Novavax trial thread number 3

[Frazzled2207]

Yet more chat about novavax, (un)blinding, general vaccine passport stress, approval (please please please) and more.
Those involved in other vaccine trials also welcome.

Just for info. I’ve just been called by someone who i think was from my local centre. She was double checking my info as they’ve been given until 5pm today to upload data. I said I’d check my app tomorrow. She said it’d take 48hrs to be visible. i did not ask tons of questions as she clearly had a lot to do.
She called on a mobile, so if you’re the type who does not answer unknown numbers (as I often don’t) then perhaps a good week to answer them.

I have the event QR code so this must be for the travel one.

No domestic pass for me. I got my letter last week but that's it. I'm pretty much resigned to not going to the US in October (they're not going to let us in, are they?!) so likely going to sit it out and see what happens with approval at the moment.

No domestic pass for me yet - my surgery rang to double check the dates of my real vaccine on Monday.

I still have nothing.
@andadietcoke tbh the way things are going I can't see the US letting us in anytime soon (I have family I want to visit so keep an eye on the situation) But at least it won't be novavax's fault. If you don't go I hope you can reschedule to next year.

Well I just got vaccinated and got the question why haven't you had it earlier..I came up with I was worried about AZ. Also the last question was if you had been in a trial which I did okay with after all the nos.

@JPLeeds
Good for you.
I was going to say “it’s a long story” but wasn’t asked. If I was asked if was part of a trial it would technically been true to say no as I suppose I have left but I was asked “have you had a vaccine as part of a trial”. Grr

@JPLeeds which one did you end up having? Moderna?

Are you ok, any side effects?

I got Pfizer, at the moment I just have a sore arm simiar to when I had my first Novavax in November. To be fair it's roasting in the house so I wouldn't know if I have a fever unless I checked.

I have to say I'm feeling a bit feverish today but not too bad. I also got this reply to the email I sent the team;

Thank you for getting in touch with our team. As you have let our team know that you have had an alternative vaccine, our team will be not upload your data to NHSdigital which means that only your alternative vaccine will show up on your app with your permission. Also, as you have also had an alternative vaccine, our team would have to withdraw you from the Novavax trial. Please can you provide our team your participant number and your permission to do this please. Thank you very much for your contribution to the Novavax trial so far.

Anyone know an email address for the Midland Trust who are running the Novavax trial?

I'm in the Cheadle study

@JPLeeds
I recently unblinded and have had an alternative vaccine. After reading your post about contacting your team, decided to contact mine, as mixed vaccines would be a problem. Notified that I’d been identified as a participant not to upload to app. So glad I sent that email. Stress free.

@JPLeeds I take it you're part of the Leeds trial?

So happy today to see my passport on the app. I'm happy to still be a full participant in the trial - I really haven't needed to prove anything so far so just kept waiting. But it's good to have something digital I can wave if it comes to it.

Hey @CardinalCat I got an email from my clinic today with the letter that's supposed to prove we are vaccinated.

However so much for the letter being from the Scottish govt. It signed by the lead trial Dr.

And hopefully access to the website by the end if September.
The letter making out like it takes time due to technical difficulty. When we know they just need a code.

I used to just hate SNP , I know really really hate SNP.

And getting an email from vaccine research to see if you'll volunteer for more? Umm I'll pass.

I lie. Its the end of October til they estimate we will be on it. I'm not just taking that. They've known for 2 months. That means it would take 5 months to get us added to the website.

Last thing @CardinalCat. If you want to email thr health secretary directly.
Here's the email to use

[email protected]

I've just sent him one to say not getting on the website til the end of October is unacceptable.
And that the making out of technical difficulties is just not true.

According to the NIHR website we are entitled to another vaccine;

We are aware that certain countries have not guaranteed trial vaccines the same status as approved vaccines. It is likely that there will still be an impact on travel even past the end of July.

If this is a significant concern for you (for example, because you feel you must travel to a country that does not recognise trial vaccines), you may be thinking of obtaining additional doses of an approved vaccine on top of your full course of trial vaccine. You are entitled to receive an additional deployed vaccine, in addition to your trial vaccine, should you wish to have this. You should be able to access this from any vaccine centre. We want to make sure you have all the information you need to make an informed choice about this. You may then wish to discuss further with the trial team and/or your doctor.

Before deciding to receive an additional course of approved vaccine, it is important for participants to be aware of the following important information

I think this is a significant development and finally an admission that foreign travel issues will not be sorted anytime soon.

Makes it a bit easier (morally, if not practically) to duck out.

“Because you feel you must travel” is unhelpful though I think. I don’t feel I MUST travel, and don’t have any immediate plans, but just cannot accept the fact that if I want to travel anywhere other than Greece I just can’t for the forseeable. Anyway I feel better about having had my Moderna now. That said I had novavax in November so an easier decision. I think harder for those that had it in the spring.

@Cooroo

So happy today to see my passport on the app. I'm happy to still be a full participant in the trial - I really haven't needed to prove anything so far so just kept waiting. But it's good to have something digital I can wave if it comes to it.

Still nothing on mine. I really want to see my sister but without the vaccines showing in the app, I'd to pay for three bloody tests.

According to people on the Facebook group whose app is now showing novavax (mine is def not) you can no longer book nhs vaccine if you have two doses on app. I don’t think this follows that you wouldn’t be able to get a walk in one. But anyone still thinking about it might take note.

That said, printing out that section on the NIHR website might help persuade an otherwise reluctant vaccinator.

@Frazzled2207
I unblinded a week ago and had alternative vaccine. After seeing JPLeeds post yesterday decided to contact my team as I didn’t want mixed vaccines on app. Was notified I’d been identified already as not to upload to NHS app. So I think possibly best to be honest and send email if you have or intend having alternative vaccine.

[quote Ragdoll4]@Frazzled2207
I unblinded a week ago and had alternative vaccine. After seeing JPLeeds post yesterday decided to contact my team as I didn’t want mixed vaccines on app. Was notified I’d been identified already as not to upload to NHS app. So I think possibly best to be honest and send email if you have or intend having alternative vaccine.[/quote]
Yes indeed I have messaged them this morning

Thanks @Torvean .

I got a letter through the post today from the glasgow clinic signed by the lead trial doctor. It looks like something a 6 year old would knock up for a chill project and I cannot see it having much sway. The letter references October before the digital side will be sorted. Like you I agree it's totally unacceptable (I was hoping to go on a work trip to France in September. I was also hoping that if at least have the OPTION of going abroad for the school half term break in mid October (I suppose there is always Greece.)
The clinic also answered my various emails from the last 4 weeks today. H saying they've been busy/ low on staff because of holidays and pings. The email basically said "you should be getting a letter today that we are confident you'll be pleased with". Ummmm, I don't think so. I've asked for a phone call next week to decide what to do. At my age it will only be AZ open to me. I'm confident I had the love vax in April so I'm not actually worried about immunity and happy to let this run another month or two, if I can make my peace with missing my work trip.

Nothing back yet from my MSP (I only wrote on Monday but an acknowledgment would have been nice).

It is just SO unfair, all of it. And I hate the SNP and their feckless crowd more than ever too xx

Typing on phone in the sun here and can barely see screen- so many typos. Whatever the LOVE VAX is, sign me up now!