Long Covid Commentary @LongCovidComms
Long covid patient who thinks the world needs more resources to solve and treat long covid and me/cfs #FBLC #pwLC #LongCovid #mecfs #pwME treat #PEM on the couch Joined July 2022-
Tweets7K
-
Followers3K
-
Following4K
-
Likes12K
There’s still time to urge Congress to include #LongCovid in the FY25 budget, but we need your help! Please take a minute to send a prefilled letter backing $1.2B+ in funding 👇 actionnetwork.org/letters/long-c…
I have shown before a graph of monthly walking while I was on Ampligen but I haven't shown a weekly graph. Here it is, you can see the gigantic difference. Once September started I was feeling much better. Trial concluded in October.
This is super easy. Please fill this out.
NEW CAMPAIGN ALERT 🚀 We are calling Congress to ensure #LongCovid research funding is included in the FY25 budget. Senators Markey, Kaine, and Duckworth have cosponsored a letter calling for $1B+ in funding. It needs more signatures by May 7th! Guide: longcovidmoonshot.com/call-guide
We need serious biomedical research and clinical trials for #longcovid and #mecfs. Without them we rot.
We need serious biomedical research and clinical trials for #longcovid and #mecfs. Without them we rot.
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 impact.economist.com/perspectives/h…
@doctor_oxford @guardianopinion we are SCREAMING OUT for governments to invest in research and it’s complete silence from everyone. Why are you ignoring so many of us @doctor_oxford when we’ve been in your comments and tagging you and begging for help for months now? You reply to comments and blank these ones…
We have a horrifically poor prognosis unless we get a huge investment in research and clinical trials. Right now we don’t have anything close to the investment needed.
We have a horrifically poor prognosis unless we get a huge investment in research and clinical trials. Right now we don’t have anything close to the investment needed.
Knowing that Ampligen is out there and it worked on me and I could be living my life semi normally now but noooo....FDA never approved it so i just rot in here 🙂
Tern spews misinformation, we get it. But instead of always punching down I would like to see these accounts relay informative data on #longcovid. ONS data show people are not recovering, that .6% of the entire UK population is severely affected and that number isn’t going down.
Tern spews misinformation, we get it. But instead of always punching down I would like to see these accounts relay informative data on #longcovid. ONS data show people are not recovering, that .6% of the entire UK population is severely affected and that number isn’t going down.
Because @NIH has done zero research to further a treatment for PEM or #longcovid, all I have left are memories.
Because @NIH has done zero research to further a treatment for PEM or #longcovid, all I have left are memories.
If a subset of people with #longcovid have inflamed brains and spinal cords don’t they quite literally have ‘myalgic encephalomyelitis’
I guess I’m one of the 75% of boosted people that got #longcovid. Who cares about this anymore. We need treatment.
I guess I’m one of the 75% of boosted people that got #longcovid. Who cares about this anymore. We need treatment.
You know, we tried. We tried gentle exercise in bouts of 30 s and resting after. And yet, people keep telling us about how exercise is beneficial. Will you ever just listen to patients? Find a cure for PEM and the secondary deconditioning isn't an issue anymore. 🧵
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
GeoCK @GeoEduOne
6K Followers 955 Following MSc | AD | ICL, UCL, UOB alum | Geoscientist, cyclist, adventurer, athlete, dad | Sidelined after a “mild” Covid infection, Dec 2021 | #LongCovid #FBLC #Climate
Dr. Alice 💕 @calirunnerdoc
26K Followers 1K Following Cardiologist,Advocate,🏃🏼♀️,✍🏻,Posts≠medical advice. NO DMs for med advice,SARS-CoV-2=persistent vascular bomb💣.Views expressed are my own,not my employers.
Brian Fog @useless_priest
6K Followers 5K Following Struggling to live, laugh, love in the midst of a global mass disabling event | #LongCOVID Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Ippokratis @IpLongCovid
7K Followers 1K Following Physical education and sport science BSc #LongCovid
Myra Batchelder @myrabatchelder
19K Followers 11K Following Health Policy & Advocacy. @COVIDAdvocacyNY @COVID_Advocacy. #SRHRJ #VaxPlus #KeepMasksInHealthcare. @Harvard @SarahLawrence alum. She/her
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
T@Sunset @TeiaSunset
6K Followers 6K Following #LongCovid 2003/2020 / Cancer survivor. 🎵🎶Humming music, writing under trees watching sunsets.🏝️😻
Pam Bishop, PhD @pamelarbishop
10K Followers 3K Following Was research professor, now disabled by #LongCOVID (12/5/20) & subsequent #POTS #MECFS #MCAS #SFN #cSVD Patient advocate when able. Tell your story if you can.
💛Lady w/ LongCovid.. @TheExtraFiles
4K Followers 4K Following ~ #LongCovid 2/2020 ~ International #LongCovidAwareness ~ Long Covid Zoom Chat (DM for link) ~ #FBLC ~ Hater of #COVID ~ #Mask it up~✌🏼💛😷
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Binita Kane @BinitaKane
31K Followers 4K Following #LongCovid interested Lung Doctor | [email protected] | YouTube channel @LCCWYCD | Co-founder #southasianheritagemonth @SAHM_UK |
Mark @longcovidman
3K Followers 5K Following On pause: management consultant, tech founder & powerlifter. Follow for smart answers to long cov*d as I find them
Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne
Brad @Bradgolf1216
3K Followers 2K Following Bachelor of Biological Science Degree. #LongCovid #TeamAutoantibodies #Bc007. Any tweet is my opinion and not medical advice. Check out my podcast on Spotify
BonnieHorace @YSGm21P1FkcMw
0 Followers 300 Following
Daniel Frailey @DanFromChicago
223 Followers 970 Following Supporting subscription brand Growth Marketers @iwanttojot Supporting Chief Revenue Officers and CROs-in-waiting @uchicago
Rex Wiggins @RexWiggins12
2K Followers 5K Following Career Venture Capitalist/ private investor. M&A biotech
Shese @Shese129038
44 Followers 2K Following
Alexandra Alvida @Aelvidra
66 Followers 176 Following very severe ME CCI EDS mcas, insta: @alekpalek Gofundme: https://t.co/op7gGeiInu ⚠️please help if you can⚠️
Bruce @5711bruceBruce
5 Followers 7 Following
Melissa V @MelissaVisMe
706 Followers 1K Following Survivor of postvac. In 2 U medical studies. 7 months in remission w/ diet & generic supps. Pro-freedom of speech & science. Not medical advice. RFKjr 2024
Pauletta Piscitello @PaulettaPi25353
40 Followers 5K Following
JillShaw @aiUYe4CiMB4rN2
234 Followers 4K Following
Sarah Lopez @SarahLopez54875
8 Followers 709 Following
Avril Lindsay Dennis @Avrillindsay
60 Followers 660 Following
Catrice Heller @catri_helle
76 Followers 5K Following
Tionosl @tionosl83006
4 Followers 220 Following
Neslea @Neslea212630
0 Followers 350 Following
Juan Penaloza @J_P_28
2K Followers 1K Following
AngelofHope58 @AngelaHope58
8 Followers 31 Following 2020 Covid Survivor, Advocate for Long Haul Covid and PICS. Survived being on life support, induced coma and being paralyzed from neck down. All from Covid.
Jessi @bolinjessi12
156 Followers 3K Following
Alina Bryer @AlinaBryer6880
37 Followers 5K Following
RobertaSenior @568UNKv0hYy9u
3 Followers 282 Following
Second Foundation @oldhorse_jordan
5K Followers 6K Following Heal long covid, long vax syndrome, autoimmune diseases, dysautonomia, ME/CFS, etc. The healing process is like miracles in the Bible.
Prof Julia Lawton @Prof_J_Lawton
1K Followers 1K Following I am not here to self promote; I just want to connect with like-minded people who take (long) covid seriously and to keep up to date with the evidence base
Lelah Ramsier @LelahR35302
60 Followers 5K Following
LindaVogt @6oGD6gVCT01OS39
2 Followers 325 Following
M @ljigen369
28 Followers 460 Following
Happy Elshohdi @Happy_elshohdi
192 Followers 477 Following
Milan Graniero @MilGranier
66 Followers 5K Following
LongLonghauler @sketchingwitht
130 Followers 205 Following
Equal Vision @EV_Merseyside
1K Followers 6K Following Our work is community-driven. We're Liverpool's independent youth research & policy body. Peer-led support for multiple morbidities is our other priority
Leann Whitaker @LeannWhita61639
79 Followers 5K Following
JoEmerson @ioe24n36y3E4Lb
0 Followers 291 Following
Sleep like a fucking .. @KateT21980262
12 Followers 57 Following 'We are not wise, and not very kind. And much can never be redeemed.'
NZ @NZ_fund_MECFS
266 Followers 575 Following Anerkennung. Versorgung. Forschung. Jetzt! #OpferDerStaatsgewalt #LongCovid #MECFS #PostVac #NotRecovered #MillionsMissing #BC007 https://t.co/VVu3MaZ2y9
Ayman Fanka @fanka308
110 Followers 598 Following Join us in helping Ayman and his family escape the turmoil of Gaza before the Israeli incursion on Rafah. Ayman, a devoted father, is tirelessly seeking assista
G R A C E 🌸 @withgrace___
90 Followers 292 Following 🥀 severe ME/CFS mama to baby son ❤️ heart full, body broken 🌻 INFJ
Nicole #KeepMasksInHe.. @chronicoley_me
170 Followers 1K Following PhD in biomedical physics. Disabled, chronically ill: endometriosis, severe ME/CFS, probably more. Mixed race, acespec, avid knitter, former dancer.
Kasey Fessenden @k_fessen
84 Followers 5K Following
Harry van Gerven @drenrettiwt
249 Followers 890 Following @drenrettiwt.bsky.social Born @ 335.42 ppm CO2 #LongCovid
Eveliina @hevehuve1
560 Followers 775 Following Caught in a limbo with #COVID-19 and aftermath since the beginning of the pandemic. Physiotherapist, dreaming of hiking and freedom from #Longcovid.
Princess, The Tower @APainPrincess
28K Followers 27K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Joel Nakamura @JoelTHpostHack
21 Followers 112 Following
Safe Workplaces Actio.. @Ventil8_Justice
86 Followers 658 Following 🚀 S.W.A.G | Ensuring SARS-Free workplaces by demanding indoor CO2 monitoring, positive-pressure ventilation, CR Boxes, and cutting-edge disinfectant lighting💡
Becky A Robertson @AnciraBecky
4K Followers 6K Following Survivor. Proud mother. Teacher. Philanthropist. Activist. Trying to make a difference. #maskup #longcovidawareness #LCDC #March15 #ValueCognition
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
GeoCK @GeoEduOne
6K Followers 955 Following MSc | AD | ICL, UCL, UOB alum | Geoscientist, cyclist, adventurer, athlete, dad | Sidelined after a “mild” Covid infection, Dec 2021 | #LongCovid #FBLC #Climate
Dr. Alice 💕 @calirunnerdoc
26K Followers 1K Following Cardiologist,Advocate,🏃🏼♀️,✍🏻,Posts≠medical advice. NO DMs for med advice,SARS-CoV-2=persistent vascular bomb💣.Views expressed are my own,not my employers.
Shaney Wright @ShaneyWright
15K Followers 494 Following @WestHam Fan ⚒ | Accidental Centrist; Pro-Pragmatism/Science; Anti-Dogma. Fighting for Biomedical Research into, and Awareness of, #LongCovid. #FBLC
Brian Fog @useless_priest
6K Followers 5K Following Struggling to live, laugh, love in the midst of a global mass disabling event | #LongCOVID Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Morgan Stephens @morganstephensa
14K Followers 2K Following around the White House @business, poet TILT (Aldrich Press 2024), previously @cnn, #LongCovid
Ippokratis @IpLongCovid
7K Followers 1K Following Physical education and sport science BSc #LongCovid
Myra Batchelder @myrabatchelder
19K Followers 11K Following Health Policy & Advocacy. @COVIDAdvocacyNY @COVID_Advocacy. #SRHRJ #VaxPlus #KeepMasksInHealthcare. @Harvard @SarahLawrence alum. She/her
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Covid Solidarity @CovidSolidarit1
13K Followers 4K Following We are people, not numbers. Across the world 🌎 “Alarm bells only ring in the ears of the powerless.”. “Normalisation is the disguise of complacency.”
Dana Parish @danaparish
37K Followers 4K Following Bestselling Author: “CHRONIC" / SONY songwriter/ Podcaster/ NYC/ @BayAreaLyme board/ N95s/ TREAT EARLY/ END GoF / anti-virus/ think 4 yourself/ @BiosafetyNow
T@Sunset @TeiaSunset
6K Followers 6K Following #LongCovid 2003/2020 / Cancer survivor. 🎵🎶Humming music, writing under trees watching sunsets.🏝️😻
Reshma Ramachandran @reshmagar
3K Followers 3K Following @YaleMed Assistant Prof, @Yale_CRRIT Co-Director, @UAEM NA Board Prez, @Drsforamerica FDA Task Force Chair #access2meds #patientsbeforeprofits #openaccess
Steph @ladycazimi
14K Followers 504 Following Astrologer at large. Moon woman, court jester, Venus groupie. Book a reading↓
Alexis Cutchins, MD @alexiscutchins
381 Followers 139 Following Cardiologist with Emory Healthcare specializing in women and heart disease.
Prof Julia Lawton @Prof_J_Lawton
1K Followers 1K Following I am not here to self promote; I just want to connect with like-minded people who take (long) covid seriously and to keep up to date with the evidence base
NZ @NZ_fund_MECFS
266 Followers 575 Following Anerkennung. Versorgung. Forschung. Jetzt! #OpferDerStaatsgewalt #LongCovid #MECFS #PostVac #NotRecovered #MillionsMissing #BC007 https://t.co/VVu3MaZ2y9
Jason S @StilingJason
325 Followers 434 Following Fitness freak to moderate ME/CFS last 14 years. 2.5 years severe, Post-Covid.
Mike's EU Maras for M.. @MikesEUmaras
2K Followers 2K Following Marathons in 31 Euro countries for @invest_in_me & ME/CFS research £50k. Next: Albania 20.10.24🇦🇱 https://t.co/O7zyuApvJW
Lara Crowther @fillthewhole
5K Followers 5K Following BSc, MRes Neuroscience, BMedSci, PhD Med Ed (& life) on hold due to covid caused #longcovid #pots #mcas #adenomyosis #hypothyroid Ex PT & yoga teacher 😷
Luis Castañeda @Luis_Casta220
359 Followers 574 Following MMJ | QJA Co-President | Executive Producer @NNN_News | Formerly @medillonthehill @thedailynu | NU ‘26
Robin McNelis Physiot.. @robinthephysio
151 Followers 120 Following Cardiorespiratory Physiotherapist working in private practice with a special interest in Breathing Pattern Disorders and Long Covid Recovery
Potsie_Momma @PotsieMuma
103 Followers 183 Following Advocate for those with #POTS One Day At A Time #ProperDiagnosis #TimelyTreatment
Tammy Wilshire @TammyWilshire1
9 Followers 6 Following
Joe Chapman @jreidchapman
618 Followers 187 Following palliative care chaplain • minister of word and sacrament @presbyterian • poems @BestAmPo @BostonReview • chronically ill #MCAS #EDS #MECFS • @ManUtd
Scott Daniska @scott_scientist
349 Followers 212 Following Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together! #ChronicIllnessAwareness
Stephen Burd @StephenBurd2
2K Followers 802 Following Senior Writer and Editor in the Ed Policy Program at New America, a nonpartisan think tank. My tweets are my own and don't reflect the views of my employer.
Jalen Brown @itsJalenB
6K Followers 5K Following Congressional Health Care Reporter @InHealthPolicy | Past: @BGOV, @CNN, @Forbes | @NABJ | ❝The people must know before they can act...❞ — Ida B. Wells
Ariana Eunjung Cha @arianaeunjung
4K Followers 260 Following Staff Writer @washingtonpost | Former correspondent in Shanghai, Baghdad, San Francisco | Raised in La Paz, Manila and Washington http://t.co/or67MJmweR
Britt 🖖 @BrittGratreak
7K Followers 8K Following 🌈♿ Very stubborn #FirstGen/low-income MD/PhD student, proud community college alum, open book. All posts reflect personal values & ethics, not my institution's
Amy Marie @ravingcoeliac
316 Followers 1K Following Living that gluten free life since 2012. Dysautonomia patient before Covid made it famous. 🚫🌾🍞🥖🥨🥞🥪🍕🌯🍝🍰🥙🥟🥧🍪🍺 🆗🍎🍐🍊🍋🍌🍉🍇🍓🍒🍑🍍🥥🍅🥑🥦
Daryl @Daryl_1964
69 Followers 48 Following Animal Lover, CHI-SHI Owner. Child Sexual Abuse Survivor. Long Covid Sufferer. Retired Living with PTSD, Anxiety, Depression and Never Ending Nightmares.🍁
Siyab Panhwar, MD @DrSiyabMD
9K Followers 2K Following Interventional cardiologist. Country doc. Passionate abt heart disease prevention/education on social media (600k TikTok followers). Views own. 🇵🇰 🇶🇦 🇺🇸
Ida Bergstrom, MD @DCDoc33
4K Followers 285 Following Internal medicine MD, MBA; special interests in primary care, preventative health. weight loss medicine, vaccines; perpetual learner
Robin (Kids & I are m.. @robinsoped201
445 Followers 3K Following SARS 2 COVID is a vascular neurotropic disease. It is NOT the flu.20 yrs #MECFS a Disabling Multisystemic Disease
Nina @ninamarlenee
69 Followers 185 Following 29. interior architecture, marketing, photography. life paused bc of long covid; me/cfs.
B Treidler @EBT37506834
89 Followers 127 Following Hiker, runner, and cyclist. Pretty much gone due to ME/CFS worsening 2019. Disabled since then. PhD from Cal and a career in engineering and finance.
Jamie Grettum @Jamie_Grettum
948 Followers 1K Following Salesforce Certified Admin, Salesforce Instructor, User Adoption Expert. Sponsor of Jr. Admins. SFDC training videos on Linkedin. 2x Dreamforce speaker
Hollie-Anne Brooks �.. @HollieAnneB
9K Followers 5K Following Award winning freelance journalist & broadcaster. Disability/politics/travel. Living a beautiful slow life with ME/fibro ✨ Tortured Poet 🤍 LPool N2 💜 SAFC ⚽️
Laura Elliott @TinyWriterLaura
14K Followers 2K Following Writer, maker, chronic illness incubator. Disabled journo. Words in @guardian, @MetroUK, @theipaper, @BylineTimes etc. Rep’d by @PortyLiterary
Marissa D. Barrera @mdb2
17K Followers 3K Following Deputy Health Policy Director, U.S. Senate Committee on Health, Education, Labor, and Pensions
Fran Haddock @franhaddock_
566 Followers 358 Following Spoonie 🥄 Activist ✊ Vet 🩺 (she/her) Currently bedbound with severe ME + Long Covid (more active on IG)
Briana Bierschbach @bbierschbach
22K Followers 3K Following Politics and govt reporter @StarTribune. Adjunct @HHHSchool. Former @MPRnews @MinnPost @AP @mnspj. [email protected]
Senator Lindsey Port @Lindsey_Port
5K Followers 449 Following Mom, wife, progressive organizer and Senator for Minnesota Senate District 55. Chair of Housing Finance and Policy Committee. she/her/hers
Claudia Efstathiou @ClaudEfstathiou
338 Followers 276 Following Postdoc researcher investigating the mechanisms of Long Covid @imperialcollege
Between Thieves @BetweenThieves7
449 Followers 291 Following Doulos of Christ. Husband of One. Father of Five. Philosopher. Theologian. Realpolitik.
European ME Alliance @EUROMEALL
1K Followers 185 Following The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME)
chimp @chimpwithagshot
13 Followers 60 Following #longcovid March 2020 learning to dance in the fire
Andrew McCarthy @AJamesMcCarthy
284K Followers 455 Following Exploring the universe from a backyard in Arizona. Get on my mailing list before my next print drop 👇
Théoden Janes @theodenjanes
3K Followers 187 Following 5x Boston Marathon qualifier. 2x Ironman finisher. 1x dad. Oh, I also get paid by @theobserver to write interesting stories and (sometimes) cover entertainment.
Angelyn Chaney @byfaith2011
24 Followers 159 Following
drklausner @drklausner
3K Followers 441 Following Former CDC Medical Officer, Former county Health Official, Current USC Public Health research physician, ID specialist, Global Citizen, Independent
Stephanie Winn @sometherapist
33K Followers 3K Following Podcast Host @Some_Therapist ✧ Senior Fellow @DoNoHarm ✧ Rep @2022Affirmation ✧ ROGD Parent Consultant ✧ Therapist pausing due to long covid ✧ Book a meeting 👇
Laura @foreign_laura
3K Followers 2K Following actor, writer, perpetual foreigner • she/her 🇨🇦🇸🇰 @BerlinBuyers 🖤
Jenna Christoforou @cayleyc
358 Followers 744 Following
Disabled Doctor @DisabledDoctor
9K Followers 851 Following PhD. Fired from a postdoc for being disabled. Filed w/EEOC August 2021 — still waiting. Gamer. Gardener. Clinician-Scientist. EDS. ADHD. CCI. 🏳️🌈
Dan Bader @dan_bader106
309 Followers 634 Following formerly a lot of things, now here mostly just for #longcovid and #GoAvsGo
LG @a_progressives
438 Followers 2K Following 22 with #MECFS #MCAS & #POTS since 2020 #PwME Pass #MedicareforAll 🩺There’s still time to urge Congress to include #LongCovid in the FY25 budget, but we need your help! Please take a minute to send a prefilled letter backing $1.2B+ in funding 👇 actionnetwork.org/letters/long-c…
I have shown before a graph of monthly walking while I was on Ampligen but I haven't shown a weekly graph. Here it is, you can see the gigantic difference. Once September started I was feeling much better. Trial concluded in October.
@Ramyisback We should form an organization that could conduct it's own clinical trias of ampligen. Can't trust the pace of general health institutions to bring these life saving meds to market on time!!!
@GuyTalksFinance People act like this isn’t a big deal and isn’t weird, but it really is. It’s creating a culture where kids are being seen as an inconvenience and major burden. Weddings are a family based event, and our kids are the future of the family. It’s your event and your choice 100%,…
@doyouseem_e_now What’s wild to me is we don’t have good diagnostics for neuroinflammation
@Gmwetz Some parts may or may not appeal to everyone, but the significance of the whole package is way greater than the single parts. You guys are accomplishing something huge. Thank you!
I just wrote a @LCMoonshot letter: Long Covid research funding in the FY25 budget. Write one here: actionnetwork.org/letters/long-c…
PEM is NOT just malaise/exhaustion/symptoms after exertion. PEM IS A DETERIORATION IN THE VERY DISEASE PROCESS THAT DRIVES #MECFS !!! This is why it is so dangerous and can make you PERMANENTLY more disabled!!! Cancer doesn’t spread/PwMS don’t loose more myelin from exertion!
Going to take a couple of weeks off Twitter as I'm seeing some improvements with LDN and TUDCA. Going to double-down on rest and repair efforts and see if less time on this app helps me further. Will be thinking of you all and see you soon. 🩶🫂🪻
These are exactly the sort of immunotherapies we need trialled *without further delay* for #LongCovid. They should've been trialled already in fact. Need to stop messing about with weak, symptom-based or lifestyle focused interventions. Dr Avindra Nath is bang on the money here.
Which makes it all the more flummoxing that governments aren’t throwing more money at the problem, or treating it with any sense of urgency. Or indeed talking about it at all.
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 impact.economist.com/perspectives/h…
Neuroscientists are carping on about the benefits of early morning light for sleep. I've spent the last 2 months basking in the cold early morning sun. It has made. No. Difference. I slept better on the day it rained & I stayed inside. #MECFS sleep is a whole different kettle.
@drvolts He is addicted to ketamine and makes poor decisions
@lifeanalytics I’ve got MECFS. Walked a bit for 9 days out of 16 (after adding ivabradine). Felt great for 16 days. Then crash to severe out of the blue, day 4 PEM so far, affecting all functions. Contrast: relative’s post cancer fatigue is *only* in irradiated muscles. Nothing like PEM.
@lifeanalytics Do those with "chronic cancer related fatigue" including PEM fail to meet MEcfs criteria in any way?
@lifeanalytics Makes sense when someome argues that a brain retraining recovery story is real Me just because “they had PEM” Good to know that the chances that they had something completely different with this information is more likely
@lifeanalytics Well this sounds like nonsense. PEM is a very specific, unusual and devastating symptom. If people with cancer really had it, we wouldn't be hearing about it for the first time in 2024.
It seems strange to claim post-exertional malaise in other patient groups without carrying out two-day cardiopulmonary exercise tests on these other patient groups. Why claim post-exertional malaise without testing it?
Please note: Apart from #MECFS and #LongCOVID, Post-exertional malaise can be found in cancer-related fatigue, gulf war illness syndrome, Post-treatment Lyme disease syndrome and possibly other syndromes. We need to further investigate this key symptom and common mechanisms.
@lifeanalytics 3/3 I have never seen in anyone I know with a different fatiguing condition an episode of "PEM" that led to being unable to speak, unable to make the simplest of choices or decisions, unable to tolerate the slightest light or sound.
@lifeanalytics 1/3 To me, PEM is distinct. I have observed at close hand my mother's cancer-related fatigue and I had Lyme for 28 years before it was diagnosed and treated successfully. What is unique to PEM and thus to ME/CFS? Plenty. Delayed onset, prolonged recovery, all symptoms worsen, ...
Trends for United States
You might like
