PolyBio supports scientists studying #complexchronicillness around the globe on their #LongCOVID, #MECFS and #Lyme+ research. Check out their work! 👇🏻
go.bsky.app/GiFZDen
go.bsky.app/GiFZDen
December 3, 2024 at 11:53 PM
PolyBio supports scientists studying #complexchronicillness around the globe on their #LongCOVID, #MECFS and #Lyme+ research. Check out their work! 👇🏻
go.bsky.app/GiFZDen
go.bsky.app/GiFZDen
For those newly joining Bluesky:
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
November 12, 2024 at 3:57 PM
For those newly joining Bluesky:
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
For those newly joining Bluesky:
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
November 12, 2024 at 11:24 PM
And here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
November 16, 2024 at 10:41 PM
And here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
Anlegen von Fake Accounts, finde ich übrigens eine Sache, die gar nicht geht. Nirgendwo. Da habe ich Zero Verständnis für. Gerade weil es hier um das Überleben vieler schwer Kranker geht. Damit ist nicht zu spassen, schon gar nicht mit Fake Accounts #ComplexChronicIllness
September 2, 2023 at 12:47 PM
Anlegen von Fake Accounts, finde ich übrigens eine Sache, die gar nicht geht. Nirgendwo. Da habe ich Zero Verständnis für. Gerade weil es hier um das Überleben vieler schwer Kranker geht. Damit ist nicht zu spassen, schon gar nicht mit Fake Accounts #ComplexChronicIllness
If you're able - this should be a fantastic symposium.
Can't believe how much I miss online meetings/webinars 🥴. #MECFS #LongCovid #NEISvoid #ComplexChronicIllness #IACC
Can't believe how much I miss online meetings/webinars 🥴. #MECFS #LongCovid #NEISvoid #ComplexChronicIllness #IACC
For anyone interested in complex chronic illness, I highly recommend attending the FREE PolyBio Fall online Symposium on Friday Oct 20 from 12:30 - 5 pm ET. You can check out the speakers and talks here, and register: polybio.org/polybio-fall...
October 6, 2023 at 11:16 AM
If you're able - this should be a fantastic symposium.
Can't believe how much I miss online meetings/webinars 🥴. #MECFS #LongCovid #NEISvoid #ComplexChronicIllness #IACC
Can't believe how much I miss online meetings/webinars 🥴. #MECFS #LongCovid #NEISvoid #ComplexChronicIllness #IACC
***Meine Gedanken zum ausgehenden Jahr 2024***
Ich habe dieses Jahr in Bezug auf meinen kleinen Schwerpunkt #PAIS und #complexchronicillness Kolleg•innen kennen und schätzen gelernt, durch deren Expertise und konstruktiven Austausch ich fachlich wachsen konnte.
1/7
Ich habe dieses Jahr in Bezug auf meinen kleinen Schwerpunkt #PAIS und #complexchronicillness Kolleg•innen kennen und schätzen gelernt, durch deren Expertise und konstruktiven Austausch ich fachlich wachsen konnte.
1/7
December 29, 2024 at 3:29 PM
***Meine Gedanken zum ausgehenden Jahr 2024***
Ich habe dieses Jahr in Bezug auf meinen kleinen Schwerpunkt #PAIS und #complexchronicillness Kolleg•innen kennen und schätzen gelernt, durch deren Expertise und konstruktiven Austausch ich fachlich wachsen konnte.
1/7
Ich habe dieses Jahr in Bezug auf meinen kleinen Schwerpunkt #PAIS und #complexchronicillness Kolleg•innen kennen und schätzen gelernt, durch deren Expertise und konstruktiven Austausch ich fachlich wachsen konnte.
1/7
November 22, 2024 at 4:10 PM
Ear-head noises to bursting now. My hair also falls out in clumps, like during chemotherapy. As if my body was poisoning itself.
Everything like that is listed under 'tiredness' in Germany in the guidelines.
#FailureOfHealthPoliticis #ComplexChronicIllness #HellOnEarth 2/2
Everything like that is listed under 'tiredness' in Germany in the guidelines.
#FailureOfHealthPoliticis #ComplexChronicIllness #HellOnEarth 2/2
October 10, 2023 at 7:42 PM
Ear-head noises to bursting now. My hair also falls out in clumps, like during chemotherapy. As if my body was poisoning itself.
Everything like that is listed under 'tiredness' in Germany in the guidelines.
#FailureOfHealthPoliticis #ComplexChronicIllness #HellOnEarth 2/2
Everything like that is listed under 'tiredness' in Germany in the guidelines.
#FailureOfHealthPoliticis #ComplexChronicIllness #HellOnEarth 2/2
3/ Jedes Jahr hört man sich das an, weiss mehr als Ärzte, weil die wissen sowas ja überhaupt nicht. An wen soll man sich wenden mit #CCI #POTS #SmallFiber #MCAS #FQAD #Lyme #Herpesviren #FlagylToxicity #ME #ComplexChronicIllness?
#MECFSFachtagung
#MECFSFachtagung
September 14, 2024 at 11:09 AM
3/ Jedes Jahr hört man sich das an, weiss mehr als Ärzte, weil die wissen sowas ja überhaupt nicht. An wen soll man sich wenden mit #CCI #POTS #SmallFiber #MCAS #FQAD #Lyme #Herpesviren #FlagylToxicity #ME #ComplexChronicIllness?
#MECFSFachtagung
#MECFSFachtagung
For those who missed the brilliant talk with Ed Yong @edyong209.bsky.social
Changing The Narrative #MEcfs #LongCovid #ComplexChronicIllness
www.youtube.com/watch?v=dRrc...
Changing The Narrative #MEcfs #LongCovid #ComplexChronicIllness
www.youtube.com/watch?v=dRrc...
November 3, 2023 at 10:40 PM
For those who missed the brilliant talk with Ed Yong @edyong209.bsky.social
Changing The Narrative #MEcfs #LongCovid #ComplexChronicIllness
www.youtube.com/watch?v=dRrc...
Changing The Narrative #MEcfs #LongCovid #ComplexChronicIllness
www.youtube.com/watch?v=dRrc...
1/2 @taliasmith2021.bsky.social and I spoke this week about #ComplexChronicIllness. I'm so honored and still touched. 2,791 views already. Pls share & watch! Thank you ♥️ #FQAD #MEcfs #LongCovid #LongLyme #MCAS #POTS #SmallFiber #CCI #EDS #LongList #MedicalScandal
www.youtube.com/live/L1dwxz3...
www.youtube.com/live/L1dwxz3...
FLOXED: CHRONICALLY ILL & CHRONICALLY IGNORED – WITH SIBYLLE DAHRENDORF
YouTube video by USA GLOBAL TV ® & RADIO
www.youtube.com
August 14, 2025 at 7:38 PM
1/2 @taliasmith2021.bsky.social and I spoke this week about #ComplexChronicIllness. I'm so honored and still touched. 2,791 views already. Pls share & watch! Thank you ♥️ #FQAD #MEcfs #LongCovid #LongLyme #MCAS #POTS #SmallFiber #CCI #EDS #LongList #MedicalScandal
www.youtube.com/live/L1dwxz3...
www.youtube.com/live/L1dwxz3...
What does an #invisibleillness look like? Smiling so folx don't worry about you, ignoring the fatigue or pain or neuropathy to get through a workday. But why labor to create a good life if you can't then enjoy it? #fibromyalgia #mecfs #complexchronicillness
March 8, 2025 at 1:51 AM
What does an #invisibleillness look like? Smiling so folx don't worry about you, ignoring the fatigue or pain or neuropathy to get through a workday. But why labor to create a good life if you can't then enjoy it? #fibromyalgia #mecfs #complexchronicillness
***Musings on the coming end of 2024***
This year, I‘ve had the opportunity to get to know and appreciate colleagues in the field of #PAIS and #complexchronicillness, whose expertise and constructive exchange have allowed me to grow professionally.
1/8
This year, I‘ve had the opportunity to get to know and appreciate colleagues in the field of #PAIS and #complexchronicillness, whose expertise and constructive exchange have allowed me to grow professionally.
1/8
December 29, 2024 at 3:31 PM
***Musings on the coming end of 2024***
This year, I‘ve had the opportunity to get to know and appreciate colleagues in the field of #PAIS and #complexchronicillness, whose expertise and constructive exchange have allowed me to grow professionally.
1/8
This year, I‘ve had the opportunity to get to know and appreciate colleagues in the field of #PAIS and #complexchronicillness, whose expertise and constructive exchange have allowed me to grow professionally.
1/8
2/2 ⬆️ @ruhoy.bsky.social @kaufmanmd.bsky.social
Talia and I we spoke about #ComplexChronicIllness this week. I hope I did not mess it up, especially with my pretty bad english. I was talking about your Septad model because I learned so much from you ⬇️
www.youtube.com/live/L1dwxz3...
Talia and I we spoke about #ComplexChronicIllness this week. I hope I did not mess it up, especially with my pretty bad english. I was talking about your Septad model because I learned so much from you ⬇️
www.youtube.com/live/L1dwxz3...
FLOXED: CHRONICALLY ILL & CHRONICALLY IGNORED – WITH SIBYLLE DAHRENDORF
YouTube video by USA GLOBAL TV ® & RADIO
www.youtube.com
August 14, 2025 at 7:38 PM
2/2 ⬆️ @ruhoy.bsky.social @kaufmanmd.bsky.social
Talia and I we spoke about #ComplexChronicIllness this week. I hope I did not mess it up, especially with my pretty bad english. I was talking about your Septad model because I learned so much from you ⬇️
www.youtube.com/live/L1dwxz3...
Talia and I we spoke about #ComplexChronicIllness this week. I hope I did not mess it up, especially with my pretty bad english. I was talking about your Septad model because I learned so much from you ⬇️
www.youtube.com/live/L1dwxz3...
Where are my fellow #painwarriors and #complexchronicillness folks at? There must be a #chronicpain community here. Come find me. Too many #pain conditions to list.
November 20, 2024 at 11:30 PM
Where are my fellow #painwarriors and #complexchronicillness folks at? There must be a #chronicpain community here. Come find me. Too many #pain conditions to list.
FYI:
x.com/polybioRF/st...
“In pts who underwent CCI surgery, we recovered Brevundimonas genomes from C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness.
“These patients have undergone microbiome translocation from the intestine to ligament.”
x.com/polybioRF/st...
“In pts who underwent CCI surgery, we recovered Brevundimonas genomes from C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness.
“These patients have undergone microbiome translocation from the intestine to ligament.”
PolyBio on X: "“In patients who underwent CCI surgery, we recovered Brevundimonas genomes from the C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness. “These patients have undergone microbiome translocation from the intestine to ligament.” https://t.co/gBL85X5A3h" / X
“In patients who underwent CCI surgery, we recovered Brevundimonas genomes from the C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness. “These patients have undergone microbiome translocation from the intestine to ligament.” https://t.co/gBL85X5A3h
x.com
March 13, 2025 at 7:14 AM
FYI:
x.com/polybioRF/st...
“In pts who underwent CCI surgery, we recovered Brevundimonas genomes from C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness.
“These patients have undergone microbiome translocation from the intestine to ligament.”
x.com/polybioRF/st...
“In pts who underwent CCI surgery, we recovered Brevundimonas genomes from C1 ligament,” says Dr. DuPont, who is studying the role of persistent pathogens in #complexchronicillness.
“These patients have undergone microbiome translocation from the intestine to ligament.”
Novavax JN.1 Covid vaccine has finally been approved by the MHRA!
Novavax is a protein formulation so differs from Pfizer/Moderna mRNA vax, tends to have fewer side effects and may be safer for ppl w #ComplexChronicIllness
Will hopefully be available soon in UK pharmacies
#LongCovid #pwME #MECFS
Novavax is a protein formulation so differs from Pfizer/Moderna mRNA vax, tends to have fewer side effects and may be safer for ppl w #ComplexChronicIllness
Will hopefully be available soon in UK pharmacies
#LongCovid #pwME #MECFS
MHRA approves adapted Nuvaxovid JN.1 COVID-19 vaccine for adults and children aged 12 plus
The Medicines and Healthcare products Regulatory Agency (MHRA) has approved an adapted version of the Nuvaxovid COVID-19 vaccine that targets the Omicron JN.1 COVID-19 subvariant.
www.gov.uk
November 15, 2024 at 7:25 PM
Novavax JN.1 Covid vaccine has finally been approved by the MHRA!
Novavax is a protein formulation so differs from Pfizer/Moderna mRNA vax, tends to have fewer side effects and may be safer for ppl w #ComplexChronicIllness
Will hopefully be available soon in UK pharmacies
#LongCovid #pwME #MECFS
Novavax is a protein formulation so differs from Pfizer/Moderna mRNA vax, tends to have fewer side effects and may be safer for ppl w #ComplexChronicIllness
Will hopefully be available soon in UK pharmacies
#LongCovid #pwME #MECFS
Exactly. I'd rather have heard "I don't know" all these years than go through this nightmare called #MedicalGaslighting. It's further traumatizing. What shocks me is how little knowledge most doctors have. #ComplexChronicIllness
By the way I am on your wait list for online consultation 🙏
By the way I am on your wait list for online consultation 🙏
April 22, 2025 at 2:49 PM
Exactly. I'd rather have heard "I don't know" all these years than go through this nightmare called #MedicalGaslighting. It's further traumatizing. What shocks me is how little knowledge most doctors have. #ComplexChronicIllness
By the way I am on your wait list for online consultation 🙏
By the way I am on your wait list for online consultation 🙏
No, I'm not acutely ill or have a fever. This is what #PEM can look like.
What did I do for this you ask? Had a telehealth appt with my headache specialist earlier that day...
Sheldon is good at comfort 😻
#MEcfs #MyalgicEncephalomyelitis #ComplexChronicIllness #LongCovid #IACC
What did I do for this you ask? Had a telehealth appt with my headache specialist earlier that day...
Sheldon is good at comfort 😻
#MEcfs #MyalgicEncephalomyelitis #ComplexChronicIllness #LongCovid #IACC
October 6, 2023 at 2:49 PM
No, I'm not acutely ill or have a fever. This is what #PEM can look like.
What did I do for this you ask? Had a telehealth appt with my headache specialist earlier that day...
Sheldon is good at comfort 😻
#MEcfs #MyalgicEncephalomyelitis #ComplexChronicIllness #LongCovid #IACC
What did I do for this you ask? Had a telehealth appt with my headache specialist earlier that day...
Sheldon is good at comfort 😻
#MEcfs #MyalgicEncephalomyelitis #ComplexChronicIllness #LongCovid #IACC
I had a really great day but know my limits and am in bed before 7:45 😅
#complexchronicillness
#dysautonomia
#complexchronicillness
#dysautonomia
December 2, 2024 at 12:41 AM
I had a really great day but know my limits and am in bed before 7:45 😅
#complexchronicillness
#dysautonomia
#complexchronicillness
#dysautonomia
Story of my life!
"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING
Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."
Credit: @strongerthanpots
#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING
Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."
Credit: @strongerthanpots
#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
February 27, 2026 at 5:22 PM
Story of my life!
"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING
Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."
Credit: @strongerthanpots
#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING
Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."
Credit: @strongerthanpots
#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
Hyp+Access is in Newsweek! Read “Why Patients May Be The Health Care System’s Most Valuable Experts” - bit.ly/PatientExperts
Sign up for the Hyp+Care clinic waitlist: hypaccess.org/hypcare/join-the-clinic-waitlist/
#ComplexChronicIllness #CareAccess
Sign up for the Hyp+Care clinic waitlist: hypaccess.org/hypcare/join-the-clinic-waitlist/
#ComplexChronicIllness #CareAccess
August 4, 2026 at 2:01 PM
Hyp+Access is in Newsweek! Read “Why Patients May Be The Health Care System’s Most Valuable Experts” - bit.ly/PatientExperts
Sign up for the Hyp+Care clinic waitlist: hypaccess.org/hypcare/join-the-clinic-waitlist/
#ComplexChronicIllness #CareAccess
Sign up for the Hyp+Care clinic waitlist: hypaccess.org/hypcare/join-the-clinic-waitlist/
#ComplexChronicIllness #CareAccess
#JedisEM #EncéphalomyéliteMyalgique #MECFS #EM #pwME #paEM #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #apres20 #maladiechronique #santé #médecine #handicap #recherche
#longcovidkids #UniteToFight2024 #complexchronicillness #LongCovid
8/8
#longcovidkids #UniteToFight2024 #complexchronicillness #LongCovid
8/8
January 14, 2025 at 10:38 AM
I am absolutely exhausted by vomiting every time i wake up. #complexchronicillness
November 27, 2024 at 12:37 PM
I am absolutely exhausted by vomiting every time i wake up. #complexchronicillness