How many Long Covid disabled are acceptable?

[Whyhunters]

I don’t understand the lack of outrage or action.

The ONS mention numbers like 6-800,000 people with LC …

Will it take someone very famous or close to govt like Carrie getting LONG COVID for the government to start treating long Covid disability with the seriousness it deserves?

Maybe if she is too ill, breathless, fatigued and in pain to do her normal day to day activities… maybe if she is unable to…

• meet and greet VIPs
• shag Boris
• look after her child
• go to work
• socialise with her friends
• cook Boris’ venison dinners
• attend appointments
• deal with loud noises and stress
• stay awake

Bearing in mind she might not improve for a couple of years (ever?) Will she have to wait many many months to access any support? Meantime she is running out of cash, her friends are fed up with her being tired and her kids aren’t seeing anyone either because she’s too sick to take them out?

Will we THEN reintroduce masks and social distancing?

Or do we have to wait for one of Boris’ children to get Long Covid before appropriate action is taken?

Before companies try to force sick people back to work? Sack them for being too ill to work?

Will Carrie have to try to claim PIP I wonder?

Do others feel this needs more consideration or are you just relieved this isn’t happening to you or your family?

I don't believe anyone was comparing Long Covid with terminal illness @Blueeyedgirl21 and I’m extremely sorry if that’s your experience. And I agree that other chronic illnesses have been woefully neglected. I’m hoping that along with many other people that other invisible illnesses including post viral illness will receive more funding treatment and support with the spotlight that’s been thrust into sudden disability by Long Covid. But…

Do we have the opportunity of reducing numbers of those with disabilities from RA? Honestly? I don’t know.

Perhaps it would be an idea to list numbers of people with each disease with an index of disability next to it?

My point is that government CAN actually prevent more Long Covid cases by taking preventative measures more seriously… masks in schools, distancing, working from home, reducing contacts, etc

They’re ignoring the escalating numbers of people with LC. Fewer infections mean less LC.

If I appear frustrated by being housebound and a non-parent to my children, it’s because I am. My entire family is.

One day you’re balancing work / family / exercise / hobbies, mobility and mates and the next you are robbed of virtually all of it.

This isn’t about pity though - I just want people and politicians to take preventative measures more seriously. Yes and for equal and speedy access across the UK to LC doctors and teams.

If not now - in a year when there are another say quarter of a million people with Long Covid?

This affects us as women MORE. Firstly because as a group women of childbearing age and above are more likely to develop LC - and because as Mums the majority of the caring falls to US.

If your child gets Long Covid and can’t go to school - who is staying home and looking after them? Driving them to places they may have previously travelled to independently? Bet your bottom dollar it will be us Mums.

Why would the government care? There are other viral diseases that’s been here for ages and they don’t care about that - why would they care for covid?

I had labyrinthitis which made me ill (think dizziness, tinnitus, fatigue, brain fog, upset stomach and in extreme cases, vomiting) for six/seven months and I had to unfortunately still work.

If Carrie got sick, he'd simply leave her for a mistress, that's what he did to his previous wife when she was suffering cervical cancer.

All his appliances must maintain functionality or they are disposed of.

Didn't Hancocks wife have long covid.

@fleecedog

Ticking time-bomb. Collins dictionary:

Definition: If you describe something as a time bomb, you mean that it is likely to have a serious effect on a person or situation at a later date, especially if you think it will cause a lot of damage.

Please explain how the destruction people with Long Covid is not a lot of damage? Is not a serious effect?

Or how it is silly or lacking sense? (The very definition of inane)

I’m all ears?

I’m sure you enjoy abusing vulnerable people so do carry on.

The facts are that we have 6-800,000 people with LC (figs from the ONS) now - we may have hundreds of thousands more in the next year or so.

For everyone who thinks this won’t affect them - if you use or work in the NHS then it undoubtedly will.

I’ve previously explained how measures could help. Work from home where possible, masks in schools, vaccines, reducing contact.

And government getting appropriate advice to people as soon as possible to prevent those who are just realising they have Long Covid from getting worse.

There needs to be widespread advice, a campaign about what post exertional malaise looks like. Before you go and play a game of rugby or similar and never recover. It shouldn’t really be up to me. There are experts on post viral illness out there and the gov isn’t listening to them…

@Hellokittyninja

Have you written to your MP explaining how the cost of biologic now will actually work against the longterm offset against your deterioration?

It may be worth getting in touch with this organisation: they will probably take on your case.
nras.org.uk/

@Ponoka7

Well they've never cared about post viral chronic fatigue sufferers, so why should they about long Covid? At least it's getting a special title and isn't just being grouped in with CF.

Exactly.

Long covid is just post viral chronic fatigue syndrome dressed up with a fancy new title.

I bet you didn't care about post viral CFS before covid. So why do you care about it just because its got a new name?

@PastMyBestBeforeDate

Ah I think you've started from a false premise. There are no shits given about disabled people. Why would disabled through covid be different?

This is, depressingly, far too accurate.

YA-also-BU for thinking Boris gives a flying fuck about any of the women in his life, or his offspring. It will make absolutely no difference to his handling of the situation, because he is a heartless bastard with no regard for anyone but himself.

I understand you OP, but realistically if your expecting swift action and concern about long covid your onto a loser. I have hashiomotos, and my mum has several autoimmune conditions that are extremely disabling. The NHS does the bare minimum for chronic conditions, in part due up long term underfunding, and the government never address the fact that with better treatment vast swathes of people would be happier more productive members of society. If you managing just about to drag yourself through life with a disability, no one really cares.

The only thing you can do is not vote the conservatives in again.

@PastMyBestBeforeDate

Ah I think you've started from a false premise. There are no shits given about disabled people. Why would disabled through covid be different?

Yup.

OP, what you are experiencing sounds awful. But, be honest, how much of a shit did you acutally give about post viral CFS before you experienced it yourself?
Also the figure you are quoting of "6-800,000 people with LC" are hugely varying in symptoms and how it is disrupting day to day activities for people. Alongside the fact that most of the "long covid" sufferers are self diagnosing so the numbers could in fact be lower.

There is nothing the government will do. As PPs have stated the government prefer not to acknowledge people with disabilities and their needs until election time when they need to look like they give a shite. And even then it is usually about how they are trying to catch people fraudulently claiming PIP/DLA benefits rather than helping those that actually need them.

@Ponoka7

Well they've never cared about post viral chronic fatigue sufferers, so why should they about long Covid? At least it's getting a special title and isn't just being grouped in with CF.

This. No one has ever given a shit about post viral syndrome until now when it's rebranded as long covid. I suffered post viral syndrome for nearly 3 years after swine flu as did other people I have since spoken to about it. Theres no outrage for us. It's shit but that's the nature of viruses. The government don't treat other disabled people well so why should people who are disabled (and many with long covid won't be permanently disabled) be treated any different?

I’m not sure agree it would be good to see the numbers?

I know in the past I caught a virus & it took over a year to be fully well (I was only 26 at the time and healthy) it was just sadly one of those things being human & bugs around us all the time.

Come on, if Carrie caught long covid or was in no way useful to Boris anymore, he will find some other daft woman to cheat on her with and then impregnate the new one. He won't care about her or change anything.

@PastMyBestBeforeDate

Ah I think you've started from a false premise. There are no shits given about disabled people. Why would disabled through covid be different?

Absolutely correct. It doesn't matter what you're disabled with; the Tories hate you, and will not support.

I have a family member with brain damage/a Learning Disability FROM BIRTH, which she has to go through the medical, paperwork, etc. for, every few years. Despite not being able to read, write (oh, and no help with completing the forms - 'good family support' does it; i.e. me), see properly, have any real emotional reasoning or understanding, she's not disabled enough to receive any benefits whatsoever. (Used to be, but with PIP, that changed. Been to appeal, and tribunal with it.)

It's disgusting that this type of thing is allowed.

It didn’t work out for Matt Hancock’s wife did it?

@PastMyBestBeforeDate

Ah I think you've started from a false premise. There are no shits given about disabled people. Why would disabled through covid be different?

This.

Sadly there are many, many people with all sorts of health conditions causing long term issues. If you have a hidden disability such as fibromyalgia, various auto immune conditions the nhs wash their hands of you, no support, no treatment, get turned down for a blue badge, have to fight for PIP and many get turned down for it. Long covid will be the same….politicians will make the right noises in public but fuck all support will be given. They won’t give a shit.

Doesn't ling Covid usually last 6-8 weeks? Think you are being a bit melodramatic.

Op why post a thread like this on MN. There'll be no sympathy on here. Typical 'why should l-c sufferers get anything when people with CFS or MS don't...' Blah blah blah Divide and rule as usual.
@tttigress long covid lasts way longer than that. I have had it for 9 months, many over a year. So don't comment if you don't know what you are talking about.

@einekleinenachtarbeit

Op why post a thread like this on MN. There'll be no sympathy on here. Typical 'why should l-c sufferers get anything when people with CFS or MS don't...' Blah blah blah Divide and rule as usual. *@tttigress* long covid lasts way longer than that. I have had it for 9 months, many over a year. So don't comment if you don't know what you are talking about.

I’m certainly not being unsympathetic. I’d say I’m being realistic. I’d love for long covid sufferers to get support. Sadly I can’t see it happening which I think is disgusting.

Long covid is just post viral chronic fatigue syndrome dressed up with a fancy new title.

Ah now here's the thing....it really isn't.

LC is about far more than just fatigue. It includes (but is not limited to)

Brain fog,
Insomnia
Neurological symptoms such as tremors, tinnitus, tingling, numbness, internal vibrations
Hair loss
Palpitations
Blurred vision
Loss of hearing
Organ damage
Shortness of breath
Nausea, vomiting

I could go on. It seems to affect every single organ and system in the body particularly the ANS. Even my GP said it was the weirdest virus she had ever come across in her medical career.

@tttigress

Doesn't ling Covid usually last 6-8 weeks? Think you are being a bit melodramatic.

If only.... tomorrow will be my 19th month anniversary of this fucking illness.

Micro clots have been discovered in the organs and circulation of patients with long covid which backs up the idea that it's a vascular disease than purely respiratory. Also many suffers respond to anti histamines which suggests some issues are due to some kind of cytokine release/ inflammatory process.

@Norugratsatall sorry to hear that. Take care

One day you’re balancing work / family / exercise / hobbies, mobility and mates and the next you are robbed of virtually all of it.

This was me in 1995/6 - CFS/ME hit me hard

I've been ill one way or another ever since & now I have covid

I am so hopeful of some research coming out of this as the typical reaction for 25 year has been "shrug, oh dear, I think you'll have to adapt/live with it"....which is marginally better than graduated exercise and CBT

FFS