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.

This is Grant Shapps' tweet

I have written back to the trial site, demanding to be unblinded as is my right, stated in the participant information sheet we all signed (multiple times). Every day I am angrier with myself for “helping out” by signing up.

@Dreamer1989
They ignored my emails but were quite nice about it when I called.

Someone on the FB group now reporting shown as vaccinated in the travel part of the app. Only one person mind and claims not to have had any approved vaccine. Is there some hope?

Yes def promising but still no suggestion that other countries will def accept.

Well I’ve just had Moderna. Mixed feelings really. Had to lie but was a string of questions so just said no lots of times. Nobody asked about why at my mature age I hadn’t been before. I was prepared to say it’s a really long story…

From nihr

Ooh I am in Wales but have now got a COVID pass on the NHS app! That is a good step forward. I had an email from my trial site about an hour ago so just tried it out.

@Frazzled2207

Yes def promising but still no suggestion that other countries will def accept.

Well I’ve just had Moderna. Mixed feelings really. Had to lie but was a string of questions so just said no lots of times. Nobody asked about why at my mature age I hadn’t been before. I was prepared to say it’s a really long story…

I had a story prepared (about not wanting the AZ vaccine because of the blood clots, and having just heard about the Moderna walk-in), and was slightly disappointed not to be able to use it!

I’m slightly regretting having it now, I don’t feel ill anymore, but have something that might be ‘COVID arm’, which is a known side effect with Moderna and not particularly nice. It’s supposed to take longer to appear than this, but I wonder whether it’s come on quicker because of the Novavax ones….

oh no. That's not good. I just had to google covid arm and it doesn't sound nice at all. But it says 3-5 days so hopefully it will go away over the weekend. I really hope so. I'm expecting to feel rubbish tomorrow but hopefully better for the football on sunday night.

Just had a long email from the stockport trial site trying to explain what's going on (will copy and paste if anyone wants it but not sure it says much really except for explaining that they are def a bit behind the curve uploading our data to the NIMS but they will be on the case from next week). They seem helpful but quite disorganised really.

I supposed I'm officially out now, I started part 1 of the thread with such enthusiasm. I still believe in the stuff and really hope it does get approved one day and lots of people do benefit. Ideally in the next few weeks and then I won't have to have the second Moderna (do you think you'll have it anyway @QueenOfThorns ?).

Yes, @Frazzled2207, ‘helpful but disorganised’ is a very good description!

My left arm is red, sore and swollen down to just above my elbow, and the two sides of the rash very nearly meet up on the inside of my arm, so basically it’s the whole top of my arm! The skin is hot to the touch and itchy. If I hadn’t read about COVID arm, I’d be quite worried about it, but it doesn’t seem to be getting worse and I don’t feel unwell, so I think I’ll be ok. If you get similar, ibuprofen and an antihistamine are the way to go.

Good luck with the football! I missed the match on Wednesday because I was too ill and fell asleep, but that was 1 day after the jab, I was miles better by the evening of the second day.

I’m very unsure about having the second jab now, the side effects are supposed to be worse the second time (apart from the arm thing).

Hopefully like me you don’t need to get it By a particular date. I am booked in for sometime in September which is good enough for me-
Chance we might be able to leave the country during October half term. But I’d really really like it if Novavax was approved very soon. And not just by the Uk.

Just wanted to check in and say that my trip to Wimbledon was a success and the app was accepted without question by the officials at the gate. That was a relief!

I had a phone call yesterday asking why I haven't been vaccinated, I explained the Situation and she was very nice and said they would update their records. We shall see.

Now I'm waiting (patiently!) for NHS app to update for travel and Canadians to approve Novavax... so I can travel in the autumn.

I've no plans to get an additional vaccine, I'm too nervous about side effects. I'm just hoping that enough people are aware of the situation that it will get sorted in the next few weeks.

We have just turned on in the middle of the local news (Northwest Tonight) and they were talking about us! They interviewed a woman from Rochdale who’s on the trial - her MP is apparently taking it up with the government. I’m not sure what more they can do, though - we have what we need for domestic use (well, I still don’t have the sodding letter, but I expected that), it’s what other governments do that’s likely to be the problem.

@Frazzled2207

I can believe that the app will show something for travel by the end of a July. It’s whether or not other countries will accept it which is the golden question(unless you know something I don’t)

@torvean
As useless as our government and been about all this I do believe there is some effort to sort this. The silence from Scottish and welsh governments is pretty shocking

We've had no thanks from anyone. My MSP was not even aware if the scenario.

The Scottish equivalent if NIHR can only be contacted by email. They've not even acknowledged my email let alone a reply.

Totally screwed over.

@Vargas
Great news I hope you had a brilliant day
As far as I can tell though after Wimbledon and the football are finished I don’t think there are any other domestic events in the forseeable that we n
need the app for.

Moderna side effects update- 21 hours on am fine other than sore arm (def worse than when I had novavax) and temp is 38 degrees. However last night I had really weird and quite significant shivers. I was strangely calm but husband was mildly concerned and was thinking of calling 111! But literally went away after about half an hour, as quickly as it appeared.

I'm going for a vaccine at 2pm

No idea what it is but my son had Pfizer on Wednesday so hoping it's that.

I'll let you know any side effects

@BG2015

I'm going for a vaccine at 2pm

No idea what it is but my son had Pfizer on Wednesday so hoping it's that.

I'll let you know any side effects

Good luck and suggest reeling out all the “No”s when they ask the questions.

I was knackered yesterday but not ill.
Today so far I’m feeling fine. I now have one covid vaccine record on my nhs app.

Well I had Astra Zeneca at 2pm. So far feel fine, arm a bit sore.

Lied through my teeth but so happy to have that little card.

Totally let down by Novavax

@BG2015
Pleased you feel ok about it all.
I was in two minds but now feel relieved especially we feel like I’ve come out the other side of the side effects.

Appears to be update on NIHR by Grant Shapps 9th July. Obs aware of reports and comments.

Has anyone got any idea/guesses if having two different vaccines will confuse the evidence system. If Novavax is approved but you've then had a different one, what would show on the records?

DH is booked in for this Friday for a new vaccine. We're hoping the fact we handed in the novavax letter to the GP won't feed through to the vaccine system such that it flags that he's not allowed a new jab.

I am being unblinded today, head of the trial here is calling me. I do feel sad that it has come to this tbh.

@Level75 it's not that joined up. I'm more worried about what happens when the NHS system eventually catches up and realises we have six vaccination dates in there in terms of evidence for travelling etc.

@Level75
the vaccinators don't have access to GP records as such. I don't think there will be an issue with your DH getting the jab.

I dunno about the system getting confused though....My moderna turned up on the NHS app within a day (not as part of the covid pass yet - but in the covid vaccinations record section). By the end of July we should all have something on the travel section of the covid pass. But then I am wondering what happens when (if) i get my second moderna . Because I would probably want the moderna double jabs to take precedence in the covid pass section if that makes sense. I could end up with a novavax covid pass but if I also have 2 moderna jabs under the covid vaccinations record section hopefully that basically covers most bases......but yeah I don't think anyone knows how exactly that will work for those of us with 4 or 6 jabs.

The vaccinations from studies don't show up in the NHS record - this is what they are trying to do by the end of July, so currently when you go for a jab they have no way of knowing that you've had them in a study. However, they are promising that they will show up by the end of July (haha) and I have no idea what will happen then - either for the NHS app or "Pinnacle" which is the sysytem that they enter the NHS jabs on to.
I am a vaccinator for SJA - currently if I put someones details in it knows if they have had a first jab - it wouldn't allow you to create a thrid jab. I think the current IT problems are getting the trial systems and the NHS systems to talk to each other without compromising the confidentiality of personal health records. I'm not at all clear why the study site staff can't just have access to Pinnacle & enter the details on there (you don't have access to any other health records), but I'm guessing the system doesn't allow for unapproved vaccines etc - for example I don't think it would let you create a record without entering the batch number which would be unblinding.