Long Covid

[purlieu]

Enough prattling about it in other threads, thought I might as well start one as there doesn't seem to be anything else in the sub forum.

Anyone else got it? Rates overall are about 1 in 15 cases in the UK, with a lot coming from Delta, so there must be someone else on here with it?

Some of this I've shared in other threads, but I thought it might be useful to have stories and info in one place.

I tested positive on 12th April, although my symptoms were so mild that I probably wouldn't have noticed if it wasn't for my neck swelling up like it did after my first jab. My acute symptoms lasted for four days, after which I started getting very short of breath and bad chest pains. I assumed this was just the virus moving to my lungs, so rested up for a week. After I tested negative I decided to ease myself back into things by popping to the shops, and after coming home as utterly exhausted. This was followed by what I can only describe as the worst week of my life: complete fatigue, muscle aches, headaches, brain fog, constant need for sleep but lacking the ability to get any, the worst anxiety I've ever hard, diarrhoea, shakes, stinging eyes when I looked at any screens and frequent crying fits. Every day seemed to last a month, and I couldn't keep my mind off the fact that everything I took for granted - walking my dog, making music, even preparing a meal - could have been gone.

My girlfriend has ME and although I suddenly found myself unable to look after her, it has meant I'm actually a lot more clued up on post-viral fatigue than your average person. I basically spent a couple of months 'pacing', ie upping my exercise a tiny bit at a time, always staying well within my limits. This started with a very slow walk around the block, which I then gradually made slightly longer once a week. I changed my diet, cutting out almost all junk food - I'm on at least nine portions of fruit and veg a day now - stopping the alcohol and taking a multi-vitamin drink each day. I'm aware that supplements are often referred to as 'expensive urine' as most stuff just gets pissed away, but as one of my enduring symptoms is diarrhoea - usually about an hour after eating - I'm doing everything to give myself the best chance of getting as much goodness as possible. The one I take also contains coenzyme Q10 which has shown some success in treating symptoms in fibromyalgia. I ran out and noticed my recovery slowed significantly.

After the two months, my only remaining symptom was muscle aches, often in my arms from holding a book or typing. By managing my exercise - daily household tasks and a slow 20 minute walk - below my energy threshold, I was able to feel otherwise 'normal'. I managed to rearrange my CD collection one day, hang out the washing another. I actually felt like myself again. I predicted I could actually get back to a comparatively normal life within a year at this rate.

Then my mum went to hospital with pneumonia. Visiting her involved a 35 minute drive, a walk across the hospital, and then sitting in a nasty plastic chair for a couple of hours, before the journey home. Two days of this and I basically went back to the very start again, terrible drowsiness, brain fog, fatigue, headaches. I spent another fortnight in bed before I began to consider exercise again. This week I've started the walks once more, beginning with going round the block again. My fatigue and aches are all gone at the minute, but my eyes have been stinging like fuck for several hours a day ever since. There's no obvious pattern either - I can use screens, read a book, sit in the sun, and sometimes it'll trigger the pain, other times it won't. My anxiety doesn't seem to have cleared up anywhere near as well this time, either.

Unless there are any other major spanner's thrown in the works, there's no reason I can't get back on with pacing and get better by the end of next year, but the real looming fear at the minute is getting Covid again. I asked my parents if they'd consider not sitting in pubs for a while, and my dad seemed ok with it, but my mum took a lot of persuading. Basically her attitude was "I'm not stopping my life just because you're ill". Should I get it again, I could well have to start the recovery afresh.

What makes it doubly hard for me is that in 2009 I made a majorly stupid decision and moved to a city without knowing anyone, in the middle of a recession, and ended up fucking up my life. This lead to the onset of some horrible mental health issues, including several suicide attempts, and my living a long way from any friends and - for the last seven years - back with my parents. A couple of weeks before getting covid, I'd sorted out somewhere to live in Sheffield that would accommodate my being unemployed and having a dog, and was looking forward to living in a city in which I have several friends. And literally the weekend I must have caught Covid, I had a revelation, the kind of which I didn't think really happened, and seemed to have worked through the issues I've had over the last 13 years. While there have been several periods in that time where I've felt in control of my mental health issues, this was the first time I felt as if they'd actually gone. And despite the anxiety I've had in the three months since, not one of the previous issues has cropped up in that time. So basically everything came together in my life and in my head, and I felt so happy and so positive about the future, and then this came along immediately after. It feels so utterly cruel.


Typically, our government has been fairly slow off the mark, so far giving £50 million towards research, when it's been suggested that multiple times that will be needed to get anywhere. The NHS long Covid clinics are hilariously under capacity. I'm now at 12 weeks so will be phoning the doctor on Monday, although I'm not expecting to attend a clinic until next year realistically. Even worse, some are prescribing Graded Exercise Therapy and CBT, which for many years were given to people with ME, until there were enough people who actually ended up getting worse as a response that the NICE guidelines were updated to say GET and CBT were not recommended. I fear for the people who are encouraged by doctors to push themselves only to find they end up making their symptoms worse and more long lasting.

On the plus side, there have been some positive discoveries. As with ME and fibromyalgia, it seems that one of the physical issues is mitochondrial dysfunction - basically the part of the each cell that processes energy isn't working efficiently. A study at Oxford University is currently investigating the use of amino acid intake to help repair damaged mitochondria; initial clinical tests have apparently been promising, and although it won't necessarily cure long Covid, it could potentially make significant improvements in symptoms. That study ends this month, so I'll be looking out for the results there.

The most promising research at the moment is in the discovery of a particular spike protein from Covid-19 itself which is still present in the blood of the majority of tested properly with long Covid (it is t present at all in those who have recovered). This backs up early predictions that there are remaining viral reservoirs in the body that are triggering the immune system. It also explains why there are a large number of people reporting positive responses to Tollovid, an American food supplement that contains a 3CL protease inhibitor, 3CL protease being the enzyme that leads to replication in coronaviruses. This is all still preliminary, of course, but it does seem to be suggesting that the development of suitable antivirals and inhibitors could be a way of flushing the body of any persisting virus and a way out for many long haulers.


News / information / research / stories / help / hugs all very welcome!

[jamiefairlie]

Great post, thanks.

The long-term persistence of viruses as the root cause of many auto-immune/chronic fatigue conditions seems to be an emerging theory with good evidence e.g. Epstein Barr Virus

[bgmnts]

Hard to say, i've had a chronic cough since I got sick in October for a few days and the doctors still don't know what it is. Could be long covid though.

[shoulders]

https://www.theguardian.com/australia-news/2022/jul/09/long-covid-what-we-know-about-it-and-how-best-to-treat-it

[imitationleather]

Very interesting post, purlieu. Sorry to hear you're having to put up with that.

I don't think I have any long-term effects from 'vid. I feel old and knackered, but that's probably just down to my lifestyle.

[bgmnts]

Oh long covid is only a few weeks? Guess I don't have still then. Bummer..?

[Martin Van Buren Stan]

Really good, heart breaking post there @purlieu Fortunately my covid experience was much less horrific than that but it's terrifying to think any of us could catch it again and go through something similar. Were you triple jabbed when you caught it? 

[purlieu]

Oh long covid is only a few weeks? Guess I don't have still then. Bummer..?

No, a lot of people have had it for a couple of years now. There's a lot in that Guardian article which seems to be playing it down in a way that doesn't match anything else I've read (the idea that the majority of people with it are elderly and have been hospitalised - women between 25 and 50 seem to be the most common as far as I know - and the idea that far fewer children get it than adults - I believe it's currently one in 20 post-Covid kids in the UK).

I was indeed triple jabbed when I got it, with my booster less than three months before catching it, and with no existing health conditions other than very mild asthma I hadn't used an inhaler for in about seven years.

[Kankurette]

I'm starting to wonder if I have it, I went for a walk earlier and felt so weak and ill I had to keep sitting down, but then I have fibro so it's hard to tell. My chest feels tight as hell. Actual COVID wasn't that bad, the worst part only lasted two days.

[SpiderChrist]

Mate of mine is now on meds for a blood clot following two doses of Covid. Docs reckon the clot was caused by Covid, as their family history and health is pretty much spotless.

[Lordofthefiles]

Great post @purlieu, good info.




March 2020 - got the original Wuhan Strain (fresh out of the lab!) - copped for it during a panic buying / shopping expedition in the days of madness that preceded the lockdown.

I wasn't even buying stuff for myself (being a paranoid, I'd already gone full survivalist and had everything in - two years worth of tinned food right through to a hand operated ventilator for when the hospitals ceased to function), this was me doing my bit for family, friends and neighbours who were still at work or already in hiding.

Anyway, spent all of April 2020 stuck to the couch ill as I've ever been in my life, and in isolation (my missus was camped upstairs in our bedroom - the job she does meant she was in emergency measures and pulling 24 hour shifts).

Towards the end of April I became seriously ill, the disease had completely overwhelmed me, and one night I was unable to breath at all, so the paramedics were called.
They went to work on me as I lay on the couch and eventually brought me round.

They said I was in a bad way and may need further treatment. I asked what would happen if I went with them, and their capsule review of both local hospitals was "it's like Vietnam, you'll be waiting on a trolley for a long time and will be surrounded by other people who are full of Covid".

I decided I'd rather die on my own sofa than alone in a depressing cough factory, and so they left me be.


Another two weeks passed and I was absolutely "on the line", some days I could hardly breath and struggled to even move from one prone position to another.

One night I made a deal with myself that if I woke up the next day and felt the same as I had for the past fortnight, I'd summon all my strength, go to the medicine cabinet, and off myself with as many pills as I could find (and some psychedelic sprinkles that are kept for special occasions - the Aldous Huxley method).

...I began to pull through from then on.
Another two weeks went by and I was up and out of my sordid little grief pit, moving about the room and able to eat and breathe again (ish).

It took me a long while to gain the strength in my muscles back, and then one day I was finally able to walk 100m up our backlane with my wife's assistance.

Weeks went by and I got to being able to walk around the local park.
More weeks went by and I started to jog when I could, pushing myself to regain my previous fitness.

...then one day I was walking slowly up a hill and all of a sudden I lost all my energy, all the colours became really vivid (oxygen deprivation apparently) and I lost all motor function.
I lay there collapsed on the grass on my own staring at the blue-blue sky wondering if I'd had a massive stroke or something.
After about 45 minutes I was able to drag myself to my feet and make it home.
I spent the next week or so back on the couch.

This repeated every time I went out and ran, so I stopped running.
Then it started happening whenever I went up an incline.
Then it started happening every time I went up stairs in the house for a quick piss.

These episodes of downtime (relapses) after exertion where almost identical to having the infection again and could last from a couple of days to a fortnight.

I've had the lot: shortness of breath, fatigue, malaise, permanent headaches, low blood oxygen levels, brain fog / cognitive disfunction, Covid toe(!!!) - except all over my body, tinnitus, blood pressure spikes, gastrointestinal issues, etc, etc, etc,



After a year my GP finally started to take it seriously and the testing began.
Turns out I had a heart attack at some point during the initial infection and have permanent damage to all the valves in my heart - which is nice, but doesn't explain away the LC symptoms.

Around this time the health service started to get interested in long Covid (or collecting data on it anyway), I was sent to a Long Covid Clinic and I've been fast tracked through the many disciplines and had a full going over by some of the best specialists in the UK since.


Some of the symptoms have eased off over the months/years, but none have completely gone away.

I still have relapses about once a fortnight, no matter what I do or don't do.
The periods of downtime have become less though. Sometimes they'll only last a day or two, but then I've also just come out of a month long period of lethargy and bedriddenness - it's unpredictable.


I've learned that foods can trigger the symptoms as well as over exertion - stay away from stuff that's high in histamines.

No wheat, no tomato, no beer, no chilli, no fun, my babe, no fun.


I'm on an incredible amount of pills (some days I'll be gobbing 14 different meds depending on my situation).


28 month have gone by now, I've been nowhere except hospitals (and a few trips to the dentist - long Covid makes your teeth fall to bits. Bonus!!), never been inside a shop, boozer, or even the houses of family or friends.

I'm signed off with ill health by the DWP so don't have to go out to work, and my missus works from home after pleading our case to her bosses.
We're both happy to stay away from people and risk assess any situations where we interact with family or friends.

These interaction have become lessoned anyway as one by one, family and friends have become antivaxcunts, "it's just a flu" bollocks-talkers, and the others have taken umbrage when I've asked if they'd mind taking a test before meeting up, them having been to fucking Glastonbury or some such - how very dare I?!!


I've come to be an expert on Covid and I've also come to hate everyone who doesn't take it seriously.


Luckily my home life is good and we are relatively comfortable (you'd want to be doing a 28 months sentence), but every now and again I feel trapped and held hostage be the numbskulls that run this cuntry and the imbeciles that bray on about "you have to learn to live with Covid" - well if I tried to live with Covid, I'd fucking well die of Covid, thanks very much.
Great plan Dr. Mengele!!




Oh, one more thing, the PTSD.
I've had a few weepy moments and periods of adrenalised shaking whilst typing all of this - it's a long time ago now but the damage has been catastrophic to me and my family.




TL;DR

Had it. Got it. Ouch! Do not recommend.

[jamiefairlie]

The most significant point in the article is that any Covid infection is damaging to your system and leaves it weakened for who know how long. You may get over it quickly but it's left its mark.

[Blue Jam]

As you may remember I've been roped into doing a bit o' Covid research myself as one of our PhD students is doing a project with tissue from autopsies of Covid patients- people who died with Covid rather than of Covid. All I can say is that there is definitely something going on at the molecular level in Covid patient's cardiac tissue, a bit of damage being done even if the symptoms aren't severe.

A mate of mine had a heart attack during lockdown. He didn't have the healthiest lifestyle before but he was only in his late 30s, so his doctors reckoned the main contributing factor was probably the severe dose of Covid he got early in the pandemic, which led to him being hospitalised for about a month. Scary to think that it causes damage even in symptomless cases though.

[Blue Jam]

Covid toe(!!!) - except all over my body

The 'vid finally came for me in April after two years of successfully dodging it. Two days before I tested positive my hands, arms and legs started feeling insanely itchy- not my trunk or head or feet, it was weirdly specific. I started to get paranoid that we had bedbugs even though Mr Jam was itch-free and I didn't have any bites, just hives coming up on my arms and legs for a few hours at a time, and weird tiny itchy blisters on my fingers. Then after a weekend of trying to stave off the itching with liberal applications of Aveeno I had cold-like symptoms and a positive test.

After isolating I went to my GP to get a couple of weird and persistant rashes checked out and he said it was one of the lesser-reported but surprisingly common Covid symptoms, not that well-known but he'd seen numerous patients presenting with it. I got prescribed some strong steroids for the two worst rashes, and got myself some cetirizine for the hives (tried chlorphenamine first, didnae work).

My boss has also had long Covid so is thankfully being very understanding. She's had severe headaches which have also been responding well to antihistamines- weird to be taking those for a headache but we reckon the connection here is the antihistamines damping down the T-cell response (we're life scientists, and therefore bad patients).

The other bad thing for me has been the insane degree of fatigue. I had jetlag-levels of tiredness after my three jabs so I was expecting it to some extent, I just didn't expect I'm be needing regular naps and struggling to complete a full day at work three months on. Been mostly working from home and doing half-days in the lab but that seems to be my limit- I went to a one-day conference recently and genuinely struggled to stay awake, was blacking out with little bits of microsleep and kept having to drink coffee even though I hate coffee.

It's really fucking embarrassing tbh, and it's frustrating because there's so much I want to get done. After dodging Covid for so long despite not being too cautious (was going to a physical workplace through most of lockdown, going to pubs when they reopened) I felt invincible and then it came and knocked me for six.

Would love to try that there Tollovid but it aint cheap- exclusively available from this one company it seems:

https://mytollovid.com/products/tollovid%E2%84%A2-immune-support-capsules

[purlieu]

Christ @Lordofthefiles, that sounds horrific. My sympathies, and my huge respect for getting through this far. I hope you continue to recover.

I'm starting to wonder if I have it, I went for a walk earlier and felt so weak and ill I had to keep sitting down, but then I have fibro so it's hard to tell. My chest feels tight as hell. Actual COVID wasn't that bad, the worst part only lasted two days.

It's certainly possible. A lot of people I know who had it suffered with fatigue and/or chest pains for at least a couple of months afterwards, even with mild symptoms, so I would definitely look into it, fibro or not.

@Blue Jam if you can get some time off work all together you should try for it. Even if you're managing the symptoms, a couple of weeks of doing absolutely fuck all could do you the world of good and definitely help with the recovery.

In terms of antihistamines, they were something I tried very early on as I think I have Mast Cell Activation Syndrome, and they did actually remove the weird spots I always have on my upper arms; I'm going to have a look into MSAC at some point in the future. That said, I'm also prone to Restless Legs Syndrome and they brought that on like a fucker, several times a night, meaning I was just permanently knackered from lack of sleep on top of the general fatigue. I haven't noticed any changes in symptoms depending on foods so that might not be such an issue for me. I do recall reading about a few people whose long covid pretty much completely cleared up after taking antihistamines, which gives an idea of how varied this whole bloody thing is.

Tollovid is definitely pricey - those bottles are only five days' worth, too. They're available from Amazon US (when they have stock), but with imports and such they'd be ludicrously priced and not really worth it. If they do appear in the UK at some point I might consider a punt if I have some spare cash, but obviously there's not so much of that around being long-term disabled and unemployed.

[Blue Jam]

Heh, I regularly buy melatonin from Amazon.com, that's as close to the Dark Web as I'll ever get ;) Ever tried that @purlieu? It won't do anything for your Long Covid symptoms but it might help you sleep. Totally legal to order and get delivered from the US, it's just banned for sale in the EU (and the UK, at least until we Get Brexit Done).

@Blue Jam if you can get some time off work all together you should try for it. Even if you're managing the symptoms, a couple of weeks of doing absolutely fuck all could do you the world of good and definitely help with the recovery.

Hmmmm, maybe I should. Feeling very guilty and ashamed and just generally crap about myself for sleeping so much though. Really beating myself up enough as it is, it's just so embarrassing. It's been really bad lately because of the hot weather too, perhaps I should try and grab a couple of days off, or a long weekend to cope with it.

My boss has been great though, we had a good chat where I mentioned having days where I feel awake and get loads done, and then the next day I feel utterly wiped out. My boss has had exactly the same thing, from trying to strike while the iron's hot, working too hard and paying for it the next day. She's advised me to keep taking little naps while working from home, to get to bed early and to just try and pace myself.

Getting my fitness back up has been a real challenge though. I've managed a couple of 2.5K runs and felt absolutely drained afterwards. Even the VR fitness games are something I can only do in short bursts now. That's frustrating as getting my exercise-induced asthma diagnosed and getting it under control with Fostair inhalers was life-changing, now I feel like I've been knocked back to square one.

In terms of antihistamines, they were something I tried very early on as I think I have Mast Cell Activation Syndrome, and they did actually remove the weird spots I always have on my upper arms; I'm going to have a look into MSAC at some point in the future. That said, I'm also prone to Restless Legs Syndrome and they brought that on like a fucker, several times a night, meaning I was just permanently knackered from lack of sleep on top of the general fatigue.

Antihistamines are a bit of a trial-and-error thing. Chlorphenamine did absolutely nothing for me and I was lucky the cetirizine worked- and that neither made me drowsy. Think it seems like I have a T-cell issue rather than a mast cell issue though. MCAS could be a very interesting thing to look into here, given that there are populations of mast cells in the GI tract, and that's where pockets of Covid viral reserve apparently like to hang out (and like to give people diarrhoea). I'd definitely look into that. I'm pretty sure my long-Covid isn't a mast cell thing because I haven't had any respiratory symptoms despite the asthma.

Just got back on the cetirizine today in the hope it does something for the tiredness- who knows, if it works for headaches and it really is "a T-cell thing" I may as well give it a go. I was just taking one a day when the itching was bad, usually before bed so the itching wouldn't keep me awake, but I'll try taking it every morning now. Also it costs 79p for a box of 30 tablets at Lidl, which is certainly a lot cheaper than Tollovid.

Thanks for sharing your experiences here guys, some horrific stories but I hope you all make a good recovery x

[Kankurette]

You too. Did having COVID have an effect on your asthma at all?

[purlieu]

Hmmmm, maybe I should. Feeling very guilty and ashamed and just generally crap about myself for sleeping so much though. Really beating myself up enough as it is, it's just so embarrassing.

Probably the first thing to work on is this! Post-viral fatigue is a serious condition, regardless of its origins, and absolutely nothing to feel bad about at all. I know coming from a society that tends to consider sleeping more than the absolute minimum as laziness and unproductive makes it very hard to accept, but if your body needs to rest then let it rest. Being kind to yourself is a huge part of treating an illness.

I have considered getting some mast cell stabilisers to see if there's any improvement to come from them, although they're not cheap in themselves. I suppose it's worth a shot. It's one of those weird things when you start looking into illnesses and realise there's so much more there than "virus makes you sick". Approaching it from the perspective of viral reservoirs, t-cell and mast cell issues, inflammation, mitochondrial dysfunction, it's a fucking minefield. No wonder nobody got to the route of ME and fibromyalgia in the past if this is just the tip of the iceberg and they've been working on about 27p funding a year.

[Blue Jam]

You too. Did having COVID have an effect on your asthma at all?

Thanks Kanks- and no, surprisingly it didn't. In the early months of the pandemic I got a really nasty chest infection and was struggling to breathe with that- but the (PCR) test came back negative, and as I had a lovely productive cough instead of the typical dry one I had suspected it was something other than Covid. My breathing got increasingly difficult and I was considering calling an ambulance but didn't want to 1. Put extra pressure on the NHS, and 2. End up catching actual Covid from all those Covid patients in A&E, so I went for to an emergency appointment with my GP for a big dose of ventolin through a nebulizer, then a course of antibiotics plus some prednisolone which made me feel as fantastic as it made Donald Trump feel. My GP reckoned it was a bog-standard chest infection which triggered my asthma- essentially it was one big long asthma attack.

...so for that reason I was terrified of getting actual Covid in case I had a similar chesticular reaction and died, but in the end I just had a bit of a blocked nose, cold-like symptoms for a couple of days, then flu-like symptoms for a couple of days, and this insane itching and tiredness for a few months. No loss of taste or smell, and I didn't even have a cough!

Fucking weird illness alright.

[Blue Jam]

Probably the first thing to work on is this! Post-viral fatigue is a serious condition, regardless of its origins, and absolutely nothing to feel bad about at all. I know coming from a society that tends to consider sleeping more than the absolute minimum as laziness and unproductive makes it very hard to accept, but if your body needs to rest then let it rest. Being kind to yourself is a huge part of treating an illness.

Oh I know, but I love my job (can you tell?), I'm bored of working from home, and I have loads of things I really want to crack on with. It's infuriating sleeping this much, but I know you're right. I might see if I can get a long weekend off. Got loads of annual leave to use up anyway...

It's one of those weird things when you start looking into illnesses and realise there's so much more there than "virus makes you sick". Approaching it from the perspective of viral reservoirs, t-cell and mast cell issues, inflammation, mitochondrial dysfunction, it's a fucking minefield. No wonder nobody got to the route of ME and fibromyalgia in the past if this is just the tip of the iceberg and they've been working on about 27p funding a year.

I love you @purlieu ;) Yes, underfunding is a major problem, it's refreshing to see someone appreciating this instead of going on about fatcat academics with their gold-plated pensions and two hours teaching per week with three months holiday per year (HA!).

Anyway, mast cells, T-cells, inflammation... Lots of different types of cells, and they all interact like a really bastard complex little ecosystem. Good ol' crosstalk, the study of which seems to be half my job these days, and which makes my brain hurt.

See my rant in the Ricky Gervais thread- this is why we still need animals for some research, because growing cells in a dish is often too simple. You can grow human lung epithelial cells in a dish and chuck some Covid on them and learn a few things, but to get a full picture you have to add your T-cells, mast cells, give 'em a source of extracellular matrix, make sure they get all their nutrients etc and before long you're wanting an entire human body. And humans aren't exactly queuing up to have Covid viruses shot into their nice healthy lungs (loads consenting to donate autopsy tissue though, for which I am eternally grateful).

Body-on-a-chip systems are pretty cool though. We're slowly getting there:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6687466/

(fucking hell I'm a nerd, sorry)

[Kankurette]

Brexit hasn't helped, considering the amount of funding researchers got from the EU.

[Blue Jam]

The main reason I voted Remain tbh

[Kankurette]

That was part of it for me. It still makes me feel a bit sad walking around Manchester or Liverpool and seeing the 'funded by the EU' signs.

[purlieu]

Further evidence to suggest viral reservoirs comes from this study in Colorado which has found 100x more Covid-fighting T-cells in long Covid patients than those who have recovered. It's looking like the next step will be wider research into treatment with anti-virals, which have shown promising results in small scale experiments so far.

In terms of the funding discussion, I've seen it all play out in real time - next to no progress for people with ME in the 14 years I've known my girlfriend, yet two and a half years into Covid and we're suddenly getting stuff like this, because there are fears about long Covid affecting the economy.

[Blue Jam]

I 'member when ME was referred to as "Yuppie Flu" by the tabloids. Good thing we've moved on since then at least.

Just over three months post-Covid for me and still getting a sudden need to have a nap after a few hours of exertion (mental or physical). Doing my fucking nut in tbh. Trying loratadine now to see if that works any better that cetirizine. At 99p per box from Lidl it's got to be worth a shot.

[canadagoose]

I 'member when ME was referred to as "Yuppie Flu" by the tabloids. Good thing we've moved on since then at least.

Just over three months post-Covid for me and still getting a sudden need to have a nap after a few hours of exertion (mental or physical). Doing my fucking nut in tbh. Trying loratadine now to see if that works any better that cetirizine. At 99p per box from Lidl it's got to be worth a shot.

Fucking dogshit tabloids. They never miss an opportunity to punch down.

It seems like my Dad, in his early 60s, has long COVID and it's really getting him down. I personally have fibromyalgia and the chronic fatigue gets me down quite a lot (and I spend most of my time sleeping nowadays), but for some reason I'm more outwardly annoyed when it's someone I care about rather than myself. Has anyone had any luck with the NHS and long 'vid? I really want to help him somehow. Is it worth starting up one of yer crowdfunders and trying to get private care for him?

[purlieu]

If he isn't seeing the NHS about it at the moment it's definitely worth him doing so. Even though there's no treatment at the minute they can rule out any complicating factors, he'll be on the list for when treatment comes in (studies with antivirals are happening in the US right now) and, frankly, having as many people registered with it as possible will raise the awareness of how serious it is. As for private treatment, I'm not sure there's anything they could do that the NHS can't offer at the minute, it's all about symptom management at the mo, which I suppose is something you're used to yourself. Good fruit and veg heavy diet with supplements if necessary, and pacing - making sure he does less than he feels capable of rather than more. 

I had my initial 'make sure it's not diabetes or something' blood tests on Friday, so providing they come back clear then next week I should be on the system.

After six horrible weeks, I'm back on my feet again, doing the cooking and having a slow stroll round the block, and my primary symptoms have once again moved from fatigue to muscle and joint aches. Knowing my luck I'm sure something else will come along to stop my progress again, but at the moment I feel much more positive again. Still a very long way to go, but making progress is the most important thing. I had about ten days where I didn't even go downstairs, just lay in bed for the most part, and it seems to have done my recovery the world of good. I'm only doing one shit a day for the first time since before I got it.

[canadagoose]

If he isn't seeing the NHS about it at the moment it's definitely worth him doing so. Even though there's no treatment at the minute they can rule out any complicating factors, he'll be on the list for when treatment comes in (studies with antivirals are happening in the US right now) and, frankly, having as many people registered with it as possible will raise the awareness of how serious it is. As for private treatment, I'm not sure there's anything they could do that the NHS can't offer at the minute, it's all about symptom management at the mo, which I suppose is something you're used to yourself. Good fruit and veg heavy diet with supplements if necessary, and pacing - making sure he does less than he feels capable of rather than more. 

I had my initial 'make sure it's not diabetes or something' blood tests on Friday, so providing they come back clear then next week I should be on the system.

After six horrible weeks, I'm back on my feet again, doing the cooking and having a slow stroll round the block, and my primary symptoms have once again moved from fatigue to muscle and joint aches. Knowing my luck I'm sure something else will come along to stop my progress again, but at the moment I feel much more positive again. Still a very long way to go, but making progress is the most important thing. I had about ten days where I didn't even go downstairs, just lay in bed for the most part, and it seems to have done my recovery the world of good. I'm only doing one shit a day for the first time since before I got it.

Thanks for the info. I'll ask him at the weekend what he's seen the doctor about so far. With any luck he'll get invited to do a study.

[Blue Jam]

Just had a day of feeling completely wiped out and unable to do anything. Just brain fog and wanting to nap all the time. Going to chat with my GP tomorrow. Not sure what they can do but it may be worth getting referred for blood tests or something. In any case this is driving me up the fucking wall and I'll need to do something.

Skin is barely itchy at all now though, and the Covid rashes are almost completely gone. Hoping the fatigue lifts next.

[purlieu]

After my last relapse I took ten days to do absolutely nothing, didn't even go downstairs (lucky enough to live with people who could cook etc.) and it did me the world of good, yesterday I had almost no symptoms at all and today I'm only a touch worse than that. Still limiting my exertion, but I'm back to cooking meals, generally pottering around and doing a 15 minute stroll in the afternoon. Long way to go still, but it's really nice to be back in recovery mode again.

Blue Jam, take some time off, please. The less you do, the better you'll recover.