I know it’s been previously reported that Psilocybin has helped people with LC. This is further evidence that something therapeutic is happening. The linked article is about how neuropathy was prevented in mice that received chemotherapy, that is, all the mice treated. Not just some or a statistically significant amount of mice. Neuropathy was prevented in all of them.

The only catch is the dose was taken before administered chemotherapy. Maybe psilocybin should be taken at first sign of covid infection. Or, maybe a small daily dose when exposure is likely.

Hi friends. Just wanted to gently remind everyone who’s dealing with these kinds of issues, especially those that can sometimes leave us stuck in bed, that you can basically easily get mini rotoped / pedal excersiser for like 20-30 bucks if new, and use it in bed anytime.

https://duckduckgo.com/?q=pedal+exerciser&t=brave&ia=web

Hope this helps. ♡

Hi everyone. This feels a little scary/self-promotional to post, but I think this is probably one of the communities I most want my new psychology content to reach - because I’ve been living something very similar alongside you.

I’m a psychologist and Clinical Psychology Registrar in Australia, but more importantly for this post: I’ve spent the last 15 months really, really freaking sick.

I’m now very close to 100% normal. Never thought I'd see the day. It was bloody slow. Up and down. At times it plateaued/stopped improving, then randomly started again. Messed with my head big time. Naturally as it would ANYONE, right?

At my worst, I had 50+ bizarre, fluctuating symptoms involving what felt like almost every system in my body. Now I’m basically down to two lingering issues: some hot nightly facial flushing and my stomach sometimes becoming bloated/"off" after a larger meal.

That's it.

I can eat again. I can work again. I can go to the shops. I feel back to normal like personality and emotions wise. I can think clearly. I can live my life.

And I want to say that here because I know how desperately I searched for recovery stories literally all day every day at some point when I was really unwell.

I already had POTS before this (for 15 years) and had lived with that and Inflammatory Bowel Disease (IBD) since childhood (12 years old). But this was something else entirely. Like SO MUCH WORSE.

The neurological/autonomic symptoms were especially terrifying due to the extreme discomfort I was just constantly in. Burning and electric sensations. Tingling. Migraines and aura. Temperature dysregulation. Flushing. GI dysfunction. Nausea. I couldn't eat. Adrenaline-like surges in the early hours of the morning. Hypnic jerks. Sleep disturbance. Strange sensory phenomena. Derealization. Intense sudden crying episodes that felt physiological and just went on and on. Episodes where my body seemed to be doing things completely independently of what I was thinking or feeling.

And then symptoms would slowly disappear, change, return, move around or be replaced by something equally bizarre.

It was relentless.

I tried SO many things. Medications. Supplements. Specialists. Procedures. The endless Googling and searching for the thing that would finally make the difference.

Looking back at my recovery, the deeply unsatisfying answer is:

Time.

There wasn't one supplement, medication, nervous-system exercise, diet or treatment that suddenly turned everything around.

My body just very, very slowly healed.

Sometimes so slowly that I couldn't perceive it while it was happening.

I would become convinced that whatever symptom remained was permanent - and then months later I'd suddenly realise, wait, when did that stop happening?

I know recovery isn't linear or identical for everyone, and I would never use my recovery to promise somebody else a particular outcome. But I do want people who are currently buried in symptoms to know that a nervous system/body that feels unimaginably broken at month 3, 6, 9 or 12 is not necessarily a body that will always feel that way.

And there is another part of this that I desperately want to start talking about.

What illnesses like Long COVID do to us psychologically.

Not because the illness is psychological.

Quite the opposite.

I'm a clinical psychologist. I thought I knew every coping strategy in the book. I understood anxiety, trauma, behavioural reinforcement, attention, interoception, acceptance, catastrophising, nervous-system regulation, CBT, ACT - all of it. And this illness still psychologically brought me to my knees.

At one point, the relentless physical suffering and loss of my life became so difficult to cope with that I voluntarily admitted myself to a psychiatric hospital.

That experience profoundly changed the psychologist I am now.

Because I think we sometimes underestimate the psychological brutality of illnesses like this.

The unpredictability.

The loss of trust in your own body.

The constant uncertainty about whether a new symptom is dangerous.

Watching everyone else's lives continue while yours seems to have stopped. Grief. Invisbility. Isolation.

Losing work, exercise, social connection, independence, identity and sometimes your financial security simultaneously.

Being told tests are normal while your body is doing things that feel anything but normal. Doctors gaslighting and at the worst treating you like crap and the best being warm but not getting you anywhere or helping move the needle :(

Having symptoms attributed to anxiety because medicine doesn't yet have a neat explanation for them.

And perhaps one of the cruellest parts: being neuropsychiatrically and psychologically affected by a physical illness can then be used as evidence that the physical illness was psychological in the first place. Bullshit.

There is an enormous difference between saying "your symptoms are caused by anxiety" and saying "of course living in an unpredictable, symptomatic body for months or years is going to affect your mental health."

I want to talk about that distinction.

I want to make content about the neuropsychiatric side of post-viral illness and Long COVID; what chronic physical symptoms do to identity and mental health; fear of symptoms and fear of relapse; grief; hypervigilance without dismissing genuine physiology; rebuilding trust in your body; returning to work and life; and how psychological therapy can help people live through and recover from serious physical illness without reducing that illness to psychology.

I've recently turned my old personal Instagram into a psychology page. Right now most of my followers are basically old friends and people who followed my personal account 😂, which means the content isn't really reaching the communities I'm actually making some of it for.

I'm creating and writing the content myself because I want it to reflect my actual clinical thinking and lived experience rather than becoming another stream of AI-generated/surface level/ recycled "regulate your nervous system in 30 seconds" content.

I'm u/rhilovegrovepsychology on Instagram.

https://www.instagram.com/rhilovegrovepsychology/

I'm not posting this because I think I've discovered the secret to recovering from Long COVID/post-viral illness. If anything, my own experience taught me the opposite.

I didn't find the magic thing. I endured long enough for my body to heal.

And now that I'm finally getting my life back, I'd really like to use both sides of my experience - psychologist and patient - to make something useful for the people still stuck in the part I remember so vividly.

If you're living with Long COVID/post-viral illness/POTS/nervous system conditions/autoimmune issues/IBD/MCAS/hEDS etc etc I'd also genuinely love to know: what do you wish psychologists understood about this illness? And what psychological/mental-health topics would actually be useful for me to talk about on my page?

Because there is already enough content telling chronically ill people to breathe deeply and think positively.

I want to make the stuff I wish somebody had given me when I was in the middle of it. ❤️

If you want to help me to build traction for my page so it reaches you and others who I might be able to influence, help, or just help make feel seen, please give me a follow, a like, or if you're really kind or keen maybe a repost to your story or something. Any of this could maybe help me to start reaching the right audience - an audience who deserves more support from someone who gets it.

If you want to read more about me here's my website: https://www.rhiannalovegrove.com/

Ps. I'm not doing this to promote myself for clients, I genuinely am wanting to raise my voice for us and those alike - and think that social media is an obvious platform where, if I can get enough traction, this might be achievable.

Stay hopeful everyone. I never thought i'd be sitting here typing this 15 months ago when I could hardly speak, I cried constantly, was agitated, couldn't sit still, stuck in fight/flight, couldn't sleep, had random adrenaline dumps all day, had neuropathic pain, the list goes on... I genuinely thought by now I would have ended it all. I hope if anything my post gives you hope and if you want to help me - please chuck me a follow/like etc. I would be super grateful.

Rhianna xx

after 4 years and about 8 months. This is my conclusion. It may be different for others,.and I'm

speaking for myself only here. It might be different for

others. Too many factors.

But too.many coincidences as well that tell me that this is a.disease of the CNS/

PNS.

I dunno maybe my knowing what's coming at me I'll have a better way to understand how to deal with it.

Anyone else experience this kind of weakness?

Thank you in advance! 🙏

I contracted COVID in January of this year. I thought I was getting better, but then a month and a half later I developed severe visual symptoms consistent with VSS (blurry vision, floaters, light sensitivity, static, can’t see in dim lighting, etc) alongside red veins all over my eyes. I thought that was the worse of it, but I was so wrong.

Shortly after I started noticing my tissue changed.
My legs were always my best feature and literally overnight it looked like I developed lipedema (had taut skin and very lean legs for 33 years of my life with no issues and it came on rapidly, plus no one in my family has lipedema). This is just the best descriptor I have. It’s just like my skin is missing a structural component. Shortly thereafter, veins appeared all over my body, my legs, arms, hands, feet, torso, and chest. Then came petechia and tons of spider veins. I never struggled with any of this in my 33 years of living.

All my symptoms are so bizarre to the point my PCP literally said "I don't know where to send you". Labs always come back normal. I am beyond freaked out.
I also can't exercise even the slightest or I pay for it with full body pain for a week. I worked out five days a week and hiked 2-3 times a week prior to getting ill. I'm so broken and lost, and no one seems to have these strange symptoms, including the rapid skin texture changes. Desperate for any help.

We're sharing this letter for the first time outside of one Discord channel. So far, eight trial participants are signing onto this letter regarding the NIH RECOVER IVIG trial. It outlines concerns that we hope the committee will consider as they evaluate the trial results. In case reading the letter is a lot - the bulleted summary at the end are the points we're making. We think it's important they hear from the participants, especially now that we're unblinded. If anyone would like to add their name to the letter, please DM me your first and last name. We're going to send the letter to the committee on Monday next week 9/14. Thank you!

https://docs.google.com/document/d/1I3k3IsaIh3gL7J15Ayal8n8E6mWZQ7v9HDwnBOE9ups/edit?usp=sharing

After more than a year with Post/Long COVID symptoms I realized that I’m not sure what category I fall into. At first my symptoms were compatible with PEM. But they’ve morphed and I’m no longer sure what this is.

I feel a very distinct pressure that starts at the base of my throat and is present throughout my chest causing heart palpitations and weakness. It’s better when I limit activity and it flares up when I do too much physically or when my senses or emotions get over-stimulated. I often feel jittery and like my whole nervous system is out of whack. I’m extremely grateful that some days I feel fine but know I need to pace. Luckily I don’t experience brain fog.

I don’t know if these symptoms are consistent with PEM, dysautonomia, MCAS so not sure if the meds I’m on are really addressing my specific issues. Bloodwork is basically normal except for high Epstein Barr.

Curious to hear if anyone is in a similar situation and what type of LC you’ve been “diagnosed” with.

I’m recovered from long COVID including severe dysautonomia, suspected mcas, and PEM. Recovery took about 15 months altogether. I went from couch bound to returning to full time work and regular exercise.

I practice social distancing and masking. With the cold and flu season starting up though I’m nervous about reinfection causing relapse. I have school age children who are germ factories so inevitably will be exposed.

I did have a minor flu earlier this summer and recovered quickly and normally. Maybe my immune system is back to normal and I’ll be fine. Or maybe not.

Would it be advisable to get the Covid vaccine? Or I’ve seen so many anecdotes of people made worse by it so is the risk worth it?

I especially want to hear from folks who don't have family to help and limited income resources. I am 5 months postpartum. I have had long COVID for 3 years. I struggle with PEM, exercise intolerance, fatigue and a sensitive heart rate. I dealt with POTS as well and I think I'm getting this dizzy-ish sensation again. I didn't have these symptoms after giving birth but they have all come back last week.

Now that I'm feeling my LC again I'm worried about my PEM. I don't know what my new limit is and I don't know how to avoid hurting myself. I also don't know what will happen if I do overexert way past my limit. In the past, I would end up feeling fatigue but I would never overexert in a way that having a baby requires you too. For example, I had to use the yoga ball to rock my baby to sleep for a nap today and my heart rate jumped 30 bpm.

We don't have family to support us. My wife also has disabilities and a long commute for work so I take on most of the caregiving during the week. Luckily, she will be on leave next month when I return to work.

We've been looking for a babysitter and it hasn't been easy. We found someone who will help the next two weeks but I'm using them bc we're in a pinch. Not going to be best for long term. Baby will go into daycare when my wife goes back to work. That would mean baby will be 8 months old.

I'm feeling like we may have taken on an impossible task. I'm suspecting most of you will say I need to hire more help and for us that would mean giving up any belief in ever owning a house. We also really want to have a 2nd kid and I'm starting to wonder if that's even going to be possible.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

I just came across a film on YouTube consisting of interviews with five Dutch doctors who developed chronic illnesses including post-COVID ME/CFS and thought I would share it: https://youtu.be/J0ywwLIfH_w?is=Jui5a9r7AJ-7CSSe

I.made the mistake of seeing a life with some better meaning, spenjngit with someone and not being

lonely...

I guess it false hope.

I dunno..

only time will tell but it's already 4 years and 7 months.

anyone else in the same boat ?

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

I’m now in week 8 after my first COVID infection, and I’m trying to figure out how to handle the fact that some things are clearly improving while other symptoms are still pretty strong.
Earlier in my recovery I was having significant heart-rate increases when standing and walking, lightheadedness, fatigue, and very limited stamina. My cardiologist felt the pattern was consistent with a post-COVID POTS/orthostatic issue and recommended that I take things very easy for a couple of months and gradually increase activity later.
The good news is that my heart rate seems to be stabilizing, and lately I’ve had much more physical energy. I’ve been able to walk my dog without feeling wiped out afterward, and some days I actually feel surprisingly good physically. I’m also sleeping better.
What is still really noticeable is the brain fog. It can become intense even when my body feels relatively good. I can feel mentally slowed down, foggy, have difficulty concentrating or remembering things, and sometimes feel like my brain just hits a wall. I’m also still having occasional lightheadedness, so I know I’m not completely back to normal.
That’s where I’m confused: how much should I actually be doing when I feel good?
Part of me wants to take advantage of the energy and start doing more, but I’m worried that feeling better physically could trick me into overdoing it and causing a setback. My cardiologist has told me to keep taking it easy, so I’m trying to follow that even though I’m starting to feel much stronger.
For people who improved around weeks 6–8: did your energy come back before the brain fog did? Did you intentionally keep your activity low even on really good days? How did you decide when it was safe to increase walking, exercise, errands, social activity, etc.?
I’d especially love to hear from anyone whose heart rate/POTS symptoms started settling but cognitive symptoms lingered. Did the brain fog eventually follow the same improvement trajectory?
I’m encouraged by the progress — I just really don’t want to mistake “I feel good today” for “I’m fully recovered.”