Meningitus B: Does the government think this is an acceptable response to 800k signatures on a petition?

[MythologicalPersonage]

petition.parliament.uk/petitions/108072?reveal_response=yes

sugar I so sorry for what you have gone through. It is absolutely heart breaking. Don't blame yourself - that way madness lies. Thank you for sharing your experience with us. You have highlighted the fact that the rash may not appear until the child is very poorly.

I look forward to the debate taking place. I will be paying for the vaccine privately and I am so grateful to all of the families who have shared their stories in the hope of preventing further deaths.

I would just like to add that I will also be making a donation to one of the meningitis charities in the hope that this will help fund further research and studies.

Mythological Thank you.
I have e- mailed my thoughts to Men Now as they are advocates for bereaved parents. It is so upsetting to think my dd is just a statistic. I do not want any other Mum to have to watch their child die so I plod on.
Glad you had your dc vaccinated. There are people who are going over to France to safeguard their dc, I would too but obviously too late.

For the sake of clarity in my post last night I said exdh was playing away. This meant he was playing rugby away not he was off with another woman. In case anyone wondered.

There are so many similar families on the Men Now facebook page sugar.

819,000 and rising again.

www.nuneaton-news.co.uk/Fight-Men-B-jab/story-28847542-detail/story.html

1234 I think exdh is on the fb page. He said he was going to add his comment.
Another article another death.

sugar- Success!

Sending you a PM with the contact details you wanted. Happy to send them to anyone else too. Just let me know.

1234 Brilliant thank you.
I have stated my case in much detail (7 pages) and e mailed it.
Success indeed !!!!!!! for the first time in a few days I have smiled instead of cried.

www.meningitisnow.org/support-us/news-centre/news-stories/petitions-committee-starts-debate-process/

Things are moving

You, you're making out this is a potentially unsafe vaccine which is not reflected by the evidence. Of course we don't know about its full effects on reducing men B cases... But it is extremely likely to do so given the efficacy data don't you think?
The JCVi has a cost-cutting agenda so everything they say needs to be seen through that prism.
The facts are that the vaccine is extremely well tolerated and shows a high level of protection in those who have been vaccinated.

I'm not making out anything that isn't supported by the facts as reported by the JCVI and other agencies (such as HPA and even Novartis' own safety data). No, I wouldn't say the in vitro efficacy data look great, responses to some antigens wane very rapidly (down to less than 20% after 12 months iiirc), which is why expected protection is being interpreted very conservatively as about 2.5-3 years (potentially 1.5 years reading the JCVI position statement). It genuinely is unknown whether the vaccine will work to prevent even the predicted 75% of Men B cases, which is why all experts are using careful language about it (see quotes in BBC articles in recent weeks).

The facts are that we have no idea what level of protection it has given to those vaccinated. Only time, and monitoring the number of cases, will tell.

As for side effects, it's well accepted that these are worse than the average vaccine and it's often called 'reactogenic'. The safety sheet for the vaccine itself puts some serious adverse events in the 0.1-1% range, so there's nothing particularly controversial in that.

I'm not always a fan of the JCVI's decision, but they are an independent body and I don't think can be accused of having a cost cutting agenda. See the whooping cough roll out for pregnant women for instance. They do however have to make sure an intervention is worth it.

The HPA doesn't exist anymore.
I don't think we should clog up this thread by arguing among ourselves but I'm afraid I don't think your assesments are right. And we'll only get true efficacy data once it's been in use for a while, but that's not a strong reason not to give it.
More than half a million doses of this vaccine have now been given with no major problems reported.

Oly5 that's just semantics, lets call it Health Protection England then. They still very much exist and collate epidemiological data amongst other things that are very relevant to this debate.

I guess we will have to agree to disagree, although I should point out that these aren't my assessments, but the assessments of the committee of experts who decide whether vaccines should be given and to whom, based on all the data available to them (which is more than is available to the general public). The wait and see approach before rolling it out more widely is also endorsed by experts interviewed by the BBC when the petition became headline news.

www.bbc.co.uk/news/uk-england-london-35602045

"James Stuart, a visiting professor at the University of Bristol and a World Health Organisation advisor, warned: "We need to know how well the vaccine is working. So it may not be the time yet to widen the programme."
Meanwhile, Professor of infection and immunity at Great Ormond St Hospital and University College London, Nigel Klein, said: "We all hope [it] will be successful.
"However as yet we really don't know how effective it will be and if there are going to be any problems and this is a major area of ongoing research supported by the Meningitis Research Foundation.""

Also, what some people would call major problems are well documented.

Product insert listing some of the side effects and frequency, including up to 1% risk of seizures, 0.1% risk of Kawasaki disease:

www.medicines.org.uk/emc/PIL.27502.latest.pdf

This compared with a 0.005% risk of contracting Men B.

It is quite clear to me that you can argue it both ways. It depends on your underlying agenda, what company you represent and your background story which way you look at the issue. It depends the weight you put on finance versus protection.

None of us gets to make the decision. It really is The Judgement of Solomon.

I can't work out if the Petitions Committee really is neutral or whether this has been pre-decided. If it is the latter then that is a democratic scandal of unholy proportions & the Government will pay the price with many of its own voters (just look at the Geographical map of people who signed the petition.....Home Counties & radiating out on all the Tory areas). That is why they were so stupid to release a letter before the debate saying they had absolutely no intention of making any changes.

I wouldn't like to have to make this decision. It is worth bearing in mind the sensitivity of the subject and reading some of the comments on the Meningitis Now facebook page for the alternative view.

Please stop it.
Im going to the HoC thats enough
The debate will be held there .
Please consider the feelings of bereaved parents

Sugar, again, in the nicest possible way, if you find it too distressing to read discussions on this subject then hide the thread. I've had to hide some threads myself recently for other reasons. I don't expect people not to discuss things because they might upset me but I don't have to upset myself by reading them.

If anyone is interested, here are some papers on the persistence of antibodies for the different strains in the MenB vaccine (and evaluation of different schedules). The second one also has info about reactions. They are quite long but interesting and worth reading if you have the time.

Here

and Here

Truly insensitive.

No 1234, it's not. I appreciate that this is an emotive topic for sugar but you can't ask people on a discussion thread to stop discussing something because it upsets you. If that was the case we would never be able to discuss anything on MN!

As I said, I've had to hide threads myself recently. I don't think that people are being insensitive by discussing the subjects that I find distressing, they are entitled to do so and I wouldn't expect them to stop. Plenty of MNers hide threads that they find upsetting or triggering. There's no shame in it and I think everyone would understand if sugar felt that these types of discussion threads about the MenB vaccine were just too much for her at the moment.

Sugar, it must be a real kick in the gut to read their response, but please know that due to your thread, and your story, so many people are aware. I for example didn't know there wasn't always a rash, you taught me (and I'm sure lots of others) that you don't just look for a rash.

I'm going to get my DD's vaccinated as soon as I can. And thankyou so much for sharing your story xx

There is discussing things and then there is banging on and on and on and on and on - over and over again.

YouCannot and Oly5 were discussing persistence of antibodies and safety this morning - that's why I gave those links. You don't have to read them. Other people may find them interesting/helpful.

I'm suggesting that it would be better to leave it to the committee now. Sometimes it is important to have a regard to the sensitivities of a subject.

You can go on if you like but what does it really achieve?

Oly5 directed a comment at me specifically this morning, implying that I was misrepresenting the situation in previous comments, and I responded, with links to evidence for anyone who was interested to look at. I wouldn't say that was banging on about it, it's just discussing the topic of the thread.

Thanks Bumbley for the links - interesting reading.

Thanks for the links, I'll read through. I am totally satisfied with everything I have read so far that this vaccine is worth it.
Sugar, my heart goes out to you and the beautiful girl you lost. Your story will have raised awareness among so many people. In her memory, you have done one of the best things possible - raise awareness of this devastating disease