Double vaccinated but vulnerable. How are others feeling!

[hellyeahllama]

I'm double vaccinated but have chronic health problems ME/CFS & fibromyalgia. I have a child at secondary school.
How are other people in the same situation feeling now about restrictions stopping?
Vaccine means 9 in 10 chance of not ending up in hospital which is brilliant when you think where we were a year ago. If I were 100% healthy normally I wouldn't be worried but I'm not so I am.
I'm worried about how I will be when I get it, whether long covid could make my quality of life even worse etc, whether I will be one of the 1 in 10 who do end up in hospital.
On the other hand I so want my child's life to go back to normal.
I personally think we shouldn't drop all restrictions until the majority over age 12 are vaccinated but that's not happening so I'm trying to get my head around life being "normal".
I want to be optimistic but can't shake the doubts. I can't imagine sleepovers and having a house full of kids here again.
How do others in my situation feel??

@time4anothername

there's so many childhood illnesses that can be hard on you as an adult, not worse, when you are on immune suppressors (e.g. chicken pox), or have a body prone to not putting a quick stop to viral replication, so I don't really feel any different. I've known that I am always at more risk than average from any virus or other illness. I feel less worried about Covid now after vaccination than I do about some of the others.

At the moment I find that there are some very difficult people on public transport liking to make themselves look the big I am by not wearing masks and speaking extra loud etc, coming near you on purpose, so I hope things will calm down once there aren't so many people being a pain in the butt about the rules they don't want to follow from their place of health privilege.

Let's hope so

@DeathByWalkies

Double vaccinated and vulnerable, but not extremely so (vaccine group 6).

Very keen to get back to normal and have been since about April 2020 - my business, my income, my livelihood depends on it. Have been completely shafted by covid tbh, and unable to claim financial support.

If my landlord decides to sell up - cashing in on the stamp duty holiday induced price rises - then the chances are that I'll end up street homeless because I can't get a mortgage due to covid (mortgage lenders aren't touching self employed people like me with a bargepole) and as I own a dog there are precious few landlords willing to rent to me. The effects of street homelessness on my health will be far worse than covid ever would be.

If we're not going to get back to normal now, then when are we?

I really hope that doesn't happen to you and you can stay in your home.

@PastMyBestBeforeDate

Double jabbed but meds mean my response is blunted. Nobody knows by how much. Current research suggests less than 25% of people have an effective response from vaccination. I have 2 dc is schools. They've had all the usual childhood jabs and will have flu jabs, as will DH. So hopefully none of those will get near me if I'm careful. Covid is a huge hole in that. The Dr at the hospital suggested I stay 2m away from my dc. So not hugely confident...

It's impossible to stay 2m away from your children, I hope you stay well

CV and am easily hospitalised with other respiratory viruses. I am feeling fairly low at the moment.

@Abraxan

I have PA and take methotrexate too so I am immunocompromised. I am double vaccinated plus a month ago I still have antibodies from catching covid last October. I work in a school - primary so no SDing and no masks, etc, I almost certainly caught covid from school, most likely from a child.

Was in hospital with covid due to complications with my blood pressure, which rocketed. Now on two different meds to try to keep in under some form of control. Probably for good now.taken several months to recover from some aspects of covid, still have breathlessness and excess fatigue. Having far too many flare ups with the PA since covid too - too much pain far too often.

Despite all this I feel pretty confident. Or rather maybe I've just had enough of it all now and willing to take my chances. Don't really feel there is much choice - I'm as 'covered' as I ever will be with virus acquired and vaccine acquired antibodies,

Sounds really tough, hope you improve soon

@PicklesTheCat

CV and am easily hospitalised with other respiratory viruses. I am feeling fairly low at the moment.

Sorry to hear that, sending hugs

I feel ok about it all. Been doubled since March. Think it's about time things moved on, and any peaks to happen in the summer months rather than at flu autumn time.

All the reasoning from the Boris/valance/whitty announcements seem solid and sound to me.

We were shielding (as I'm CEV); my DH is group 8 and DC would probably be group 6 if he were 16 or over.

DH and I are double vaccinated with time to develop immunity. Our 1 big risk is DC going to school.

I am thinking that there may be movement on DC 12-15 having vaccinations before September. Until then I am hopeful that we can hang on till the end of this term.

'm so glad that all this year's school assessments have been completed now.

Double jabbed, CV, not CEV but very high risk and also in a high risk occupation.

I'm worried. Obviously the jabs have reduced the risk I'll be hospitalised, but the rising cases will soon have increased the risk by the same amount (as much more chance I'll catch it) compared to a few weeks ago.

I'm clinging on to the hope that there will be a higher % of the population jabbed by the 19th and hoping that's enough to slow the spread, combined with the school holidays.

I'm hoping most people will be kind and continue to voluntarily use face coverings.

[ quote] Vaccine means 9 in 10 chance of not ending up in hospital which is brilliant when you think where we were a year ago. If I were 100% healthy normally I wouldn't be worried but I'm not so I am.
I'm worried about how I will be when I get it, whether long covid could make my quality of life even worse etc, whether I will be one of the 1 in 10 who do end up in hospital.[/unquote]

The one in ten chance means that one in ten people in hospital with covid are double vaccinated (not that one in ten people who are double vaccinated end up in hospital). This is quite low considering that so many of the double vaccinated are older or with underlying conditions. The jabs lower the chance of catching it by quite a lot. I am still concerned because the rising cases increase the chance of catching it, but just wanted to say it does look better than a one in ten chance!

Genuine, non judgy question - why does CFS & Fibro mean the vaccine may not have worked properly? I work in a medical field & all the data we’ve seen so far that suggests a potential lower immune response is people on long term steroids & those having significant medical treatment such as chemotherapy.. I can understand being worried about catching covid with CFS but I’m surprised to hear the vaccine might not work so well 🤷🏼‍♀️

If you are worried, you can get home anti-body tests that specifically look for antibodies from the vaccine - would that put your mind at ease or help you decide how cautious you might need to be maybe?

@Bobholll I don't know about the meds for CFS or Fibro but I have a different autoimmune condition and the medication I'm on damps down my immune system to stop it attacking me.
All the antibody test kits I've seen say they shouldn't be used to see if vaccination has worked.

What will you do? Will they let you carry on at home do you think?

I'm not sure. I mean I worked mostly from home before Covid so it's only a day or two at most each week but an unnecessary risk, especially as I am a single parent to young children so I can't get so ill I can't work or look after them properly. Last year was horrific. I think I will speak to my boss and hope that they'll understand that I need to see how things play out over the winter before going back, hopefully in spring when cases of respiratory viruses usually go down. To do it in Sept is too risky given my health, I don't think I can do it.

@Oblomov21

I feel ok about it all. Been doubled since March. Think it's about time things moved on, and any peaks to happen in the summer months rather than at flu autumn time.

All the reasoning from the Boris/valance/whitty announcements seem solid and sound to me.

Agree totally at a societal level: opening up now has to take place.

I think the issue is that for individual people there may be additional risks as a result and there should be support/ dispensations for them.

@Bobholll

Genuine, non judgy question - why does CFS & Fibro mean the vaccine may not have worked properly? I work in a medical field & all the data we’ve seen so far that suggests a potential lower immune response is people on long term steroids & those having significant medical treatment such as chemotherapy.. I can understand being worried about catching covid with CFS but I’m surprised to hear the vaccine might not work so well 🤷🏼‍♀️

If you are worried, you can get home anti-body tests that specifically look for antibodies from the vaccine - would that put your mind at ease or help you decide how cautious you might need to be maybe?

If you have a look at the ME Society and other similar charities' webpages you'll find lots of research showing how 80-90% people with pre-existing CFS/ME who have got Covid have been seriously impacted by it. ME/CFS is very poorly researched because shockingly low money has been spent on this for years and astoundingly many were told it was a psychological problem and their physical symptoms didn't exist.

There is strong evidence that the condition is often triggered by a severe viral infection or traumatic incident like a road accident, causing inflammation in the body. It seems to be closely connected to the immune system because people with CFS/ME are known to be more susceptible to subsequent viruses, and take longer to recover from them, and potentially have relapses as a result that they may or may not recover from. This is also why more women than men have CFS/ME: because of the differences in how women's immune systems work. It's also why people with CFS/ME are given the flu vaccine on the NHS every year and should automatically have been included in group 6, usually rectified by most GPs when brought to their attention.

"Long Covid" as Whitty said today consists of several syndromes currently being lumped together. Some are due to organ or neurological damage as a result of serious Covid infection. But a large number are what has previously been called CFS/ME when it was triggered by more common viruses like flu or glandular fever.

The same thing happened after SARS, MERS outbreaks, even Ebola. A large percentage of those infected suffered long-term effects from "post-viral syndrome".

I suppose one good thing that might come out of this awful pandemic is that there may be some proper funding to research and look for treatments, rather than dismiss people with the condition and say "yes I get tired too". If millions will now have it. But even pre-Covid ME/CFS received less than 10% of the research funding of say MS, despite having many times more sufferers.

If you are worried, you can get home anti-body tests that specifically look for antibodies from the vaccine.

I am confused by this comment: my understanding was antibody tests only detect if you have had the actual virus, they don't pick up vaccine antibodies?

And even if you've had the virus and/ or vaccine, nobody knows yet how long that immunity lasts.

@Bobholll

Genuine, non judgy question - why does CFS & Fibro mean the vaccine may not have worked properly? I work in a medical field & all the data we’ve seen so far that suggests a potential lower immune response is people on long term steroids & those having significant medical treatment such as chemotherapy.. I can understand being worried about catching covid with CFS but I’m surprised to hear the vaccine might not work so well 🤷🏼‍♀️

If you are worried, you can get home anti-body tests that specifically look for antibodies from the vaccine - would that put your mind at ease or help you decide how cautious you might need to be maybe?

I don't think I've said that the vaccine won't work as well because of ME/CFS. I'm worried about what would happen if I do catch it in terms of symptoms and long term health. It takes me longer to get over any illness and another virus could make my long term health worse (not saying it definitely will by no one knows) I wasn't aware of antibody tests until today so I will look at that.

CEV, Group 4 , in my 30’s

Still very nervous

@Tupla

[ quote] Vaccine means 9 in 10 chance of not ending up in hospital which is brilliant when you think where we were a year ago. If I were 100% healthy normally I wouldn't be worried but I'm not so I am. I'm worried about how I will be when I get it, whether long covid could make my quality of life even worse etc, whether I will be one of the 1 in 10 who do end up in hospital.[/unquote]

The one in ten chance means that one in ten people in hospital with covid are double vaccinated (not that one in ten people who are double vaccinated end up in hospital). This is quite low considering that so many of the double vaccinated are older or with underlying conditions. The jabs lower the chance of catching it by quite a lot. I am still concerned because the rising cases increase the chance of catching it, but just wanted to say it does look better than a one in ten chance!

U are so right, my brain is fuzzy today. I would be interested to know the percentage chance catching it and then ending up in hospital. I need to look at the stats properly to reassure myself maybe.

My understanding is that - as far as we know at the moment - the chance of catching it while vaccinated is no more if you have CFS/ME and no other underlying conditions (although comorbitities are very common so that is not necessarily a common scenario). However - if you DO catch it (and we know the aim of all vaccines is to stop societal spread, vaccines generally don't eliminate a disease and never provide full protection, especially as strains mutate e.g. eith flu and other colds (some of which are coronaviruses!) every year) then as a CFS/ME sufferer already the chances of you having a relapse (effectively "long Covid") are very high. So people in this category are at risk of serious and potentially irreversible long-term health impairment if they get Covid. And obviously if restrictions are lifted (as they must be) but with no extra measures to protect these vulnerable people e.g. continued working from home through this winter at least until community infection is at a much lower rate, then Government policy is deliberately causing more severe long-term disability to tens of thousands of people who are the unlucky percentage that the vaccine won't protect who also have this condition who makes them more vulnerable than a healthy person.

I'm sure this or similar must also be true for many other health conditions I'm less familiar with.

Society must open now, the balance of harms has obviously swung that way now. That doesn't mean though that vulnerable people should be chucked under a bus. It's possible to open up and put in law that employers etc must allow vulnerable staff to protect themselves wherever possible while still doing their job e.g. continuing to work from home.

I'm double vaccinated, have ME/CFS, Fibromyalgia, Autism, have suffered a neurological event that has left me with numb legs & feet & Arthritis. I only got my ECV status in March this year, I'm a single mum to an autistic 17 year old who has either ME/CFS or long covid. I've been housebound for at least 18 months so the opening up doesn't bother me, I don't know if it will when I eventually get my power chair & can go out again, ds is also double jabbed as he is my carer.

I've had one vaccine, second is in August. I've got ME. Doesn't worry me in the slightest. Life is for living, no point living if we can't enjoy ourselves. I suffer misery and pain most days, no point in worrying myself to death about something which may not / probably wont happen. There's no suggestion to say ME makes you vulnerable either (though I do take ages to recover from other viruses so I know that could be an issue). The vaccines work. Yes you could be the absolute minority, but you can also get hit by a car, have a freak heart attack or have a stroke. You've already pulled an unlucky ticket having ME. Time to get on with our lives IMO!

@SunflowerGiraffe I've had ME for 15 years, diagnosed for 9. I've never had the flu jab in the NHS and was never classed as CV or in any kind of higher grouping than my age. My doctor is well aware of my condition.

I’ve got ME and fibromyalgia. Two kids, one in primary, one in secondary. Never considered myself more vulnerable. Am double jabbed and can’t wait to go back to normal.

SunflowerGiraffe I agree with a lot of what you are saying, and do feel rather thrown under the bus. Am still hoping that relapse isn't inevitable with ME/CFS. The HealthRising website are doing some interesting polls. The link isn't working at the moment but from memory I think 60% of people with ME/CFS and symptomatic Covid relapsed....