🌟 Central Texas CIDP Newsletter

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Table of Contents:

• Celebrating Our Companions

• New -IVIg and Efgartigimod Transition Study

• Resources

Editor’s note; Hey! We made it to 10 issues! I know - as newsletters go it’s not much. But-we have a different kind of “situation” for our staff. Most of the research, production, editing and publishing rely on a rare disease. Not just for content, sometimes how bad is it today? 10 issues means over 10 weeks of hands on a keyboard and mouse and so far, so good. This week we honor companions. You wouldn’t be reading this without mine.

Together we celebrate issue # 10 and here’s to 10 more!

💞 Celebrating Our Partners: A Tribute to Love, Support, and Shared Strength 💞
For everyone who wants to honor the person who walks beside them—spouse, partner, or cherished companion.

🌟 1. The Heartbeat Beside Us: Why We Celebrate Our Partners

In every journey, especially those marked by challenge or change, there is a quiet hero whose presence makes all the difference. Our partners—whether spouses, life companions, or steadfast friends—are the heartbeat beside us. They are the ones who hold our hand through uncertainty, laugh with us in the light, and anchor us when the world feels unsteady.

To celebrate a partner is to honor the daily acts of love that often go unnoticed: the gentle encouragement before a doctor’s visit, the shared silence in difficult moments, the way they remember our favorite comfort food or the song that always lifts our spirits. These are the threads that weave resilience into our days.

Today, we pause to recognize not just the big gestures, but the small, steady acts of devotion that carry us through. We celebrate the people who choose, every day, to walk this path with us.

💬 2. Voices from the Heart: Readers Express Their Gratitude

We invited our community to share what their partners mean to them. Here are some of the deeply moving responses:

“My partner is my safe place. When I’m overwhelmed by pain or uncertainty, their quiet presence is enough to remind me I’m not alone. They don’t always have the answers, but they never let me forget that I am loved, exactly as I am.”
— Anonymous

“It’s the little things—like warming up my heating pad before bed, or making sure there’s always tea in the house—that show me how much I matter. Sometimes I wonder how I got so lucky.”
— Maria, CIDP Community Member

“We’ve been through so much together. There were days I wanted to give up, but my spouse never let me. Their belief in me is the light that keeps me moving forward.”
— James, Newsletter Reader

“She is my best friend, my nurse, my cheerleader, and my partner in every sense. Even on my worst days, she finds a way to make me laugh.”
— Robert

“Love isn’t just romance—it’s teamwork. It’s the way we face each new challenge together, sometimes afraid, but always together.”
— Priya

💡 3. The Many Faces of Support: What Partners Really Do

Support comes in many forms, and each partnership is unique. Some of us have partners who are natural caregivers, always ready with a solution or a soothing word. Others have partners whose support is quieter—a shared look, a gentle squeeze of the hand, a willingness to sit in silence when words are too much.

For those living with chronic illness or pain, a partner’s support can mean:

• Advocacy: Attending appointments, asking questions, and making sure your voice is heard.

• Encouragement: Reminding you of your strength and celebrating every small victory.

• Patience: Understanding that some days are harder than others, and loving you through it all.

• Humor: Bringing lightness into heavy days with a well-timed joke or a funny story.

• Presence: Simply being there, even when there’s nothing to “fix.”

These acts, big and small, are gifts—reminders that love is not just a feeling, but a practice.

🎁 4. Ways to Celebrate Your Partner—Today and Every Day

It’s easy to let gratitude go unspoken, especially in the routines of daily life. But taking a moment to acknowledge your partner can deepen your connection and lift both your spirits. Here are some heartfelt ways to celebrate your loved one:

A. Write a Letter from the Heart

Take a few minutes to write a note or letter to your partner. Tell them what their support means to you, recall a favorite memory, or simply say thank you for being there. Handwritten words have a special power.

B. Create a Shared Ritual

Start a new tradition just for the two of you—whether it’s a weekly movie night, a morning walk, or a “gratitude jar” where you leave each other notes.

C. Say It Out Loud

Sometimes the simplest words are the most powerful. Look your partner in the eye and say, “I appreciate you,” or “Thank you for loving me, even on my hardest days.”

D. Celebrate Their Strengths

Notice what your partner does well—whether it’s their patience, their sense of humor, or their ability to find hope in tough times—and let them know you see it.

E. Give the Gift of Time

Plan a small surprise: cook their favorite meal, take a scenic drive together, or spend an afternoon doing something they love.

F. Make Art Together

If you’re creative, collaborate on a small project—write a poem, paint, or even create a playlist of songs that tell your story.

🌈 5. For Those Who Want to Express but Struggle with Words

Not everyone finds it easy to say what’s in their heart. If you’re unsure where to start, try these prompts:

• “One thing I admire about you is…”

• “A moment I’ll never forget is…”

• “Thank you for always…”

• “When I think of our journey, I feel…”

Even a single sentence can mean the world.

✨ 6. Honoring All Kinds of Partnerships

It’s important to remember that “partner” means different things to different people. For some, it’s a spouse or romantic companion. For others, it’s a close friend, a sibling, a parent, or even a beloved pet who offers comfort and companionship.

Whoever your partner is, this is a moment to honor them—and to recognize the unique bond you share.

💬 7. Invitation: Share Your Story

We’d love to hear from you! If you have a story, a thank you, or a creative tribute to your partner, please reply to this newsletter or send it to [your email/website]. Your words may inspire others and remind us all that love, in its many forms, is worth celebrating.

_{To all the partners who walk beside us:
Thank you for your patience, your courage, and your endless love.
You are the quiet strength that makes every day brighter.}

Today, and every day, we celebrate you.

Emerging Therapies and Clinical Trials Offer New Hope for Long COVID Treatment
JUNE 2025

Long COVID, a complex condition affecting millions globally, continues to challenge researchers and clinicians. Characterized by persistent symptoms such as fatigue, cognitive dysfunction, and cardiovascular issues, its treatment landscape is evolving rapidly. Recent clinical trials and pre-clinical studies highlight promising therapies, offering hope for patients and providers alike.

Breakthroughs in Clinical Trials

1. IVIg and Efgartigimod Transition Study
A phase 4 trial (NCT05890915) is investigating the transition from intravenous immunoglobulin (IVIg) to efgartigimod, an FcRn inhibitor, for long COVID patients with autoimmune-driven symptoms. Early data suggest efgartigimod may reduce rebound effects compared to traditional therapies like ozanimod, a sphingosine-1-phosphate receptor modulator. This trial aims to address chronic inflammation and immune dysregulation, common in long COVID pathophysiology 1.

2. Monoclonal Antibody Sipavibart
Nova Southeastern University and the Schmidt Initiative for Long COVID (SILC) are conducting a double-blind trial of sipavibart, AstraZeneca’s monoclonal antibody. Approved in Japan and the EU for COVID-19 prevention, this study tests its efficacy in alleviating cognitive dysfunction, autonomic issues, and exercise intolerance in 100 patients. Preliminary results are anticipated by late 2026 5.

3. Extended Paxlovid Course
UC San Francisco researchers reported that a prolonged course of Paxlovid (nirmatrelvir/ritonavir) improved symptoms in select long COVID patients. While larger studies are needed, this finding contrasts with earlier mixed results and underscores the potential of antiviral persistence theories 6.

Promising Non-Antiviral Therapies

1. Metformin
The diabetes drug metformin has shown the strongest evidence in preventing long COVID. Two phase 3 trials demonstrated a 42–63% reduction in long COVID incidence when administered early. Its anti-inflammatory and mitochondrial-supportive properties make it a top candidate 4.

2. Low-Dose Naltrexone (LDN)
LDN, a repurposed opioid antagonist, improved fatigue and post-exertional malaise in observational studies. Patients reported a five-fold higher likelihood of improvement compared to physical therapy alone, though randomized trials are pending 4.

3. Dexamethasone and Immune Modulators
Low-dose dexamethasone reduced fatigue duration by 33% in studies, while anakinra (an IL-1 inhibitor) and infliximab (TNF blocker) are being explored for their anti-inflammatory effects. These therapies target cytokine-driven symptoms like brain fog and myalgia [4,7.

Innovative Approaches on the Horizon

1. Therapeutic Apheresis and IVIg
Small studies suggest therapeutic apheresis (blood filtration) and IVIg may alleviate symptoms in 70% of patients by removing inflammatory factors or modulating immunity. However, high costs and limited accessibility remain barriers 4.

2. Preclinical Antiviral Breakthrough
WEHI researchers developed a novel antiviral compound that prevented long COVID-like symptoms in mice, including lung and brain dysfunction. Published in Nature Communications, this preclinical work could pave the way for human trials 8.

3. Nutritional and Hormonal Support
Omega-3 fatty acids and L-arginine improved mental health and fatigue in cohort studies, while testofen (a testosterone booster) is being tested for hormonal imbalances linked to fatigue 4.

Despite progress, challenges persist. Current treatments focus on symptom management, requiring a personalized, multidisciplinary approach. The Boston COVID Recovery Cohort (BCRC) emphasizes rehab, mental health support, and equity in care access 7.

Key Takeaways:

• Metformin and LDN lead existing options with robust data.

• Monoclonal antibodies and antivirals offer targeted strategies.

• Pre-clinical breakthroughs hint at future disease-modifying therapies.

“Long COVID is not a silver bullet, but these findings bring us closer to turning the tide,” says Dr. Alison Cohen of UCSF 6. As trials expand, collaboration between researchers, clinicians, and patients remains critical to unraveling this silent pandemic.

References
1 NeurologyLive: LC Study Long COVID Trial
4 PMC: Non-Antiviral Therapies for Long COVID
5 NSU Clinical Trial: Sipavibart for Long COVID
6 UCSF: Extended Paxlovid Course
7 BIDMC Long COVID Newsletter
8 MedicalXpress: Preclinical Antiviral Breakthrough

For more updates, follow ongoing research at the Schmidt Initiative for Long COVID and NIH RECOVER Initiative.

📅 Closing Thoughts & How to Get Involved

Take advantage of these newsletters if you can, ask questions, and share what works for you. Together, we’re building a stronger, more informed CIDP community.

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Stay strong, stay informed, and stay connected!

Warm regards,
Richard Aikman
Editor, CIDPedia

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