Autoimmune Registry: I didn't know there was an... - PMRGCAuk

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Autoimmune Registry

HeronNS profile image
11 Replies

I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got any research in their database yet?

( autoimmuneregistry.org/auto... ).

Interesting, considering this, which implies an effort to keep up to date:

autoimmuneregistry.org/long...

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HeronNS profile image
HeronNS
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PMRpro profile image
PMRproAmbassador

Strikes me as a bit OTT - ME is usually triggered by a viral illness, most existing a/i disorders can be triggered by an illness amongst other things. Long Covid is the same, Why does it need special treatment? OTOH - hopefully the interest in it might help us but probably not in our lifetimes ...

piglette profile image
piglette in reply toPMRpro

There is a lot on Long Covid in the BMJ this week and I thought they have similar symptoms to me why are they allowed to make such a fuss and have special area in hospitals set up to look after anyone with Long Covid.

HeronNS profile image
HeronNS in reply topiglette

Probably because there are all of a sudden hundreds of thousands, probably millions, of people worldwide who have developed probably autoimmune condition from a novel virus. The rest of us have been quietly accumulating like a dripping tap, not a flood.

I'll probably get censored again so please just look on this as sharing a list of autoimmune conditions - did you know there were so many? - which was my intention.

I also read a really interesting item about how the medieval Plague caused genetic changes in the European population which made them more resistant to the Plague pathogen, but also gifted descendants with a greater tendency towards autoimmune conditions.

piglette profile image
piglette in reply toHeronNS

That is interesting.

Pusph profile image
Pusph in reply toHeronNS

I should like to read that, is there a link please?

HeronNS profile image
HeronNS in reply toPusph

There are a number of sites which had articles on this research, October 2022. I read it on the NPR site someone shared on X formerly known as Twitter, but today the link I looked for didn't look right, so here is The Guardian:

theguardian.com/society/202...

Charlie1boy profile image
Charlie1boy in reply toHeronNS

Yes, I read that about the Plague too.

HeronNS profile image
HeronNS in reply toPMRpro

I must have missed something. What "special treatment"?

PMRpro profile image
PMRproAmbassador in reply toHeronNS

The fuss that is made about Long Covid and provision of special clinics for them to be seen, funding for studies. special physio offers ... As you point out, there are millions of patients worldwide with autoimmune disease and we have been ignored or dismissed.

Longtimer profile image
Longtimer in reply toPMRpro

Probably because they think PMR is for the oldies!.....

HeronNS profile image
HeronNS in reply toPMRpro

Okay, I thught you were referring to something in the list I shared.

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