To wonder why the fuck long covid isn’t considered a serious outcome

[Clutchingatfog]

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

You have been the opposite of polite. You have been utterly patronising and insulting to troll sick people by suggesting that they are imagining their illness. Despite it being pointed out that you can’t cure CF with a positive mental attitude, and you’ll make it worse by pushing yourself, you’ve completely ignored the scientific evidence and continue to think you know best.

”Give it a try…”? Sweetheart, I’ve had ME for thirty years. Do you think I haven’t ‘tried’ pushing myself? We all have. Repeatedly. It makes us worse! I don’t know how many times we have to explain PEM before the penny drops with you? Or that other physical conditions don’t involve PEM so their recovery will be completely different to those with LC/ME/CFS.

I am the most positive person you will ever meet. I know that I will never fully recover but I’m happy, motivated and very contented with the life I’ve been given. I have surrendered to complete acceptance of this condition and my life is so much better for it. I have peace. It took me many miserable years of resistance and ‘pushing’ to get here. I’m done pushing.

Another response conveniently ignoring the people with actual lived experience.
Also ignoring the many medical specialists and experts on the subject.
If you tried to discuss any other disability topic with medical advice based in feelings, opinions and the experience of Barry from down the road who got better by doing yoga, going Vegan and eating scented candles, you’d have similar responses.

You may think you’ve come across as a polite saviour trying to open our eyes but to people with actual disabilities you come across as someone desperately trying to hold on to an opinion without any basis in fact.

Your advice is as useful as telling someone to run around their garden, flapping their arms to learn to fly. Worth a try. This may come as a shock but some things are medically impossible for some people.

It is completely fine to not understand, ask questions and read up on a subject. It is absolutely not OK to try to give harmful advice that contravenes all evidence based research and treatment guidance.

Look for a somatic therapist.

If you reread mine you'll see I have been polite and constructive for the most part. But you've just continued to repeat yourself and imply that those who are struggling are 'stagnating' and that all that's needed is 'motivation and positivity' (and, in the email I've just quoted, imply that others simply don't 'try'). Can you really not see why people are beginning to feel frustrated, not to mention insulted? You're not showing much, if any, openness to what people are telling you: other people have experienced illness differently from you and the methods that have worked for you do not work for them.

And yes, I'll hold my hand up, sneering and mockery is taking the low road, but personally you've exhausted my patience. I accept you've been very ill and are speaking from your own experience of that, but you aren't showing any openness to the fact that different people have varying experiences and one size does not fit all. That's why some of us are losing patience.

I'm going to ask you a direct question, obviously you're not obliged to answer but at this point I am genuinely curious. Do you actually consider that those who can't resolve their health issues by the means you are advocating are simply not trying hard enough/not motivated enough/too negative/happy to stagnate? Because that's what's coming across from your posts. Feel free to contradict me if that's not your opinion.

What you keep sayings isn't the truth though. That's the issue. It's an ill-informed opinion. And whether you've been ill or not is irrelevant.

Pushing through can make the conditions we're talking about much worse. That's not opinion, it's fact. As I've said, my DC sees an expert in MCAS caused by covid. He sees patients from all over the world with post viral issues. He's very clear that graded exercise is the only way things may get better (though of course improvement isn't guaranteed). When someone's really unwell, then no exercise - exercise can cause a dysautonomic reaction.

By reiterating to people that they should be pushing through, you're putting all the responsibility on them, when their body is failing them. Any recovery isn't like routine recovery from surgery where improvement is usually linear and complete (but not always of course).

I'm really not sure why you keep banging on with such a fixed opinion and not listening.

Now you really are showing your ignorance.

Every single process in your body needs energy, even those controlled by the autonomic nervous system. Just because your heart beat is automatic doesn't mean it doesn't cost your body energy.

If you have a condition where your mitochondria don't work properly or have been damaged, you can't access energy in the same way and this affects all body processes.

Please for the love of God stop expecting that everyone should take your really unscientific damaging advice, based on your own anecdata, sample size of one.

Now you really are showing your ignorance.

Every single process in your body needs energy, even those controlled by the autonomic nervous system. Just because your heart beat is automatic doesn't mean it doesn't cost your body energy.

If you have a condition where your mitochondria don't work properly or have been damaged, you can't access energy in the same way and this affects all body processes.

Please for the love of God stop expecting that everyone should take your really unscientific damaging advice, based on your own anecdata, sample size of one.

Look here's an idea stop quoting me. I keep 'banging on' because ive had constant questions/sneers. So just ignore me would be my tip, probably as unwelcome as other advice I've shared.

'He's very clear that graded exercise is the only way things may get better' which is pretty much what I said. I'm not advocating marathons or gym sessions just a plan with some goals no matter how small. A pp said she can't go out as she can't shower every day so I suggested that is fine, shower whenever able. No need to put unnecessary restrictions on yourself.

I get it I really do, illnesses particularly chronic or post viral are challenging, depressing, cause anger and frustration. Other people sharing their experiences and advice should not be met with such ott vitriol.

You've faced no vitriol at all.

You've advocated pushing yourself, that isn't graded exercise, not sure why you think it is. I'd like to think that those of us on this thread who know how it takes us have been kind and supportive to each other.

Other people sharing their experiences and advice should not be met with such ott vitriol.

But @Gloriia your experience is worth nothing in our cases, because you’ve never had our condition. It’s like telling someone who is paralysed from the waist down that they just need to try doing some squats to strengthen their legs because that worked for you.

Completely agree. There are loads of people on this thread who don't keep up with research or are living in absolute denial like most of the population.

Your chances of LC increase with every infection and yet people are burying their head in the sand. We need air filtering in hospitals, schools, pharmacies, etc and we need it now.

A lot of viruses can cause post-viral issues, yes, but covid is more infectious and circulates year-round, not following seasonal patterns like colds and flu. And covid is worse than flu for outcomes on nearly every measure; they're not the same. We get it far more often than we get flu, and covid vaccine eligibility is now massively restricted. Make that make sense.

I have it. My two kids have it worse from infections last year. One can’t walk and the other has extreme fatigue. Hundreds of other more minor symptoms stemming from autonomic dysfunction. Neither well enough for school. They are 14 and 11. Before they became ill they were insanely high achieving at school, sociable, extraordinarily sporty… we no longer think about our old lives because it’s pointless. Long Covid - it’s really no joke and everyone is pretending it can’t happen to them. I promise, if it can happen to my very normal, even super normal family, it can happen to anyone. It’s a multi systemic, vascular, neurological chronic disease. Not just feeling a bit tired. Feeling unable to function, poisoned, unable to walk, dizzy, headaches, rashes, cognitive issues… and it’s slightly different for everyone who gets it

This thread is making me so angry. How many more lives will be ruined before things change.

Im so sorry for you and your children x

I think posters assume everyone knows someone. I’ve met one person with long covid. It was not what’s being described on here to be fair.

Lord above.

So now we're objecting to your posts because our conditions are making us depressed, angry and frustrated?! shakes head in disbelief

Incidentally, it's normal for people to quote (how else does anyone know who's talking to whom?), and ask questions of, others they are engaging with on a thread. When you choose to post on a thread you're kind of putting your opinion out there for debate and potential disagreement. If it's bothering you, the choice to post or not post is entirely yours. I do find it interesting that you've opted not to answer my question, though.

Its a discussion forum.

if you don't want to reply to people quoting you, it's not compulsory.

I don't know why you'd bother engaging though if you don't actually want people to have dialogue with you, just absorb your superior views.

I've seen no vitriol on here, just frustrated sick people who are frustrated that their experiences are being dismissed and that they are being told they should just try a bit harder. Multiple times.

Interestingly, the term 'graded exercise' seems to be being used to mean different, kind of opposite thingson this thread, which could be confusing.

I've seen it more usually meaning a programme of exercise which gets more challenging over time, regardless of symptoms. This is what experts are warning against with LC/ME/CFS. The 'pushing yourself no matter how you feel' approach. Listening to your body and gradually increasing only if your symptoms remain stable is not what is usually meant by graded exercise (GAT). Im not trying to 'gatekeep' terminology but I think this could get confusing for people about what is/ isn't recommended.

A specialist physio i saw privately said your body doesn't know whether you're going for a run or making dinner or showering etc. if you've raised your heart rate your body is under the same kind of stress whether it's doing 'Exercise' or not.

I think this is what some people just don't get. They don't see how something like taking a shower could possibly be challenging and require a lie down after.

If you have autonomic dysfunction and it makes your HR go crazy, that's how.

That's interesting to read. I'd never thought of it that way before.

🤨I know of at least 4 people who have had it very badly. And my social circle is quite small.

Next door but one age 40 male. Sick for 18 months. Still can’t watch tv or do anything strenuous.
Bil boss. Sick for 2 years. Off work for that time.
Dh colleague 17 year old dd. Severe POTS following covid. Exhausted all the time. Sick for 16 months
Sil teaching colleague. Has had to resign after 15 months of LC.

My social circle is big. Literally 1 person.

I’ve not done the level of research that many others have done on this thread and am still not convinced I have long covid but for me it’s the unpredictably of it all and feeling that your battery has just run out for whatever reason
On more than one occasion I’ve had to ring one of my adult DC to come and rescue me when I just can’t move any further! Can you imagine walking into a shop and then feeling so exhausted that you have to sit down (even on the floor) and not be able to get up - the shop is closing in 30 minutes and you start to panic s have to ask for help just to get out of the door and stumble to your car - that’s how bad it is
I have lovely colleagues at work who are not fazed if I ring them from the office car park to ask for help to get out of my car or carry my handbag, lunch etc as I’ve just dropped and can’t do any of that

I agree wirh you OP. I've had LC for 6 months- it's horrible. I don't think you can understand until you've had it yourself or know someone with it. The fatigue is crushing and it's ruined my mental and physical health/career and finances. It's shit.

YANBU
I have ME/CFS after a virus I had before covid hit. Having covid made my symptoms worse.
I stand with people with long covid and it should be seen as a serious outcome. We need public health action and education for people so that they understand the issues and how to prevent infections too.
In the meantime though the government are also further restricting vaccine access to people who are clinically vulnerable
We need to push back and get vaccine access restored to what it was last autumn and then build on that to get vaccines available to anyone who wants one. As well as clean air in public spaces and sick pay for those who are positive. And masks when appropriate (eg in times of high transmission, for people with symptoms, as a reasonable adjustment etc).
But first of all, please sign the petition and if you can, write to your MP too
https://petition.parliament.uk/petitions/733157?fbclid=IwdGRjcAMv5p1jbGNrAy_mmGV4dG4DYWVtAjExAAEeqESYJ2eoQ8P-hsM_iYZ14Cc500cgkebNjkK-mz3Hah3wYLq5Xkuy9zggbbk_aem_TuQdM7GKlMjVFIEYAkTPdg

Hear hear

Could not agree more. I've had Long Covid for over a year. I can only manage to work part time and apart from making meals and loading dishwasher, I am too exhausted to do anything else. Struggling financially. I have no energy and no life. But no vaccinations and no mitigations, even in hospital. The rise in people less economically active - Long Covid. It's madness.