Long Covid

[purlieu]

It depends on your cash situation I suppose. I'm going to consider a smaller dose next time. One of the trials Todos are doing is 15 days of 12 a day and then down to six a day, so I might try that next time and see how it goes. My parents have agreed to pay towards the next load as it's my birthday next week.

It all comes down to whether you can get rid of it permanently from this or not really. If you can keep it at bay on a couple of tablets a day then for most people I'd imagine it's worth it; obviously only the rich are going to be able to keep up the full course for more than a few weeks. And experimenting with it will also cost money. And I suppose then it comes down to how it works: if it's viral reservoirs then one would hope that could be flushed in a 30 day course, if not less; it also has anti-inflammatory properties, so if it's that that's causing me to feel better then it's merely treatment rather than a cure and would have to be ongoing. I'll do some more research before I get the next lot and probably experiment with dosage.

[purlieu]

Just listened to a very good podcast with the CEO of Todos and the woman who came up with both Tollovid and Tollovir, which has actually boosted my confidence a little. The scientist who created it is very respected and has helped develop HIV treatment; the reason it's marketed as a supplement is because it was an easy way to get it into the market quicker, rather than it being a questionable herbal cure. The CEO explained the dual purpose of 3CL protease, which gives more context to the differing responses to Tollovid. The protease also inhibits the body's immune system to stop it fighting the virus, thus Tollovid not only stops viral replication, but it also helps reactive the immune system in order to kill off the remaining virus. This explains why some people, especially those who've had long Covid for longer, are getting relapses while others - with better or less inhibited immune responses - only need the five days. This matter of dosage is one of the things they're hoping to address with the second and third phases of the clinical trials.

The key point for me was that he doesn't imagine anyone needing to take it indefinitely, so long as they get the right initial dosage. As I'm only four months in - which, despite it feeling like a lifetime, is still a fairly short time - I'm hoping a 30 day course will be enough for me.

It wasn't specific about how much to take daily, but from what I heard I don't think two a day would necessarily be enough to do the job. But as there's no clinical data back yet it's hard to say.

It's here and only an hour long if anyone fancies listening:
https://www.tlcsessions.net/episodes/tollovid?format=amp
It's part of a podcast series called The Long Covid Sessions by two woman who've had it for a couple of years, and they push the CEO when he glosses over a few answers so it feels reasonably balanced. He's also very, very aware of what he can and can't say which lends some credence to what he does say.

My girlfriend tweeted him earlier and he said they're hoping to have it for sale in the UK in the fourth quarter of the year. Even if I get better from it I'm thinking of getting some to keep in my cupboard to help fight Covid off when I next get it (which is what it was designed for in the first place), as I don't want to risk getting this shit again.

[MojoJojo]

the reason it's marketed as a supplement is because it was an easy way to get it into the market quicker, rather than it being a questionable herbal cure.

Lol, that's exactly what all the snake oil people say.

Sorry, I can't argue with your experience but:
Plant based/ natural
Boosts your immune system
Testimonials instead of studies

It's a snake oil bingo card.

[purlieu]

Except it was developed alongside a stronger version (Tollovir) which was immediately submitted for clinical studies. The same protease inhibitor is also the active substance in paxlovid. And it's developed by a scientist based on her experience creating protease inhibiting drugs used to treat HIV and SARS.

[Blue Jam]

@purlieu, as a massive nerd who doea a bit of Covid research I have been reading about this Tollovid since you first posted about it, and it seems legit to me. CL3 proteases have been a candidate target in Coronavirus treatment long before SARS-CoV-2 emerged and the pandemic has just made researchers revisit that hypothesis.

For what it's worth... tell me I'm full of shit if you want. I'm no expert, just getting desperate and despite being cautious and sceptical this seems to be more than just "snake oil".

[MojoJojo]

The results of which they're releasing as press releases.

https://investor.todosmedical.com/news-events/press-releases/detail/205/todos-medical-announces-positive-biomarker-data-from-phase

Genuinely funny disclaimer at the end:

Forward-looking Statements

Certain statements contained in this press release may constitute forward-looking statements. For example, forward-looking statements are used when discussing our expected clinical development programs and clinical trials. These forward-looking statements are based only on current expectations of management, and are subject to significant risks and uncertainties that could cause actual results to differ materially from those described in the forward-looking statements, including the risks and uncertainties related to the progress, timing, cost, and results of clinical trials

i.e. we've just made shit up.

[purlieu]

Todos are a marketing company so there's definitely bullshit to wade through in how it's presented. They're definitely going out of their way to big it up, almost certainly because they're trying to flog as much of this ludicrously priced stuff to general customers before it becomes a more standard treatment. Their CEO has basically described the main reason behind developing the supplement version (minus the anti-cytokines present in Tollovir, which require clinical testing) was to effectively use the general public as a testing ground, which is pretty dodgy territory as far as it goes, so I'm under no false impressions about the company's 'qualities'. And the fact that it's a supplement was enough to not even consider using it when I first heard about it months ago.

Basically, though, the science behind the active protease inhibitor that makes it work is sound and dates back more than 20 years, and I think that once the clinical trials on long Covid patients are complete it's likely it'll be used as a treatment for those showing evidence of viral reservoirs. Which, I'm hoping, will lead into research into the mechanism used in EBV's replication in the hope of providing similar treatment to people with other chronic illnesses.

[Blue Jam]

^^^ yes, all of this

developing the supplement version (minus the anti-cytokines present in Tollovir, which require clinical testing)

iirc this is referring to shikonin, a plant extract which is added to Tollovir but not Tollovid. From what I've read on that it seems it has a pretty small therapeutic window and high doses can have serious harmful side effects, so proper clinical trials will be needed before anyone starts fucking around with that. The extract used in Tollovid is something which has been in use much longer and which has been studied thoroughly and hasn't produced harmful effects even at high doses.

A supplement made with tried-and-tested ingredients is one thing, but shikonin is certainly not something I'd want to try without proper medical supervision.

Incidentally I'm not referring to Todos's press releases here, but papers on CL3 proteases and the isolation of compounds such as shikonin and extracts of Lithospermum erythrorhizon/gromwell root. Perhaps I should put together a reading list.

Also see above- the clinical trial has been designed and is due to start soon. These things take time, and funding, and you need to big up early findings to get investors on board. This is no different from doing a small proof-of-concept study to get some preliminary data (not intended for publication) before applying to a research council or industry partners for funding.

[Blue Jam]

Took delivery of my Tollovid yesterday morning and decided to start on three capsules twice a day for five days, then one a day after that. It ain't cheap and my 'vid probably isn't as severe as yours, @purlieu, so I think I can afford to ration it out a bit. My main priority is getting well ahead of my return to werk and a little holiday after that, going to be doing lots of hiking and need the energy.

It's only been 36 hours and nine capsules so far, but I'm already feeling an uptick in energy and my ability to concentrate on things. Went for a run yesterday and was expecting to have a major crash today but it still hasn't come. Actually got up early this morning and got some housewerk done and feel like I may even have the energy to do a nice bit of cooking later on.

Had a bad flare-up of the hives on Thursday, skin is now a little less itchy but the difference isn't as drastic as the change in my energy level. I'd forgotten what it was like to feel this awake!

Hope it continues...

[purlieu]

That's wonderful, really glad to hear it's working for you! Fingers crossed for a full recovery.

[Blue Jam]

Day 3. I am typing this at 9am feeling more awake than I have in months. Going to drop the dose down to two capsules twice a day for day 4 and 5, then maybe one capsule per day after that. From reading what you've posted, @purlieu, I want to drop down to the "maintenance dose" and see if that keeps the viral reservoirs at bay and prevents a rebound. And I'll get me money's worth.

Thanks again!

[Kankurette]

Day 3. I am typing this at 9am feeling more awake than I have in months. Going to drop the dose down to two capsules twice a day for day 4 and 5, then maybe one capsule per day after that. From reading what you've posted, @purlieu, I want to drop down to the "maintenance dose" and see if that keeps the viral reservoirs at bay and prevents a rebound. And I'll get me money's worth.

Thanks again!

That's brilliant news!

[Blue Jam]

Day 6 on Tollovid today. After thinking I could drop down to one capsule per day I finally had a crash in the afternoon. Bugger... Still, it wasn't as bad as before, and I had slept badly the night before so maybe it wasn't actually Covid-related. Five days without needing a nap at all was blissful, well worth the cost. Going to go back to two capsules a day and see if that resets me a bit. Maybe try tapering off more slowly. One crash per week? I could live with that.

Had a really mad bit of sleep paralysis today. Only about the third or fourth time in my life. Was kind of fascinating once I realised what was going on. I felt like a robot that needed rebooting- "Hmmm, I can feel my legs, can someone press the button that makes them move please?".

[purlieu]

How's it going now? Interested to know how smaller doses have treated you going forward.

Had some faffing around with my second order trying to get a voucher they offered but it finally arrived yesterday - combined birthday present from my parents and girlfriend, so I've got a lot now - and I'm already up to about 90% normal. Some stinging eyes and achy shoulders but that's about it. Realistically I probably need maybe two or three weeks worth but I'm doing a longer course anyway. Will do my last bottle at six a day rather than 12.

Just been to the supermarket for the first time since restrictions were lifted. It's actually bonkers seeing nobody with a mask on when last time I was there everyone was wearing them. It's also bonkers considering there are still 100,000 cases a day, people now have waning immunity and long Covid is more likely from reinfections. I have a horrible feeling there are going to be a lot more people out of work with this shit by next year.

[purlieu]

Day 7. Symptoms have now started getting worse and I seem to have lost all the momentum I've made in the last month. Today I feel worse than I have since I started my first course of Tollovid.

a) This is baffling. Not only does it go against the science of protease inhibitors, especially given that it worked for me last time. What the bollocking hell can have happened to my body in the 11 days between courses that five days can cure every one of my symptoms one time, and then it can have no effect whatsoever in seven days the second time. I can't even blame placebo: the first lot I went into with a lot of scepticism, whereas this time I took it expecting to be permanently cured.

b) This is absolutely devastating. I'm fucking cursed. I've spent the vast majority of the past 12 years with depression and anxiety, and for the most part this has led to a severely pessimistic perspective. As late as last July I genuinely believed I would spend the rest of my life lonely and miserable. A few times this year, however, I've actually allowed myself to feel optimistic: firstly, my girlfriend and I found a city we would both be happy living in, where I already had a lot of friends, and even found a place that would accept housing benefit and a dog. This seemed impossible for ages, but I really thought my life was back on track after more than a decade. A couple of weeks later I started showing symptoms of long covid and the whole future has to be scrapped. Then after a couple of months I started showing improvement through pacing, and if I'd continued at that rate I could have been back to normal between six and 12 months later. Then I overdid it visiting mum in hospital and I've had no luck with pacing after that relapse. Then I tried Tollovid and every one of my symptoms was cured in five days; less than two weeks later I started my second, longer, course, and it's actually having no effect whatsoever. All this has taught me one thing: never be optimistic, because it'll only be wrenched away from you straight after and you'll end up feeling worse.


edit: viral rebound can apparently cause a second course to take longer initially, so I'm going to keep taking it and it'll probably still work. It's just the fact that I've actually started getting the muscle stiffness again - my first symptom to disappear - that makes it seem like it's not working slower, but actually not working at all and that's terrified me. I also now have severe anxiety and have no idea what symptoms are caused by that.

[shoulders]

Keep the faith, something like this is definitely not going to be a linear recovery. If it worked previously and was notably working then the conditions were right and if tollovid along with whatever other conditions were in play induced that improvement then in theory that can be reproduced, which is something to hold on to. There are likely some major rebound/chaotic internal conflicts going on with your body so setbacks like this are not out of the question.

If anything, these crashes and reversion underline what a severe illness this is and all the more reason to try (- extremely difficult though it must be -) to not get ahead of yourself  treat the really good days for now as encouraging outliers and when reflecting on how it's working, judge it against any improvement on the mean average days over a longer period, keeping a brief diary if it helps. You'll learn more what's happening with time.

[purlieu]

Thank you, you're absolutely right. It's just so hard to be logical about it at the moment when it's so emotionally devestating. To go from feeling 100% better and planning out getting life back on track to suddenly that cure seemingly not working is too much of a headfuck. I foolishly believed that this was the end of it (and it's quite possible that if I'd been able to carry straight on to a longer course without the gap then it might have been), so now there's the combination of having to give up on that, losing the progress and the actual symptoms, which is just too overwhelming a combination to be able to get past at the moment. I think the fact that I can't fathom exactly what has changed in the interim; I'm not doing anything differently in terms of diet, lifestyle, etc. From what I've read and watched, there's a hypothesis that the virus goes into hiding somehow, which might explain this but frankly I can't get my head around the whole thing. If that's the case then it might be a matter of maybe trying a new course of Tollovid in a few months once the virus is up and about again. And if so then I'll make sure to do a longer course then, rather than waiting.

Today I'm feeling the worst I've done in a couple of months. All-over body aches and stiffness, hobbling around at about a quarter of my normal speed, every time I stand up my tachycardia is so bad I feel like I'm about to faint.

The long Covid clinic people have been in touch, turns out the clinic is in the same hospital my mum was in earlier in the year, 45 minute drive away. The one where visiting her caused my symptoms to dramatically worsen. Joy.

[ZoyzaSorris]

I got a really nasty dose of the C19 back in early march 20 (this was before testing unless you'd just got back from china but there really is nothing else it could have been) - had been a bit under the weather for a few days, was walking along and suddenly got very weak, thought I was going to have to lie down in street and die, just about got home and within an hour could hardly speak, took all my effort just to breathe, was in bed unable to move and barely able to get the energy just to breathe for a few days, took many weeks to feel a bit better... lungs haven't been the same since.

For a few months after all I really noticed was an inflamed congested feeling in my lungs. But then that autumn I had a real relapse - not quite as bad as first time but nearly. Then again in Jan, and again after my first jab. Then after my second jab, and in summer 21. Then really bad again in autumn 21. By this time I was getting quite upset.

I have still been getting relatively regular relapses and if anything they are getting worse, longer and more regular, which is worrying. Bouts of catastrophic fatigue, breathlessness, extreme anxiety and cognitive deficits, memory loss, dizziness, absolutely insane headaches, basically getting driven mad to the point of desperately hoping for the sweet release of death almost every second.

Long covid clinic was worse than useless (didn't help that the woman running it was a complete twat with zero knowledge), got docs to prescribe me various inhalers which didn't help, took some sort of anti-histamine that did nothing except give me agonising gout, turned to self-medication out of desperation, took anti-coagulants that just gave me bruises all over my legs, only thing that worked really well was steroids from India, cleared it all up a treat overnight, unfortunately didn't take long to give me borderline psychosis, Cushing's syndrome, an anus pouring with blood and a desperate and insatiable addiction to chocolate milk and ice poles (I once ate 10 in a day).

On unfortunately vital cessation, before I bloated into a murderous scarlet human balloon, my symptoms returned worse than ever. I also passed out and pissed myself.

Really starting to feel pretty suicidal about it all to be honest. Maybe I'll try the Tollovid. Anyone got any good online resources, blogs, podcasts, vids that the follow on all of this?

[Blue Jam]

How's it going now? Interested to know how smaller doses have treated you going forward.

Sorry for the late reply, been busy because I've been back at werk and back to normal.

Went on holiday a couple of weeks ago, which was one of my main motivations for ordering the Tollovid- I didn't want to spend half the holiday asleep, and we had a lot of hiking planned and I didn't want that to wipe me out. By then I was down to two capsules a day and I was glad they weren't confiscated at the airport because they continued to work like a dream.

Had lots of early starts lately and have been coping just fine, when I probably wouldn't have been able to get out of bed at 6am two months ago. Has a total of three crashes since starting my bottle of 60 capsules, as opposed to one per day, and none were anywhere near as bad as the ones I got in the peak of long Covid.

Down to one capsule per day now, got six left. Hopefully that'll be enough but if not I'd consider a second bottle money well spent.

Sorry it's not worked as well for you purlieu, but it sounds like your symptoms were much worse than mine. Have you had any blood tests? I recently got chatting to someone who was found to have a vitamin B12 deficiency and found a B12 jab majorly sorted her out. There's also this fella who swears by phytochemicals after taking part in a trial- BBC link so no mention of the brand name unfortunately, but they are available to buy in supplement form from Holland & Barratt and the like:

https://www.bbc.com/news/uk-england-cambridgeshire-61162782

[purlieu]

Maybe I'll try the Tollovid.

So, I'd say you'll probably need more than one bottle. Don't do what I did and end up with a small, probably hidden amount of the virus somewhere in your body that seems immune to the fucking stuff. So if you can afford it, get a few of them and try.
Sorry to hear it's so bad for you. :( I've not seen any reference to any lasting side-effects of Tollovid so it's definitely worth a shot. There's also an HIV inhibitor which is supposedly good for it (begins with an M, can't think of the name for the life of me), although it's ludicrously fucking expensive (a bottle is about £700, from America).

Anyone got any good online resources, blogs, podcasts, vids that the follow on all of this?

The Long Covid Sessions is a good podcast.
Long Covid SOS is worth a gander. Their Twitter is definitely worth a follow, it's where I get a lot of my news from.

There doesn't seem to be anything massive to report at the moment. Some good results from the Covid drug Paxlovid (another 3CL protease inhibitor) combined with an autoimmune suppressant, and the WHO have finally declared exercise therapy is bad for people who get post-exertional malaise (typically they haven't done the same for ME). Otherwise there's just a lot of studies, many of which are coming up with viral persistence as a probable cause.

I'm in touch with the long Covid clinic now. I'm filling in a daily fatigue diary through a recovery app. The app is staggeringly out of date and generally pretty fucking awful, citing the reasons for the condition most likely to be the immune system repairing the body from Covid, and overreacting to colds and other infections; it's also subtly trying to push graded exercise. When I have a face-to-face appointment I'm going to make a complaint about it, as it's very dangerously behind current science.

Down to one capsule per day now, got six left. Hopefully that'll be enough but if not I'd consider a second bottle money well spent.

I'm really glad to hear that! Amazing news. Hopefully, as long as you don't massively overdo it, your body will gradually recover in its own time now.

Sorry it's not worked as well for you purlieu, but it sounds like your symptoms were much worse than mine. Have you had any blood tests? I recently got chatting to someone who was found to have a vitamin B12 deficiency and found a B12 jab majorly sorted her out.

My blood tests all came back fine - I actually had a look at my medical record online and every one was in the healthy zone except B12, which was actually higher than normal.

I'm actually very, very slowly making some slight recovery now after 16 days on my second course of it, but given that I went from bedbound to zero symptoms in five days the first time, it's still not massively encouraging. At the start of the week I was midway through a period of excruciating joint pain, my hips and shoulders in agony all day. That's very slowly been easing and has finally gone today; I'm taking a couple of anti-inflammatory supplements as well, so it could be those that have done it, although at exactly the same time as it went, my shortness of breath came back again, so fuck knows. My energy is still much higher than it was pre-Tollovid, but with the pain and short breath I haven't really had chance to properly test out my limits yet. I've had a couple of mild crashes since starting it again, though. If this week's improvement is Tollovid related, then I will hopefully be better in another week or so, and will probably end up grabbing a couple more bottles to make sure. If not, then fuck knows what I'll do next. I'll have a look at the phytochemicals thing, I'm open to anything at the minute. Still absolutely fucking gutting that only three weeks ago I felt 100% back to normal. If I'd been able to continue taking Tollovid rather than wait then I might well be better now...

edit: here are the two substances used in the Cambridge study. Will definitely give these a peek. http://phyto-v.com/
edit 2: both are around the £16 mark for a month's worth, will probably give 'em a go if Tollovid decides to be an arse through to the end. Be hilarious if they work at that price.

[purlieu]

Went for a walk round the block yesterday, felt very sleepy after and today I'm totally wiped out, so I can probably scratch the "very slowly making some slight recovery" thing. This is the worst I've felt after so little exercise since mid summer. Fuck my life.

[purlieu]

Living With app has been giving me this week's fatigue advice, which is all about sleep hygiene. Sadly it appears to be generic sleep hygiene advice rather than specialised, and thus it's largely based around not being in bed in the daytime, doing activities to make you tired, and other things that will only act to make one's post-exertional malaise worse. Absolute joke.

The point I stopped using it was when it suggested poor sleep might be to do with raised cortisol levels. The one reliable biomarker found with long Covid so far is dramatically reduced cortisol levels.

When I have my face to face assessment, it'll be with the respiratory clinic. There's increasing evidence that breathing issues in both acute and long Covid are actually caused by vascular problems rather than respiratory, and long Covid is generally considered by scientists as a joint vascular and neurological condition. This entire thing is a massive joke. I mean, it's better than the fact that ME is still treated under mental health in the NHS, but that's damning with faint praise if there ever was such a thing.

[ZoyzaSorris]

Thanks for the info, perlieu. Sorry to hear you are going through a similar state of living hell. Really concerned about what's going to happen to me at this rate.

[purlieu]

30 days Tollovid complete, no improvement at all. Can't afford any more. I've now lost all hope for the future. Cannot even fathom what's going on in my body to cause this. Tried a walk around the block on Sunday and was in bed all day Monday. Life is over. Would genuinely have killed myself by now if my girlfriend hadn't said she'd do it too if I did.

[ZoyzaSorris]

Sorry to hear that. I know what you are saying, I've been absolutely horrendous the last couple of weeks and absolutely wanted to be dead (but have a kid that relies on me so can't even do that). I think I might be improving slightly today but don't want to tempt fate. I don't know how many more of these real deep dives into hell I can survive before I'm permanently broken into bits to be honest.

[Blue Jam]

30 days Tollovid complete, no improvement at all. Can't afford any more. I've now lost all hope for the future. Cannot even fathom what's going on in my body to cause this. Tried a walk around the block on Sunday and was in bed all day Monday. Life is over. Would genuinely have killed myself by now if my girlfriend hadn't said she'd do it too if I did.

Finished my 60 Tollovid capsules at the weekend. Had dropped down to one capsule on alternate days by the end. Had a bit of tiredness since and had to have a little lie down a couple of times but nothing near as bad as needing to take a two-hour nap every day. It's a manageable level of tiredness. Just going to bed a bit earlier than I used to is enough to keep me functional now.

Also had my second Covid booster (jab #4 overall) last week and while I was yawning a bit after a few hours I didn't experience anything near the jetlag level of tiredness I got with the previous three. Didn't even need a nap. I did have to wonder if the Tollovid had made a difference there, even if I did still get a bad case of "Moderna Arm".

Thatnks again for the Tollovid recommendation @purlieu, but I do feel bad that it was your bright idea and I'm one of the lucky sods it worked for. I just hope it soon becomes more widely available and more affordable.

Have you tried the phytochemicals supplements yet? I'm taking some and wonder if that's partly why I haven't had a massive rebound (yet).

[Blue Jam]

Also I haven't been taking Phyto-V, just some other supplement, byt Phyto-V is only a few quid more so I'll give it a go, cheers @purlieu.

[purlieu]

I'm taking Phyto-V and YourGut+, both from that study, and it's having no effect at all.

My next attempt will be Nattokinase. There are some very promising stats on Twitter at the moment (backed up with Proper Science). It's a naturally occurring blood thinner, so I'll have to be careful, but it seems to remove micro clots and also break down the virus's spike protein, so it seems worthwhile. It'll be a long term thing rather than the permanent cure that the right amount of Tollovid can be (their official recommendation is now 15+ days for long Covid; I probably wouldn't have done that anyway, but I've added 'not doing a full course immediately' on my ever-growing list of life regrets), but at the moment that's got to be better than nothing.

I'm glad the Tollovid helped @Blue Jam . I can't deny there's a touch of envy there, but it's eclipsed by a general sense of self-pitying 'why the fuck have most people recovered from this virus but it's still here ruining my life?' that's making me angry at every human being who's getting on with things now anyway. As your immune system has been gradually fighting your viral persistence recently, the jab may well have been much less of a shock to the system hence your much milder response to it.

I've been chatting to the CEO of Todos on Twitter who has been very helpful and even sent over some free Tollovid Daily to boost my intake, his theory is that the viral rebound after my first lot might have overwhelmed my immune system and I've just not been able to fight it off. The relevant antibodies can only be found through a cPass test which, apparently, literally nowhere in the UK offers (?!), but a booster would no doubt do me wonders at the minute, and could potentially be what I need to make Tollovid work again. Sadly as I'm under 50 and not immunocompromised, I'm in the section of society just expected to suck Covid up with no immunity this winter. Even better would be Evusheld, but the government have refused to buy the fucking stuff.

[Blue Jam]

Wouldn't want to try anything made from Natto *boke*. Thanks for the review of the Phyto-V though. I've just been taking something called Nature's Aid Organics which is just a load of concentrated plant extracts and which cost about a tenner for 60 capsules. The plant extracts include wheatgrass but it doesn't seem to be playing havoc with my gluten intolerance, could be that the amount is too small or the digestive enzymes also in the formula may be nuking any gluten in there. Meh, maybe a bog-standard supplement is as good as Phyto-V.

Been back on the vitamin D now the nights are drawing in too.

All the best to you, @purlieu and @ZoyzaSorris and all you other long-haulers x

[purlieu]

Had my first long Covid clinic phone appointment today, which was typically a waste of time. A lot of it was her telling me stuff I already knew, which, fair enough, would be useful to anyone who hasn't spent a lot of time looking at stuff online and hasn't got a girlfriend with ME. Then she started on about psychological blocks and deconditioning and the other gaslighty shit that people with ME have had to put up with for decades now. She also told me I'll be better in six to 12 months, which I think is a pretty fucking bold claim. She was also peddling some "it happened for a reason" type shit to try and help me come to terms with the unfairness of it all which made me angry. She was also suggesting going to coffee mornings to meet people to stop me feeling lonely, despite the fact that I'd already mentioned a walk round the block is enough to wipe me out.

They're giving me some more breath tests to see if my current asthma meds are the most suitable, so that's something, and most importantly I'm now on the system, so if I haven't found a way to get better by the time proper treatment comes around, I'll at least be on the waiting list.