How to join Myositis UK

[harveysgran]

Hi, I have been suffering from statin induced necrotising myopathy for over 3 years. During this time I have tried to join the Myositis UK charity by sending the form on their web site, and by calling the number on their web site but I never get a response and the phone is never answered. I can see the charity is still active by recent news on their web site and would like to attend their next conference. Can anybody explain their lack of response and how I can sign up to be a member.

[SoonToBe]

similar issues which is frustrating as I recently moved back from the states where their 2 myositis support organisations are very active. I have the anti-SRP version

[JeanBlackIsle]

I am surprised that you haven't had a response.

I also have statin induced myositis, diagnosed in 2015.

There is an excellent Facebook group Myositis Friends Support Network. Worth joining because everyone has direct experience of myositis and there are even a few of us statin induced folk.

[Jo-Goode Administrator]

Harvey, Sorry to hear you have not been able to join. I'm aware there was a period of time during lockdown when their was an issue with the website joining link for joining was not emailing the form to the office & it took some time before it was realised it was not working. I can only suggest trying once again to join.

I have just posted information about the conference on this group.

Regards, Jo

[Jo-Goode Administrator in reply to Jo-Goode]

You might be interested in the UK group on facebook , it is more active as has 2,700 members & have many with statin induced NAM facebook.com/groups/themyos...

[BeachBuddy in reply to Jo-Goode]

Hi Jo I have tried a number of times over the past 18 months to join the Myositis UK charity by also sending the form on their web site and calling but have never received a response. I live in Southampton where I believe the charity is based.

[Jo-Goode Administrator in reply to BeachBuddy]

Hello, Unfortunately there was a period of time when the joining link was not working, so not emailing the joining request to the office. I believe the problem has been fixed, so would suggest trying again. Regards Jo myositis.org.uk/myositis-in...

[Parisian13]

I had a similar experience when I first got diagnosed. I gave up in the end, if you figure it out please let me know.

[BeachBuddy]

thanks both. I tried again last week and also phoned with no joy, however the American site responded immediately