Story of my life! "HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING After the doctor has given you your options and you've done your own research, the anxiety often remains. Will this treatment help me or harm me? Will it cause a flare or do irreversible damage? When your condition makes you sensitive to medications, you feel like your body sees the list of possible side- effects as a to-do list. 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

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

FLOXED: CHRONICALLY ILL & CHRONICALLY IGNORED – WITH SIBYLLE DAHRENDORF YouTube video by USA GLOBAL TV ® & RADIO

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...

FLOXED: CHRONICALLY ILL & CHRONICALLY IGNORED – WITH SIBYLLE DAHRENDORF YouTube video by USA GLOBAL TV ® & RADIO

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...

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 🙏

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

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.”

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

#JedisEM #EncéphalomyéliteMyalgique #MECFS #EM #pwME #paEM #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #apres20 #maladiechronique #santé #médecine #handicap #recherche
#longcovidkids #UniteToFight2024 #complexchronicillness #LongCovid
8/8

Stable Diffusion’s interpretation of an artistic, thought-provoking depiction of a passing year.

***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

PolyBio supports scientists studying #complexchronicillness around the globe on their #LongCOVID, #MECFS and #Lyme+ research. Check out their work! 👇🏻

go.bsky.app/GiFZDen

I had a really great day but know my limits and am in bed before 7:45 😅
#complexchronicillness
#dysautonomia

I am absolutely exhausted by vomiting every time i wake up. #complexchronicillness

#MEcfs
#dysautonomia
#LongCovid
#complexchronicillness

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.

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

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.

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

10/
#LongCovid #MECFS #PwME #ComplexChronicIllness #PwLC
bsky.app/profile/kath...

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

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

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...

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