Science of Complex Chronic Illnesses @ComplexCI
Science of fatiguing complex chronic illnesses with post-exertional #neuroimmune exhaustion (#PENE) e.g. #MECFS #PAIS #LongCovid #dysautonomia #MCAS (EN ES فا) Planet Earth Joined November 2021-
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🚨 Over 60 leading international researchers are raising their voices! ME/CFS & Long COVID affect millions – but there is too little research & no causal treatments. 👉 Find out which researchers are involved and what exactly they are demanding 🔗 declaration.mecfs-research.org
“A growing number of scientists believe the SARS-CoV-2 virus may be subtly altering our immune systems. If correct, their hypothesis will change how we understand everything from RSV to shingles to sepsis.” “It’s certainly impacting our immune health & probably.. overall health”
Being disabled/chronically ill means constantly balancing two impossible tasks: convincing the state/doctors that you’re “disabled/sick enough” to deserve help and convincing everyone else that you’re “well enough” to be worth keeping around.
1) More than 80% of patients with Long Covid and post-COVID-19 vaccination syndrome report experiences of psychologization and stigma. This comes from a large German study with more than 2000 participants.
This is important. Chronic inflammation (and possibly chronic infection) of "epipharynx" and the tonsils, i.e, "The Waldeyer's Ring", is one of the most understudied immunological mechanisms in the pathophysiology of post-infection chronic illnesses like #LongCovid and #ME/CFS.
This is important. Chronic inflammation (and possibly chronic infection) of "epipharynx" and the tonsils, i.e, "The Waldeyer's Ring", is one of the most understudied immunological mechanisms in the pathophysiology of post-infection chronic illnesses like #LongCovid and #ME/CFS.
It’s very frightening for many to even consider that #COVID infections are causing neurological damage but there are scans now. It’s impacting the frontal lobe. This is going to change society. The sooner we confront this the better or the damage will continue.🧵
▶️ Today at 3:00 pm ET #COVIDisnotover #Vaccinate #LongCovid Register: us06web.zoom.us/meeting/regist…
▶️ Today at 3:00 pm ET #COVIDisnotover #Vaccinate #LongCovid Register: us06web.zoom.us/meeting/regist…
@pasta_hastam دستورالعمل واکسنهایی مثل #آنفلوانزا معمولا هر سال به‌روز‌رسانی می‌شه. آخرین دستورالعمل رسمی مراجع آمریکایی این بوده: "#واکسیناسیون سالانه تمام افراد بالای ۶ ماه سن" جزئیات (تعداد دوز، زمانبندی، تایپهای مختلف واکسن برای سنین مختلف و بیماریهای زمینه‌ای): cdc.gov/flu/hcp/acip/i…
I was a neuroscientist doing sleep research for NASA. I ran chronobiology studies at Northwestern. My thesis was on circadian rhythms and light cycles. I’ve helped hundreds of patients improve their sleep. I can hack circadian rhythms like a damn wizard. And I STILL wake up at 3…
The clinical manual of infection-associated chronic illnesses, e.g. #LongCovid, #ME/CFS, elaborates on the mechanisms, the diagnosis, and the treatments, intersecting immunology and several medical specialties. It's a summary of 100s of papers and a must-read for every clinician.
The clinical manual of infection-associated chronic illnesses, e.g. #LongCovid, #ME/CFS, elaborates on the mechanisms, the diagnosis, and the treatments, intersecting immunology and several medical specialties. It's a summary of 100s of papers and a must-read for every clinician.
1/ Millions are living with long-term illness after infection, often without answers. Today, we’re launching the USA's first clinical manual for treating Infection-Associated Chronic Illnesses (IACIs). #LongCOVID #MECFS #Lyme 🔗 Read the announcement: mountsinai.org/about/newsroom…
Diagnosis and characterization of people with #MECFS (vs controls) using circulating cell-free RNA, indicative of immune system dysfunction and pro-inflammatory cytokine signaling pnas.org/doi/10.1073/pn…
@meighanstone @LCCampaign Thank you. But, industry sponsors should try make it possible for anyone to watch the talks. Free dissemination of this information is necessary- for consumption by healthcare professionals as well. (Keep in mind- medical trainees often don’t have extra funds either)
@meighanstone @LCCampaign Thank you. But, industry sponsors should try make it possible for anyone to watch the talks. Free dissemination of this information is necessary- for consumption by healthcare professionals as well. (Keep in mind- medical trainees often don’t have extra funds either)
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵
🔬Simplified breakdown of the Decode ME results: DecodeME identifies 8 gene regions linking immune response, mitochondrial energy control, and brain-cell signalling to ME/CFS Genomic evidence the disease is biological. Let’s breakdown everything in depth 🧵
There is a rather large discussion happening on my My Several Worlds FB page about the stages of #MECFS. I'm a moderate to severe #pwME. Here's a graphic that explains mild, moderate, severe, very severe. The sinkhole represents how LIFE SHRINKS WITH MECFS #SevereMECFS
مقاله JAMA Netwotk: بیماران #ام‌اس ۱۵ سال **قبل از تشخیص** از انواع علائم شکایت دارند. این شرایطیست که بسیاری از بیماران مبتلا به بیماریهای مزمن پیچیده سالها پیش از تشخیص تجربه می‌کنند. #ام‌ای #MECFS پزشکی امروز نیازمند یافتن بایومارکرهای تشخیصی پیش از تشدید بیماریست.
5-page post-exertional malaise (PEM) fact sheet from Science for ME. s4me.info/docs/PEM_Facts…
Can we please get mandatory masking back on cancer wards and healthcare settings now? We know COVID can be oncogenic. We know it’s a much higher risk to those who are immune compromised. Yet healthcare workers won’t mask around cancer patients & many have died. Mask up!
Can we please get mandatory masking back on cancer wards and healthcare settings now? We know COVID can be oncogenic. We know it’s a much higher risk to those who are immune compromised. Yet healthcare workers won’t mask around cancer patients & many have died. Mask up!
The only correct answer is Long COVID The same phenomenon has been observed in Europe and UK in the same exact time frame.
The only correct answer is Long COVID The same phenomenon has been observed in Europe and UK in the same exact time frame.
Suzaku has Long Covid... @Suzaku_is_tired
1K Followers 2K Following Long Covid / MECFS patient since March 2021 • 🇪🇦🇨🇵🇬🇧 •
HealthCommunication @Comm_in_Care
4K Followers 6K Following Collaborating to promote skilled communication and attention to values for safe and compassionate health care. Since 2011. #RelationshipCentred
T @Yrrepmot
870 Followers 2K Following Barely living with #MECFS, and #ComplexChronicIllness including #PAIS #IACCs #CIRS #EDS #POTS #PSSD #TooTiredToThink #MUFC #Socialism
Mama Bah @MamaBah1287442
55 Followers 7K Following
maude @sheisartmoney
43K Followers 24K Following abstract painter • collage artist Be-bop • Dada • Pyramids • Fela #TransRights #LongCovidRuins
Jenny Cavalot @jennycavalot
279 Followers 1K Following Director - Operating Model Development, Health Education England. Partner, Mum, Stepmum-ish, Neurodivergent, All views my own.
destiny unknown @Wyndhamville
493 Followers 1K Following Held hostage by #ME 24 yrs. Very Severe, bedbound but clinging on. Aus needs updated ME Diagnostic & Treatment Guidelines now.
Dr Nicola Clague-Bake... @ClagueNjc36
4K Followers 2K Following PT researcher/Senior Lect @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/fatigue/ME/Longcovid/EDI/all views my own she/her
Nandini, MPH @NandiniB_06
364 Followers 378 Following 🇨🇦🍁Mother. Children's Long Covid Advocate Founder, Children's Long Covid Network (CLCN) Outspoken views on Children's Long Covid health & research
My Long Covid Advocac... @myLCadvocacy
2K Followers 3K Following I aggregate, curate and post Infectious Disease Science, Research, Stories & News
Eun @kestner_eun39
265 Followers 3K Following
J @jennyblue333
518 Followers 5K Following
Julie Sullivan @CureLongCovid
5K Followers 3K Following Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate (she/her) 💕
KerenL @KerenLL
1K Followers 5K Following Freelance writer. Regular contributor to the Guardian. Lover of open water swimming. And of Greece. Likes pools that aren't kidney-shaped and far horizons
María Richardson @_diatoma
3K Followers 6K Following ES-EN. I write, I teach, I draw plants. Chronically ill en la Ciudad de México. #MyalgicEncephalomyelitis #GreatestMEdicalScandal
Kalagha کلآغا @kal_agha
42 Followers 40 Following در این اکانت فقط به روبنا رسیدگی میشود. | دستشویی برای مشتریان است. لطفا سوال نفرمایید.
Padamos @DurkheimJunior
15 Followers 148 Following
Mehdi Shoghi @MehdiShoghi
637 Followers 4K Following Marx on Money, Money isn't everything; it's the only thing. H.P.Minsky Macro-financial analytics consultant
Shohreh @tamaamtamaa
910 Followers 1K Following این چه جنگی است، که ما با اطمینان از شکستمان، در آن شرکت میکنیم؟
Saman Sarraf 😷 @SamanSarraf
939 Followers 528 Following researcher, cancer immunotherapy. pro labor unions and health care for all. interested in too many subjects, e.g. neuroimmune metabolic pathologies. #pwME
ME/CFS Science @mecfsskeptic
4K Followers 462 Following In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
T @Yrrepmot
870 Followers 2K Following Barely living with #MECFS, and #ComplexChronicIllness including #PAIS #IACCs #CIRS #EDS #POTS #PSSD #TooTiredToThink #MUFC #Socialism
Suzaku has Long Covid... @Suzaku_is_tired
1K Followers 2K Following Long Covid / MECFS patient since March 2021 • 🇪🇦🇨🇵🇬🇧 •
HealthCommunication @Comm_in_Care
4K Followers 6K Following Collaborating to promote skilled communication and attention to values for safe and compassionate health care. Since 2011. #RelationshipCentred
PolyBio @polybioRF
13K Followers 2K Following 501(c)3 transforming how #LongCovid, #ME/CFS & Lyme+ are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
Simmaron Research @RedefiningMECFS
4K Followers 412 Following Official Twitter account for Simmaron Research, a non-profit scientifically redefining ME/CFS. Visit our site to learn more.
davidtuller @davidtuller1
11K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Open Medicine Foundat... @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Dr Nicola Clague-Bake... @ClagueNjc36
4K Followers 2K Following PT researcher/Senior Lect @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/fatigue/ME/Longcovid/EDI/all views my own she/her
CrunchME @wecrunchme
1K Followers 42 Following Data-informed advocacy to accelerate research on ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs) 💙
maude @sheisartmoney
43K Followers 24K Following abstract painter • collage artist Be-bop • Dada • Pyramids • Fela #TransRights #LongCovidRuins
Artie Vierkant @avierkant
8K Followers 1K Following @DeathPanel_ | wrote Health Communism w/ @realLandsEnd (Verso 2023): https://t.co/Ybfrw73ff9 | #MedicareForAll | https://t.co/3Ho4AGRtmk
Emmanuel @ejustin46
17K Followers 811 Following Passionate citizen of science. Living in Jakarta. More about our personal life in Indonesia on Instagram @emmanuel.0862
Jenny Cavalot @jennycavalot
279 Followers 1K Following Director - Operating Model Development, Health Education England. Partner, Mum, Stepmum-ish, Neurodivergent, All views my own.
destiny unknown @Wyndhamville
493 Followers 1K Following Held hostage by #ME 24 yrs. Very Severe, bedbound but clinging on. Aus needs updated ME Diagnostic & Treatment Guidelines now.
Nandini, MPH @NandiniB_06
364 Followers 378 Following 🇨🇦🍁Mother. Children's Long Covid Advocate Founder, Children's Long Covid Network (CLCN) Outspoken views on Children's Long Covid health & research
My Long Covid Advocac... @myLCadvocacy
2K Followers 3K Following I aggregate, curate and post Infectious Disease Science, Research, Stories & News
Neurologist Mom @NeurologistMom
9K Followers 281 Following A neurologist, M.D., mother of a 17-year-old with #Lupus #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
Julie Sullivan @CureLongCovid
5K Followers 3K Following Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate (she/her) 💕
Sue [email protected]... @inkblue01
8K Followers 1K Following Collection of papers, videos and images on #LongCovid
Beth Pollack @ChronicResearch
160 Followers 5 Following Research Scientist @MIT🔬Leads Research on Chronic Illnesses & How They Connect🕵🏻♀️ME/CFS Long COVID Lyme POTS EDS MCAS & Co | Env Health🌱Advocate & Advisor
Christoph Ströck @cstroeckw
8K Followers 603 Following Soon, people will look back in disbelief at what has happened to patients with ME/CFS | Godspeed 🙇🏼
KerenL @KerenLL
1K Followers 5K Following Freelance writer. Regular contributor to the Guardian. Lover of open water swimming. And of Greece. Likes pools that aren't kidney-shaped and far horizons
longcovidstudies @lcstudiesdotnet
325 Followers 0 Following Long Covid Studies makes it easy to find Long Covid research studies near you.
Adam @ABrokenBattery
8K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Stephanie Grach MD MS @GrachStephanie
1K Followers 834 Following @MayoClinicGIM Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers
UCSF Bakar ImmunoX In... @immunox
1K Followers 232 Following First-in-class program nucleating #immunology research at @UCSF to treat human diseases Please follow and like: https://t.co/xw6ot4njQo
Michael VanElzakker @MBVanElzakker
10K Followers 268 Following Neuroscience researcher @MGHMartinos / @HarvardMed and @PolyBioRF, researching #MEcfs, #LongCOVID, & #PTSD. (all opinions are my own)
Amy Proal, PhD @microbeminded2
29K Followers 5K Following Microbiologist at @polybioRF: studying how persistent pathogens drive inflammaging, mitochondrial dysfunction & cognitive decline #longcovid #lyme #alzheimers
Michael Peluso, MD @MichaelPelusoMD
5K Followers 73 Following Infectious disease doctor @UCSF. #LongCOVID researcher. #HIV clinician and #HIVcure researcher.
Letícia Soares, PhD @leticiasaurus
2K Followers 2K Following 1st wave Long Covid fighter, pwME, hEDS. Co-lead and patient researcher @patientled. She/Her/Ela. Rarely here | @leticiasaurus.bsky.social
Eric Topol @EricTopol
678K Followers 605 Following physician-scientist, author of SUPER AGERS https://t.co/ZEdooyyJpP and Ground Truths: https://t.co/YhatcBT0hA
Hiroshi Yasuda (保�... @Yash25571056
38K Followers 579 Following Scientist & Professor (科学者&教授). Tweet is a soliloquy based on my personal views (ツィートは個人の見解に基づく独り言です).
#MEAction Network @MEActNet
19K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Dana Parish @danaparish
41K Followers 5K Following The Dana Parish Podcast 🎙️ : https://t.co/FSjDWcQhmY Bestselling Author 📖: https://t.co/mSsjINOx7t 📰: https://t.co/Oi3iDXQdkd
Alba Azola, MD @AzolaAlba
3K Followers 858 Following Passionate about treatment & research of ME/CFS and LC. Chronic illness deserves chronic curiosity. @RehabHopkins and @HopkinsKids. My opinions are my own.
Hopkins ME/CFS & Rela... @HopkinsMECFSC
561 Followers 91 Following Our goal is to provide outstanding clinical care to patients with ME/CFS & related disorders and improve our understanding of these illnesses through research.
María Richardson @_diatoma
3K Followers 6K Following ES-EN. I write, I teach, I draw plants. Chronically ill en la Ciudad de México. #MyalgicEncephalomyelitis #GreatestMEdicalScandal
Kalagha کلآغا @kal_agha
42 Followers 40 Following در این اکانت فقط به روبنا رسیدگی میشود. | دستشویی برای مشتریان است. لطفا سوال نفرمایید.
LongCovidPharmD @organichemusic
35K 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
Dysautonomia Intl. @Dysautonomia
26K Followers 351 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
Putrino Lab @PutrinoLab
36K Followers 399 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Resia Pretorius @resiapretorius
28K Followers 259 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Prof. Akiko Iwasaki @VirusesImmunity
213K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII
Hannah Davis @ahandvanish
56K Followers 4K Following Research, algorithmic music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
Patient-Led Research ... @patientled
26K Followers 661 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
LCAP (Long Covid Acti... @LongCovidAP
4K Followers 213 Following LCAP is a united, diverse force of non-partisan individuals taking action to end the Long Covid crisis through awareness & government accountability.
Long Covid Moonshot @LCMoonshot
3K Followers 333 Following 18 million Americans suffering with Long Covid. ZERO treatments. We need a moonshot for Long Covid research funding!Trends for United States
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