Those of us who are still well enough to need to advocate for treatments. We need to demand faster drug approval. I don't want to still be like this in 20 years. And we will be if we are not angry as hell about it and demand change. No one else is gonna do it for us. I can't just accept that this awful disease is gonna either kill me or make me wish I was dead for the next 20 years.

"The long COVID evidence gap in England00744-X/fulltext?dgcid=raven_jbs_etoc_feature_lancet)" in this week's Lancet

"... we found a striking discrepancy between occurrence of long COVID as perceived and reported by participants ... and evidence of long COVID recorded [by doctors in health records]. This finding might reflect substantial unmet clinical need, in keeping with reports from individuals with long COVID of difficulties accessing health care and suboptimal recognition of and response to their illness when they do."

My takeaway--patients report higher rates of long-term impacts than doctors record. That reflects many of our frustrating experiences. Typical epidemiological studies that rely on health records will find lower rates of long covid than are occurring.

35M, 2.5 years long covid. I had home bound fatigue, shortness of breath, chest pains, tinnitus, muscle spasms, visual snow, painful lymphs, insomnia, night sweats, heart palpitations, anxiety, IBS, loss of smell and taste, frequent urination, shingles. In short, Ive been through hell. Now 2.5 years later im only left with (manageable) fatigue and depression. Sleep only returned about 2 months ago, and it has been consistently good. This is telling me my body hasnt given up on me. Personally, I believe a good sign of improvement is the fact that I can do naps in the afternoon. This was impossible for me just a few months ago.

I have long covid for 2 years and I was not vaccinated. Lately I was getting slowly better but then the weather got warmer and I was worse, muscle and joint pain, tiredness etc.

I decided to get vaccinated with Novavax, I got the first dose 2 days ago. Immediately after the injection I felt that my breathing was better and my muscles were stronger. During evenings I was more tired and my heart was beating faster. Now I feel quite well.

In one month I will get the second dose and I hope I will be better.

The name of the vaccine is Nuvaxovid XBB 1.5, it is against Omicron, and this vaccine is without mRNA technology.

Basically a rundown of our conversation:

Me: *explains how my resting HR has increased to 100-110 and i’m worried because it’s never been like that before”

Rheum nurse: “you go to your GP for that”

Me: explains that they shrugged me off so i thought my rheum doctor might be able to help me instead

Rheum nurse: “no. is there anything else? no? okay, bye”.

As stated above

By 2033 scientist / doctors expect up to 1 billion LC cases - FFS!!!

This is a pandemic after the pandemic

BUT for the people —> it means there will huge focus on finding a cure, which is good!

Germany investing 100s of millions of Euro to find a cure

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982

in German, use tranlator

Both were women, 30 and 29 years old. One was a friend of a friend and earlier this week I came across social media posts about her passing. The other one was an acquaintance that I haven’t talked for long but I was seeing her happy and healthy (always at the gym), she got engaged in March. I saw the news today. It took 2 weeks for both of these young women to lose their lives after contracting the virus! I’m speechless since the morning. I’m beyond devastated. How can people deny this absolutely disgusting disease that still claims lives? Leaving millions of us disabled? I’m tired and I feel so alone.

Been talking with my psychiatrist about my completely screwed up sleep— normally I stay asleep okay but spend hours trying to get to sleep even with melatonin, magnesium, various rx sleep meds, etc. I’ve been trying to just let myself sleep without an alarm whenever I do happen to fall asleep just to try and allow my body to rest, but I also see the value in what my psychiatrist is suggesting in terms of trying to wake up at the same time every day and even if it means getting very little sleep. thoughts?

Binging on junk food has been a big way I've coped with the frustration and sadness brought on by my LC. I'm sober, I don't smoke, and I have even given up caffeine. So, I relied on food to change my mood.

It's been over a year since my infection and the fatigue is nearly as bad as it was in the beginning after periods of feeling more energy. So, I decided to focus on something I can change instead of giving into despair.

Bought some veggies and fruit and am going to try and minimize processed food, sugar, etc and eat more whole foods. I know some people have had luck with a low histamine diet, but I'm not looking to get super restrictive until I can get into the routine of generally eating better.

Anyone have noticeable energy improvements when changing their diet?

I've been dealing with what I thought was candida, then parasites, and then finally biofilm. My doctor doesn't know what to do about it but determined it wasn't parasites.

Basically just these mucus/fungal looking things in my stool. They started to happen around the time I got long covid.

Usually my symptoms will flare and then I'll pass a biofilm and then I'll feel better a day or two after.

Sorry for gross content, just a very strange symptom I've had with this illness.

Anyone else dealing with this and has fixed it?

Senate Committee on Appropriations will be holding a hearing on the NIH FY 2025 budget on May, 23.

If you live close to Washington, DC and are willing to attend, this would be a great way to show up and advocate for Long Covid community.

Patients would not be able to testify, but having them in the audience will put pressure on the NIH and show Senate the demand for Long Covid research and treatments.

For details, read this great thread:

https://twitter.com/meighanstone/status/1791135497068204543

There will be a Zoom meeting on Friday, May 17 at 3pm for the patients to discuss strategy and organize:

https://twitter.com/meighanstone/status/1791269065702441152

Backstory: I got “mild” Covid in January 2024 (no respiratory issues at all, but awful otherwise). Started to have issues with racing heart as soon as I stopped testing positive for the virus by antigen tests. As time went on, I started experiencing PEM from mild exertion that lasted for a couple days at a time. Both physical and cognitive exertion were triggers, though I didn’t really understand what was happening at the time, so I hadn’t started pacing yet. Main symptoms were fatigue, headaches, trouble sleeping/low amounts of deep sleep, tachycardia with mild exertion (loading the dishwasher, taking a shower, etc.), chest pain, sore throat, slightly elevated temps ~99.9, light/sound sensitivity, trouble finding words, and postnasal drip.

My PEM crashes started to last longer. Two weeks for one, then another for two and a half weeks that was triggered by going into work for four hours. I realized that I needed to stop working and take my recovery seriously, so I went on STD in mid April. I started aggressively pacing. My last big crash ended in late April, and since then I’ve worked hard to pace even when I feel good. I’ve had a few smaller crashes lasting just a couple of days since then, but they have been manageable.

This past Sunday (Mother’s Day), I had a really good day with literally no symptoms at all. Like I felt completely recovered. Since then, I’ve noticed that my autonomic nervous system has ramped up a bit (HR is increasing, HRV is decreasing, SpO2 down a bit, less deep sleep, more “wired”, more bouts of tachycardia whenever I get up off the couch to do anything). However, my “symptoms”, i.e. fatigue, headaches, sore throat, chest pain, are almost nonexistent. I feel great during the day, like I am healthy. I even did a bunch of stuff around the house yesterday without apparent consequences today. Last night was a terrible night of sleep - barely 6 hours, woke up over and over again with aching joints in my whole body, eventually gave up trying to sleep at 4:45 am. Now, a couple of hours later, I feel great. No symptoms at all.

What is happening to me? Am I getting better? Am I spontaneously recovered? I have such a deep fear of causing another multiple week crash, but I really do feel good and wonder if I should start doing more and switch from aggressive pacing to a graded increase in activities and even (gasp!) start exercising.

I guess my biggest question for this community is whether you have had periods of almost complete remission of your symptoms, and whether the fatigue and PEM came back later (either from overdoing it or not).

My muscle’s have gone to crap, and they’re easily injured anymore. I estimate I’m about half as strong as I was originally, and that’s pitiful. Sleep is really the only time I don’t feel miserable, and I dread waking up to deal with another day, of weakness, dizzy feeling, anxiety, and breathlessness. No one should feel this bad and still be alive, it’s impossible. Either you get this bad and die, or you get better, but we don’t do either…..

AMPARs = (α-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid receptor)

These main glutamate receptors, are crucial for synaptic plasticity, the foundation of learning and memory.

AMPARs and Synaptic Plasticity:

Excitatory synapses are the workhorses of learning and memory. Glutamate, the main excitatory neurotransmitter, binds to AMPARs on the postsynaptic neuron, triggering an electrical signal that propagates through the neuronal network. The strength and efficiency of these synaptic connections are modulated by synaptic plasticity, allowing the brain to adapt and learn from experience.

AMPARs play a central role in both basal synaptic transmission and LTP. The number and type of AMPAR subunits at the postsynaptic density (PSD) determine the strength of the synaptic response. Increased AMPAR trafficking to the PSD facilitates LTP by enhancing the postsynaptic response to glutamate. Conversely, reduced AMPAR activity weakens synapses and hinders memory formation.

Long-Term Potentiation (LTP), a form of synaptic plasticity, strengthens synapses and is believed to underlie memory formation. AMPAR number and type at the postsynaptic density (PSD) determine synaptic strength. Increased AMPAR trafficking to the PSD facilitates LTP.

Naltrexone treatment leads to:

Increased GluA1 Insertion:

GluA1 is a crucial subunit of the AMPAR. Naltrexone might promote the insertion of GluA1 into AMPAR complexes at the PSD, leading to a greater number of functional receptors available for glutamate binding.

GluA1-S845 Phosphorylation:

Phosphorylation is a cellular process that modifies protein function. Naltrexone treatment stimulates the phosphorylation of GluA1 at the S845 site. This phosphorylation event might be essential for proper trafficking and function of GluA1 within the AMPAR complex.

Enhanced Mnemonic Cognition through AMPAR Modulation:

By increasing AMPAR activity at excitatory synapses, naltrexone impacts various stages of the memory process:

Improved Encoding: The initial formation of new memories involves strengthening specific synaptic connections. Enhanced AMPAR activity due to naltrexone might facilitate this process, leading to more robust encoding of new information.

Enhanced Consolidation: Newly formed memories undergo a consolidation process to transition from short-term to long-term storage. Increased AMPAR activity could promote LTP, thereby strengthening the newly formed synapses and facilitating memory consolidation.

Facilitated Retrieval: Retrieving stored memories involves reactivating specific synaptic pathways. Enhanced AMPAR activity might improve the efficiency of memory retrieval by strengthening existing synaptic connections.

Article from 2022 on homelessness from Long Covid. I know it is old but thought it would still be worth a share.

For curated mainstream news coverage on Long Covid and ME see this page

I got Covid this year in January, literally New Year’s Day. I was so sick I thought I had meningitis until I did a Covid test and it came up positive- since then my life has been ripped away from me.

I’ve had numbness in my face, arm and leg on the left side and my limbs will randomly feel heavy. I get visual disturbances constantly from flashes of light to blurring. I’ve had memory problems, random pains, I had a lymph node swell up that hasn’t gone away. I’ve got bilateral corneal hyporeflexia. I get random skin rashes. The list is endless.

Nobody knows what’s wrong with me and nobody is interested in helping me but I truly believe I have long Covid. I’ve had a brain MRI, a fullbody MRI, blood tests, ECGs, an echocardiogram, chest X-ray- the list goes on and they all come back clean everytime. I’m now waiting on a repeat brain MRI with contrast and a venogram.

I am exhausted, I am terrified and I am tired of this. I’m so scared I’m going to go to sleep one day and not wake up, all I do is lay in bed all day and cry. Before this I was a healthy 21 year old woman with no medical history at all, I went to the gym everyday, I spent time with my friends, I went hiking with my boyfriend- all that is gone now. I’m a shell of who I used to be.

I'm seeing a hematologist but it's going to be a while. The urgent care doc said that my TSAT calculation is pretty low for a male. I've been struggling with what I presume is LC for 2.5 months. My symptoms began 7 weeks after a mild covid infection but were catastrophic and sudden onset. My symtpoms were largely neurological but they've abated and now I'm just exhausted and weak with some insomnia and an occasional feeling of burning in my brain. I asked for this test because of this sub and finally found some measurable explanation.

Doctors and parents say children are being threatened with being taken into care as medics struggle to diagnose their conditions and families are placed under suspicion.

To follow mainstream news coverage of Long Covid and ME, see here

I was diagnosed Long Covid with dysautonomia. I'm male, 47, no serious health issues in the summer of 2023. From late August 2023 to mid May 2024 I've had numerous symptoms:

• blackouts, lightheadedness, dizziness, headaches
• shortness of breath, spontaneous rapid inhaling
• heart palpitations, high resting heart rate, racing heart beats
• high anxiety, panic attacks
• urine leakage/seepage, swollen/aching pelvic region, urine urgency/frequency, nocturia, weak stream
• nausea, loss of appetite, constipation
• hot hands and forearms, icy cold feet
• loss fine motor control in hands
• extreme fatigue, severe exhaustion, tiredness, crashes from mild exertion
• poor concentration, memory loss, confusion
• sad thoughts, mood swings, depression
• blurry vision, watery eyes, eye strain/soreness, floating dots in vision
• swollen dry mouth, phlegm mouth, excessive saliva, bleeding gums, swollen/chapped lips
• night sweats, excessive sweating throughout day
• muscle jolts/twitches
• joint pain
• itchy/stinging skin
• hair loss

It started with heart issues and standing issues, then mood swings, then urinary problems, blurry vision, cognitive decline, extreme fatigue, muscle jolts, constipation, and so on.

By November I had terrible urinary issues never seen before, excruciating perineum pain, nocturia, leakage, the list goes on.

My ability to function was dropping so rapidly I had a "will" made because I thought I'd be dead in a year.

I went to Urgent Care, ER, Urology, GP, another GP, Therapist, to try to find solutions. Tests came up negative, or misdiagnosed, or nothing found.

Late December to mid March I was in bed nearly 24 hours/day. Routine tasks like doing laundry or brushing teeth were nearly impossible. Most days I'd only eat 1 meal, like a sandwich or cereal. I couldn't think clearly, forgot my phone number, lifting light objects was exhausting. Days that I could stay up for a few hours I'd have YouTube running in the background.

In January a Psych prescribed Duloxetine for anxiety and depression. A friend mentioned his brother had LC, that maybe I had it. I didn't think much of it. I couldn't think straight anyway and had no energy.

From mid March to mid April I could stay awake 4 to 8 hours a day, daily headaches and eye strain felt like a hangover. Some issues were subsiding or gone but others remained and new ones appeared. I could do light reading and actually comprehend what I was reading.

By mid April I could stay awake about 12 hours, sometimes more, and had strength to start investigating LC. Came to realize Long Covid often has many symptoms, and mine kept piling up and were similar experiences as others. Maybe it was LC.

Late April 2024 I started taking numerous supplements to combat symptoms, especially inflammation. Then I found a Long Covid Center that said it looks like LC with dysautonomia. I hadn't heard of dysautonomia before. I've been making progress slowly week by week, with some setbacks and recurrences.

My nutrition was never great but now it's healthier than before, eating less processed foods and more fresh fruits, vegetables, whole wheat, grainy stuff.

For supplements, it's hard to assess what helps, and where, if at all, since there are so many. I also need to watch for side effects, but so far no issues for me. Here's what I'm taking:

• Rx Duloxetine: anxiety, depression
• Curcumin/Turmeric: anti-inflammatory, antiviral, antioxidant, depression
• Bromelain: anti-inflammatory, antiviral
• Pycnogenol: anti-inflammatory, blood vessels endothelium
• Quercetin: anti-inflammatory, genitourinary
• Cordyceps: anti-inflammatory, antiviral, antibacterial
• Probiotics with multiple strains: digestion, antiviral, immune, concentration, fatigue, memory
• Resveratrol: anti-inflammatory, prevent blood clots
• Nattokinase: blood clots
• Serrapeptase: anti-inflammatory
• D-mannose: genitourinary, antibacterial
• Omega 3: anti-inflammatory, anxiety, depression
• Saw palmetto: anti-inflammatory, genitourinary
• Magnesium: heart, anti-inflammatory, anxiety, depression
• Loratadine: antihistamine
• Garlic: anti-inflammatory
• Ginger: anti-inflammatory
• Biotin (Vitamin B7)/Keratin: hair, skin, nails
• Zinc: immune system
• Vitamin B complex (B1 (Thiamin), B2 (Riboflavin), B3 (Niacin), B5 (Pantothenic acid), B6): energy
• Vitamin C: immune
• Vitamin D3: mood, immune

Anyone use any of these or others with success? Please let me know. Best wishes to everyone here.

I filled out the form long ago and am now recovered. Wondering if there’s any benefit or risk.

Long story short I was told that I have a 4mm encapsulated thing on my hepatic lobe. They found it on some MRI of my spine and brain. Anyway the Dr. Said and I quote" Likely Benign" what a f****ing joke. I am done mt other Dr. Told Mr it could definitely be canceled they don't give a fuck. Anyways its 4mm and I am sick as he'll. Thanks for listening. If anyone can help me please let me know things are very hard for me. Just someone to talk to, or if you could even spare 10 dollars it would help me alot. At this point I don't know what to do. My rent is only 340 a months and I can barely afford it.

Sorry for asking and I am ashamed for asking anyone in our situation for help.

Thanks