To be hopeful that Covid research will benefit me

[purplebatbear]

Ok. I'm asking because I feel that I was spoken to quite harshly and unfairly today.

We were discussing Covid at work and mentioning people we have in our families who has been ill/died from this horrible illness. I have had not nice experiences throughout all this as have some others.

I also talked about of my family members has long Covid and is part of a study to look at the long lasting symptoms and how they can be alleviated. One of the doctors had discussed the links/similarities to chronic illnesses like ME and fibromyalgia.

Now, I have fibro, so I said to my colleagues that it could also potentially be beneficial to people like me as this focused research could end up helping us to understand chronic, long term fatigue and pain.

Well. I got a right mouthful from this woman. How I was so selfish to compare a chronic illness to long Covid.... How I was selfish to think about any potential benefits for me or other suffers.

Was I wrong? I don't feel I was I tried to explain that any research has knock on positive effects for people outside of a key focus group but she was having none of it...

She’s wrong. Ignore her.

Well. I got a right mouthful from this woman. How I was so selfish to compare a chronic illness to long Covid.... How I was selfish to think about any potential benefits for me or other suffers.

That is so typical of some British women sadly. Waiting to see if you're going to show a perceived vulnerability or complaint, and then... pounce! How dare you. So selfish etc.

It's like they don't want anyone else to get more attention than them, so whatever can be said to reduce them down a bit and get a kicking etc... sorry to hear that OP.

I don't think you are wrong to think like this. Long Covid means more interest in POTs symptoms which will benefit people who already have pots and there's nothing wrong with that

To some people nothing except Covid matters. It's the only cause of death, upset,trauma etc and the worst illness you could ever have.

Ignore the bullshit.

Btw, I do hope things improve for you and any other chronic illness sufferers as a result of this.

Well how ridiculous.

What does she think long covid is if it isn't long term, causing fatigue and pain.

Of course it should benefit everyone who suffers from a similar condition. It's long overdue for research

Oh! Thank you everyone! I was questioning myself and ended feeling like I had to almost justify my thought process, which just seems really screwed up and wrong now I've got home and thought about it.

Chronic illnesses are awful and I would never wish the pain/tiredness/exhaustion/issues that I deal with every day on anyone. It's horrible and it utterly messes up your life.

So to hear that the findings of a study could potentially help people like me sounds great. There's hardly any money been put into fibro research but long Covid studies are getting (quite rightly) a good amount of funding, so I'm hoping that this can only be a positive.

She was so nasty and really rude and made me feel like I was absolute bitch for even once considering it.

I've had similar thoughts to you. I've had CFS for 21 years. When I first heard of long Covid I thought it sounded like CFS with respiratory issues and wondered if anything might change for those of us with CFS.

Decent funding for research would be a good start, and hopefully some new treatments.

If nothing else I hope that people gain a better understanding of how much CFS can change someone's life and the impact it has on the ill person's life and those around them. Perhaps people might have a more empathetic approach instead of writing us off as lazy hypochondriac malingerers.

YANBU.

God I hope you told her to fuck right off - and I say this as a long COVID sufferer. I have no idea whether research into long COVID will shed any light on ME (or even if there will be much research on long COVID once this crisis is over) but wouldnt it be wonderful if it did? And of course you should hope - it's not like ME sufferers havent had the shitty end of the stick for a long time now.

The whole being thought of as a lazy malingerer who cba doing things has plagued me for years now.

I've lost friends as they just can't understand that I cannot necessarily do things at the last minute or do very strenuous things.

I've had people be awful to me for being part-time (but if I work full-time, I'm so exhausted or have huge pain flare-ups which mean I can't be a good Mum)

I've had DH making nasty comments as I 'sit on my arse' when I get home from work for a while. I have to. I'm exhausted beyond the point of being able to function and need hang an hour to recharge.

So, yes. I'm hoping so so much that this new research h unlocks something for us all. It probably won't... but it might. And that would be amazing...

Oh. And the hypochondriac thing. God I want to hit people who say that (or who are clearly thinking it).

I'd rather be in less pain, being more alert and live my life, thanks!!!! Def not imagining it (and my consultants can back that up!!!)

People are so bloody rude!!!