Letter published in the times

[Piwacket]

Good morning everyone thought some might find this interesting- I am gathering information in preparation for telephone call with my MP

I am a member of this organisation

immunodeficiency.org

This letter from their CEO has been published in The Times

[Madmusiclover]

Thank you so much. I think the website address you give is missing a ‘uk’.

[Boxerlady]

There's another thread about this

healthunlocked.com/nras/pos...

Good to see it being discussed at least 😊

[medway-lady]

I thought it was used when your ill not like a vaccine ? and it's being reported that people with transplants have responded to the 3rd vaccine.

[Piwacket in reply to medway-lady]

I think the idea would be to use as alternative therapy to vaccination if people do not mount sufficient anti body levels

So guess proactive monitoring of antibodies would be required

These are some of recommendations sent to Nadine Dorries from the all party parliamentary group on vulnerable groups that i posted couple of days ago

Hopefully all points will be actioned 🤞🤞🤞

[medway-lady in reply to Piwacket]

I can't see how they can monitor over 700,000 people for antibodies. I think it'll be given based on how ill someone is if they contract the virus. Kidney people are told that even having no antibodies does not mean the vaccine has not worked so it is still so much unknown.

[Piwacket in reply to medway-lady]

I agree - so much is unknown. I personally don’t think there will be any definitive answers for a long time if at all including from the octave study

Immune systems are so complicated and would think it is impossible to tailor a treatment or vaccine individually and but at least it is being raised and highlighted

I have felt marginalised in society recently so much I am unsure if it is safe for me to do

and there are so many more people who are a lot more poorly than me who need more understanding from government the general public as well as health professionals

[medway-lady in reply to Piwacket]

I already know I have pANCA antibodies although no idea why that is important. Its such complicated science so I just go by what my Nephrologist says , that for me the risk is higher due to my very low kidney function, and that is far higher than the Benepali and AZA for RA. But to stay sane I've felt since the beginning that I must not worry over every thing I can't change and to do the things that I can. So still wearing a mask and can't see that stopping anytime soon. I also still shop online and use hand sanitiser. But I have had 2 minor hospital procedures done both times I was impressed with the care and cleanliness of the hospital and it did make a change that the appointments were on time unlike in normal times when running late was the norm. lol x

[Neonkittie17]

I’ve also posted a few similar links on this yesterday and earlier. We may have overlapped!

[Piwacket in reply to Neonkittie17]

Oh sorry didn’t check all the posts before posting

Interesting stuff though

Take care

[Neonkittie17 in reply to Piwacket]

Great minds think alike! 😁 The more people see the better and I’m glad the immunology society are making people aware.

[Hidden]

Hi - is it okay to share your post on Lupus UK HU please as I know two friends there with lupus who also have primary immunedeficiency there - one who is probably not well enough to post just now? Or perhaps you wouldn’t mind sharing it there too? I have the opposite ie Hypergammaglobulemia.

[Piwacket in reply to Hidden]

Hi yes please share with your friends- I am sorry to hear one is unwell at the moment

The more awareness that can be raised the better

[Sheila_G]

Thank you. I read this yesterday. It sounds good but don't hold your breath. Sorry to be such a cynic, it comes with experience.

[Happy5]

Very interesting thanks for sharing