig

@CynthiaAdinig

2 years

Y'all I'm pissed right now. 😡 Post covid pediatric clinic has no opening until February, I took my 7 year old son to a pediatric cardiologist. Tell me WHY Dr said she doesn't think he has #POTS , but thinks whatever the issue is, would be fixed by GRADED EXERCISE THERAPY! #MECFS

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Cynthia Adinig

@CynthiaAdinig

2 years

It was difficult having to tell my son that there's no appointments in the pediatric #LongCovid clinic this year. Then having to tell him that even the best specialist can't tell him how long until he can return to doing the activities he loved was heartbreaking #NEISvoid #MECFS

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Cynthia Adinig

@CynthiaAdinig

4 years

@TalbertSwan @realDonaldTrump Well he's shown that the lives of people don't matter to him just the stock market. So should we be surprised he finds the deaths 3x higher than the flu to be no big deal?

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Cynthia Adinig

@CynthiaAdinig

2 years

of course they treated my reaction as if it was a panic attack, though it was MCAS then dysautonomia triggered from the saline. They waited over an hour to even give me an antihistamine, though I begged for antihistamine during and after. So now the plan to do IV meds hit a snag

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Cynthia Adinig

@CynthiaAdinig

2 years

‼️I'll be protesting with @MEActNet to amplify the need to treat #LongCovid & #MECFS as a national emergency. I may look well but getting there is going to take everything in me & I'll feel like crap. But I'll be there. Join me‼️ #NEISvoid #healthequity

LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19

The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept. 19th at 12 p.m. ET to demand that the Biden administration declare Long COVID and ME/CFS a...

www.meaction.net

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Cynthia Adinig

@CynthiaAdinig

3 years

@jenbrea When I got adopted by the mecfs community I was shocked by how much the community knew to expect us longhaulers & how the community foresaw the medical gaslighting & neglect. That it's been this way for decades. I had no idea until long covid. I won't stop until this cycle ends

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Cynthia Adinig

@CynthiaAdinig

2 years

This week I've been putting together furniture. I never thought I'd do this again after my loss of mobility in 2020. But I was able to move 50 pound boxes, use power tools and wake up the next day fine. I'd be still ignorantly triggering myself without wisdom of MECFS advocates.

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Cynthia Adinig

@CynthiaAdinig

2 years

I had oral Prednisone and benedryl at home and it isn't getting me out of this feedback loop of hyper reactivity. All labs look normal. Any ideas of what to try orally? Already on 4 Zyrtec, 2 benedryl, 10mg Prednisone, cyproheptadine daily the past week. #NEISvoid #mecfs

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Cynthia Adinig

@CynthiaAdinig

2 years

Why MECFS & Dysautonomia public awareness matters in Long COVID research. Why education on these must happen immediately! A Thread: Currently there's a billion dollars in research for #LongCOVID . But research is only as good as RESEARCHERS & PATIENTS are educated

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Cynthia Adinig

@CynthiaAdinig

2 years

As a now homebound, chronically ill person I cringe at the term " lockdown". It made me think. How did those who were homebound BEFORE the pandemic feel about the term? 🤔Let me know in the comments #NEISvoid #DisabilityTwitter #MECFS #LongCovid #millionsmissing

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Cynthia Adinig

@CynthiaAdinig

2 years

Lack of Dr education is why, though Im mostly homebound, I go to each appointment for my son! A parent that isn't educated about #mecfs would have no clue graded exercise therapy could make long covid worse! If I hadn't just protested with #meaction I'd take to the streets 😡

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Cynthia Adinig

@CynthiaAdinig

2 years

Bias, against #longhaul induced MECFS from within the MECFS community contributes to harm from systemic racism. A thread: We now have the most racially diverse population of PwMe that the country has ever seen. Community #gatekeeping is stifling potential community wins.

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Cynthia Adinig

@CynthiaAdinig

3 years

@jenbrea I believe I'd still be bedridden & wheelchair bound if it wasn't for the mecfs community. 18 months into long covid no specialist has mentioned rest, pacing or chemical sensitivities. Which is why I helped get dr education about mecfs, pots etc added to long covid legislation

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Cynthia Adinig

@CynthiaAdinig

2 years

@blackedraven Good observation. The prevalence seems the same along racial differences. The difference is most women of color don't have access to information or money to secure diagnosis or treatment. Many who are aware they have long covid can't afford to persue chronic illness

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Cynthia Adinig

@CynthiaAdinig

1 year

Press Alert‼️ BIPOC Equity Agency Cofounder @limitlessliza and I will be on Capitol Hill tomorrow for @PlzSolveCFS Advocacy Week. We will be meeting legislators in the Senate building to support the #CAREforLongCovidAct Contact us to schedule an interview. #mecfs #BlackWomen

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Cynthia Adinig

@CynthiaAdinig

2 years

Mind you I told her the incident of light play that triggered this flare months ago. Alongside the documenting of his long covid symptoms flaring after mental and physical exertion using daily logs with pulse oximeter. Yet she STILL recommended graded exercise therapy‼️

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Cynthia Adinig

@CynthiaAdinig

2 years

It's not just that MECFS advocates taught me to pace. I learned what rest was. I learned PEM can be triggered by mental exertion as much as physical. That my resting wasn't laziness, it was an investment in my future well-being. I was able to move past societal pressure to do.

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Cynthia Adinig

@CynthiaAdinig

2 years

@minadjenkins It was really scary how unconcerned they were during my reaction. The nurse actually walked away as I was telling her I was feeling my throat tighten. It's absurd to be diagnosed with MCAS and MCS yet they still treat it as panic attacks. No rush at all to bring down my reaction

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Cynthia Adinig

@CynthiaAdinig

6 months

Just wrote a piece exploring CRISPR gene editing & AI tackling Long COVID and ME/CFS treatments. Including viral persistence & immune dysregulation. This is for the science nerds & researchers. I'm more than a policy powerhouse 🙌🏾 #CRISPR #AI #research

Revolutionizing Long COVID & ME/CFS with CRISPR and AI

CRISPR-based gene editing as a pathway to tackling Long COVID and ME/CFS using AI to expedite the process.

www.bipocequityagency.com

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Cynthia Adinig

@CynthiaAdinig

5 months

@ThePOTSPostman Yes and its why I recovered my me/cfs , mobility and pots so thoroughly. But this type of treatment is a privilege most cant commit to, in the length of time needed due to lack of resources.

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Cynthia Adinig

@CynthiaAdinig

6 years

Alice still doesnt get it @angela_rye Starting a conversation is not enough. Opening a dialogue is not enough. Hope for future change is not enough. We need actions, we need support. We need them to denounce Trump as racist. Plain and simple.

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Cynthia Adinig

@CynthiaAdinig

2 years

@shasha55 @PlzSolveCFS It's through my education from MECFS advocates, that I've realized I've had MECFS for atleast a decade.. Women of color, historically are under diagnosed, are discovering now that we've had MECFS, MCAS, dysautonomia, EDS etc. We were just not diagnosed due to racial bias.

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Cynthia Adinig

@CynthiaAdinig

1 year

I am diagnosed with #MCAS , #POTS #MECFS , #longcovid , & #MCS . Inova has my records, yet discharged me while unstable. @InovaHealth refused me breathing related care during air an quality advisory! They didn't even run labs for my infection. The alarms you hear is my heart rate.

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Cynthia Adinig

@CynthiaAdinig

6 months

Wasn't going to go to the hearing due to the hostile behavior of some who attended. But I'm glad I did because I met some new faces and connected with old friends. It was a great step forward to a future of bipartisan inclusive advocacy.

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Cynthia Adinig

@CynthiaAdinig

3 years

December 29th we will remember and honor #longhaulers . Turn your lights and social media blue and yellow in solidary on that day. I do this for Jake, Maddy, Heidi, Leiah and for those of us still here for the long haul #LongCovidLost #LightUpLongCovid

Mojoroxy 💛🦋#longcovid

@roxy_mojo

3 years

Hey #longcovid help us #lightuplongcovid . December 29 fill your timelines with this graphic. Light your lights yellow and blue. Let’s bring the light to darkness in honor of those we lost,and in honor of the fight we face. #fblc 💙💛⁦ @rubyslippahs ⁩ ⁦ @CynthiaAdinig ⁩

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Cynthia Adinig

@CynthiaAdinig

3 years

@NewsHour When @Rivkatweets says that the #MyalgicE community has built a relationship with us #LONGHAULERS she means it. They have embraced and guided us so beautifully.

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Cynthia Adinig

@CynthiaAdinig

2 years

If patients aren't educated in what MECFS or #Dysautonomia symptoms are, they can improperly categorize a symptom. For example tachycardia as anxiety or post exertion malaise flushing as fever. Temperature sensitivity as chills. Causing survey data to be incorrect.

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Cynthia Adinig

@CynthiaAdinig

2 years

Every day I risk anaphylaxis by doing necessary human actions. Such as basic hygiene, eating, drinking and breathing. Every day, all day for 2 years. All from mild covid. #longcovid #longhaulers #chronicillness #NEISvoid #MECFS

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Cynthia Adinig

@CynthiaAdinig

2 years

We are wasting our tax dollars by continuing to sweep #chronicillness such as Dysautonomia and MECFS aside while tackling Long COVID. The history of diminishing these illnesses in the past is why many Long COVID symptoms have no diagnostic testing present day. #NEISvoid

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Cynthia Adinig

@CynthiaAdinig

2 years

Update: I'm home now. Had quite the experience last night which is why I had avoided the ER in spite of being in pain all over and a barrage of symptoms at home. Unfortunately, mistakes by staff have now prompted even more work for me to do today to make sure I safely stabilize.

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Cynthia Adinig

@CynthiaAdinig

2 years

MECFS, Dysautonomia and other chronic illnesses are often under diagnosed, especially in communities of color. If a Long COVID researcher is only selecting those who didnt have these conditions diagnosed prior to Long COVID the data will be tainted.

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Cynthia Adinig

@CynthiaAdinig

2 years

By correcting government agencies when they frame systemic healthcare issues highlighted by long covid as new. By including language specific to people with ME in policy proposals. By passing down your wisdom, with due credit to the newly disabled. ❤️Forever grateful ❤️

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Cynthia Adinig

@CynthiaAdinig

2 years

@Sabrina_Poirier Yeah they know to be respectful now. They still are not educated enough to be helpful unfortunately. My reaction to the saline was avoidable. My suffering afterwards avoidable. Thankfully I got a nurse with long covid at shift change. That made ALL the difference. I'm home now

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Cynthia Adinig

@CynthiaAdinig

2 years

If a Long COVID researcher isn't educated in #MECFS & Dysautonomia. They can ask questions that lead to wrong data or misinterpret actual data. Especially those with an implicit bias against chronic illness such as believing that many symptoms stem from poor mental health.

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Cynthia Adinig

@CynthiaAdinig

2 years

By grateful I don't mean empty words on social media. I mean, I'll forever invest in the care of those who have rested for years, but aren't recovering. By telling the world that restoring your lives back to it's former scope is just as important as those with Long Covid.

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Cynthia Adinig

@CynthiaAdinig

3 years

This is some of the racism I experienced while fighting for my life from Covid. One day I hope for the opportunity to tell the full story. Getting past the gatekeepers of the ER was just the beginning of my fight. #COVIDEmergency2021 #LONGHAULERS #COVID19

Why this Black woman with ‘long covid’ feels the medical community has failed her

Over the last eight months, 35-year-old Cynthia Adinig has been to the hospital upwards of 20 times for debilitating symptoms related to long-haul covid-19, ranging from heart palpitations to severe...

www.washingtonpost.com

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Cynthia Adinig

@CynthiaAdinig

3 years

@Rivkatweets #MECFS community helps us long covid people with practical solutions and tips on how to manage daily life better than any specialist I've ever seen. #LongCovid community has brought mecfs the attention and research it has desperately needed for decades

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Cynthia Adinig

@CynthiaAdinig

5 months

I will not be participating in any activities LC DC as they are working with LCAP, the group of people who continue to harass and bully me. Their behavior has stoked violent sentiments in patients & I fear my physical safety. You don't get to harm people then demand inclusion

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Cynthia Adinig

@CynthiaAdinig

1 year

Lastly. I will not allow for the continued slander of the #MECFS community's commitment to post viral chronic illness patients. #LongCovid patients wouldn't be where we are today without the effort of very sick people. Many worked in the shadows for FREE for decades! #neisvoid

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Cynthia Adinig

@CynthiaAdinig

1 year

Due to the irritatingly predictable behavior of some people I'm sharing a piece I wrote months ago about why this patient advocacy space is so White. Do not talk about #Diversity & elevating #voicesofcolor then tone police me, especially in my space.

Why The Long Covid Advocacy Space Is So White

It is easy to pin this historically White woman-dominated space as just being due to the racial bias in healthcare. But there are layers.

www.bipocequityagency.com

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Cynthia Adinig

@CynthiaAdinig

2 years

When people of color see me, an expert level patient advocate, be powerless to save my own life in a medical emergency due to #bias & ignorance, this furthers their disinterest in participating in #ClinicalTrials or routine care. No matter how much money we put into outreach.

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Cynthia Adinig

@CynthiaAdinig

3 years

Long covid community pay close attention to this! Those with MECFS have much more symptoms in common with us than you think. They are the Kakashi Hatake to our Naruto Shippuden if only we are wise enough to listen #advocacy #animegirl #NARUTO

Rivka

@Rivkatweets

6 years

Marie Claire published my latest article. Pls share!: What It Is Like to Live with Multiple Chemical Sensitivities

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Cynthia Adinig

@CynthiaAdinig

2 years

I'll continue the work I've done to elevate the struggles and contributions of #PwME who came before me. I'm forever grateful for the #mecfs advocates who cared for me when friends & family didn't. Let's make sure my welcome resembles that of other new PwME too. #NEISvoid #mecfs

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Cynthia Adinig

@CynthiaAdinig

1 year

@NeurologistMom Same. My son was reading, writing , doing art, & math at 2 years old. At 3 doing algebra, square numbers &, geometry. Long covid mild at 4. By 5 years old, Mensa and chess prodigy . By 7 ME/CFS & POTS flares caused cognitive impairment and more. His brain before long covid ↘️

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Cynthia Adinig

@CynthiaAdinig

2 years

@crwequine I've been hearing good things about this as well. I'm willing to try anything at this point. The right rope I walk to avoid ER trips is just too much as is. Clearly my current regimen isn't stabilizing my mast cells enough.

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Cynthia Adinig

@CynthiaAdinig

3 years

@exceedhergrasp1 @jenbrea So am I! @minadjenkins & a few others worked hard to reach me to help me & other longhaulers to recover. I was declining & having weekly ER trips from PEM & couldn't understand why. Now I've been able to pass that knowledge to 2nd and 3rd wave longhaulers

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Cynthia Adinig

@CynthiaAdinig

3 years

Why chronically ill need to be involved in policy making. A thread. I was initially turned away from my in person appointment Friday because of new covid screening protocols. This caused me to have a longer wait time & exposed me to breathing air that inflames my symptoms.

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Cynthia Adinig

@CynthiaAdinig

2 years

Lack of doctor education, awareness and #systemicracism caused the #MECFS community and other chronic illness communities to be disproportionately white female. Many of us women of color especially, were unaware of the dangers of viral infections going into the pandemic.

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Cynthia Adinig

@CynthiaAdinig

2 years

Love that @bkeaton07 is finally able to do the advocacy that she has been wanting to do. 🙌🏾 Also loving the new norm of pacing, a term made popular by the MECFS community, being part of long covid care so often now. #MECFS #LongCovid

The News & Observer

@newsobserver

2 years

Getting better from long COVID is a process that requires pacing, pauses and patience — from those suffering and those treating them.

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Cynthia Adinig

@CynthiaAdinig

2 years

I learned in 2020 from the wonderful MECFS advocates who invested in my care, that there was a time when the MECFS community excluded those without a viral trigger. There was also a time when scientists excluded people of color. I see similarities with #longhaul triggered MECFS

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Cynthia Adinig

@CynthiaAdinig

2 years

When research finally shows developing long covid increases if people don't rest with asymptomatic covid or lingering covid symptoms, who is going to be accountable for pushing people to work prematurely? You can't say you consulted patient advocate groups then play dumb later.

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Cynthia Adinig

@CynthiaAdinig

1 year

Before I was seen by the Dr, I heard the patient next to me with multiple broken bones from a car wreck sobbing. So I consoled her as she tried to remember if her brother died. She told staff how wonderful I was to help her. Even as a patient in distress, I'm a #patientadvocate .

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Cynthia Adinig

@CynthiaAdinig

2 years

On my quest to get care, I read multiple chemical sensitivity, which is what is causing me to be homebound is yet another psychologized illness. 😑 Explains why I didn't know the name until @Rivkatweets told me. Can someone give me the history & ideas on legitimizing #MCS ?

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Cynthia Adinig

@CynthiaAdinig

2 years

@RammyaMathew @BinitaKane My son was 4 when we all got long covid. It made him tired from physical activity, he got a rash, increased allergies, overall fatigue. Potentially some cognitive issues with memory and emotions.

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Cynthia Adinig

@CynthiaAdinig

2 years

So I ask you. How long? How long into experiencing #MECFS does it take to be counted as being part of the community? How long will it take a community of the formerly excluded, realize that whataboutisms towards Longhaul c now excludes the new majority of #PwMe ?

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Cynthia Adinig

@CynthiaAdinig

2 years

@TahirihWalsh Yes I got limb numbness, struggle with speech, motor skills decline, tremors, headache nausea, bone aches in a flare like this. All of which ebb and flow during an active episode and right afterwards. I explained this afterwards, but I'm sure they took it with a grain of salt.

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Cynthia Adinig

@CynthiaAdinig

2 years

Being a now visible advocate of color, I interact with many people of color with severe #MECFS triggered during the pandemic. This includes those who also were undiagnosed with MECFS for years. Also those a few months post infection. I affectionately call "baby" #longhaulers

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Cynthia Adinig

@CynthiaAdinig

2 years

How long before the defense mechanism to protect the " traditional & founding" community of #MECFS becomes a pillar in systemic racism many of your abhor? How long before this segregation from #longhaulers becomes a blight in the history of MECFS. Instead of an example of unity.

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Cynthia Adinig

@CynthiaAdinig

2 years

@exceedhergrasp1 I had a nurse in the ER tell me that my heart rate at rest of 160 ( even though alarms kept being triggered) was fine and if I lost consciousness they wouldn't help me.

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Cynthia Adinig

@CynthiaAdinig

3 years

I've come a long way from the beginning of my long covid journey that began almost 2 years ago. If nothing else I'm stronger and wiser each passing day. I'm finally looking forward to the future. Cheers to new beginnings 🥂 #LongCovid #mecfs

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Cynthia Adinig

@CynthiaAdinig

2 years

@SassyIsMe1961 That's what scares me, my nasal spray that I usually use to help with my symptoms now is causing more allergic reaction. I've never tried epi pen. It could make me worse. I don't think they are taking it seriously. If my body is rejecting air food or water home isn't safe 😑

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Cynthia Adinig

@CynthiaAdinig

2 years

The" baby" longhaulers, those from this wave, whose struggle I see as a call for me to help. I often refer them to be involved in the #MECFS community for additional support. Imagine my disappointment when I'm told they don't feel welcome. That they see comments of hate instead😔

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Cynthia Adinig

@CynthiaAdinig

1 year

Looking forward to expanding my current work with #MECFS and #LongCovid research even further as a patient expert 🙌🏾 Together we can help the #MillionsMissing2023 . Thank you @UofSC #MECFSAwarenessDay #RepresentationMatters 🙌🏾 Doing this for you especially @minadjenkins ❤️

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Cynthia Adinig

@CynthiaAdinig

2 years

Through the valuable input of #PwME I've been able to recover in a way that racial bias in healthcare prevented. Ive also learned that this virus didn't actually trigger my #MECFS , a prior #EBV infection 10 years ago did. It triggered my becoming bedridden from pregnancy too.

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Cynthia Adinig

@CynthiaAdinig

2 years

I will be speaking at the Lincoln Memorial tomorrow, March 5th. It is a candlelight ceremony 5-6:30pm with @A_shot_of_Ri In honor of the heroes, survivors and those lost from the pandemic. Also a live stream at #LongCovid #COVID #pandemicremembrance

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Cynthia Adinig

@CynthiaAdinig

3 years

I'm so proud of my friend Candace for speaking about this. So many of us struggle with the mental exertion needed to fill out disability forms only to be denied. It's a real battle with insurance companies to get things covered that are supposed to be available to us.

CBS Mornings

@CBSMornings

3 years

An estimated 1 in 20 people who suffered from COVID-19 are so-called "long-haulers." That means they recovered from their initial illness, but often have debilitating symptoms for weeks or even months. @AnnaWerner looks at some of the challenges they face.

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Cynthia Adinig

@CynthiaAdinig

3 years

@Sabrina_Poirier It is hurtful to see . Especially as a person of color with long covid. Knowing that we wouldn't have access to meetings with NIH, CDC or be involved with long covid legislation if the mecfs community hadn't organized, advocated & protested for decades. Y'all been here.

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Cynthia Adinig

@CynthiaAdinig

2 years

If you'd like to hear me speak candidly, about the intersectionality of police brutality, gender & racial health equity, join me this Sunday, January 22 at 4pm ET. With readings from The Long Haul with @r_prior hosted by @MassMECFS This event is free.

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Cynthia Adinig

@CynthiaAdinig

1 year

@rolandsmartin How long before the respectability politics folk come here the comments to tone police, while overlooking the often vile and profane platform Lauren has built as a staple of the conservative base?

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Cynthia Adinig

@CynthiaAdinig

2 years

@Rara30585698 @Dakota_150 As an introvert I was originally excited about the shutdown. I saw it as my first real vacation in over 5 years. Little did I know I'd end up disabled for 2 years and never achieved the quiet relaxation I crave. Because I've had to fight for my life then for others ever since

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Cynthia Adinig

@CynthiaAdinig

2 years

@TiffanyDCross Please come out to cover the disability protest tomorrow. Long COVID is exacerbating healthy inequities! We need more women of color to know what long COVID is. Tens of millions got it in just 2 years but very few black people are diagnosed. ✊🏾

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Cynthia Adinig

@CynthiaAdinig

1 year

Me watching #paxlovid trending due to long Covid studies being halted, while having watched people tolerate @tollovid better 💅. As with AIDS we are going to find that a combination is key. Blend of antiinflammatories & antiviral and for specific populations antihistamine.

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Cynthia Adinig

@CynthiaAdinig

2 years

@longcovidpain I feel the same way. I'm so astounded with this community. The gaslighting and apathy alone! Experiencing all of that PLUS symptoms pre social media had to be brutal. Having to figure it out with little research & fight wrong research too! PwME are legends in my eyes ✊🏾

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Cynthia Adinig

@CynthiaAdinig

2 years

My wish for us all #mecfs #LongCovid #chronicillness

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Cynthia Adinig

@CynthiaAdinig

2 years

Ironically, many #MECFS advocates fought hard for future post viral and post infectious patients, especially of color to have less hurdles. For more MECFS research funds & legislation that mentions MECFS specifically. Wins, due to millions suffering with #Longhaul c induced MECFS

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Cynthia Adinig

@CynthiaAdinig

2 years

I was hoping to wake up to the news that all of America would hear the words long Covid from our President. I'm disappointed that this didn't happen. I see so many people on social media confused & surprised by long Covid after mild infection. People have no idea to even get care

COVID-19 Longhauler Advocacy Project

@C19LH_Advocacy

2 years

Please see our formal letter to @POTUS in response to the absence of #LongCovid discussion, education & awareness in last nights #SOTU address. Please RT & write @potus & @WhiteHouse demanding more public education to help combat #COVID19 & #LongCovid .

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Cynthia Adinig

@CynthiaAdinig

6 years

@PARISDENNARD Really? You worked in the white house yet you dont appreciate how much these intelligence experts give to this country even after retirement. You dont even understand the many levels of security clearances. How?

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Cynthia Adinig

@CynthiaAdinig

2 years

Nearly half of those with #Longhaul c develop MECFS. That's 10 million! Yet I see rhetoric from those with the privilege of KNOWN #MECFS for decades, make light & exclude our experience. I can handle it. I have built lifelong bonds with #PwME who saw my struggle as a call to help

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Cynthia Adinig

@CynthiaAdinig

1 year

I keep hearing that there's nonsense happening in the #LongCovid Twitter space. I was hoping multiple people would be decent after private talks and time, but that didn't happen. I prefer neutrality but clearly someone needs to level set. So now: Cynthia has entered the chat. 🗨️

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Cynthia Adinig

@CynthiaAdinig

2 years

@julierehmeyer Parenting while disabled from long covid, with a child that's now back to being symptomatic is so very difficult. I'm finally well enough to go on an occasional short walk for the first time in 2 years. But now HE'S too sick for that. 😔

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Cynthia Adinig

@CynthiaAdinig

2 years

From the dialogue I've witnessed about longhaul from many in the pre-pandemic MECFS community, you'd think millions of us aren't now also #disabled . Our childrens future are also in jeopardy from lack of experienced doctors. Our relationships with friends & family also destroyed

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Cynthia Adinig

@CynthiaAdinig

6 years

@JasonDeciccio @Argelinreallife @BetaPsi77 @CNNPR @DonaldJTrumpJr It is unclear when I go to a college football game how many rapists or violent criminals are in the crowd. But you don't see any fearmongering happening around those events. Even when those events lead to rioting and property destruction.

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Cynthia Adinig

@CynthiaAdinig

2 years

@cjmaddison The only thing I and doctors here can think of is higher doses of antihistamine and steroids under super in case of adverse reaction. I'm also experiencing an unusual amount of joint pain, muscle aches and stiffness. Which means pain meds under close watch as well.

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Cynthia Adinig

@CynthiaAdinig

5 years

@MatthewACherry Shoot that's all you had to say

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Cynthia Adinig

@CynthiaAdinig

1 year

I'd rather be working on #longCOVID / #MECFS research & BIPOC outreach. Bad behavior from a few is impacting that. I didn't become an advocate for fame or money unlike some others. I guarded my words, not because I'm shy, but because I know my astute ability to build or destroy.

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Cynthia Adinig

@CynthiaAdinig

2 years

Another update: filed a complaint with patient relations. They will continue to be on my contact list until I see some changes.

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Cynthia Adinig

@CynthiaAdinig

3 years

@EricTopol Many of us first wave longhaulers discussed our change in how we smelled. I don't think I still have the smell almost 2 years into long covid. But the first year my sweat smelled different.

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Cynthia Adinig

@CynthiaAdinig

1 year

I had told the Dr that I could have an allergic reaction to the cough medicine they gave & I needed to be monitored. They discharged me before I could take the meds but said to take my time. After a tiny drop I had tremors, higher heart rate, mouth numbness etc ALONE! #neisvoid

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Cynthia Adinig

@CynthiaAdinig

2 years

Comment some names of other illnesses that overlap with longhaul, MECFS and autoimmune that is unduly psychologized. I might as well clean up a bunch of things rooted in bias while I'm here. Clearly I'm not going anywhere. *Pun intended ✍🏾 #NEISVoid #InvisibleDisabilitiesWeek

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Cynthia Adinig

@CynthiaAdinig

7 months

I know there are more Black women out here struggling who are in denial or hide their symptoms for many reasons. I hope this beautiful letter from Chimére gives you the courage to put yourself first in your physical & mental health. There is a tribe here waiting to embrace you.

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Cynthia Adinig

@CynthiaAdinig

2 years

@tiaragainey3 It's the inexperienced Drs creating the PTSD in us. I'm going to need more trauma therapy for just this one appointment.

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Cynthia Adinig

@CynthiaAdinig

2 years

@JefferySmithME ME plus MCAS plus MCS plus POTS plus is one hell of a horrendous combination. Lots of pain and tiredness today 😔 Thankfully my ME has been the best managed for me than everything else lately. Thanks to ME patients guidance. My MCAS and MCS however remain consistently disabling

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Cynthia Adinig

@CynthiaAdinig

2 years

It's a self fulfilling cycle to brush off a symptom or illness as psychosomatic. This discourages research, documentation & diagnostics. If we've learned anything from the pandemic & decades of failure with #MECFS it's that lack of diagnostics doesn't mean an illness isn't real.

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Cynthia Adinig

@CynthiaAdinig

1 year

@PenGwenWithLC A group chat unfortunately sounds like a great idea for me going forward. So I don't almost die unnecessarily like what happened in January. Sad we have to go through this while experiencing a medical emergency

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Cynthia Adinig

@CynthiaAdinig

2 years

The same way men can't fully understand the nagging reality of assault that comes with being a woman, even my white chronically ill counterparts could never fully grasp how easily even routine healthcare can turn into the violent end of black lives. #neisvoid #DisabilityTwitter

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Cynthia Adinig

@CynthiaAdinig

6 years

@PARISDENNARD @realDonaldTrump @facebook Isnt it freedom of speech for those Republican former intelligence directors to say Donald Trump is a liar and a fraud.

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Cynthia Adinig

@CynthiaAdinig

2 years

Read my piece about #MECFS , its impact on #LongCovid & what this means for the future of healthcare and patient advocacy. Written for the Milken Institute Power of Ideas series. I will also speak about this at this year's #MIHealthSummit . #PowerOfIdeas

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Cynthia Adinig

@CynthiaAdinig

5 months

@minadjenkins I never thought I'd have to factor in violence from patients as an advocate. Especially from lies spread by other patients. Bad enough I have to be on guard at hospitals and law enforcement. The one safe space in society used to be at these events. That's been stolen from me.

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