Hey guys, why can't we collate our own findings?

Just a thought. So many permutations of our symptoms. No one is making sense of it all. Would setting up a site we can all contribute to, naming our symptoms versus what we are diagnosed with help or hinder?

I am IT illiterate. Could it be done? Can just anyone do it?

Contributors would have to be legit of course.

What d'ya think?

You wont be shy in letting me know!

Regards

⚽️

13 Replies

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  • Isn't that we are doing here already.

  • Well Chapter, we certainly commiserate with each other over similar pains and symptoms or different replies to similar questions.

    Our sharing helps us, but the amount of knowledge here just goes off into the ether. I would like to see in black and white what we are saying.

    Attested experience. Any trend in Fybro being missed? Or Fibro not being fybro at all, but part of something else? Who do certain drugs work for? Is there a trail of breadcrumbs no one has followed to a new destination? Maybe I am cramming in too much but someone could cut it up and show us a feasible way to go? No?

    Even a cruedly gathered mass of info might show some glaring thing no researcher has looked at before.

    I have asked Paul.

    Watch this space

    Thanks for your supportive comments

    ⚽️

  • Hi Footygirl

    How did it go with the Specialist you saw?. Good I hope. X

  • Hi guru

    I posted about it!

    Thanks for remembering

    ⚽️

  • Hi Footygirl

    I saw your appointment post and sent you a reply.X

  • Patient databases or registries are becoming more common and I certainly know of a couple for vasculitis for example; the Rudy study and Vasculitis Patient Powered Network. It would be interesting to hear if Paul from Lupus UK knows of any Lupus specific patient registry.

  • Hi RichardE,

    One of the largest registers we have in the UK is the UK JSLE Cohort study for people who are diagnosed with lupus as children. There are over 550 people in this registry at present. Soon multiple centres in the UK will be recruiting for MASTERPLANs which is a multi-centre research study aiming to stratify and individualise treatment for lupus patients.

  • Excellent, thanks Paul. That's good to hear.

  • Yes, please do ask paul about this, footy 👌👏🌟🍀

  • Here, here, Footygirl! Been wondering about this for some time....

  • See my reply to Chapter above

    OXOX

    GUYS

    ⚽️

  • Hi

    Paul says that Lupus UK do this. A recent once in five year gathering of info is due to be published soon. We are in good hands.

    ⚽️

  • I like your thinking Footygirl🤔👍🏼👏🏼👏🏼!!

    PM

    🌺🌺

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