I’m confused about what group I’m included in - vulnerable or extremely vulnerable. I didn’t receive a shielding letter, but I’m sure I’ve read that because I was told I had the onset of SPMS last year, I use a wheelchair or scooter all the time outdoors and my tremor means I have difficulty preparing meals etc I should be taking extra precautions. I live in a tier 2 area. I would love to hear if anyone else is in a similar situation and what you decided to do?
I think MS puts you at a moderately higher risk.
Diabetes is significantly higher risk.
My son is diabetic and gets regular shielding letters.
We are in Tier 4 now.
I’m feeling safe enough because my family are sensible and don’t take risks.
Have you got carers coming in?
A lot of MSers use direct payments for this.
Bouds knows a lot about it, so if you want more info send her a PM.
I’m not surprised you are confused.
Initially we knew very little about Coronavirus and people with MS were bundled into the vulnerable category. luckily having MS on its own does not put us at any greater risk than someone exactly the same as is without MS.
There are a few people on DMTs that may be at greater risk and others for whom the vaccines may be less effective. But the vast majority of us will be treated like anyone else of the same age.
If you have another illness you may be called earlier because of that.
Those working in care and the NHS are vaccinated earlier so they become less likely to give it to the extremely vulnerable.
I have not seen anything about other essential workers being taken before people of 50, but that could change if they want to keep schools going for instance.
I have been concentrating on exercising my lungs as inactivity causes our health to deteriorate when we are not watching. Also trying to get out when I can (walking around the block or further on my scooter). Also lifts my mood.
Hi, so I have SPMS, diagnosed straight off 14yrs ago, anyway when lock down 1st happened in March, I contacted my GP and MS nurse to ask if I fell into the vulnerable group, only to be told NO, I couldn’t even get a supermarket shop delivered, or my husband couldn’t go and shop in the vulnerable group time, so I don’t think we fall into it. I’ve lived pretty much in tier 3 since the beginning, so personally I think we’ve fallen through the cracks.
Jean x
I agree totally about falling through the cracks. I live in the sleepy county of Shropshire and my MS team, whilst on the one hand good, are definitely not very proactive. I’m still taking Tecfidera although I’ve doubted its effectiveness for some time and my EDSS score has been recorded at 5.5 for years even though I blatantly don’t fit the criteria - my MS nurse has even written that I cannot walk beyond 5 metres without aid. I think they seem to fear that if they record anything above that, I won’t be eligible for DMTs. It’s frustrating when you see that a lot of progress has been made recently in potential treatments for SPMS.
Hi. I disagree and so does my doctor so you see we all have different thoughts on this!
The UK govt guidelines put ANYONE with Ms in the Clinically Vulnerable section. Regardless whether you are on DMD’S or not.
My doctor agrees. We are clinically more vulnerable than ‘normal’ people. It is not that we are more likely to catch Covid (or any other diseases/viruses etc). It is because if we do catch things, we could have a worse case than others. And any problem like flu etc could cause us to have further disability.
Anne
I agree with Anne48 that I do not want to catch to catch Flu or COVID as I am fairly confident that infections come before m my relapses as well as producing pseudo relapses. It pays to be cautious. However what follows is from the MS Trust website
What’s the risk of catching Covid-19?
If you have MS, you have the same risk of developing Covid-19 as anyone else. People with MS are not at a greater risk than the general public of becoming infected with the coronavirus; your immune system is not weakened by MS.
An exception to this is if you’re taking certain disease modifying drugs. Some of these drugs suppress parts of your immune system leaving you at a greater risk of infection. For more details about each of the individual disease modifying drugs see the section on disease modifying drugs. If you are concerned, do check with your MS nurse or neurologist. You should not stop treatment or miss appointments until you have spoken to a health professional.
If you are more severely affected by MS, for example you have difficulty with swallowing, clearing your lungs or are prone to chest infections; or if you have other health conditions, including those affecting the heart or lungs – such as high blood pressure or asthma; you might be at greater risk of complications if you develop Covid-19.
As far as the vaccination is concerned the groupings are different from the groups used for lockdown and we take our turn based on age or other medical conditions
1 Like
We are in vaccination group 6- anyone with MS, whether progressive or not. This means we receive the vaccine quite a bit earlier than the general population. I’ve read that we are not more vulnerable to severe illness or death from covid, but that we are considered clinically vulnerable because any infection can cause a relapse and therefore worsening of disability. This is also why we can get the flu jab every year, it’s just not good for us to get infections in general. There are some people with MS who are classed as extremely clinically vulnerable - they will have been sent letters. These people will have quite severe disability which means they’re generally more frail and this makes them more vulnerable. Stay safe everyone.
Hi, Covid 19 for us is like the flu as in one takes precautions and keeps away from kids/adults etc who may carry it. NO covid19 is nothing like the flu per se, i am using it as a bench mark.
So unless you are on an immune suppressant drug you should take adequate health precautions.
For example you wouldn’t dream of going into a room full of snotty kids would you? With COVID 19 IT is clever and it has a way of invading a body and leaving no outward trace.
So you could go into another room with a bunch of kids and they are all happily playing so you are lulled into a false sense of security thinking they are ALL WELL, when they are not as they are a vessel carrier for one of the deadliest viruses we will see in our lifetime.
So the lesson learnt is this. EVERYONE has the virus and you must act accordingly, whether they look ill or not. You self isolate and restrict where you go. You WEAR YOUR MASK, wash your hands, AND ALWAYS KEEP SPACE. Even with people you know and love.
Its a simple concept.
For example I have stayed in my area since March I have no desire to go into shops or any other such place. When i answer my door when the postman knocks twice, I wear my MASK. Any parcel i receive goes through rigorous cleaning process lol.
anyone who has come to me has to wear a mask and i hand them hand wash. My bungalow is well ventilated.
When you go outdoor wear a MASK, as humans have a habit of stopping to chat to you, like where i live i go into the corridor to take the rubbish out on my scooter, and humans are in my face, step back i say or i will run you over lol. But i wear a mask. Humans are basically idiots, they are over 80 years old and covid isnt going to get me they say standing there with hands on hips, and a few weeks later you hear they are in hospital extremely sick.
So whether we are classed as vulnerable or extremely vulnerable the precautions for us must be the same strength.
I only do online shopping in fact have kept amazon going lol. I live in tier 2, and sadly had to tell my grandson that he cant come in. Why he lives in a special unit with young people of 17 and there is no way he is coming into my place.
HANDS. FACE. SPACE. EVERYONE HAS COVID. act accordingly, stay safe, this is massive PANDEMIC the likes we have never seen before in our lifetimes, and the name of the game is SURVIVAL. Oh and on shocking note, a friend who is very healthy living in London a few weeks back went to give blood as he has a rare type. they did a covid test and he was shocked when he was told it was POSITIVE. he had unkowningly spread it around him.
OH even the chimney has been blocked off this year sorry santa cant have you coming down it this year but hey
MERRY XMAS AND A HAPPY NEW VIRUS YEAR 2021.
Not sure about this. But this is from information from the Greenbook on the Government Website talking about special groups. MS is not listed as a specific condition. However, some of us may be covered under this:
Chronic neurological disease Stroke, transient ischaemic attack (TIA). Conditions in which respiratory function may be compromised due to neurological disease (e.g. polio syndrome sufferers). This includes individuals with cerebral palsy, severe or profound learning disabilities, Down’s Syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neurone disease and related or similar conditions; or hereditary and degenerative disease of the nervous system or muscles; or severe neurological disability.
or this
Immunosuppression due to disease or treatment, including patients undergoing chemotherapy leading to immunosuppression, patients undergoing radical radiotherapy, solid organ transplant recipients, bone marrow or stem cell transplant recipients, HIV infection at all stages, multiple myeloma or genetic disorders affecting the immune system (e.g. IRAK-4, NEMO, complement disorder, SCID).Individuals who are receiving immunosuppressive or immunomodulating biological therapy including, but not limited to, anti-TNF, alemtuzumab, ofatumumab, rituximab, patients receiving protein kinase inhibitors or PARP inhibitors, and individuals treated with steroid sparing agents such as cyclophosphamide and mycophenolate mofetil.Individuals treated with or likely to be treated with systemic steroids for more than a month at a dose equivalent to prednisolone at 20mg or more per day (any age).Anyone with a history of haematological malignancy, including leukaemia, lymphoma, and myeloma and those with systemic lupus erythematosus and rheumatoid arthritis, and psoriasis who may require long term immunosuppressive treatments.Some immunosuppressed patients may have a suboptimal immunological response to the vaccine
or the catchall
The examples above are not exhaustive, and, within these groups, the prescriber should apply clinical judgment to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself.
I had expected the guidance to be clear cut, but it looks as if there is a clinical decision to be made. I suppose this is reasonable if you consider the difference between a 49 year old in a wheelchair and a newly diagnosed 20 year old.
PwMS cover a wide spectrum and I would jump at the chance of having the vaccine. But from what I have read I will receive it because of my age, not my MS. If you are classified in this group you would be called for vaccination after those people who are over 65 and before those who are over 60.
The plans do not extend to those under 50 (yet).
Not sure if this helps, or just adds to the confusion.
This gov.uk explanation of the vaccine priority list gives a good overview of who is deemed most at risk of serious COVID and why.
Alison
1 Like
Thankyou Crazy Chick. Exactly the situation. And thankyou Alison for pointing us all to the relevant info. Hopefully there won’t be any confusion now for us. Anne
1 Like
- chronic neurological disease including epilepsy
Good reference and clear they are thinking about things and acknowledging that the should keep it simple and easy to understand. This is a simpler definition and would include all pwMS, but the green book is referenced and appears less clear cut.
It is going to be a few months before it matters. The process will probably be controlled by the GPs, so hopefully they will be fully and clearly briefed. Not sure if the MS Society or the Association of British Neurologists are aware and active on this. However, I suspect some of us are at less risk than others while other pwMS will be at greater risk. We are all individuals, but a mass vaccination process needs to be kept simple.
1 Like
I phoned my GP surgery to check that I would be tagged as ‘underlying health conditions’ when the time came in the vaccine roll-out, and the answer was yes.
Alison
I think when I used the word ‘group’ in my initial post, some seem to have assumed I was referring to the vaccine groups. However, I wasn’t thinking of the vaccine at all, but more about how far I should be going to protect myself (isolating etc) - of course this doesn’t matter now we’re all back in lockdown.