Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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autumm 08/27/2016

Hi all. I think we can agree by now that this site is no longer working for us. Everyone except myself and Nanny have drifted away. Some people can't even get back onto the site. May I suggest we all join up with TMA Myositis. It really is a great place for support and advice and we can all meet up there. I have been a member for 4 years as has TRPT and there is much information and support there. It is a far better place for us all than DS. What kept me here was the people but with the exception of Nanny we have lost them all. Nanny do please think about it, I hope everyone will think about it. We have to DO something. People need the support. Best wishes to all. Autumm

nanny1611 08/27/2016

This new site has been a disappointment, Autumm, and I'm sorry to see you go. Although I belong to the TMA, I've never been on their chat forum. Is it active? Does my membership to the TMA automatically give me access to their support forum, or will that require another registration? Thanks for letting us know that you are leaving. If I shift over to the TMA site, I think I'll still check back here now and again. Best wishes to you, Autumm.

autumm 08/27/2016

Hi Nanny. When I go to the TMA site I click on Community and then I log in. Do try it and I will look for you but I am Mary on that site. It can be very active and people are very helpful. There are amazing blogs from world renowned Rheumatologists who specialise in Myositis and have regular connections with real people on the site from time to time. Do give it a try, I will be looking out for you and of course I will always visit this site to help where I can but I don't think it can survive in its present form. I will mail you from this site now and give you my personal email in London if I can work out how to do it. Best wishes. Autumm

nanny1611 08/27/2016

Autumm, I just joined the TMA Community Forum, but didn't see any activity, probably because I don't know how to use it. I kept "nanny1611" as my name there, but have a different flower picture. Any insight and/or instructions on how to find my way around the TMA Community Forum will be greatly appreciated. Hope to "see" you there. And trpt1 also, along with other friends from DS.

autumm 08/27/2016

That is great news Nanny. Click on Community and then click on general discussions or PM and DM discussions or I use all of them. It takes a bit if getting used to. Play with it and see how it goes. I will look out for you and replenish if I find you. Great news. Autumm

autumm 08/27/2016

Hi Nanny. Click on Community and you will get a drop down, then click on Community Forum and you should find al the traffic. I will leave a message on there so you will know you have arrived. Autumm

nanny1611 08/27/2016

Thanks, Autumm.

sammyw 08/27/2016

Hi Nanny and Autumn. I may try to join that site too when I get a chance. The only other friend I know who has posted on this new site is Amber. We should let her know as well. I am out of town right now but will try to join the other website when I go home and will hopefully see you both there!

autumm 08/27/2016

Sammy. That would be just fantastic. Nanny has joined and we are communicating there already, Trpt is there but known as Sherri. It's lovely to be in touch again. We will still check in here in case anyone needs us. Let us know when you are joined up. Best wishes. Autumm

nanny1611 08/28/2016

@sammyw
Looking forward to seeing you over at TMA.

nanny1611 08/28/2016

@sammyw and Amber
Here is the link to the Community portion of TMA where you can sign up for an account.
http://tmacommunityforum.ning.com/main/authorization/signIn?target=http://tmacommunityforum.ning.com/

autumm 08/28/2016

Hi Nanny. Thank you for doing this for our friends on this site. I do so hope we can 'meet' them there. Best wishes. Autumm

autumm 09/02/2016

Hi Amber. We are all over on the TMA Myositis site. Hopefully you will join up and find us there. We will keep checking this site in case anyone needs us but it has become just hopeless once the change. Everyone hates it, terrible shame. Hope you are doing ok. Best wishes. Autumm

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