Long Covid and the Vaccine

So as you may have gathered from my IG stories I had my first Covid-19 vaccination last week. I organised this myself through the NHS vaccination website- I could book one as a NHS key worker in my local region. Please note if you are a registered carer in the UK you can book yours too - any age.

It's a lucky dip when you get there and that day my prize was Oxford Astra Zeneca! I think it's more likely that this will be used as it has less issues with storage, and it is frankly - cheaper. At this point I don't care! I do not want Covid-19 ever ever again! I made sure my diary was clear ;-) and told everyone it was likely I would relapse so prepare for me to be in bed for three days plus.

As it was I did spike a fever 38.3 and was utterly exhausted so did spend a couple of days in bed. I had no appetite and I ached. I tried to not take antipyretics ( aspirin, paracetamol and ibuprofen) for the fever, to give the vaccine the best chance of stimulating my immune system, but wimped out with the never ending arm pain especially when trying to sleep. My vaccine reaction was basically like having the 'flu for a few days. Anyhow by day 3 I was OK - still needing rests but out of bed and functioning.

Yesterday I was almost the old me. I managed an hour walk without huffing and puffing and even managed to tackle some heavy gardening with which involved holding a ladder with my arms above my head and looking up for half an hour and then a lot of bending down to pick up debris. Anyone of you with fatigue, PEM and especially post Covid POTS will know that looking up, arms above the head and bending down are hideous!

Still I am not counting my chickens but it seems I am not alone in feeling cautiously optimistic that the vaccine may help my symptoms a little.

Gez Medinger, who many of you will know from your LC journey, has recently made a new video following his straw poll of 470 long haulers and how they felt after vaccination. Of these 470 80% were from the UK, 15 % USA, mostly female, mostly in the 40-50 age range and at 9-12 months into their LC. Basically me.

60% had the Pzifer vaccine

30% had the Oxford Astra Zeneca vaccine

9% had the Moderna vaccine

In the first week after vaccination most of the group felt mildly to moderately unwell:

  • 43 % had mild symptoms - fever, injection site pain, headaches and muscular pains

  • 46% felt moderately to extremely unwell

  • 9% felt improved from their LC baseline

It's important to remember here that at the very least, a mild, short-lived fever means that the immune system is responding in a way that should confer protection against SARS-CoV-2 when it’s encountered for real.

In the second week after vaccination 16% felt that their LC symptoms had improved. This is along with:

  • 52% who had no change in their LC symptoms

  • 13 % were mildly worse

  • 13% were having a mild relapse

  • 16 % felt improvement

So overall by week 2 most felt their symptoms of LC were improving.

In those 2 + weeks after vaccination:

  • 50% were back to their LC baseline

  • 27% were feeling slightly better

  • 5 % were feeling completely better

  • 14% were feeling slightly worse

  • 3.8 % were feeling much worse - a lasting relapse

However the overall trend was improvement in baseline LC symptoms at 2 + weeks with 32% feeling this way but there was a small risk of a prolonged relapse (3.8%) He found that Pfizer and Moderna were more likely to give people this improvement compared to Oxford Astra Zeneca and this may be down to the way they work. Again Gez's data is a from a self selecting, self reporting group and we have no way of knowing whether someone was going to get better or worse anyway. But as he says looking at the wider picture the Covid-19 vaccine most likely will:

  1. Stop you from getting reinfected

  2. Reduce anxiety associated with this

  3. May help reduce LC symptoms

  4. Gives you documented vaccination status should we ever need vaccination passports

  5. Contribute to ending the pandemic by reducing spread.

This survey is supported by the anecdotal evidence recently discussed in The Times "Vaccine May Ease Long Covid Suffering" where up to 40% of long haulers are found to be making "dramatic recoveries" post vaccination. Again more studies are needed into this.

There has been reported that for many the second vaccine dose has been the worse resulting in a lot of people needing to call in sick, so it would be interesting to see follow up data on this.

In the research this week scientists at the Fred Hutchinson Cancer Research Center in Seattle found blood sera collected from patients who had recovered from a SARS-CoV-2 infection early in the pandemic displayed “generally weak” neutralizing ability against the virus 4-8 months later. (Our "negative antibodies"). They found a single immunization with an mRNA vaccine from either Moderna or Pfizer-BioNTech boosted immunological memory, with the concentration of neutralizing antibodies increasing about a thousand-fold.

In short a long haulers reaction to the vaccine may be more pronounced, but the benefits are likely to be more pronounced as well.

Professor Danny Altmann, a immunologist at Imperial College London and a LC champion, tweeted about a recent paper in the Lancet " Effect of previous SARS-CoV-2 infection on humoral and T-cell responses to single-dose BNT162b2 vaccine" by Maria Prendecki et al.

They showed that individuals with previous SARS-CoV-2 infection generate strong humoral and cellular responses to ONE dose of Pfizer vaccine. In contrast, most individuals who are infection-naive generate both weak T-cell responses and low titres of neutralising antibodies. Long haulers and previously infection patients are in red:

This shows that those of us with LC are likely to have a strong successful response to one dose of vaccine but those who have never encountered the virus before are likely to mount a weak response and which might not provide sufficient immunity to protect from clinical disease or viral shedding, and might not persist for a 12-week delay until second vaccine is administered. This is especially true of those over 50 years of age and shows that we are not safe and MUST maintain social distancing until everyone is vaccinated and vaccinated completely. I hope everyone keeps on improving and wish you well when your time comes for your vaccine.


Gez Medinger's video

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