Covid-19 vaccines and vaccinations

To Vaccinate or Not - with ME/CFS
By: Nancy Klimas, MD, Director, INIM
https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html

 

I'm in the UK and in 2 groups.

Group 6 (clinically extremely vulnerable) and group 4 (over 50 with underlying health issues - clinically vulnerable).

The 'word' is that as a group 6 CEV person they will attempt to give me the the first shot of vaccine before the 15th of February.

I do not plan on accepting because;

Even before this I was pretty much housebound and have a low risk of catching covid 19 - it mainly seeming to need social contact to do so, which I do not have.

Other people, who actually have a life, would benefit more at this stage than I would from having their first shot.

I physically could not get to a vaccination center - I know where my closest one is and couldn't get there at this time of year.

Even if I could, why risk it? Whilst shielding my risk is very low, but walking over a mile, along busy roads, to a place with people in, even if I could manage it and the previous several years hadn't shown me that attempting such things at this time of year in themselves make me very ill for weeks - it would seem to me to be a much higher chance of catching covid than I have on my sofa.

In the UK they seem to be be playing fast and loose with the whole issue, ignoring the WHO and 'advice' from leading health bods across the world - saying it's on the basis of 'data' but the manufacturer doesn't agree, and there has been no time for them to do the requisite testing to gather the data for 12 weeks between shots. In short I see no reason to trust them and quite a few not to. The whole schoolyard 'we did it first, we're better than everyone else' line is really disturbing as an indicator of mindset, and likely competence.

So, I plan on refusing the first approach and waiting and seeing - it's not as if being vaccinated would make any difference to my life in the short term.

 

What on earth is Dr. Klimas going on about?

"There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3's, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome, it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID-19 vaccines".

If I was in this risk group I would not be relying on supplements based on her 'assessment'. Stop it already.

 

I hope she mention these as a way to stabilize mast cells before/after a vaccine. Not as an alternative to vaccination.

 

I don't know the research on these supplements, but just as an anecdote, my very mainstream ENT recommends specific, GMP-certified supplements with NAC and quercetin to her allergy patients. These 2 ingredients are also in a lot of common allergy supplements such as D-Hist.

I used to take D-Hist and found it very helpful for allergies, but I've discovered that in recent years NAC and quercetin give me insomnia, so I had to stop.

 

@perchance dreamer

Some people have said that slow-release NAC improved their sleep. It had the opposite effect for me too.

 

Haven't you forgotten the "It's British, so it must be great" bit, Wonko?

Yes, I do concur with you on a lot of this. Especially the competence bit. It worries me.

 

I'm going to take the same approach, although I think my GP would probably offer me the Oxford vaccine via a home visit. The whole 12 weeks between jabs thing being unevidenced stresses me out, plus the fact that the Oxford vaccine may turn out to have a low efficacy too. I much prefer to wait until they have at least 3 months of 'real world' evidence on this vaccine.

 

I won't be having the vaccine. I've had several adverse drug reactions some of which have made me permanently worse and the only antibiotics I've ever had induced anaphylaxis which developed over a day not 15 minutes. I know from bitter experience that if it does adversely affect me I'll be left to deal with it on my own at home.

I also read an interesting article in the paper edition of the Guardian yesterday ( can't find it online) saying that some countries, the ones that are handling the pandemic well such as Taiwan, New Zealand and Australia. aren't in a rush to vaccinate and are adopting a wait and see approach so they can get more information about efficacy and side effects from other countries experience before rolling a vaccine out.

 

Part of Australia's reluctance is the fact that they only have a supply agreement with Pfizer for 10 million doses (which would cover 5 out of 25 million population), that supply hasn't been delivered yet and the remaining agreements are with AstraZeneca (with inferior efficacy) and Novavax (no data yet).

Australia could benefit greatly from a special kind of limited emergency approval, namely vaccinate workers in quarantine hotels and healthcare workers who are likely to be exposed to COVID cases.

 

I have given this careful thought and have decided I will take any vaccine they offer on the basis that anything is better than nothing. Not very scientific but since the current situation is horrendous already and will be for the next 4 weeks at least (probably more) I’m glad that my group 6 slot will be later. I’m not a fan of the politics but at the end of the day we are in a crisis and the supply chain clearly is a problem ...witty dropped a hint the other day that lack of immediate supply was the main reason they are moving to the 12 weeks (not speed).

Anecdotally, my wife went for her flu jab about 3 weeks ago and it was like a military operation apparently with no queuing ( she had a very specific time slot). She was ushered in to a socially distanced seat and her buttocks had barely skimmed the seat before she was being called in, jabbed and was out the back door. Whole process took 2-3 minutes.

I haven’t done my flu jab but wish I had much earlier since I’ve had a downturn in my ME following a minor cold (still only 60% of pre-November levels and can’t do a full day of work).

I think the U.K. government is taking a massive gamble but I think that reflects how serious the situation is ...not something I approve of from a science point of view ....but what choice do we have...I would rather have something than nothing particularly when my 12 year old can bring anything into the house when they ease restrictions (e.g. latest cold despite meticulous precautions). We aren’t using our key worker status to send him to school but it’s a balancing act of home schooling vs my me deteriorating further vs catching COVID ....great choices not.

 

Yes, my choice is based on the fact that I live alone and am shielding anyway. I haven't been able to drive for the last year and now with cataracts and the problem with vision loss in my left eye (possible optic neuritis), I suspect it will be at least 6 months (if ever) before my sight will be good enough to drive even if the ME allowed it (which currently it doesn't).

I'm also lucky in that I live in a rural hamlet.

 

These two issues, combined with the fact I live in London, in a block of flats where people almost certainly have covid and where I have to use communal lifts etc, will have to access medical help, have a backlog of other medical things that need doing too, but then the fact I relapse after vaccines AS well as having an allergic type reaction, is making me feel really anxious about what to do. For me, there’s a chance I may say no to the vaccine because of my reactions. Then I’m worried I’m losing a chance to make myself safer. But for my mum, she was almost certain she wanted to go ahead and I agreed with this decision because of the situation. She’s also actually got an invitation to have the vaccine already.

But then we realised we don’t know if actually having the vaccine even makes someone safer - the vaccine isn’t a very effective one, and then having it 3 months apart might make it even more ineffective. Then there’s the fact I’ve now seen a few scientists / virologists (and my mum says she’s heard quite a few scientists / virologists on the TV news as well), saying that there is a high chance of mutation of the virus when there is partial immunity, which actually might mean having the vaccine in ourselves might not actually be that safe at all. And if we had waited, my mum (and I) might be given a better and more effective vaccine, and been able to wait to see what happens to people re side effects. So I now feel very confused and stressed about it. Edit: my mum also says she is finding it difficult to make up her mind.

 

What are the stats on how effective the Astra Zeneca vaccine is / what’s the likelihood of becoming immune to covid after having the vaccine 3 months apart? And after one dose?

 

Impossible to know as they are playing with the numbers.

For example;

Seem to remember that when the pfizer one was first touted that it was supposed to be around 54% after the first shot, rising to 70-90% after the second - these would be figures from the manufacturer.

There was some stuff around the same time about a half second dose raising efficacy - I cannot be certain that this related to that vaccine or if it was about the Oxford one.

Now we are told that the pfizer one is near 90% after one shot, rising to above 90% after a second - as a justification as to why it's perfectly okay to wait 12 weeks, as, according to those figures almost all the effect is from the first shot.

This was largely before the Oxford one was approved so I'm reasonably certain that is the vaccine referenced (well that and the fact that as far as I know no one has ever claimed more than 70% efficacy for the Oxford vaccine - it's 'selling' point was that it was local, we had control over it, and that it didn't need ridiculously low temperatures to store it - not it's efficacy)

So they are playing with the numbers to justify policy decisions, and on that basis it would seem to be impossible to know WTF is going on.

 

At the moment, I am struggling with the decision too, wanting to be vaccinated but with rather a heavy heart because of confusion about the data - figs are changing- and I could change my mind again. I am in group 4 so theoretically (!) should be done by Feb 15th and my GP has told me I will get Oxford vaccine which troubles me.

I discussed my concerns with another GP in the practice this week but got nowhere. He agreed that the figures are better for Pfizer but the practice is offering Oxford and that is it, or nothing. I have considered postponing on the offchance I could access Pfizer somehow later, but this feels very uncertain.

More groups (like teachers) need vaccination, and Pfizer is so much more difficult to distribute. I do have appointments in March and April with 2 hospitals who are dispensing Pfizer and have wondered about seeing if they will vaccinate me at the appointment but 1) ftf appts may be cancelled and 2) even if they are not, I would cancel the appointment if covid levels are very high ( both hospitals are in London)and 3) they may refuse because the system isn't set up for it. To be fair Pfizer has to be very carefully handled and they can't just add the odd person.

So I may just stay with the system. At least I would be called for the top up dose routinely- I presume. And there are the statements that even if one gets covid after vaccination, it will not be severe. Is this statement to be relied on? That is an important one for me.

My other real concern is that even if vaccinated, I may not be able to see family. My daughter is headteacher of a large primary school in a socially deprived area of Kent ( very high covid levels) which my grandson attends. They all had a positive diagnosis in October with few or no symptoms. How safe to see are they even after vaccination? Can they carry it and transmit it because their exposure to it will be high. I don't feel secure enough with Oxford to count on not getting infected. I am finding it incredibly difficult to decide the best way forward.

 

I am definitely getting the vaccines. Hopefully in a few months they will be taking appointments nearby so that I don't have to wait in line. I'll have to ask a friend to take me though in case I don't feel well afterwards. There are many like us who can't stand/wait in lines and they will have to figure something out to help those of us who can't.

 

All good points.

I live on my own with no surviving friends in the area, with no support, and what remains of my family is hundreds of miles away.

So I don't have to worry about people coming in and out.

My decision was easier, both the risk is unwarranted in my situation and given how little I go out, even without a pandemic, it just makes more sense for someone who has family, or others around/visiting, or who has to go out, to have the shot that I would be 'entitled' to.

That and the simple fact that I am not particularly bothered by the virus, it's effects yes, people dying and being badly affected by it yes, but my actually catching it, for myself as opposed to the extra 'work' it might entail for others if I did so - nope.

Life has shown me that the universe hates me too much to simply let me have such an 'easy' way out, not when it could continue torturing me, taking my life and making me completely pointless, for many years to come.

So, in the spirit of Murphy's Law, that whatever can go wrong will go wrong, when applied to the pandemic, it is very unlikely that coronavirus would kill me.