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.

My class of 3-5 year olds had a terrible outbreak last year. 2 children were hospitalised for complications, one of them twice! It makes me so angry to hear people say covid doesn’t affect children or children can’t spread it. It can and they do! Both of these children were completely healthy beforehand, not asthmatic or anything.

Fatigue is not the same as being tired. Please do not try to equate them. Do some research to at least understand the difference.
By the way, I have a long standing degenerative condition. Many years prior to disease onset I led a very hectic, fulfilled life. I was really tired at times. Only once I was diagnosed did I comprehend what fatigue was. I can only describe it as the plug being pulled. A total inability to function. A body shutdown. Physically and cognitively. Fatigue has been the most debilitating aspect of my condition. I had to quit my career, my physical lifelong hobby. Relationships failed. My life has been adversely affected by fatigue far more than physical disability. Fatigue is not the same as being tired!

I contracted TB from a service user. Believe me, I know what fatigue is.

And this is why people wain with sympathy. I don't wish to be hard but it comes across as all very "me me me and my fatigue is worse than yours and you don't understand "

COVID itself is now considered by many as non-dangerous now, but it isn’t always.
There was a COVID outbreak at work, and someone came into the office with it.
I was astonished that anyone would think that was ok to do, but when discussing this with friends, one informed me that even in the NHS, on the Cancer ward she works on, if workers test positive but aren’t too unwell to work, they have to go in…
Surely that’s dangerous?

How rotten for you. But I think you are projecting. You are the one who came on a thread about long COVID and insisted it wasn't all that bad /you have had it worse.

Did you know that before the cause for TB was discovered it too was seen by many as psychological in origin/associated with character defects /being a bit of a wet blanket (and all the other slurs we 've seen on this thread). Really makes you think....

None of us can speak for other people but it's a chat forum, we share our experiences that is how it goes.

Viruses are of course very unpleasant, many illnesses are but stagnating is never the way forward so if the norm is to walk to the garden then tomorrow plan to walk down the drive next day down the street, then the shop. It's only by pushing ourselves that progress is made.

Fatigue affects every single person to a greater or lesser degree. One thing that always helps is physical activity then rest.

As I said earlier I'd encourage every woman to read up on peri and the menopause as there will definitely be an overlap in what is going on post viral re joint pain, sleep issues and lack of energy.

But with respect, you don’t understand. I had sepsis and almost died. Even in ITU I felt dreadful but no more dreadful than i usually feel, and I was literally close to death. I was on antibiotics for months and months afterwards but again, it was my default state. Other sepsis sufferers report feeling crappy for six months but i didn’t notice any difference.

There is a world of difference between having fatigue from a treatable condition like TB or sepsis which gradually improves and you know there’s an end in sight, and chronic fatigue which is potentially forever, has no cure, and no amount of healthy eating or going for walks will make better.

There was a study which showed that there is almost no physical illness that has worse quality of life than ME/CFS. The pain and tiredness are worse than any other condition (including stage four cancer) except for people who are dying of full-blown AIDS. However, we do score higher on mental health than people with depression.

And yet we are treated appallingly by people with attitudes like yours - telling us that we’re lazy and depressed, ignoring all the evidence to the contrary. Haven’t you got a cancer sufferer that you can go and beat up and tell them that they’re imaging it, or that they can eat or exercise their way out of it, because you’re getting right on my nerves now.

Hope you show more empathy for people that you provide a service for.

Would you be more tolerant of someone with Parkinson’s/MND/MS? As pointed out above, you have experienced transient fatigue from a treatable disease. There is no respite for those with progressive degenerative diseases, however desperate they are and however much they try to get out, eat well, exercise if they are able.

You are giving advice to ME/CFS/LC patients to push themselves physically quite fast. What expertise do you have in the area of post-viral fatigue to be giving this advice?

Who is Suzanne Davies? I'd suggest she's very wrong on this.

I think the issue is that patients have being undiagnosed, misdiagnosed and ignored. It's going to take years for the long term effects too become clear.

Just one example. One of my DC was diagnosed with a serious (as in life threatening) neurological disorder several years ago. Despite being diagnosed, and treated, by consultant neurologists at a London teaching hospital, they got it wrong. When the 'treatment', which included invasive procedures, didn't work, no-one knew what to do, even after an extended stay in hospital and many more tests.

Except a recent second opinion suggested something completely different. Following tests at a privates specialist centre, it turns out to be MCAS, undoubtedly caused by covid. With the right (private) treatment, life is so much better.

Interestingly the neurologist says he's now seeing many patients with symptoms that at first glance look like what he thought my DC had, but they don't fit exactly, just as my DC didn't. I think there are many people suffering, being told it's 'psychosomatic' (that's incredibly insulting from Suzanne Davies whoever she is) who actually have been poorly diagnosed or remain undiagnosed.

I thought this too.
Who even is the woman?

And she’s wrong.

She’s a pyschologist. So invested in the psychological theory.

I think it’s a combination of things. 1) We don’t generally treat the chronically ill very well in our medical system (or schools, employment or society generally). There is little understanding of how chronic conditions affect people’s lives - people who aren’t chronically ill think you can just eat healthily/take care of yourself/mindfullness yourself out of it. There is a strange level of denial regarding chronic illnesses. We are British so there is a bit of a ‘don’t moan/stiff upper lip’ thing going on too. 2) Covid isn’t the only virus that causes long term fatigue and issues - post viral syndromes have always been around so there is a feeling that they can’t really be prevented anyway, even if we protected against Covid. 3) some people just don’t believe in long Covid. I think that my be due to the lack of public health info or serious media discussion of it.

Your ignorance is laughable.

Will you stop with the 'you need to push yourself'?!

That is called graded exercise and is recognised to be inappropriate and dangerous for LC/ME.

It works perfectly well for most other conditions, but they are different.

People with ME who push themselves can be permanently damaged and end up bed bound for life.

You're like a stuck record. Are you listening to anyone here at all?

I'm already on HRT in case the fatigue was down to peri. It wasn't.

The people here are not self diagnosed.

I'm guessing you've not heard of graded exercise? Pushing yourself can set patients back and can actually be dangerous for some patients.

As for:

As I said earlier I'd encourage every woman to read up on peri and the menopause as there will definitely be an overlap in what is going on post viral re joint pain, sleep issues and lack of energy.

What about younger and older women? What about men? Of course there won't 'definitely' be an overlap.

So, for years, doctors kept telling me this is what I needed to do.

Then I was finally diagnosed with Myasthenia Gravis. And the number one rule my neurologist has for me - do not push yourself. It's dangerous and harmful.

And Myasthenia presents in so many ways so similarly to the people with ME/long COVID (indeed I was misdiagnosed with ME originally) that I can be quite robust in telling you that anyone that encourages people with these conditions to push themselves is a grade A idiot

I give up. Funnily enough I think you mean well, but you’re now simply repeating yourself with v little apparent openness to what people are trying to tell you. And after what some pps have relayed about their own experiences you are now coming off as astonishingly obtuse.

As a pp said, your advice can work for people who are normally healthy, if they find themselves in a rut or only mildly afflicted with a debilitating condition. And yes, being in peri can add an extra layer of malaise. But you still don’t seem to want to acknowledge what people are telling you about the literal impossibility of the most basic tasks when certain conditions are severe enough to physically prevent movement. I’m not talking about me, so far I can battle through most days, touch wood, but I’m still capable of understanding that for others on a bad day it’s not physically possible. It’s a shame your own experiences don’t seem to have broadened your mind to what others go through.

Yeah, of the people I know with ME, I think it's reasonably unlikely any of them are going through the menopause
-.60 year old man (approx), who has had it for 2 decades now

• woman in her late 20s
• woman in her early 20s
• teenager

i think people who haven't had it or known someone they care about with it don't really believe it's a thing.

You have no idea about CFS, FM, ME, long Covid, etc do you? I’ve had CFS for 25 years. It’s shit. Just go for a longer walk each day? Really?? First, I’d need to be showered within the last 24 or so hours to feel clean enough to go out. I’m often only managing to shower every second day. Then I’d need to get out of my home clothes and into clothes suitable for exercising in public. Then put on shoes and socks. Then actually go outside. Repeat every day and go further? No.

Fatigue affects every single person to a greater or lesser degree.

Is that like everybody is a bit autistic? Because that’s bullshit too. Being tired out for an actual reason like having exercised is nothing like fatigue from CFS etc. Sometimes the effort of breathing leaves me wanting to cry.

I already have joint pain, sleep issues and a lack of energy. Had them for years. I’m perimenopausal now. So now I can attribute everything to menopause, take HRT and be cured? If that was the case I’d be on HRT in a heartbeat. HRT won’t cure me. Pregnancy didn’t cure me either.

The ignorance is breathtaking.

@FeralWomanYou describe it well. When I’m crashing my pulse drops to about 45 bmp. My body doesn’t even have the energy to beat my heart properly. Nobody other than a sufferer could understand that level of fatigue.

'First, I’d need to be showered within the last 24 or so hours to feel clean enough to go out. I’m often only managing to shower every second day'

Many people shower even less than every second day. You are putting unnecessary restrictions on yourself by using that as a reason.

I'm certainly not ignorant when it comes to a very serious diagnosis, treatment, recuperation and pushing yourself. It isn't easy, one step forward and 2 back but many people seem to label themselves post viral/long covid and do not realise that to progress you really need to set goals and get going. Walk down the drive, then the street even if you haven't had a shower, that doesn't matter.

Tbf your body doesn't have to have the energy to make your heart beat, that happens automatically regardless of your fatigue levels. Many people have a low resting heart rate so 45 may be your norm? If it isn't then ask for aa 24hr ecg to check as maybe you have an underlying medical issue.