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.

I don't have long COVID. I have Myasthenia. And for me, before I was diagnosed, people used to imply my struggles were in my head and it was disorientating (because I knew they weren't), and minimising.

Now I know the very precise physical cause I note still those same type of people really don't want to believe it and still think I could cure it with a bit of positive thinking and some quinoa.

I think some people just feel more comfortable assuming people are ill due to moral failing /weakness rather than "luck of the draw".

The fact that 200 years ago many people thought those with consumption (now known as TB) were just weak, poetic types, should give these people pause for thought. Just because you don't know /understand the precise physical cause doesn't mean there isn't one.

Yes you’re right- an important distinction is- now what? So you can think a disease is Psychosomatic and suggest exercise and quinoa- which is offensive- or your doctor could give you a course of anti depressants (some of which are used for CFs) which can help if the disease is partly or fully Psychosomatic

or, mindfulness based pain management which wasn’t a thing when I was poorly but is used quite often and apparently quite successful nowadays

But not if the disease isn't remotely psychosomatic. Antidepressants aren't going to magically fix a problem with nerve receptors. Two things help me - rest and pacing, and a drug called pyridostigmine.

I love a bit of yoga and healthy eating, but it didn't stop me getting ill and it isn't going to magically make me better

All chronic illnesses will impact you psychologically. That doesn’t make it in any way ‘psychosomatic’.

I have mindfulness therapy. I’ve also had Acceptance therapy. Both have helped me to come to terms with my illness and help me to manage it better, but it won’t cure me. It just makes us more able to live with it.

People can suggest airbrushing PEM out of the equation, but it doesn’t stop PEM. Not everyone with long covid will have PEM.

If public health airbrush long covid out of the equation, it doesn’t stop it. They can allude to it being rare, even though the very lowest estimates of long covid still put it at 40x the definition of what constitutes a rare illness. Randoms on the internet airbrush all sorts of things out of the world. Public health shouldn’t be doing the same.

And because of one person's story you think everyone who has a chronic illness is faking? Despite countless scientific studies and data that shows around 400 million people worldwide now have LC, you know better because of your brother. Unbelievable arrogance. LC has ruined my life. I can still work part time but I'm not having a nice fun time going out with friends when I'm not working, I'm basically lying down the rest of the time feeling like I'm coming down with the flu. All the time. Who would choose to live like this? I don't even get any benefits. Fuck every single person who minimises this illness.

It’s not completely inaccurate. The whole it’s all in the mind is not proven to be true but it is true that to help deal with long covid the psychology side is a big factor.

I didn’t say everyone was faking!

There's a vast difference between psychological benefits of counselling, mindfulness etc when dealing with a chronic illness and calling said illness psychosomatic. Obviously people dealing with pain, fatigue and weakness every day will suffer mentally to some extent. Having LC is tough and can cause depression. But that does not mean it's psychosomatic, any more than having cancer or Parkinsons is psychosomatic. We need to be very careful about the distinction. Treating depression as a side effect doesn't mean depression has caused it. Too many people are saying this and it's making people like me wary of even mentioning our MH to a GP for fear they'll dismiss our physical symptoms. Pain in every single muscle has been shown to have a physical cause in my case through having MRIs. Not psychosomatic in any way.

Stop diagnosing someone when you don't know their entire medical history. You are so incredibly judgmental. If this woman is anything like me, she might look fine but would have to go home and lie down for the rest of the day because she'd lifted something that was a bit too heavy for her. Just assuming she's faking because you've clearly taken a dislike to her is arrogant beyond belief. And you keep doubling down despite all of us with chronic illness explaining to you what it's like. I wonder if you've ever admitted to not knowing what you're talking about or admitted to getting something wrong? You are certainly wrong in this instance

The amount of ableism I see in this thread should be shocking. But sadly I've seen it every day for 5 years and it's not getting any better.

This is what I don’t really understand- do you think people who say it’s psychosomatic are indicating that your symptoms aren’t real?

Because with a psychosomatic condition your pain/ symptoms would be exactly the same. They are real, they are what they are.

the point being made is that the mind is extremely powerful and a mind in distress can and does cause physical symptoms. The symptoms are still terrible and lift limiting.

as I say, I had PVF. It was caused by a virus, as I remember having the virus. At the same time I was coming out of a life changing stressful event and was honestly on the brink of a breakdown. I do wonder, looking back, if they were linked.

There will undoubtedly be genetic and environmental reasons for us as a family. None of which were evident in any way before. Unfortunately though, no doctors share your curiosity (or mine). I have asked about further testing for all of the above and been met with blank stares. I was so naive to expect curiosity from doctors. I think in medicine, curiosity is confined to researchers. I would love to get us as a family in front of some and have asked some of our docs to refer us if they hear of any studies

No. People known what it means. Trust them to know their own minds though. Just because you had psychosomatic symptoms doesn't mean that long COVID and ME arent rooted in physical causes.

I still get the stupid head tilty people who think my condition (Myasthenia) is psychosomatic even though it has a very real and precisely understood physical cause. Just because you don't understand something doesn't mean it isn't real. Would you tell someone their tumour was psychosomatic? Or their fractured bone?

Psychosomatic illnesses can cause debilitating symptoms, yes, but do you really think that 400 million people have suddenly developed a new
psychosomatic illness? Studies have been carried out which show physiological changes in vascular systems, in mitochondria, and in our ability to process oxygen. If that's psychosomatic then all illnesses are psychosomatic and the word has lost its meaning.

It really would be fascinating. It’s a shame as you can’t persue it at all without a medics support, even throwing money at it wouldn’t really help. Annoying!

I’m not telling anyone anything. I’m curious about the thought process behind the horror at being thought of as a psychosomatic disease, that’s all.

yours isn’t, but I have no idea whether mine was- I don’t have access to any sort of testing (if that even exists) that would’ve confirmed either way. None of us know, do we?

It would be expected that during a pandemic a huge number of people would end up with a post viral fatigue illness, yes. So 400 million people getting it from Covid doesn’t really impact the discussion?

Again, 'psychosomatic' doesn't mean 'made up'!

I wish people wouldn't use the terms interchangeably.

The "horror" is because with the wrong understanding of the root cause comes the wrong treatment, often compounding things rather than improving them. I would have thought that was obvious.

From what I've heard, long covid is very similar in symptoms to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (my husband had this in his teens and it completely knocked him on his arse all through his schooling) and menopause. So with that said, it's probably difficult to diagnose as long covid because there is so much overlap with symptoms.

If my husband never recovered from his ME, I reckon he'd be on full PIP and other disability benefits by now and I'd probably be in receipt of some kind of carer's allowance. But thank God he was one of the few who made a full recovery.

It depends- people on mumsnet, or members of your family, are not influencing your treatment, so that’s not obvious.

its also the idea that you wouldn’t consider whether LC can be psychosomatic.

as I say, I would’ve been very pissed off had someone suggested this at the time. With recovery, I do wonder to what extent that was the case. It still doesn’t make it any less real.

I have severe LC and I’m American so I no longer have access to the vaccine, which helped make COVID infections shorter and less severe. My kids aren’t eligible either and one of them has been displaying more LC symptoms since we got Covid unvaccinated a month ago. It really breaks my heart. When I found out they were discontinuing the vaccine for the most part I called our doctors to get a booster ahead of the season, but they didn’t believe me and told me we weren’t due yet. So of course we get Covid and it’s literally hell on earth. This last infection really took it out of me, I was having seriously suicidal thoughts at one point. To top it off we’re fleeing the country and we’re so sick and exhausted (physically, emotionally and mentally) it’s hard to get out of bed, make major decisions, or finish selling our things. I’m hoping getting out of the war zone will help our spirits which will make a huge difference. I’ve given up hope on getting help medically, financially, etc. I am part of a long-term study done by scientists who also have LC which has been helpful just being connected to others. I used to think there’d be treatments available in the future but it’s easier to get through this by making peace with the reality that it’s probably not going to happen.

I think you're just been obtuse. People throughout this thread have been banging on and on about "just pushing through"/"graded exercise". It's well accepted that ME and long COVID have a physical cause so it does make me curious about the psyche of those who are so desperate to insist they dont