Shielding

[Mango07]

Why are we not on the list from shielding? From the Government? When we have flare ups I can’t move my fatigue is awful. To us having flu is dangerous! Can’t imagine what covid could to to us??Still not on the shield list??

[Painny]

You hit the nail Mango, had they put me in the shielding category I would have been careful. The lack of it led to chest infection first and then severe Covid. I think FMA U.K. should petition for it. We are a forgotten group of people! 🥀🎄

[desquinn Partner Volunteer FMAUK Trustee]

First of all what is the shielding list for?

It is for those that if they caught covid they would be at more risk of death. Where as we would not enjoy having covid people with fibro are not at greater risk of catching it or dying from it.

At present, people personally shielding or practicing extreme or normal social distancing are doing the best they can to avoid catching it. That's the best approach.

[LisaSnow FMA UK Volunteer]

What is shielding category?

[Carlt]

Why rely on government guidance?Because of my heart issues I have behaved as if I am on my own personal shielding list (not always voluntarily either).

I don't need an incompetent government to tell me whether I'm vulnerable or not.

Lockdown and tiers haven't affected my behaviour at all...

I've been socially isolating since February and will continue to do so until there is an effective vaccine generally available.

I have enough health issues without going to tesco to find another.

[Hidden in reply to Carlt]

Sensible. No point in waiting for the government to tell us what to do. There’s plenty of reliable medical information online and we all know our conditions and our own bodies better than anyone. I don’t know how the need to shield affects employment, pay and the ability to claim benefits and this might cause problems for some but I think everyone needs to make their own decision about how much contact they have with others.

[rocklady73 in reply to Carlt]

my husband and I both are doing our own shielding. I have fibro and he has had 3 strokes

[Mango07 in reply to Carlt]

But I work and if I self shield myself I don’t get paid ??

[Carlt in reply to Mango07]

I'm self employed and didn't qualify for the self employed furlough scheme. I have effectively chosen to go bust rather than risk not seeing my kids grow up.

Hopefully I will be able to kick-start my business after this is all over.

There is no reason for fibro sufferers to be on the shielding list because we are no more at risk from covid than folk who don't have it.

Had I not had my heart issues then I would still be working... I certainly wouldn't have shielded and closed my business because of fibro.

[Hidden]

Hi Mango07,I'm not sure where you got your information from, but flu is no more dangerous for us than someone without fibromyalgia, unless you have other health conditions that might make you more susceptible. Fibromyalgia is not an autoimmune condition on its own, it is a muscular skeletal condition.

[Midori]

Totally agree!

[Chloe_x]

I totally agree. Though shielding is for those who if they caught covid they would be at a higher risk of dying, I think we should still be on the list. I can't prove it was because of fibro, but when I got covid I had it far far worse than any of the people I live with, and now I have long covid. I might not be dead, but I do wish I was sometimes; fibro fatigue combined with long covid means I'm only conscious for a few hours a day now. Frankly what I've got is a poor excuse of a life at the moment. I've never known anything like it. Covid didn't kill me, but given how strongly its affected me I'd argue that it should have warranted additional protection.

Also, although we can alter our behaviour without the guidance, being on the shielding list would have legitimised isolating for me. I wouldn't have had to move into uni accommodation, and I wouldn't have gotten covid.

All of this is such a mess; I don't really blame anyone for it, because covid is so unprecedented. But still, if I had been put on a shielding list my life would likely be vastly different

[Camille1]

Hi, having flu isn't any more dangerous to us with fibro than it would be for anyone else. Fibro also doesn't put us at a higher risk of complications from Covid-19. I work in clinical research in the NHS and see covid patients every day, studying them, their co-mobidities and symptoms etc. The people most at risk are those who are immuno-compromised, heart problems, diabetic, COPD and the frail elderly.

[Mango07]

Not saying we would die from it, our bodies would ?

[desquinn Partner Volunteer FMAUK Trustee in reply to Mango07]

Not sure what distinction you are making