On February 16th 2020, I had to self isolate for ten days with one of my sons as we both showed symptoms of coronavirus. Loss of taste and smell, temperature, flu symptoms. At that time, we sent our tests away and about five days later the came back negative but were asked to still self isolate while we had symptoms. Soon after, the ME Association asked those with moderate and severe ME to shield. My doctor suggested I did the same. So I have been shielding, with the odd break for medical appointments and socially distanced walks when we were allowed out, ever since!
A year later, the vaccination program is in full swing and I’m looking forward to having mine.
The ME Association has run a campaign to include ME in the group 6 batch. We have lobbied government, local MPs and our own doctors for this. As ME is a neurological condition and therefore causes vulnerability to infection - people with ME are more likely to become seriously ill with the virus and risk hospitalisation - rolling out the vaccine to them quickly is of huge importance.
Link to ME Association article:
Link to ME Association letter template:
After being involved in the lobbying and emailing my doctor, using the ME template provided by the ME Association, my doctor replied and recommended that I continue shielding as I wasn’t suffering with severe ME (ie not bedbound) and therefore would not be added to the Group 6 list for our surgery.
However, the ME Association heard many positive results to the lobbying of GPs:
Please pass on my thanks to Dr Shepherd. My GP was perfectly happy to add me to Group 6 after I wrote to him.”
“I emailed your information about Covid-19 vaccine priority to my Drs surgery, and I’ve received a reply saying I will be put in Group 6!
“The email reply said ‘chronic neurological conditions’, which ME is classified as within the guidance of the document you sent.
“Thank you for the links and information, and well done to Dr Shepherd for his campaigning.”
“Today I got put down for Group 6 after I emailed them the ME Association Vaccine Leaflet, with a quote from Dr Charles Shepherd regarding the ‘Green Book’ wording.
“My GP surgery is now updating all other registered patients of the surgery who are diagnosed with ME/CFS. I had to fight for it taking two days of email exchange, but it was worth it!”
“Very positive news for me re: priority vaccination. My GP confirmed I am in Group 6 with no quibbling! However, I would like to say thank you to Dr Shepard for doing the letter which I had ready to send in case I had any problems. I find him and this whole page very supportive.”
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The number of people in Group 6 includes such a wide range of conditions, surgeries were having to make difficult decisions. I understand this and recognise the ME community is facing a kind of postcode lottery. I know of people with similar health conditions to me having it as part of the Group 6 program. It’s a numbers game, I guess.
I am not alone in this situation at all. So many are shielding while waiting for the vaccine. Many people with ME live a life similar to shielding anyway and so we have developed a certain resilience around staying home! I have seen society adapt to having to stay home with the dawn of zoom/FaceTime/WhatsApp meetings and evenings where friends chat over a coffee from their settees. Musicians have live streamed gigs and acoustic sessions, actors have live-streamed theatre and spoken word, we have had classes and course from anything like Art to Zumba. My life has been quite busy in comparison to per-lockdowns. I was able to join a writers group with which I manage to attend many of the sessions. My Rock Choir sessions are on line and I attend many more due to not having to physically get to the venue.
However, missing those occasions of meeting friends for drinks, going to the cinema, experiencing the energy and joy of live music and theatre are leaving a huge gap in my life. We all know that feeling.
I look forward to my vaccine. It will feel one step closer to socialising in the flesh. It will feel one step closer to giving my Mum and Dad a hug again.
Hi, I read with interest your article on covid vaccines for ME/CFS people, since my 23 year old son has been ill with ME/CFS for 10 years. There are grave concerns about long term effects with these vaccines though, which are not generally being stated in the media. Pathogenic priming is one, where you may experience a potentially deadly reaction if you come into contact with the virus once you are vaccinated.
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