Chat about Novel Coronavirus - 2019-nCoV - COVID-19

Just really bummed that you guys are in this situation. Really sorry to hear it.

It's OK, she mentioned all the people that had gone private in her online support group have been prescribed medical marijuana, so I said, mate, hold my cig. She's not quite so badat the moment and while I'm not all "fuck big pharma, let's all take horse drugs" (the other horse drugs) although although they're meant to be good for the old depression)). She's doing a bit better and I've been on about it helping for a little while so maybe she'll give it a shot for a while, meant to be good for glaucoma and that's kinda similar.

Oh yeah, totally get the lack of medical support. I have ME (in case anyone was wondering why I don't seem to be around much anymore! This is why!), so am well-versed in the shitshow that is trying to get any kind of medical help for this kind of thing. If ME had been taken seriously at scale at any point in the last thirty fucking years, I don't think people with long covid would be in the situation that they're in now.

"Support" in this context I suppose is "finding competent and sympathetic people in the medical profession and benefits bureaucracy", which I know is a tall order, but I'm told they exist even though I am yet to meet any myself. But I hope your wife finds some of them.

Sorry, that came out WAY more bitter sounding than I intended going into this post, grimacing face emoji, fuck chronic illness and fuck covid innit

Grim. I really hope this thing is solved. I guess the good news (such as it is) is that there's so many people now with LC that it's getting a lot harder to ignore research-wise, and a lot of excellent work had been done right before the pandemic hit to loosen the hold of "oh they're just a bit tired, tell them to go out for a jog and think happy thoughts" shite that's been the mainstay of post-viral syndrome treatment up until now.

Who knows, but... I'm cautiously optimistic that some kind of treatment will be found. Just hope it happens before people pour decades of their lives down this particular hole.

One side effect of so many health professionals getting long covid is we might see a shift in attitude/approach. Unfortunately many of those who now understand the reality of trying to get support are no longer working, but there are a lot of "I never knew being a patient was this shit" stories making their way into the medical consciousness. Kind of shit that the realisation depends on thinking medics are more credible than other people.

I thought the scale of numbers of people with long covid would mean a wider change in social attitudes to chronic fatigue, but that doesn't really seem to have happened.

IMO the social attitudes will only meaningfully change when there's some kind of viable treatment. If you come down with something like long covid (or ME), then you're sort of breaking this unspoken social contract that says that illness is a temporary thing, and that you'll automatically get better. If you're in this group of people that don't get better, then, well, fuck, what's wrong with you? Why aren't you fighting it? Don't you WANT to get better? Why aren't you trying harder to beat it?

People IME don't like to think too much about folks who get sick and who just kind of... keep... being sick, especially to the immenese degree of sickness involved in LC and the like. It's shit and it's ableist AF, but at the same time it's quite predictable in terms of how people in the main react to these situations. If a treatment is found, there'll be a collective social amnesia where everyone will instantly forget everything they ever believed about "yuppie flu" or whatever, because now it's a thing with a clear resolution, and these sick people can go ahead and stop doing the thing.

I just wanted to share my recent experiences like others have.

Your entire participation in this thread is derailed... at best it's vaccine hesitation sprinkled with some misguided conspiracy theory, but at worst you are full-on vaccine denial, COVID denial, and actively spreading misinformation.

I'm banning you from this part of the forum, as prior to COVID your posts weren't totally out there... but consider this a strong warning to not spread misinformation and conspiracy theory crap.

From what I can tell there's an awful lot of cross over with ME, so if there's a silver lining to this all, maybe it'll be more effective treatments for that from this.

Negative test for me today day 6.

Really sorry to read some of the stories on here recently.

Do the tests always fade out slowly or do they go quick? Had a very strong line today (day 6) and hoping for a better result tomorrow!

Mine was a clear red line one day (not angry) and gone the next.

Wife has had clear red lines and a feint one today.

Ymmv.

had about 6 days of the faintest lines despite having no symptoms after 5 days of fairly dark lines. (and symptoms) so it seems to vary a bit, maybe the different test manufacturers make a difference.

So my mums struggled my whole life with ME - 40 years. Doctors (medical profession in general) dont know what to do with ME, half of them treat sufferers like is make believe and the few that care have no resources. She believes that it was caused by the family home being treated for woodworm and having no option but to be in the house immediately after. If were talking damage to the immune system & extreme fatigue levels then yes there are obvious similarities although hers and many stories ive heard of ME sufferers seem to stem from one form or another of poisoning be it chemicals from crop spraying or certain materials used historically in dental fillings etc shes spent so long trying to be understood that far from welcoming the association to long covid shes actually frustrated by it. Whilst i understand what you mean and agree in hoping it leads to research helping both parties, it could potentially belittle an ME sufferer to assume they are similar things.

hoping it leads to research helping both parties

This was the main thing I was getting at, but I don't think the similarities belittled pre covid ME/CFS sufferers. Although I do empathise with the frustration of suffering from something for 40 years and having it dismissed or belittled, for it to only start getting recognised relatively recently and then a load of people possibly getting it at once. When my wife was"only" suffering with long covid before the intracranial hypertension kicked in she was essentially diagnosed with ME and pointed towards the obviously lacking ME resources. I think I read that pre covid about 3/4 cases of ME are thought to have been triggered by some kind of viral infection and an immune system over response to it, so it's not a huge leap to consider they may well be the same, there seems to be quite a large spectrum of severity and symptoms and possible causes already.

Yeah, the ME patient community predicted long covid right at the start of the pandemic, long before anyone else started talking about it. It's always been known for having wildly hetereogenous triggers, which seems to be one of the reasons its been hard to study (well, that and the near-total lack of will to take it seriously). I don't think it's a stretch that similarities in the underlying pathophysiology will be identified in LC and ME.

I do sympathise with the anxiety that all these people coming down with LC and getting in the news takes away from existing ME cases, but TBH I get much, much angrier when I read news reports or studies that act like LC is some brand new thing with no similiarities to anything that's ever existed in medicine before. That's a big worry for me - that people will decide LC is the "real" condition and just continue to ignore existing ME patients. IMO it's better for people with both to try to make sure nobody gets to (continue to) pretend that the ME cohort is irrelevant/imaginary.

Anyone else find the current guidance once you test positive hard to wrap your head around?

At 5 days I will undoubtedly be symptom free (I was previously, and currently have zero symptoms), and if I've understood the guidance will be free to go about my business so long as I don't rub shoulders with the vulnerable.

Is there any scientific research to support this being a good idea?
Or is it a bit of our government trying to pretend it's all fine and back to the office you go...?

It's both really. It's definitely the latter, but I believe the science says that after 5 days you're much less likely to transmit the virus (without symptoms).

I don't think anyone is pretending that there's no chance, because you are advised to wait 10 days before seeing anyone who's clinically vulnerable.

You can use the presence/thickness of the line on a lateral flow test as an indicator of viral load, so really you should wait until there is no line. But lateral flow tests aren't that reliable...

Personally our household has just been visited by the Covid fairy again and I'm testing negative but have had symptoms and other half is still definitely positive so I'm staying at home for a bit longer.

But my boss told me to stay at home until he's clear so the attitude of your work/boss makes a big difference in reality.

A colleague who sits next to me at the office has had one positive test and one negative LFT test in a day at a conference. What's the likelihood that the negative is the false rather than the positive? He's got back in the car and gone home from the conference but more concerned about whether I should be isolating (tested negative this morning already) given I was sitting next to him on Monday.

What's the likelihood that the negative is the false rather than the positive?

Very high.

Assuming you are vaccinated then self isolation following a close contact was ditched ages ago

I'm not in the UK anyway and its all "Don't ask don't tell" where I am, which is probably why, anecdotally, it's spreading like wildfire around workplaces and schools. I'll WfH for a couple of days and see how I go, I really don't like the idea of making other people sick.

i tested negative after 7 days of positive on monday. was grateful to get out on the bike with my club last night too. just about kept up !

definitely a lot more people around testing positive again... have a big work do on friday followed by going to the T20. no doubt will be another office spreader event (just like our last 2 word do's.......!)

Tested positive this morning after five days of being sick and sure I'd got it but not testing positive.

This is a pattern for me and has happened before, I don't test positive for a while then get a fairly faint line. It will be interesting to see when the line clears.

It has really whacked my sleep this time, the body battery on my Garmin went up by a whopping 3% last night which reflects how I feel. But on the plus side no real brain fog like the previous times.

Other half is a lot better and his very angry line is a lot fainter.

Hope you get through it ok.
Kind of annoyed the new strains don't seem to provide increased immunity, really no benefits to catching it!

Thanks. So far it's crap but I could feel worse.

Yeah I was reading about that - I look forward to round four! 💩