update on autoimmune research meeting

[charlieab]

Wasnt sure whether to post this in the existing thread (where it might get lost) or here. Anyways, hope its ok here and Im not now spamming!

They seemed agreeable in principle to the research (and excited about it) and seemed like very decent folk. I said I would write up a more detailed proposal. The info that people provided yesterday, and that I cited in the meeting, was very useful. So thanks a lot for that.

Have appointment quite soon at London Bridge Hospital and so might not get much done until after then. I think need to put together a photo album of my purple legs, swollen hands etc to show the Dr there!

R

Will keep updated on the research project.

Thanks again.

[lupus-support1 Administrator]

Thank you for the update. I hope your appointment at London Bridge goes well.

With good wishes,

Ros

[charlieab in reply to lupus-support1]

Thanks Ross. As we "speak", Im putting together a history to send to the Dr prior to the appointment. That should save some time I think and make sure that I dont omit important details (like how I no longer remember important details!).

best wishes

R

[HollyHeski Administrator]

Well done you!... just let us know what we can do to help.

Hope all goes well at hospital xx

[charlieab in reply to HollyHeski]

Thanks Holly and will do.

[KellyInTexas Administrator]

I was thinking about this, and one thought that I had, that seems so common to all of us, and sets us apart from other disease processes because I believe it’s such a newly described syndrome compared to to other well described and more understood established diseases , is that we are still “ works in progress.”

When you try to explain our stories, there will never be a concluding paragraph with us... it will be, “ and this is where this patient is This week, because the specialists are niw trying this approach....”

At least for a lot of us with more severe cases.

This is one reason why the work is important.

What department is interested? This is an important question. How do they mean to share it across disciplines to make it useful?

[Yllek in reply to KellyInTexas]

A work in progress is exactly what my gp said

[KellyInTexas Administrator in reply to Yllek]

Oh wow! I wonder if you told me that somewhere along the way and I subconsciously remembered it! Lol! It’s a useful one!

If not, then your GP and I think a lot alike! But it is rather stating the obvious...

[charlieab in reply to KellyInTexas]

Hi Kelly in Texas

I thought Id replied but I cant see it! Maybe I forgot to click "post". Anyways, I think you are right about the "work in progress". I also agree about the importance of diseminating the findings across relevant discplines. If my post reappears, I'll be repeating myself! But, anyways, basically I think it might make snes to publish in a relevant and respected academic jourmnal and then publish the report to the media - thus getting the message out while providing a credible peer-reviewed, and citable, source of info for "professionals" and academics. Though maybe academics are professionals?!

Thanks again.

R

[Pappp]

Thanks for the update and your positive attitude

Now I think it is time for you to concentrate an your next appointment I hope you have a positive outcome

Best wishes from Pappp

[charlieab in reply to Pappp]

Thanks Pappp.

Best wishes

R

[Wittycjt]

Bravo! Thank you, Cindy

[charlieab in reply to Wittycjt]

Thanks Cindy.