Deb
@debwald.bsky.social
Reposted by Deb
Does anybody know if this will be streamed or available to watch afterwards?
Am 12./13.5. findet die 3. internationale Charité MECFS Konferenz statt zu den Themen Versorgung, Krankheitsmechanismen und Therapiestudien u.a. mit David Putrino, Rob Wüst, Neurostingl, JdenDunnen, MichaelPeluso, Oystein Fluge.
events.mecfs-research.org/de/events/co...
events.mecfs-research.org/de/events/co...
ME/CFS Research Foundation
ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
events.mecfs-research.org
March 14, 2025 at 5:44 PM
Does anybody know if this will be streamed or available to watch afterwards?
Reposted by Deb
🔍 New study from Center examines role of autoantibodies in #MECFS. 🧪 Using advanced screening of 7,500+ antibody-antigen interactions in 172 participants, researchers found no significant differences between patients & controls. 📄 Read more: doi.org/10.3390/ijms...
March 21, 2025 at 7:39 PM
🔍 New study from Center examines role of autoantibodies in #MECFS. 🧪 Using advanced screening of 7,500+ antibody-antigen interactions in 172 participants, researchers found no significant differences between patients & controls. 📄 Read more: doi.org/10.3390/ijms...
Reposted by Deb
It’s 2025… can we start masking in hospitals this year?
Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?
Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?
Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
A Plea to Maskless Healthcare Workers from Vulnerable Patients
If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.
www.disabledginger.com
January 2, 2025 at 11:21 PM
It’s 2025… can we start masking in hospitals this year?
Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?
Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?
Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
Reposted by Deb
My 1st #COVID-19 infection was in 2020: 2,5 months+ 2 months for recovering.
My 2nd in 2022: 12 days + 18 days with fever.
My #Sjögren in 2023.
I have always thought that my short "long-covid" was because I already have the predisposition to autoimmune disorder 🤷
pubmed.ncbi.nlm.nih.gov/39504045/
My 2nd in 2022: 12 days + 18 days with fever.
My #Sjögren in 2023.
I have always thought that my short "long-covid" was because I already have the predisposition to autoimmune disorder 🤷
pubmed.ncbi.nlm.nih.gov/39504045/
Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 - PubMed
This retrospective cohort study with an extended follow-up period found associations between COVID-19 and the long-term risk of various autoimmune and autoinflammatory connective tissue disorders. Lon...
pubmed.ncbi.nlm.nih.gov
November 13, 2024 at 10:58 AM
My 1st #COVID-19 infection was in 2020: 2,5 months+ 2 months for recovering.
My 2nd in 2022: 12 days + 18 days with fever.
My #Sjögren in 2023.
I have always thought that my short "long-covid" was because I already have the predisposition to autoimmune disorder 🤷
pubmed.ncbi.nlm.nih.gov/39504045/
My 2nd in 2022: 12 days + 18 days with fever.
My #Sjögren in 2023.
I have always thought that my short "long-covid" was because I already have the predisposition to autoimmune disorder 🤷
pubmed.ncbi.nlm.nih.gov/39504045/
Reposted by Deb
Is an approved treatment (or 2) on the horizon for #Sjogren disease?
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
November 16, 2024 at 1:24 PM
Is an approved treatment (or 2) on the horizon for #Sjogren disease?
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
Reposted by Deb
Since may2023 I'm on sick leave thanks to #Sjögren. 4 flares (3-4months each) + #IVIG treatment don't allow me to work. I asked for #disability recognition 7ma, still waiting.
Last week I realised I will pay the consequences of my #chronicillness at work more than I thought
Last week I realised I will pay the consequences of my #chronicillness at work more than I thought
November 18, 2024 at 1:00 PM
Since may2023 I'm on sick leave thanks to #Sjögren. 4 flares (3-4months each) + #IVIG treatment don't allow me to work. I asked for #disability recognition 7ma, still waiting.
Last week I realised I will pay the consequences of my #chronicillness at work more than I thought
Last week I realised I will pay the consequences of my #chronicillness at work more than I thought
Reposted by Deb
Alopecia areata, Behçet disease, Crohn disease, ulcerative colitis, rheumatoid arthritis , systemic lupus erythematosus, Sjögren syndrome, ankylosing spondylitis, and bullous pemphigoid were associated with higher risk in the COVID-19 group.
November 26, 2024 at 12:46 PM
Alopecia areata, Behçet disease, Crohn disease, ulcerative colitis, rheumatoid arthritis , systemic lupus erythematosus, Sjögren syndrome, ankylosing spondylitis, and bullous pemphigoid were associated with higher risk in the COVID-19 group.
Reposted by Deb
Yes.I guess many with chronic illness and invisible illness can truly relate to this.
We do things with extreme pain & discomfort that would make others incapacitated
#chronicillness #chronicpain #chronicfatigue #cfs #Endometriosis #Fibromyalgia #sjogren #pain #supportingeachother #youarenotalone
We do things with extreme pain & discomfort that would make others incapacitated
#chronicillness #chronicpain #chronicfatigue #cfs #Endometriosis #Fibromyalgia #sjogren #pain #supportingeachother #youarenotalone
November 28, 2024 at 6:11 AM
Yes.I guess many with chronic illness and invisible illness can truly relate to this.
We do things with extreme pain & discomfort that would make others incapacitated
#chronicillness #chronicpain #chronicfatigue #cfs #Endometriosis #Fibromyalgia #sjogren #pain #supportingeachother #youarenotalone
We do things with extreme pain & discomfort that would make others incapacitated
#chronicillness #chronicpain #chronicfatigue #cfs #Endometriosis #Fibromyalgia #sjogren #pain #supportingeachother #youarenotalone
Reposted by Deb
#Sjogrens officially changed from Sjogren's Syndrome to Sjogren disease sjogrens.org/blog/2024/la...
Language Matters! The International Sjögren’s Community Changes Sjögren’s Syndrome to Sjögren’s Disease!
The international Sjögren’s community has officially changed the disease name Sjögren’s Syndrome to Sjögren’s Disease! Sjögren’s disease is now the official name of the disease and the term “secondary...
sjogrens.org
November 30, 2024 at 4:25 PM
#Sjogrens officially changed from Sjogren's Syndrome to Sjogren disease sjogrens.org/blog/2024/la...
Reposted by Deb
What percentage of “rhupus” is just misdiagnosed Sjögren?
41 "Rhupus" pts were compared to 160 SLE and 709 RA pts. Rhupus pts have a younger onset age than RA (P=0.032), but older than SLE (P=0.008). ~20% initially presented w/ SLE Sxs. Rhupus commonly has ILD, hyperglobulinemia & Lab abnormalities (61%), but seldom renal or CNS dz
Rhupus syndrome: a unique disease overlapping systemic lupus erythematosus and rheumatoid arthritis - Archives of Dermatological Research
Background though considered to have characteristics of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) theoretically, Rhupus Syndrome (RS) owns its unique clinical features. In this…
buff.ly
December 17, 2024 at 10:03 PM
What percentage of “rhupus” is just misdiagnosed Sjögren?
Reposted by Deb
Any advice for managing slow digestion and constipation? I was lucky enough to be diagnosed seronegative and started salagen and plaquenil. I've been researching and it seems my diagnosis of fibromyalgia in 2013 was probably Sjögren's. Also have Hashimotos, migraines, fibroids, Interstial Cystitis.
November 21, 2024 at 9:21 PM
Any advice for managing slow digestion and constipation? I was lucky enough to be diagnosed seronegative and started salagen and plaquenil. I've been researching and it seems my diagnosis of fibromyalgia in 2013 was probably Sjögren's. Also have Hashimotos, migraines, fibroids, Interstial Cystitis.
Reposted by Deb
15/ Find self-advocacy tools and learn more on my extensively researched and cited website:
www.sjogrensadvocate.com
www.sjogrensadvocate.com
November 21, 2024 at 5:33 PM
15/ Find self-advocacy tools and learn more on my extensively researched and cited website:
www.sjogrensadvocate.com
www.sjogrensadvocate.com
Reposted by Deb
14/ For more about what must be done to raise clinican awareness and improve Sjogren's care:
www.healio.com/news/rheumat...
www.healio.com/news/rheumat...
‘My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations
Despite being one of the most prevalent autoimmune diseases in the United States, Sjögren’s disease remains shrouded behind significant misconceptions and knowledge gaps that can delay diag...
www.healio.com
November 21, 2024 at 5:31 PM
14/ For more about what must be done to raise clinican awareness and improve Sjogren's care:
www.healio.com/news/rheumat...
www.healio.com/news/rheumat...
Reposted by Deb
It is time to put the “nuisance sicca disease paradigm” to rest. The ACR can start by posting the Sjogren’s Foundation clinical practice guidelines. 13/
sjogrens.org/researchers-...
sjogrens.org/researchers-...
Clinical Practice Guidelines
In 2009, the Sjögren's Foundation launched an initiative to develop clinical practice guidelines for Sjögren's, which aim to: Improve the quality of care for Sjögren's patients by developing guideline...
sjogrens.org
November 21, 2024 at 5:29 PM
It is time to put the “nuisance sicca disease paradigm” to rest. The ACR can start by posting the Sjogren’s Foundation clinical practice guidelines. 13/
sjogrens.org/researchers-...
sjogrens.org/researchers-...
Reposted by Deb
Medical educators & the ACR must debunk long-held misconceptions.
Rheumatologists must unlearn traditional views and update their practice to provide comprehensive monitoring and management, because Sjogren’s is a serious systemic disease, never “just sicca”. 12/
Rheumatologists must unlearn traditional views and update their practice to provide comprehensive monitoring and management, because Sjogren’s is a serious systemic disease, never “just sicca”. 12/
November 21, 2024 at 5:27 PM
Medical educators & the ACR must debunk long-held misconceptions.
Rheumatologists must unlearn traditional views and update their practice to provide comprehensive monitoring and management, because Sjogren’s is a serious systemic disease, never “just sicca”. 12/
Rheumatologists must unlearn traditional views and update their practice to provide comprehensive monitoring and management, because Sjogren’s is a serious systemic disease, never “just sicca”. 12/
Reposted by Deb
It is unacceptable that a disease as prevalent as RA and with a QOL as low as SSc remains so misunderstood and neglected.
Sjogren’s is associated with early mortality from lung disease, lymphoma & comorbidities, esp. cardiovascular disease. 11/
Sjogren’s is associated with early mortality from lung disease, lymphoma & comorbidities, esp. cardiovascular disease. 11/
November 21, 2024 at 5:26 PM
It is unacceptable that a disease as prevalent as RA and with a QOL as low as SSc remains so misunderstood and neglected.
Sjogren’s is associated with early mortality from lung disease, lymphoma & comorbidities, esp. cardiovascular disease. 11/
Sjogren’s is associated with early mortality from lung disease, lymphoma & comorbidities, esp. cardiovascular disease. 11/
Reposted by Deb
SSA-neg patients are underdiagnosed and undertreated. We must educate clinicians that SSA-neg Sjogren’s IS a systemic disease, just as likely to get ILD and MORE likely to get joint, SFN, and dysautonomia including GI and bladder dysfunction. 10/
November 21, 2024 at 5:25 PM
SSA-neg patients are underdiagnosed and undertreated. We must educate clinicians that SSA-neg Sjogren’s IS a systemic disease, just as likely to get ILD and MORE likely to get joint, SFN, and dysautonomia including GI and bladder dysfunction. 10/
Reposted by Deb
Every Sjogren's patient, regardless of symptoms or serostatus, should be monitored for a wide range of systemic manifestations and comorbidities.
Early detection improves outcomes. 9/
Early detection improves outcomes. 9/
November 21, 2024 at 5:23 PM
Every Sjogren's patient, regardless of symptoms or serostatus, should be monitored for a wide range of systemic manifestations and comorbidities.
Early detection improves outcomes. 9/
Early detection improves outcomes. 9/
Reposted by Deb
CME presenters and the ACR website perpetuate the sicca/glandular disease paradigm every time they state that Sjogren’s is often (or ever) a sicca-limited dz. This widespread mischaracterization of Sjogren’s -> inadequate care. 8/
November 21, 2024 at 5:22 PM
CME presenters and the ACR website perpetuate the sicca/glandular disease paradigm every time they state that Sjogren’s is often (or ever) a sicca-limited dz. This widespread mischaracterization of Sjogren’s -> inadequate care. 8/
Reposted by Deb
The classification criteria overweight sicca features & do not reflect the spectrum of systemic disease. z
This obsession with sicca reinforces the “mild sicca disease” myth. The classification criteria must be updated to reflect systemic manifestations, especially neuro. 7/
This obsession with sicca reinforces the “mild sicca disease” myth. The classification criteria must be updated to reflect systemic manifestations, especially neuro. 7/
November 21, 2024 at 5:20 PM
The classification criteria overweight sicca features & do not reflect the spectrum of systemic disease. z
This obsession with sicca reinforces the “mild sicca disease” myth. The classification criteria must be updated to reflect systemic manifestations, especially neuro. 7/
This obsession with sicca reinforces the “mild sicca disease” myth. The classification criteria must be updated to reflect systemic manifestations, especially neuro. 7/
Reposted by Deb
sjogrens.org
November 21, 2024 at 5:18 PM
Reposted by Deb
Sjogren’s is underdiagnosed, especially in SSA-negative and non-sicca presentations. Classification criteria are often misused as diagnostic criteria.
SSA-neg Sjogren’s is also systemic & especially prone to SFN, dysautonomia, GI & joint involvement. 5/
SSA-neg Sjogren’s is also systemic & especially prone to SFN, dysautonomia, GI & joint involvement. 5/
November 21, 2024 at 5:17 PM
Sjogren’s is underdiagnosed, especially in SSA-negative and non-sicca presentations. Classification criteria are often misused as diagnostic criteria.
SSA-neg Sjogren’s is also systemic & especially prone to SFN, dysautonomia, GI & joint involvement. 5/
SSA-neg Sjogren’s is also systemic & especially prone to SFN, dysautonomia, GI & joint involvement. 5/
Reposted by Deb
Landscape studies: 4/
pubmed.ncbi.nlm.nih.gov/24162151/
pubmed.ncbi.nlm.nih.gov/38560642/
ard.bmj.com/content/81/S... (Look at Table 1)
pubmed.ncbi.nlm.nih.gov/24162151/
pubmed.ncbi.nlm.nih.gov/38560642/
ard.bmj.com/content/81/S... (Look at Table 1)
Systemic involvement in primary Sjogren's syndrome evaluated by the EULAR-SS disease activity index: analysis of 921 Spanish patients (GEAS-SS Registry) - PubMed
Primary SS is undeniably a systemic disease, with the joints, lungs, skin and peripheral nerves being the most frequently involved organs. Cytopenias, hypocomplementaemia and cryoglobulinaemia at diag...
pubmed.ncbi.nlm.nih.gov
November 21, 2024 at 5:16 PM
Landscape studies: 4/
pubmed.ncbi.nlm.nih.gov/24162151/
pubmed.ncbi.nlm.nih.gov/38560642/
ard.bmj.com/content/81/S... (Look at Table 1)
pubmed.ncbi.nlm.nih.gov/24162151/
pubmed.ncbi.nlm.nih.gov/38560642/
ard.bmj.com/content/81/S... (Look at Table 1)
Reposted by Deb
The few landscape studies done show > 80% with systemic manifestations. This is an underestimate because researchers exclude non-ESSDAI features, esp. dysautonomia, and often overlook SFN & lung disease (which is not limited to ILD). 3/
November 21, 2024 at 5:15 PM
The few landscape studies done show > 80% with systemic manifestations. This is an underestimate because researchers exclude non-ESSDAI features, esp. dysautonomia, and often overlook SFN & lung disease (which is not limited to ILD). 3/