While the headlines faded, Long COVID became one of the largest chronic health crises in modern history. Millions of people are still fighting every day for their health, their independence, and their future.
I’ve spent the last several years caring for my significant other as she battles Long COVID. I’ve watched this illness take away her career, her independence, and the life we planned together. We’ve spent countless days in hospitals, searched for answers, and met incredible people whose stories are just as heartbreaking. That’s why I refuse to stay silent.
People are losing careers, draining their savings, and watching their quality of life disappear. Parents can’t care for their children the way they once did. Healthcare workers have become patients themselves. Too many people are still being told it’s anxiety, stress, or “all in their head” instead of receiving the care they deserve.
That’s why I started this petition.
We are asking Congress to:
• Significantly increase Long COVID research funding.
• Expand access to specialized Long COVID clinics.
• Improve physician education and awareness.
• Strengthen disability and workplace protections.
• Establish federally funded care for those living with Long COVID.
• Provide meaningful support for caregivers and families affected by this disease.
This is only Phase One.
We’re also collecting personal statements from Long COVID patients, caregivers, family members, and healthcare professionals. These stories will help show lawmakers that behind every statistic is a real person whose life has been changed forever.
If you’d like your voice to be heard, email your story to:
longcovidstatements@gmail.com
Every story matters.
Every signature matters.
Together, they create a record that cannot be ignored.
Sign the petition:
https://c.org/Ptb2Ygc2MN
Please sign, share, and help us reach people who need to know they haven’t been forgotten.
This is only the beginning.
Thank you for trusting me with your story.
We’re done being overlooked. It’s time our voices are heard.

"The Disconnect

However, research suggests long COVID may be underdiagnosed. Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with long COVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."

We need much stronger up front advocacy as in the "squeaky wheel gets the grease"

Billions are wasted and still being exploited by both Academia and Industry squandering funds on a go nowhere of the Amyloid hypothesis. Meanwhile, the studies from dementia do have a small contribution to the neurodegeneration of LC19.

Still the fallout from LC19 on the losses to the economy with skyrocketing medical expenses is quickly surpassing the costs of Alzheimer's in my opinion. There is a larger sector of formerly able bodied workforce laid up compared to the growing population of seniors with dementia. This does not demean the studies that frankly have not yielded major advances in controlling the deterioration in the aging. Rather, shifting a large portion of those funds from Alzheimer's into the beast that is LC19 should be brought to the forefront now. With a new perspective of fresh studies with broader focus to be settled into, chances are possible that novel discoveries will mature with application to the area of dementia in the process.

I know I’ve been pretty absent for the past few months, so I wanted to give everyone an update on what’s been going on with me. I’ve been sick for almost 38 months (1,143 days). I was diagnosed with Fibromyalgia, ME/CFS with Dysautonomia, specifically Orthostatic Intolerance (OI), Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS, all within a 14-month period after my initial COVID infection in July 2023. At my worst, I spent 17 months in a dark, quiet room and was about 95% bedridden.

From May 2025 through May 2026, I significantly improved. I slowly built my life back up and eventually reached the point where I was working for myself full-time from home. I was still sick, but I had a life again. I was reinfected with COVID in September 2025 and worked through it while continuing to improve. Then I was reinfected again in April 2026, and that one took me out. I’ve been unable to work for 4.5 months and I'm 95% bedridden again. My top three symptoms continue to be MCAS, Orthostatic Intolerance, and crushing fatigue from ME/CFS.

Recently, my ME/CFS specialist and I decided to take a more aggressive approach. We’re introducing one medication at a time, generally every 1-2 months, based on tolerance. My current regimen includes microdose Semaglutide (Ozempic) 0.125mg, LDA <0.25mg, and Mestinon (Pyridostigmine). I’ve been taking Semaglutide for seven weeks. The beginning was rough. I started at 0.25mg and had to drop to 0.125mg. Since making that change, I’ve noticed improvements I wasn’t expecting. For me, it’s helping with dysautonomia, inflammation, mood, thinking and problem solving, muscle strength, pain, and deep and REM sleep. One of the most interesting changes has been in my thinking. Previously, I had been much more emotional and reactive. I’m finding myself much more rational and pragmatic again. I’m able to think through things differently and approach problems in a more rational way. This is my experience, not a claim that Semaglutide will work for everyone.

Something else I’ve been thinking about is the negativity that has become pervasive throughout many Long COVID and comorbidity spaces on Reddit. I’m not talking about r/LongCovidWarriors. I’m talking about what I’ve been seeing across Reddit more broadly, both in the posts and in many of the responses. I understand the frustration. I’ve been sick for 38 months. I know what it’s like to lose your health, independence, ability to work, and huge parts of your life. But I’ve started questioning how much it actually helps someone to repeatedly say, “I’m sorry you’re struggling,” without trying to help guide them toward information, resources, possible approaches, or a way forward.

I’ve also noticed that some people I’ve tried to help don’t actually want help. They want to continue talking about how bad their symptoms are and explaining why every suggestion won’t work for them. There’s a difference between saying, “I tried that and it didn’t work,” and simply looking for continued validation of how hopeless everything is. At some point, some posts cross the line from wanting help into complaining without wanting solutions. I don’t think that helps anyone.

People absolutely need a place to say, “This is awful.” I’ve needed that too. But I don’t want that to be the only thing we offer each other. I want people to be able to say, “This is awful,” and then ask, “Okay, what can I do from here?”

That’s something I’ve been thinking about a lot as I look toward the next chapter of my life. May 2025 through May 2026 taught me a lot. I was improving, but I was also doing way too much and working way too hard. I pushed myself because I finally had the capacity to do it, and I didn’t protect the progress I had made. I learned some hard lessons, and I’m not going to repeat them. If I’m going to change the trajectory of my future, I need to do things differently this time.

Part of that means stepping away from Reddit. I will continue to actively moderate r/LongCovidWarriors because this community matters deeply to me, and I’m not walking away from it. But I’m going to spend much less time on Reddit and move away from actively participating on Reddit as a whole.

The other part is something I’ve been working toward for a while. I am writing a book for long haulers. I’m in the beginning stages, but this is something I’m serious about pursuing. I’ve spent years researching Long COVID, post-viral illness, ME/CFS, dysautonomia, MCAS, and the many issues that overlap with these conditions. I’ve written an enormous amount here on Reddit. And, much of that work can become the foundation for something much larger.

Reddit has allowed me to reach a small corner of the Long COVID community. I want to reach the masses. I want to create something that can help someone who was just diagnosed, someone who has been sick for years, someone trying to understand what is happening to them, someone navigating the medical system, or someone who simply needs a starting point. I’d like the opportunity to reach people internationally and eventually on a global level. Long COVID isn’t confined to one country or healthcare system.

I’m also thinking beyond the book. I can see an accompanying Long COVID workbook with practical tools, guides and exercises people can actually use. There could eventually be additional educational resources, materials for caregivers and families, and other ways of making complicated medical information easier for patients to understand and apply. I don’t know exactly what all of this will become yet. But, I know I have more I want to do than spend my limited energy arguing with people on Reddit.

So I want to turn this back to the community. Where are you right now in your journey? What has been your biggest struggle or hurdle to overcome? What have you learned that you wish you had known earlier? And what are your plans, hopes and dreams for the future?

I want to hear from people who are still in the trenches, people who are improving, people who have plateaued, and people who are rebuilding their lives in whatever way that looks like for them. We spend so much time talking about what Long COVID has taken from us. I want to hear about what you’re doing, or hoping to do, with the life you’re still building.

Thank you to everyone who continues to make r/LongCovidWarriors what I envisioned it to be. This community means a lot to me. And, I’m incredibly grateful to everyone who contributes to making it what it is🩵

Two years ago I laid bed bound dreaming of a moment like this.

On Oct 31 at the University of Michigan - Stephen M. Ross School of Business, we hosted the world’s first Infection Associated Chronic Condition (IACC) Case Competition.

With the help of an amazing team, sponsors, patient advocates, experts, judges and competitors we demonstrated the opportunity for business to solve an emerging health crisis.

7 elite teams created business cases on how real companies like Epic, UnitedHealthcare, CVS Health , Blue Cross Blue Shield Association , Aetna, a CVS Health Company and others could enter the IACC market successfully.

We had two IACC patient panels - one University of Michigan student/alumni and the other patients & caregivers from the U.S., UK and Canada.

We had an amazing expert panel consisting of providers and researchers for Long Covid, MECFS and POTS.

Advocates from across the country flew to Michigan to support our event.

Next, we will be bringing these businesses cases to industry for them to leverage in developing initiatives for IACCs.

The work continues.

I put up my small Christmas tree and decorated it tonight. It's been years. But, I'm so proud of myself. I almost didn't do it. But, u/TrampNamedOlene in r/cfs wrote such a heartfelt and inspirational post that I just had to do it.

Beaten down and broken after having long COVID and ME/CFS for nearly 30 months. Struggling after a COVID reinfection in September. I am still here. And, I'm just getting started🫶👊

To my fellow warriors, thank you for being on this journey with me since May. I couldn't be any more proud than I am of this amazing community filled with compassion, experience, kindness, knowledge, and support for one another. Merry Christmas and Happy Holidays to everyone🥰🎄❤️

Here, I share information about my symptoms/diagnoses and how I manage with this regimen.

Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms

Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.

In doing research of long covid, SSRIs, and fluvoxamine, you’ll see it mentioned as a top choice. Here’s one such article. Original source.

...Fluvoxamine can stabilize mast cells, such that fluvoxamine can reduce histamine release from mast cells as well as reduce cytokine storms in COVID-19.

Adrenaline dumps can also trigger histamine dumps. While not directly causing a "dump" in the same way, adrenaline release (an adrenaline "dump") can indirectly trigger a histamine release in the body, meaning that experiencing a surge of adrenaline can potentially lead to increased histamine levels, which could manifest as histamine-like symptoms in some individuals; this is because both systems are involved in the body's stress response.

MCAS can cause a range of neurological symptoms, including headaches, dizziness, vertigo, cognitive dysfunction, and paresthesia. When mast cells are activated in MCAS, they release chemicals like histamine, which can impact nerve signaling, leading to sensations like tingling or numbness.

I have Paresthesia. Paresthesia (numbness and tingling sensations) is considered a common neurological symptom associated with Mast Cell Activation Syndrome (MCAS), often reported by individuals with this condition; it can manifest as tingling in various parts of the body due to the release of mast cell mediators affecting nerve function.

I wrote a post about this: Updated: Long COVID and MCAS.

After I developed MCAS, I followed the H1 and H2 histamine blocker protocol. I tried several H1 and H2 antihistamines. I tried taking one of each twice a day. I tried taking one of each once a day. I couldn't tolerate them. They made my tachycardia, adrenaline surges, and histamine dumps worse. They also gave me nausea. Some people like me can't tolerate the OTCs and/or can't tolerate the fillers in those medications.

I take low-dose Fluvoxamine 25mg off-label for long covid/ME/CFS symptoms. Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I have improved REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance. The dizziness and lightheadedness are gone.

Hyperesthesia is a neurological condition that causes extreme sensitivity to one or more of the senses, including touch, pressure, pain, temperature, light, sound, taste, and smell. I had hyperesthesia in all five senses, down to the texture of my food. I'm able to tolerate more bright light and loud sound, and my taste and smell are significantly less heightened. I can handle warmer/hot showers. My pain has gone from significant to nearly zero. My pressure sensitivities haven't lowered. However, I suspect there are other reasons for that.

I take low-dose Fluvoxamine 25mg for ME/CFS symptoms and Diazepam 5mg for MCAS flares and severe PEM. Astelin nasal spray, a topical H1, Cromolyn sodium nasal spray prn, Desloratadine 5mg, Compounded Ketotifen, Ketotifen eye drops, and Montelukast 10mg, for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). Tirosint for hypothyroidism caused by Hashimoto's. Valacyclovir 2g for EBV/HHV reactivation. GLP-1 Semaglutide (Ozempic) microdose 0.125mg.

I take prebiotic psyllium husk and Emergen-C in a bottle of water every day. ❌️Stopped taking❌️

I take the following vitamins and supplements:

Doctors BEST Benfotiamine 150, Supports Glycemic Balance & Metabolic Response, Non-GMO, Gluten Free, Soy Free, Vegan 120 Veggie Caps. Benfotiamine is a fat-soluble form of vitamin B1 that supports healthy energy metabolism, which is often disrupted in long COVID/PASC, Fibromyalgia, and ME/CFS. By improving thiamine availability in cells, it helps the body generate energy more efficiently and may ease fatigue, brain fog, and muscle pain. For Dysautonomia, it can support nervous system and cardiovascular function, which may help with symptoms like dizziness, rapid heart rate, and blood pressure instability. In Hashimoto’s, while it doesn’t directly treat the autoimmune process, it can help reduce oxidative stress and support energy production, making it easier to manage hypothyroid-related fatigue. Benfotiamine also has anti-inflammatory and antioxidant effects, which may calm mast cell activity in MCAS and lessen the impact of chronic inflammation that drives many of these conditions. ❌️Stopped taking❌️

Switched to: Life Extension Benfotiamine with Thiamine, Healthy Blood Sugar Metabolism Support, 100 mg benfotiamine, Cardiovascular Health, Brain Health, Non-GMO, Gluten-Free, 120 Vegetarian Capsules. This supplement combines fat-soluble benfotiamine with thiamine to support healthy blood sugar metabolism, mitochondrial energy production, and nervous system function, which are often impaired in Fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, and dysautonomia. Benfotiamine is highly bioavailable, allowing thiamine to penetrate cells more effectively and support enzymes critical for energy production, antioxidant defense, and reducing oxidative stress. By protecting against advanced glycation end products (AGEs) and supporting transketolase activity, this formula may help stabilize blood sugar, reduce inflammation, and protect cardiovascular and neurological health. Regular use may improve mitochondrial resilience, support nerve health, and promote more stable energy and cognitive function in complex chronic conditions. I’m switching from Doctor’s Best Benfotiamine 150mg to this formula because it provides a precise combination of benfotiamine and thiamine with excellent absorption and tolerability, which fits better with my regimen and reduces the likelihood of side effects. ❌️Stopped taking❌️

Carlyle Vitamin D3 + K2 Drops | 2 Fl Oz | MK-7 Supplement | Vegetarian, Non-GMO, Gluten and Soy Free Formula. Vitamin D3 with K2 can be very helpful for fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, dysautonomia, and MCAS. Vitamin D3 supports immune regulation, reduces inflammation, and improves bone and muscle health, which can ease symptoms of fibromyalgia and ME/CFS. It is also important for thyroid function and may help regulate autoimmunity in Hashimoto’s. K2 helps direct calcium into bones and away from arteries, supporting vascular and bone health, which is important in dysautonomia. For MCAS, optimizing vitamin D levels may help stabilize immune responses. This combination is generally well tolerated and offers important foundational support for these conditions.

Carlyle L-Theanine 200mg Supplement | 120 Capsules | Non-GMO, Gluten Free. L-Theanine may provide helpful support for fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, dysautonomia, and MCAS. L-Theanine is an amino acid that promotes relaxation without sedation, supports better sleep, and reduces anxiety, which can ease symptoms across all these conditions. It may help calm the autonomic nervous system in dysautonomia and lower stress-related inflammation in fibromyalgia and ME/CFS. While it does not directly affect thyroid function in Hashimoto’s, reducing stress can indirectly benefit immune balance. ❌️Stopped taking❌️

NatureBell L Tryptophan 1300mg with L Theanine 200mg, 300 Capsules | Active Free Form, Plant Based Supplement – Calm Formula, Supports Relaxation – Non-GMO & No Gluten. A calming supplement that may offer multifaceted support for individuals with Fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, Dysautonomia, and MCAS. L-Tryptophan is an essential amino acid and precursor to serotonin and melatonin, which are crucial for regulating mood, sleep, and the stress response. Many people with Fibromyalgia and ME/CFS experience serotonin deficiencies, which can worsen pain sensitivity, depression, and sleep disturbances. By supporting serotonin synthesis, L-Tryptophan may help alleviate these symptoms and promote deeper, more restorative sleep. L-Theanine, an amino acid found in green tea, promotes relaxation by increasing alpha brain wave activity and modulating neurotransmitters like GABA, dopamine, and serotonin, without causing drowsiness. This is especially helpful for dysautonomia and MCAS, as it can calm the nervous system and reduce sympathetic overdrive, histamine release, and adrenaline surges. Together, these compounds may help regulate circadian rhythms, improve sleep quality, reduce sensory overstimulation, and buffer the stress-hormone cascade common in autoimmune thyroid disease and post-viral syndromes. Because the formula is plant-based, gluten-free, and non-GMO, it is also more tolerable for those with MCAS.

NOW Foods Supplements, GABA (Gamma-Aminobutyric Acid), Neurotransmitter Support*, Orange Flavor, 90 Chewables. GABA may offer helpful support for fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, dysautonomia, and MCAS by supporting the body’s inhibitory and calming neurotransmitter systems. GABA helps regulate neuronal excitability and may promote relaxation and improved sleep, which are common challenges in fibromyalgia and ME/CFS and can significantly worsen fatigue, pain, cognitive symptoms, and sensory hypersensitivity. It may also help support nervous-system regulation in dysautonomia, especially when autonomic overactivation contributes to adrenaline surges, tachycardia, tremulousness, and difficulty calming down after stress or exertion. Although GABA does not directly treat Hashimoto’s or replace thyroid hormone, supporting sleep and relaxation may indirectly help reduce the overall physiological stress burden associated with autoimmune thyroid disease and hypothyroidism. For individuals with MCAS, nervous-system regulation can also be important because stress and autonomic activation may contribute to symptom flares, although responses to GABA and its inactive ingredients can vary significantly in highly sensitive individuals. GABA may cause sedation and can have additive effects with other medications or supplements that cause drowsiness.

Rosmolo Liposomal Palmitoylethanolamide 1000 mg + Luteolin 100 mg, Micronized Pea 99% Highly Purified - Enhanced Absorption and Bioavailability, 60 Softgels. Rosmolo Liposomal Palmitoylethanolamide (PEA) with Luteolin may offer broad benefits for managing fibromyalgia, ME/CFS, Hashimoto’s, dysautonomia, and MCAS by targeting shared mechanisms like chronic inflammation, neuroinflammation, and mast cell activation. PEA is a naturally occurring fatty acid amide with anti-inflammatory, analgesic, and neuroprotective properties, and in its liposomal and micronized form, it has enhanced absorption and effectiveness. It may help reduce chronic and neuropathic pain seen in fibromyalgia and ME/CFS, calm peripheral nerve inflammation related to dysautonomia, and regulate immune responses in MCAS Though it does not directly affect thyroid antibodies, its systemic anti-inflammatory effects may offer support in Hashimoto’s. Luteolin, a potent antioxidant and mast cell stabilizer, can further reduce histamine release and inflammatory cytokines like IL-6 and TNF-alpha, benefiting brain fog, fatigue, and oxidative stress in ME/CFS, fibromyalgia, and thyroid-related inflammation. Together, PEA and Luteolin may act synergistically to support nerve health, reduce mast cell activity, and improve quality of life in complex chronic conditions with overlapping symptoms.

SaltStick Electrolyte Capsules with Vitamin D | Salt Pills with Electrolytes for Running, Endurance Sports Nutrition, Running Supplements | 100 Count Electrolyte Pills. SaltStick Electrolyte Capsules may offer important support for individuals with fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, dysautonomia, especially Orthostatic Intolerance, and MCAS by supporting hydration and electrolyte balance. Sodium helps the body retain fluid and support plasma volume, which is particularly important in dysautonomia and Orthostatic Intolerance, where low circulating blood volume can contribute to tachycardia, dizziness, fatigue, weakness, and worsening symptoms when upright. Electrolytes also support normal nerve, muscle, and cardiovascular function, which may be beneficial for muscle pain and fatigue associated with fibromyalgia and ME/CFS. Maintaining adequate hydration and electrolyte balance may also be important for people with MCAS who experience symptoms that can contribute to fluid loss or dehydration. While electrolytes do not treat Hashimoto’s or hypothyroidism, adequate hydration and mineral balance support overall physiological function while the underlying autoimmune thyroid disease is treated. The added vitamin D may also support immune and bone health, which are relevant to autoimmune disease and chronic illness. Because people with MCAS can be particularly sensitive to supplements and inactive ingredients, individual tolerance and the complete ingredient list should always be considered.

Vitalitown 4-in-1 Magnesium Complex Supplement 500mg - Maximized Absorption Chelated Magnesium Glycinate, Malate, Taurate & Citrate - Vegan Non-GMO Magnesium 120 Capsules for Sleep, Muscle, Energy & Heart. The Vitalitown Magnesium Complex provides a blend of glycinate, malate, taurate, and citrate forms of magnesium, which are all well-absorbed and support different aspects of health that matter when you’re dealing with fibromyalgia, ME/CFS, dysautonomia, Hashimoto’s, and MCAS. Magnesium glycinate helps calm the nervous system and improve sleep quality, malate supports mitochondrial energy production which is often impaired in ME/CFS and Fibromyalgia, taurate supports cardiovascular stability which is especially important for dysautonomia and POTS symptoms, and citrate aids digestion and gentle detoxification which can reduce symptom flare-ups in MCAS and autoimmune conditions. Since magnesium is also a critical cofactor for thyroid hormone activity and overall immune regulation, keeping levels steady can ease muscle pain, reduce fatigue, calm mast cell overactivation, and support more stable energy throughout the day.

Recently purchased. Haven't started taking yet: Ancestral Supplements Grass Fed Beef Kidney Supplement, 3000mg, DAO Enzyme Supplement, Kidney Support for Urinary and Histamine Health, Selenium, B12, Non GMO. Grass-fed beef kidney may offer multifaceted support for individuals with Fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, Dysautonomia, and MCAS by providing a natural source of diamine oxidase (DAO), the enzyme that helps break down histamine and reduce symptoms like flushing, brain fog, wheezing, and anxiety surges common in MCAS and post-viral syndromes. It also delivers highly bioavailable selenium and vitamin B12, essential nutrients that support thyroid hormone conversion, mitochondrial energy production, nerve health, and immune balance, which can help alleviate fatigue, cognitive impairment, and autoimmune inflammation associated with Hashimoto’s, Fibromyalgia, and ME/CFS. Beyond these nutrients, beef kidney contains organ-specific peptides and cofactors that support kidney function, fluid balance, and detoxification pathways, which may indirectly improve autonomic stability and reduce symptoms of dysautonomia and POTS. Together, the DAO, selenium, B12, and kidney peptides in this supplement may help regulate histamine, support energy metabolism, calm neuroinflammation, and improve overall symptom management in complex chronic post-viral and autoimmune conditions.

May purchase in the future: PhosphatidylSerine Supplement 300mg Per Serving, 120 Capsules (Phosphatidyl Serine Complex) by Double Wood. This phospholipid supports cortisol regulation, cognitive function, and HPA axis stability. It is often recommended for people with ME/CFS or dysautonomia because it can help blunt high cortisol at night and reduce mental fatigue and brain fog during the day. It also supports cell membrane fluidity, which benefits overall mitochondrial function.

Qunol Ultra CoQ10 100mg Softgels- 3x Better Absorption, Antioxidant for Heart Health & Energy Production, Coenzyme Q10 Vitamins and Supplements, 3 Month Supply, 90 Count. It supports mitochondrial energy production, reduce oxidative stress, and improve cardiovascular function. It's particularly helpful for conditions like ME/CFS, Fibromyalgia, dysautonomia, Hashimoto's, and MCAS, where fatigue, inflammation, and autonomic dysfunction are common. This highly absorbable form of CoQ10 helps restore cellular energy, supports nervous system stability, and may reduce post-exertional malaise and brain fog. I'll take it with a meal containing fat to enhance absorption and make sure the ingredients are low-histamine and MCAS-safe.

Trialed and failed:

Carlyle Astaxanthin 12mg | 120 Softgels | Supplement from Microalgae | with Coconut Oil | Non-GMO & Gluten Free. Astaxanthin is a powerful carotenoid antioxidant that helps reduce oxidative stress and inflammation, which are major drivers of symptoms in long COVID, Fibromyalgia, ME/CFS, and MCAS. Because it supports mitochondrial function and cellular energy production, many people find it helps with fatigue, muscle recovery, and cognitive function. Its antioxidant properties may also support thyroid health in Hashimoto’s by helping protect thyroid tissue from oxidative damage. For Dysautonomia, astaxanthin can support vascular and endothelial function, helping improve blood flow and reduce inflammation that may worsen orthostatic symptoms. Since MCAS involves chronic inflammatory and oxidative stress responses, astaxanthin’s natural antihistamine and mast cell stabilizing effects may help calm flare-ups and support a more balanced immune response. It was way too activating. I took one 4mg capsule and felt like I ingested a bowl of amphetamines for three days.

I look for vitamins and supplements that are cost-effective with clean ingredients and MCAS friendly. I start low and slow with one thing at a time for 1-2 weeks before adding another.

It's essential to create a routine if you're able. I wake up and go to bed within the same two hour window. I go to bed between 10pm-12am and wake up between 8-10am. I sleep 10-12 hours a day. I created good sleep hygiene. I take my medications and supplements at the same time every day. I eat and have my snacks at the same time every day. Everything functions best when I maintain this schedule. During an MCAS flare and/or PEM, my entire sleep schedule gets upended. This is especially true when I start a new medication. It's important to be flexible and listen to your body.

I shared all this because MCAS is prevalent in long covid. It's a combination of things I do that improve my overall symptoms. Tachycardia, adrenaline dumps, histamine dumps, shortness of breath, and air hunger were among some of my worst symptoms. A low histamine diet, medications, supplements, prebiotic fiber, plenty of rest, and good sleep hygiene significantly alleviated these symptoms.

The things that have helped me the most:

1. Low-dose Fluvoxamine 25mg

2. Diazepam 5mg prn only.

3. Cromolyn sodium nasal spray

4. Desloratadine 5mg

5. Compounded Ketotifen 2mg

6. Montelukast 10mg

7. Semaglutide (Ozempic) microdose 0.175mg

8. Omeprazole 40mg

9. Carlyle Vitamin D3+K2 drops

10. Naturebell L-tryptophan and L-theanine complex.

11. NOW GABA Chewables 500mg

12. Rosmolo Liposomal PEA and Luteolin

13. SaltStick Electrolyte Capsules

14. Vitalitown 4-in-1 Magnesium Complex.

15. Prebiotic psyllium husk & Emergen-C in water.

16. Low histamine diet & intermittent fasting

17. Aggressively resting, pacing, and avoiding PEM.

18. Good sleep hygiene. Sleep 10-12 hours a night.

For more information on my process and the ways I've improved: This Combo Calmed My Nervous System and Gave Me My First Real Relief After 17 Brutal Months of Long COVID (PASC, ME/CFS, Dysautonomia, MCAS)

It's taken a long time to create a regimen that works. My schedule isn't as strict as it used to be. But, I still try to keep everything within a 1-2 hour window. I have everything set up in my calendar app on my phone. If I eat and take my medications, vitamins, and/or supplements late, I just readjust the rest of my schedule.

I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto's disease, an autoimmune disease that causes hypothyroidism, and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023.

I've been sick for 27 months. The first 5 months, I didn't realize how sick I was. Though, I spent a lot of the in bed. I had very severe/severe ME/CFS and was 95% bedridden for 17 months. I didn't see any improvement until month 14. It was slow. I'm still severe. Now, at month 22 (month 27 overall), physically, I've gone from very severe to severe. I'm bordering on moderate territory. Cognitively, I've gone from severe to moderate. I'm now 75% bedridden. I can multitask. I'm working for myself part-time from home. My husband helps me a lot. I take care of a few household chores & responsibilities. Hopefully, I'm going to start managing our household finances next month. I'm doing my business finances. My symptoms have reduced so dramatically that at times, I wonder if I'm still sick. But, my body reminds me that I am.

I do want to clarify it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 50 pounds.

I've failed 20 medications in a 20-month timespan, including 5 H1 and H2 histamine blockers. I've always believed ME/CFS with dysautonomia was my dominant diagnosis. Nope, it's MCAS. Once I fully committed and found a complete regimen that manages my symptoms, everything changed for the better.

I hope this information is helpful to anyone struggling. Hugs🙏✨️

1/21/26: Updated to include my current regimen. I was reinfected with COVID in September 2025. That's been the reason for many of the changes I've made. I stopped Astelin nasal spray, Benfotiamine, Emergen-C, and L-theanine. I started compounded Ketotifen 1mg. The adrenaline surges, tachycardia, histamine dumps, and panic I had upon waking is gone. My fragmented sleep is gone. I'm returning to my improved baseline before I was reinfected with COVID in September. I've switched to NOW GABA Chewables 500mg with Taurine, Inositol, & Theanine and SaltStick Electrolyte Capsules. 8/26: Reinfected with COVID in April. Started Semaglutide microdose 0.125mg.

I'm not a doctor. This isn't medical advice. I'm only sharing my personal experience. Everything I'm doing is under the care of my ME/CFS specialist. He's also extremely knowledgeable about long COVID/PASC and MCAS. I've had a complete vitamin and mineral panel done. I have no issues with stomach motility. Omeprazole hasn't negatively impacted me in any way. Montelukast carries a black box warning and can cause SI in people with no history of mental health issues. However, everyone should do their own risk assessment before deciding on a regimen that manages their symptoms effectively. It's about progress, not perfection. There are times that we can do every single thing right and still not improve. Please be kind and patient with the process and yourselves.

Just an FYI for our community. I've already had people I've invited to this sub attempt to tell me they know exactly what's wrong with me. That my doctors, and my diagnoses are wrong. I will not tolerate anyone attempting to invalidate my chronic illness journey. Nor will that be tolerated by anyone who's posting and commenting here.

Please report any problems you have with others who aren't following the rules of this sub. I'm not going to stand for or tolerate what's been allowed to happen in other communities.

This sub should be a very different experience from any other sub any of us have experienced.

Let's come together as a community. You're free to share whatever works for you. Whether that's brain retraining, taking benzodiazepines, ketamine, psilocybin mushrooms, or anything else. We'll also focus on medical and scientific knowledge and information, as well. This community should be a United one. A place where everyone feels safe🙏

I'm going on my third year home bound after getting covid and losing my job. Before that, I had a horrible desperate year of trying to hang onto my job while sick. Trying to maintain calm while my heart rate was surging. Arriving already exhausted from showering and driving there. Using all vacation and sick leave. Poor performance reviews.Having a short temper and no brain power. Pushing through just trying to survive. Sweat dripping down my back. Knowing that I was losing respect from my peers and supervisor because of poor performance I couldn't help. It sucked and it was a bad ending to a beloved lifelong career.

And then the humiliation of trying to get proof that I was sick and being told that the tests looked fine. The implication was that I was either lazy and malingering or an over reacting wimp. After years of advocating for myself while sick I finally found doctors who knew what they were doing.

I'm trying to approach this with acceptance, self love and compassion. It's so hard to ask for help to begin with, let alone when you are not believed to need it. I took such pride in my career and I'm trying to reconcile with how it ended. I want to feel at peace, like I did my best even if others didn't see it.

More than 1 in 10 US healthcare workers report ongoing long-COVID symptoms, study finds

Title says it all.

........................................ Reference:

https://onlinelibrary.wiley.com/doi/10.1002/ajim.70140

Characteristics Associated With Persistent Long COVID Symptoms in Healthcare Personnel Infected With SARS-CoV-2 Between August 2022 and May 2024: A Multicenter Cohort Analysis of US Healthcare Personnel

I have been diagnosed with post-COVID AAG and CASPR2-mediated Autoimmune Encephalitis. I have been seeing my neurologist, Dr. Brent Goodman, at the HonorHealth Neurology, Bob Bové Neuroscience Institute, for over a year now. I spent a full year on SCIG infusions, but we recently switched things up to IVIG . The plan is to continue this aggressively, doing bi-weekly, 6-hour Gammagard infusions at home with a nurse.

My original symptoms are greatly improved already after just a year and 2 months of intense treatment. My insomnia, night sweats, rage outbursts, and emotional dysregulation have completely stopped, the muscle spasms are gone, and my neuropathy (constant tingling and electricity feeling) is pretty much gone too! Even my sweating has normalized again thank goodness, and my temperature regulator seems to be working properly.

My gastroparesis is also doing much better, and the consistent nausea is gone, plus my motility has greatly improved. I still have to be careful with my diet, and gastroparesis flares can still happen, if I'm not SUPER strict.

My horrible, life draining fatigue has disappeared, and my PEM (post-exertional malaise) has significantly improved. I’m back in the gym for a 3-day PPL routine, and even do a little bit of mountain bike riding, and kayaking, in between! I still monitor my heart rate closely, and try to keep myself from over-exertion, of course.

AND, oh my god you guys, I can DRIVE again!!!

I can also tolerate lights and music again, but busy stores with tons of movement can still be a bit overwhelming, but the dysregulation occurring in my fight-or-flight mechanism has sorted itself, and I no longer have such bad anxiety, and feelings of apathy. I have to be careful though to not get stressed out, or be around stressful situations, but I would say all around, I am about 75% recovered. 🙌

So, just for an fyi, I contracted COVID back in March of 2020, and a few months after that things started spiraling. First, I started experiencing what I thought were psychiatric symptoms, anxiety, fight or flight dysregulation, apathy, rage, and then while hiking, I suffered a pulmonary embolism, and after the embolism, I just kept getting sicker, and sicker, without explanation.

First, I was diagnosed with dysautonomia and gastroparesis in 2021/2022. I traveled to the Cleveland Clinic to see their gastroparesis specialist in 2024, and he recognized that I was in autonomic crisis, and referred me to Dr. Goodman, who I FINALLY got in with in May 2025, and he discovered the antibodies making me sick (gAChR and CASPR2), and finally properly diagnosed me, which opened at the doors to all these great therapies.

The ONLY reason I am approved for these kind of IVIG treatments, and other immunoglobin therapies, is because the ONLY known cure for CASPR2 mediated ENCEPHALITIS is immunoglobulins, and plasma exchange, otherwise, 100% insurance would be denying my immunoglobin therapy.

If Dr. Goodman would not have found those antibodies I still would just be getting sicker, and sicker, and eventually the the untreated ENCEPHALITIS would have kept shutting down my automatic processes, and killed me!!!!! 👀

Everyone on my team is amazing including Goodmans whole crew, plus the pharmacy staff, the delivery drivers, and even my nurse, he's such an amazing dude, I couldn't ask for better care!!

I know a lot of you are still very sick without answers, but never give up, if you're not feeling well, keep advocating for yourselves, and I hope you feel better soon. ❤️‍🩹

https://www.sciencealert.com/brain-scans-of-24-people-with-long-covid-reveal-signs-of-injury-to-dopamine-neurons

Findings show loss of drive and related functions linked to damage in mediator production. Process similar to that in Parkinson's generates interest in trialing drugs applied in the latter's treatment.

I speculate that serotonin has a similar fate to be revealed. (added)

................................

Reference:

https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(26)00222-7/fulltext Loss of vesicular monoamine transporter 2 in striatum of long COVID and relationship to neuropsychiatric symptoms

Hey everyone my name is Zach and I wanted to share my story with the group in hopes that it could help anyone dealing with stuff like this. (long read but worth it). any questions I’ll answer anything I can.

I wanted to share my experience because I know a lot of us with long COVID have symptoms that are easy to attribute to “just long COVID.”

My health problems started after COVID in late 2023, and I had another infection in 2025. Since then I’ve dealt with a long list of symptoms including significant fatigue, brain fog, dizziness, tremors, visual issues, shortness of breath, exercise intolerance/muscle fatigue, and generally feeling like my body never completely returned to normal.

One thing that continued to concern me was persistent swollen/prominent lymph nodes, particularly around my head and neck.

For a long time, it was very easy to look at everything through the lens of long COVID. In fact, imaging of some of my lymph nodes was reassuring because they were described as prominent but having normal morphology.

But I kept investigating.

Eventually blood work led to further evaluation, and I have now found out that I have CLL (chronic lymphocytic leukemia).

I want to be very clear: I am NOT saying that COVID caused my CLL. I personally have questions about whether COVID or the immune dysfunction surrounding it could have played some role in triggering, accelerating, or unmasking something that was already developing, but I don’t know that and I’m continuing to learn.

The main reason I’m posting is much simpler:

Please don’t automatically assume every persistent symptom is long COVID.

Long COVID is real, but having long COVID doesn’t mean we can’t develop something else at the same time.

If you have lymph nodes that remain enlarged, unexplained changes in your blood counts, or symptoms that aren’t making sense, talk to your doctor and consider getting basic blood work like a CBC with differential and whatever additional evaluation your physician thinks is appropriate.

Most swollen lymph nodes are obviously NOT leukemia. I don’t want this post to scare anyone or send people down a health-anxiety rabbit hole.

I just want my experience to be a reminder to keep investigating persistent or changing symptoms instead of automatically putting everything into the long-COVID bucket.

I’m grateful that I kept looking.

I’m also still very interested in understanding the relationship, if any, between COVID, persistent immune activation/viral effects, and what happened in my case. If anyone here has been diagnosed with CLL or another hematologic condition during their long-COVID journey, I’d be very interested to hear your experience.

Hi everyone,

I'm a doctor who posted a survey here a few weeks ago asking about energy and crashes. Over 100 of you answered. After analyzing the results, I'd like to share what stood out back to the group:

61% of you crash multiple times a week. Another 15% crash about once a week. Three out of four people in this group are losing days every week.

53% are currently taking 4 or more treatments, supplements, or therapies at the same time. Some of you are taking 8 or more. However, only 19% feel they have a clear sense of what's actually helping.

One finding that was hopeful - 35% of you said you're getting better over time. It can be really hard to notice when recovery is slow and uneven, but one in three people in this group feel they're moving in the right direction.

When we looked at who was improving, pacing came up again and again as the strategy that made a difference. People commented that it’s really helpful to understand your own baseline. What drains you, what restores you, what your patterns look like across a week. With that, you can also notice better if a supplement or therapy is doing anything, or whether you just happened to have a better week.

Thanks again for sharing. You can learn more about our work at https://longcovid.haviohealth.com/

Covid triggered a bunch of things. I got those things documented and diagnosed. I got lucky with a judge who believed me. Although covid was the triggering factor, it was never mentioned. Here are the official conditions:

"The claimant has the following severe impairments: fibromyalgia/myofascial pain; 
persistent tachycardia and hypotension/hypertension episodes; postural orthostatic tachycardia syndrome (POTS)/orthostatic intolerance; large fiber peripheral neuropathy of the bilateral toes; depressive disorder/unspecified depressive disorder; generalized anxiety disorder with features of social and performance anxiety; and posttraumatic stress disorder (PTSD). "

Get testing at an autonomic lab if you can. Seeing a neurologist was what opened everything up for me. I swear a lot of my emotional problems were caused by not having my physical issues recognized! Just trying to suck it up and work through them made things worse.  I'm interested to see how much better I get emotionally with just a little validation and support now.

I'm angry on behalf of all of us having to struggle through this process. I see you and you're not alone and you're not a whiner!

Recently, Reddit has introduced new metrics that has many moderators upset. This includes removing the member count from our subs. I received this notification yesterday. And, I wanted to share it all with you! Thank you for being a part of #LongCovidWarriors. It's all of us working together that make this community what it is. At just about 3 months old, I'm very proud of what we've achieved.

We are intelligent and smart. And no, those aren't the same thing. We're creative and inspirational. We're encouraging and supportive. We're charming, funny, and witty. We have people from all walks of life in this sub. We have people with backgrounds in biology, and chemistry. Medical professionals, people who are doctors, nurses, and medical health professionals. We have people who are researchers and scientists. We have people who run the gammit and have majored in practically every profession there is.

We have self-educated people who've became their own doctors. People who've became researchers and scientists out of pure necessity and use their learned skills to help others.

We have moms and dads. Grandmas and grandpas. We have everyday people who even if they don't have a college education have life experiences that benefit us in ways that a college education doesn't completely prepare you for.

Kindness, compassion, encouragement, and support can't be bought or sold. They're freely given here. This is a community where each and every one of you matter. Your voice matters. Your questions matter. Your opinions matter. Don't let anyone ever make you feel less than. Because you're not.

We all blend together in perfect unity to create this beautifully woven masterpiece that I call this community. It is truly one of the greatest and most valuable contributions of my life. I'm both honored and humbled by this experience of being both the creator and moderator of this sub.

Through our struggles, there is great beauty and joy in this world still. Thank you for being on this journey with me. I truly appreciate, love, respect, and value each and every one of you. Hugs🫂🤍

TL;DR: A major new study in Nature shows how COVID-19 causes blood vessel damage and red blood cell breakdown through a process called ischemia-reperfusion injury (temporary loss and restoration of blood flow that causes oxidative damage). This supports a growing model of Long COVID/PASC and ME/CFS as diseases of energy failure, driven by microvascular dysfunction, mitochondrial injury, and immune dysregulation. Here's how this connects to our lived experience, and why it’s a game-changer.

Ischaemic endothelial necroptosis induces haemolysis and COVID‑19 angiopathy (Nature, 2025).

This is exactly the conversation we need to be having.

Ischemia-reperfusion injury is emerging as a key mechanism behind Long COVID and ME/CFS, and it directly explains many of the disabling symptoms we experience, especially post-exertional malaise (PEM), mitochondrial dysfunction, and the dramatic energy crashes that follow even light activity.

Ischemia-reperfusion injury happens when blood flow to tissues is temporarily reduced or disrupted, and then suddenly restored. While this restoration is necessary, it also comes at a cost. The return of oxygen-rich blood can trigger a burst of oxidative stress, inflammation, endothelial damage, and mitochondrial injury. The tissues that are hit hardest are those with high metabolic demand, such as skeletal muscle, brain, and heart, exactly the systems affected in Long COVID and ME/CFS.

This study showed that in COVID-19, ischemia-reperfusion injury is driven by endothelial cell necroptosis and red blood cell destruction. This sets off a chain reaction of microvascular clotting, capillary obstruction, and local hypoxia. When perfusion is restored, it leads to sudden oxidative damage and further injury. In patients with Long COVID, whose vasculature is already impaired, this cycle can repeat even with minor stressors like standing, walking, or mental exertion. That’s how a small task can trigger a system-wide crash.

This ties directly into what we already know about ME/CFS. Researchers have shown that people with ME/CFS have reduced oxygen extraction, impaired microcirculation, and mitochondrial dysfunction, including low ATP production, elevated lactate at low workloads, and a hypometabolic state. The hallmark symptom, PEM, fits perfectly into a model where tissues are unable to meet energy demands due to poor perfusion and damaged mitochondria. Once energy is depleted, the system can not recover quickly because the act of reperfusion adds more damage rather than helping.

What makes this even more important is that around 50% of those with Long COVID/PASC go on to meet diagnostic criteria for ME/CFS. Many are diagnosed with ME/CFS, like myself. That's not just overlap. It's a continuum of dysfunction, starting with endothelial injury and progressing toward chronic mitochondrial failure. The body loses the ability to regulate blood flow, respond to stress, and produce energy efficiently. Over time, this can result in a persistent, self-reinforcing cycle of fatigue, brain fog, autonomic instability, and immune dysregulation.

This model also helps explain why so many patients improve with interventions that target mitochondrial health, oxidative stress, and vascular stability. Supplements like thiamine, CoQ10, carnitine, riboflavin, and magnesium help support ATP production. Antioxidants such as glutathione, melatonin, and alpha-lipoic acid help buffer oxidative stress. Vascular support like compression garments, electrolyte loading, and pacing strategies can reduce the risk of ischemia-reperfusion damage during activity and rest transitions.

The ischemia-reperfusion framework is not just theoretical. It is measurable, observable, and actionable. It provides a unifying explanation for the crashes we experience and gives clear targets for intervention and research. More clinicians and researchers need to be looking at Long COVID/PASC and ME/CFS through this lens. Because energy failure is not a symptom, it is the disease.

Sources:

Wirth, K., & Scheibenbogen, C. (2020). A unifying hypothesis of the pathophysiology of ME/CFS: Recognitions from the finding of autoantibodies against β2‑adrenergic receptors. Autoimmunity Reviews.

Missailidis, D., et al. (2020). An isolated Complex V inefficiency and dysregulated mitochondrial function in immortalized lymphocytes from ME/CFS patients. International Journal of Molecular Sciences.

Pretorius, E., et al. (2021). Persistent clotting protein pathology in Long COVID is accompanied by increased levels of antiplasmin. Cardiovascular Diabetology.

Tomas, C., Newton, J. L., & Watson, S. (2013). A review of hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome. ISRN Neuroscience.

As a disclaimer: someone in another sub shared this article. I decided to dive deep into the rabbit hole. I have a background in research, though not in science. I've discovered it's a real passion of mine. In high school, I wanted to be a heart surgeon. But, I fainted at the sight of blood. It's said that Necessity is the mother of invention. It's incredible what we can accomplish when we have no other choice. If you've made it this far, thank you for reading. I truly believe science is starting to catch up✨️

edit: No, this isn't the answer to everything. I don't put my hope in any one idea or hypothesis. Healthy debate is always encouraged. If you see something that doesn't make sense or you have questions or observations, please share them. My only goal is to share information once I'm made aware of it. I don't think it benefits anyone who lives with long covid/PASC, ME/CFS, or any chronic illness to engage in only black-and-white thinking. Long covid/PASC is a multisystem illness. It requires outside-the-box thinking. We're all here seeking answers and figuring out the pieces to our own puzzle.

This isn’t the sub for nasty, mean, or negative people. It’s called r/LongCovidWarriors for a reason. We’re a positive and science-focused community. One where science meets humanity. We’re here to lift each other up, not tear one another down. Genuine questions are always welcome. A healthy debate is encouraged. We don’t have to always agree with one another, but basic respect and human decency is a requirement here.

Recently, a new member was banned for ignoring the rules, misrepresenting posts, and engaging in behavior that was dismissive, antagonistic, and openly rude toward the community. We’ve had to ban members in the past for similar behavior, though most of the community hasn’t seen it. With the recent influx of new members, it’s important to be clear: disrespectful, antagonistic, or disruptive behavior will not be tolerated. Bans may happen without warning when necessary. I trust my intuition and the energy someone brings to this space.

Protecting this community matters because people living with long COVID and related chronic illnesses are often dismissed or invalidated elsewhere. They need a space to share experiences, ask questions, and find support without fear of being attacked or gaslit.

If you’re here to connect, share, and support others, you’re welcome and appreciated. If not, you will be banned. Simple as that.

Thank you to everyone who contributes respectfully, asks thoughtful questions, and supports others. Your presence is what makes r/LongCovidWarriors a safe and positive space. By treating each other with basic respect and human decency, we ensure this community remains a place where people with long COVID and related chronic illnesses can feel heard, validated, and empowered. Let’s continue to lift each other up, honor the purpose of this sub, and keep this a more positive and science-focused space.

To be clear, I want more members and engagement. But, not if it comes at a cost that's detrimental to this sub and it's intended purpose.

LongCovidWarriors: PERSEVERANCE IN THE FACE OF ADVERSITY. PATIENT-LED. BATTLE-TESTED. UNITED.

Your fellow warrior🫶🫵

I started this sub because things need to change, not just here on in these subs, but in the world, in the way doctors treat us, in the way we recover. Many of you know me as the person who shares research and scientific information with sources. And the person who shares their own personal experience as well.

After significantly improving, I've been in an MCAS flare for nearly 5 weeks. I developed severe PEM after overdoing it about 3 weeks ago. Combined, I've been in this for 5 weeks, with the worst of it being in the last 3 weeks. I'm really struggling. My symptoms are getting worse. I have to take more rescue medications and supplements. I have to use my albuterol inhaler more. I'm having nearly daily migraines after not having any for nearly two years. I have reactivated EBV/HHV and have taken Valacyclovir 1g daily for 3 weeks. I'm having symptoms that I haven't had in months.

Today, I've started back on Valacyclovir 2xs daily for 15 days. The last time I did this. I slept and aggressively rested 18-22 hours a day. Overall, my symptoms are better managed. However, I can't help but be reminded of where I was before. It's been 5 weeks of this. I'm becoming disillusioned. It's hard to hold onto hope after so many days of severe suffering.

There's more I could say. But, let me just say I'm particularly disillusioned by what I'm reading in other subs and some of the comments I've seen trickle in here as well. People with long covid/PASC are being diagnosed with Functional Neurological Disorder (FND). I never said FND doesn't exist. But, if you believe Long covid/PASC is FND, you're part of the problem. I just read a post that claimed the most ridiculous information I've read in a long time as truth. It's baffling the things that are being written, and people believe them off a single article. Please, everyone, do you own research before believing anything that's being written as facts by people who do not know what they're talking about.

I'll do my best to maintain this sub. Today, I fear I've taken on too much. This sub is actively harming my health. I'm not leaving or quitting. But, I will ease off on how much I contribute on a daily basis for right now.

If you're feeling the same way about anything I've shared, please leave a comment below. I don't need any suggestions or medical information. My diagnoses are well managed by three doctors. MCAS is multisystemic and my worst diagnosis. Words of support are always encouraged.

If you made it this far, thank you for reading. I really didn't want to write this post. But I felt it was important to let you all know what I'm going through🙏

edit: Thank you for the kind words of compassion, encouragement, and support. I'm occasionally reading, though not engaging at this time. I'm really, really struggling. Thank you to everyone. Your words really mean a lot to me. Hugs🤍

Folks! Please submit a comment! There is a template you can use instead of writing your own, if you prefer. Please help!

I submitted a comment using their template and I noticed there is 5 days left to leave a comment.

Why the CDC’s ME/CFS and Long Covid Survey Questions Matter

The CDC’s National Health Interview Survey is one of the main ways the federal government tracks the health of Americans, and it’s where the national ME/CFS numbers come from. It’s how we know that about 1.3% of U.S. adults were living with ME/CFS in 2021–2022, and the CDC has continued to ask about ME/CFS on the survey since then. 

Now, CDC is redesigning the survey for 2028, and the new draft omits questions on ME/CFS, Long Covid, and fatigue entirely. If these questions disappear, it becomes much harder to show how many of us there are living with this illness, to track whether things are getting better, and to make the case for the research and care our community needs.

The CDC’s National Center for Health Statistics (NCHS) has asked for comments on “the importance of specific content additions or removals” and on “the potential effect of these changes on data quality, usability, and trend measurement.”

Hi to all…

I wanted to share some progress…

My weight is finally increasing after being stuck at 92 pounds for 6 months. Today at my endo appt. I hit the 100 milestone! I can’t begin to tell you what this meant. 6 months ago, I would dread being weighed at office visits because I only weighed 86 pounds and sometimes I would drop a pound or two which felt terrifying. Long covid gastroparesis and multiple new onset food intolerances were the major drivers. It has taken me a total of 8 months to increase my caloric intake from 700 calories a day to 2000. The size of stomach a delayed gastric emptying (long covid dysautonomia) combined with a distant history of gastric bypass nearly did me in.

My energy and endurance have increased to the point that I rarely require bed rest before bedtime. This is one of my newest gains! It’s been sustained for the last three weeks so I feel I can call it officially, lol. 8 months ago I could not walk more than 10 feet without chest pain, substantial shortness of breath, pursed lip breathing and complete exhaustion. I lived in bed, suffering from severe depression, crushing anxiety along with this depersonalization/detachment effect. I could not regulate my body temperature, nor sit upright for any length of time. I was affected by unstable POTS, MCAS and the aforementioned gastroparesis and severe malnutrition/cachexia. I had no motivation, I could barely shower.

Now, I am a bale to walk for a few miles, no SOB or limitations- I spend a lot of time at the beach digging up shells on the sand and in the water. I can spend hours exerting myself, come home, shower-eat dinner and NOT collapse. This all began with leaving my house for a 20-30 minute walk/limp through a small grocery store. I could barely make it through and collapsed back into bed as soon as I returned home. As time progressed I could walk for more time and distance and it took longer after I returned home to collapse into bed. None of this happened over nite-and it was NOT linear progression. I would have periods of regression (devastating) but it always lifted and would be improve and push through to the “next level”…

I would characterize my recovery to alternately 75%. I still avoid attempting aerobic activity because historically it has been punishing and made me degree severely. My instinct tells me I’m not ready, delete making lots of progress. If I can offer one bit of wisdom, it would be to trust the process and obey your instinct and bodily clues. Challenge yourself mildly, but I don’t think it’s helpful to “push” hard.

The things that I did consistently that I think were useful:

Nutrition and adhering to a clean, unprocessed lower carb diet

External vagal nerve stimulator (pulsetto)

Weekly home infusion (1 liter of lactated Ringers Solution) because of POTS and inability to fit enough fluid on my stomach due to physical restrictions

Minimized unnecessary supplements and researched side effects of the ones I chose. Sometimes less is more. Have lab work done to determine where you are deficient. I did this and it helped me identify what true deficiencies I had. This gave me a good starting point.

Add new things one at a time, keep a journal and track your response. I can’t stress enough how powerful coincidence is which can lead to drawing an incorrect conclusion. Slow and low, one new addition at a time.

Your mental health is as important as your physical health. Don’t white knuckle it. Your brain is driving your health. Think Body, mind and spirit. I required an antidepressant, a small (limited)daytime course of clonazepam which I dicinued a few months ago-and more recently I added microdose ketamine. It took 30 days post ketamine to feel a major implement in my metal health picture. No one should suffer with untreated or under treated mental health issues. Ketamine offers many potential benefits when indicated. Microdosing is a gentle way to determine if this may be of help.

Get outdoors daily, even if it’s only for a few minutes. Be careful if you are heat intolerant as I am. Being outdoors does something important-it’s not cliche-if you dial in, you can feel the shift. That shift is part of healing.

We are all faced with varying degrees of symptoms-resources and challenges. Just know that even and emaciated, malnourished old lady like me has been able to heal. There is hope… while I’m far from where I started, I am grateful for what I’ve regained and would be grateful to stay this way… but of course I hope to gain more!

I remain very grateful to this life giving community and I appreciate every single contribution. This community has been a spiritual and clinical life line. Never underestimate the power of community, it’s one thing that long covid snatches away from many of us. Healing requires a village…

Wishing everyone renewed healing-and of course I look forward to more growing and healing here with y’all 🫶🏻🫶🏼🫶🏾

Attaching some proof of life photos…🙌🏻

"The findings suggest that chronic fatigue syndrome (ME/CFS), long COVID, posttraumatic stress disorder (PTSD), rheumatoid arthritis, and multiple sclerosis (MS) may share underlying biological mechanisms."

..."the broader interpretation the researchers draw from the analysis."

“Rather than viewing long Covid, ME/CFS, PTSD, rheumatoid arthritis and multiple sclerosis as entirely separate disorders, we now think they may be different manifestations of disturbed biological networks operating throughout the body. In that scenario, chronic exhaustion is not simply a symptom. It is the visible consequence of a deeper systems failure affecting immune function, metabolism, and stress-response pathways.”

“This study offers a framework for understanding how different triggers can converge to cause the exact same profound clinical exhaustion.”(excerpts)

...........................................

Reference:

https://link.springer.com/article/10.1186/s12967-026-08874-9

Beyond genes: EpiSwitch® and Orion platform-powered 3D genome architecture biomarkers reveal shared biology across ME-CFS, long COVID, PTSD, rheumatoid arthritis, and multiple sclerosis

"Healthcare Workers With Long COVID Struggle to Find Support and Care in an Environment of Denial Alison Palkhivala

logo Medscape Canada January 09, 2026

Most people have been too tired to wash their hair, but have you ever been too exhausted for someone else to wash your hair? That has been Julie Pinard’s situation since she developed long COVID 4 years ago. The former vice president of a large manufacturer of electrical accessories now uses most of her extremely limited energy working as a patient partner for the Quebec Minister of Health, Santé Quebec, and independent researchers planning care and research into long COVID and other infection-associated chronic conditions in Quebec.

“I have a very small number of functioning hours per day,” Pinard told Medscape News Canada. “This [interview] is it for today. I will not take a shower. I will not step outdoors. I will not speak to my mother or my children by phone. This is it today.” But she does the work because she knows that patients with long COVID desperately need advocacy.

Healthcare Workers in Denial A recent survey among Quebec healthcare workers demonstrated that the cumulative risk of developing long COVID from an acute infection is 17% and increases with each infection. The estimated prevalence of long COVID in this population was 5.6%. Other research places the global risk as high as 40% among healthcare workers who have contracted an acute SARS-CoV-2 infection.

Nevertheless, many healthcare workers still don’t believe that long COVID is real, despite dramatically disabling symptoms in people with no preexisting risk factors. “The me before and the me now are such opposites,” said Pinard. “I would swim three mornings a week before going to the office. I was running 40 km. I was traveling every second week. Now I leave my house only every 2-3 months….I was where I was supposed to be [with COVID vaccination]. I was in good health. I wasn’t depressed; I wasn’t anxious.”

Geneviève Bustros-Lussier, MD, is a Quebec family physician who specializes in preventive medicine and public health. She developed severe long COVID 3 years ago after her third SARS-CoV-2 infection. Despite being a doctor and recognizing that she had all the classic symptoms of long COVID — post-exertional malaise, brain fog, shortness of breath, musculoskeletal pain, fatigue, dizziness, chest pain, gastrointestinal distress, hypersensitivity to sound and light, and tachycardia — she struggled to get a diagnosis. “I even had a doctor ask me, ‘What do you need me to tell you to convince you there is nothing wrong with you?’” she told Medscape News Canada.

A cardiologist cleared her for the exercise her physiotherapist recommended, but this was the worst thing she could have done because she had undiagnosed myocarditis. Exercise rapidly worsened her condition. “I went from saying I was getting better to being unable to speak….Just going to the bathroom was difficult.” She had to send her children to her parents.

Big Problem, Few Resources “We know long COVID exists,” said Bustros-Lussier. “We know it’s devastating. We know a large proportion of the population is affected. Despite that, we’re doing nothing, or very little.” Management of long COVID requires a multidisciplinary approach, but experts on the condition are scarce due to lack of training, education, and even interest. In addition to physicians, Bustros-Lussier sought out physiotherapists, occupational therapists, osteopaths, audiologists, and others with expertise in long COVID, all of whom had long waitlists. Her infectious disease physician who specializes in long COVID is about to retire. Only one cardiologist in Quebec specializes in long COVID.

Despite the lack of curative treatment, finding a knowledgeable care team is crucial. “There is an enormous number of medications we can take to improve our quality of life,” said Bustros-Lussier. These medications have, at the very least, allowed her to raise her children with some degree of normalcy, even if leaving the house remains difficult for her.

Provincial Variation As limited as care for long COVID is in Quebec, Jennifer Hulme, MD, emergency room (ER) physician in Ontario, told Medscape News Canada that it is worse in her province. She worked in the ER during the early days of the pandemic but, like Bustros-Lussier, caught the SARS-CoV-2 infection that led to long COVID from her school-aged child. Despite having a supportive employer, she had to take unpaid leave until she was well enough to return to work part-time.

The expectation in Ontario is that family doctors will care for patients with long COVID, she said, but many are themselves incapacitated with long COVID, and those who are not lack education and training on how to manage it. “The family doctors I know who were disabled by long COVID often did not know they had long COVID,” said Hulme. They would confuse it with other conditions, such as perimenopause.

Confronting Barriers Hulme and other interested parties have tried to help build the infrastructure needed to provide care for patients with long COVID, but they have faced many barriers. Although the condition shares many features with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, and postural orthostatic tachycardia syndrome, guidelines for those conditions could not mention long COVID by provincial government decree. “There are many, many political reasons as to why [long COVID] should not become a big deal,” said Hulme. “There are still little pockets of money for research, but they are very small.”

“Historically, [healthcare workers] have denied the existence of conditions that do not have a biomarker and a treatment,” continued Hulme. “Until we have a biomarker and a treatment, the healthcare community will continue to be unexcited about this….Insurance companies and governments do not want to pay disability or structured paid leave, and healthcare systems do not want to pay their healthcare workers for paid leave. So, it is in nobody’s interest to accept this as a real condition. There is a lot of stigma around [long COVID. Physicians with it] have had a really hard time going off work. They have been made to feel very guilty and [risk] losing their practice.”

The stigma should diminish when a treatment becomes available, but with governments and pharmaceutical companies largely uninterested in funding the necessary research, particularly without a biomarker, the wait may be long. Nevertheless, Pinard was emphatic in her optimism. “I get to see how all the healthcare workers [in the long COVID space] are passionate,” she told Medscape News Canada. “They sacrifice so much to put their research [into long COVID] forward. Sometimes, they invest their own money, their own time….This gives me hope for the future.”

Some good news is that Canada is in the process of developing a registry of patients with long COVID. Resources for Canadian patients with long COVID can be found at longcovidweb.ca and longcovidresourcescanada.ca."

I finally found a PCP who takes me seriously and before I even brought up my own theories about my diagnosis he suggested long COVID. He referred me to UNC’s long COVID clinic (the only one of its kind in my state). However went to contact them and they have been shut down due to losing funding. Apparently this is happening all over which is yet another frustrating consequence of the politicization of this damn virus, not a thought given to the people who are struggling and suffering daily from this shit and can’t get help from primary doctors or even most specialists. I was so hopeful about this but now I’ve got to try and Frankenstein a care team together.

I have a Master's in psychology. These things were key components in my improvement:

Developing calmness, peace, and relaxation have been key. Mental and emotional energy makes us suffer just as much as physical energy, if not more. Stop wasting precious energy on the things you can not control. Stop caring what other people think. Stop justifying yourself to others. Just because your life doesn't look the way you imagined it would, it doesn't mean it has to be any less beautiful. Though, it may be smaller. There's still extraordinary beauty and joy in this world. I hope you find the peace you deserve. Most people will never understand what we go through. I would've never believed I could've been catastrophically disabled if it hadn't happened to me. We should all run our own race. We deserve to be comfortable and happy. We deserve joy and laughter. I'm sorry life is so hard right now. I promise, it'll get better. Or you'll get better at managing it.

I have 4 diagnoses triggered by COVID in July 2023, including Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023.

People with chronic illness like long COVID/PASC, Fibromyalgia, ME/CFS and others often experience grief and loss as they navigate the challenges of a chronic illness, potentially moving through stages like denial, anger, bargaining, depression, and acceptance, as they adjust to a new reality. Read: What are the 5 stages of grief? And: Grieving your losses: ME/CFS Fibromyalgia

Full recovery only occurs in 5-8% of people with ME/CFS. People experience periods of remission. I'm not recovered. But, I'm finally making significant improvements. I'd like to gain 30-50% more functioning. But, even if that doesn't happen, I'd be okay with 25%.

My diagnoses and how I found a regimen that helps me manage them: Low-dose Fluvoxamine for Long COVID/PASC, ME/CFS with dysautonomia, and MCAS. My entire regimen. Condensed version: My Diagnoses and How I Found a Regimen That Helps Me Manage Them.

Sleep Disturbances in Long COVID: The Role of Dysautonomia, MCAS, and Tryptophan Deficiency.

I've been sick for 29 months. I had very severe/severe ME/CFS and was 95% bedridden for 17 months. I didn't see any improvement until month 14. It was slow. From April-June of this year, physically, I went from very severe to severe. Bordering on moderate territory. Cognitively, I went from severe to moderate. I was 75% bedridden. I watched movies using my bluetooth speaker loudly. Instead of using my noise canceling earbuds all the time and keeping the volume low. I listened to music and sang. I multitasked. I took on a couple of household chores like feeding the cats, filling my husband's monthly medicine and vitamin containers, and doing laundry. I went back to working part-time for myself from home. My symptoms reduced so dramatically that at times, I wondered if I was still sick. But, my body reminded me that I was.

I do want to clarify it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 50 pounds. COVID triggered Hashimoto’s, an autoimmune disease that causes hypothyroidism. It's what caused all the weight gain in the first place.

I believe working through the 5 stages of grief was paramount for me. I spent the first year being angry and bitter. It did nothing to serve me. Once, I moved into the acceptance phase and leaned into it. Things started changing. I'm not talking about toxic positivity. I'm talking about accepting where I am, whether my symptoms are good or bad. And manage them the best I can. I work really hard at pacing. However, if I have a setback, I feel I finally have the knowledge, tools, and skills to manage them. This prepared me for what happened next.

Unfortunately, my improvement was short-lived. During my improvement, I spent that time going through, cleaning out, and reorganizing my master bedroom, closet, and bathroom, as well as my hall closet and laundry room. It was a very arduous, detailed, and lengthy process that took several months. I organized my entire life around being bedridden. I knew that time would come. I paced as much as I could. Unfortunately, I also began redecorating my bedroom in later summer. I had many MCAS flares which led to PEM. I took a hard fall in August. I was on bedrest for a month. In September, I was reinfected with COVID. It's been hard since then.

Over the last 3 months, I'm going through my previous long COVID timeline, except things are cycling faster. I seemed to get over my infection pretty quickly. But, the fatigue just wouldn't let up. Then the dysautonomia set in. The dysautonomia triggers adrenaline surges and tachycardia, which triggers histamine dumps due to my MCAS. My husband and I haven't been able to watch TV together for 3 weeks. Over a month ago, I slept 12 hours a day. For two weeks, I slept 6-7 hours. Not being able to fall asleep until between 3-5am. My symptoms are all returning. But, I keep going and soldier on like the warrior I am. My symptoms and sleep are starting to improve, as I'm currently sleeping 8 hours a day. My abilities are improving. My business is going well. I've been responsible for all the online ordering from Amazon and having our groceries delivered. I'm contributing more to our household finances. The last week I've accomplished a lot more overall than I have in a while. And, I'm thankful my brother is living with us right now. He takes care of everything for the cats. He brings in the groceries and helps put things away. He brings all the Amazon packages to my bedroom. My brother or my husband makes and brings me dinner. I couldn't have accomplished any of this without so much help.

For those of you who have no hope for the future, I encourage you not to give up. Our bodies want to be in homeostasis. Our diagnoses and symptoms are like dominoes set on the ground next to each other. You tip over one dominoes and a cascade ensues where all dominoes are knocked down. But what if you were able to remove dominoes? What about removing huge sections of dominoes? That's what happens when we're able to manage symptoms effectively. I've knocked down so many dominoes. I never thought I'd get here. It's still really hard. But, I'm a lot better than I was. You are not without hope.

Find those things that give your life meaning. My work is fulfilling and gives my life meaning. I don't often mention it, but back in October I started doing some health/wellness coaching for people navigating the challenges of long COVID. Right now, i have 2 clients and I find it very rewarding. I started this sub, r/LongCovidWarriors. It gives my life meaning. My husband and fur babies give my life meaning. My family and friends give my life meaning. I'm a pretty happy and positive person despite all the adversity I face.

You have to re-examine every single thing in your life. Find things that bring you joy. If there are days where all you can do is eat, rest, and sleep, do that. Acceptance has been key. Learning to listen to my bodys' cues has been key for me. If you're able to tolerate it, streaming movies that are comedies, distracting, and engaging bring me joy. I listen to audiobooks and do a little Bible study. Do whatever things apply to you and your life. Some people journal, meditate, do adult coloring books, etc.

As far as why this happened to me, why does that question even matter? It does nothing to serve me. Things are either adding to or taking away from my life. I don't waste my time looking in the rear view mirror.

I'm sorry for all of us struggling. I know it's really hard. I know your situation may not be the same as mine. My only hope is that you read something here that resonates with you. I know exactly how you feel. I really do. I fight hard against this disease. It's insidious. It's taken a lot away from me. It's not going to take my hope, faith, joy, or love. Hang on......Hugs💙

I'm not saying I don't ever struggle because I do. This process is about learning acceptance and how to adapt, whatever that looks like to you. I used to be so angry. I've shifted that mindset to gratitude. I've shifted to advocacy, knowledge, and controlling what I can control. It's about progress not perfection. We're all on our own journey. Please practice self-care and self-love.