ukezza111 days ago
My brother was diagnosed with antisynthetase syndrome end of may. This was after going into respiratory failure and spend 7 wee...
New here 🙋🏼♀️
Penelope-Mary19 days ago
Hello I have found this forum through the lupus UK forum and thank you to whisperit for mentioning it!
I have had lupus for near...
2 Replies2 Likes
Re-posting a reply I wrote last year in respect to current PIP and benefit claims.
fbcburnett20 days ago
Hi, I have recently been awarded both PIP benefits after a long application process. My advice would be to print off all of the question to ...
1 Reply1 Like
Myositis conference details?
Eliotfa month ago
Does anyone have any links, summaries or other information on the conference which took place in June, for those of us outside the U.K.?
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Myositis Forum UK
Jo-Goode2 months ago
If you use facebook you may be interested in Myositis Forum UK, it's a UK & Ireland only closed group (so you have to be a member to view/co...
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The Myositis UK Conference - Oxford 24th June
Jo-Goode3 months ago
The Myositis UK conference is only one week away! We are also holding a Gala Dinner on Saturday 23 June, to recognise 30 years fighting rar...
3 Replies1 Like
Please support Dr Hector Chinoy
Jo-Goode4 months ago
My clinical and research work involves looking after patients with myositis and trying to find new and more effective ways of managing the d...
2 Replies1 Like
Dr Helene Alexanderson
Exercise & Myositis This year we are very excited that Dr. Helene Alexanderson, from the Karolinska Institute in Sweden, is a guest speaker...
Myositis UK Conference Sunday 24th June 2018
Myositis UK Conference - Sunday 24th June 2018
Invited speakers include:
Dr Helene Alexanderson, Karlinska Institute Stockholm, Dr Patrick ...
Follow Myositis UK on Twitter
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Myositis UK Afternoon Tea Meetup Manchester 19th May
*** LAST FEW PLACES AVAILABLE ***
Myositis UK Afternoon Tea Meetup - Manchester 19th May
Guest Speakers: Dr Hector Chinoy & Dr Liza McCann ?...
New! Question about diagnostic tests
oogleboogle5 months ago
I'm new here and have not been diagnosed with myositis but have similar symptoms to this and fibromyalgia.
My question is, my bloods ...
Hello - investigations pending
whisperit5 months ago
Just to introduce myself - I've been on the LupusUK Health Unlocked forum for some time now, after a diagnosis of MCTD (with ILD and Raynaud...
7 Replies2 Likes
stillhoping5 months ago
Can anyone add to the message I posted six months ago? I did get some helpful comments then but wonder if anyone else has now had to undergo...
2018 London Marathon
Jo-Goode5 months ago
Congratulations to our three runners who completed the hottest ever (75F) London Marathon! 😬
Kate Buck 7 hours 30 mins
Arthur Macpherson 5 ho...
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Myositis Forum UK
I'm admin for a Myositis group on facebook, Myositis Forum UK, with over 700 members
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Meetup on Saturday
We have 40 attending the London Meetup on Saturday!
There are still a few places still available if you would like to attend.
Don't miss out...
The Meetup group has reached 150 members 😬
Don't miss out!
Join and email will be sent to you when future Meetups are announced meetup.com/MyositisUK/...
Diagnosed with Polymyostis
donnadt6 months ago
I'm still trying to get head round the idea that I even have Polymyostis. Was diagnosed last year in August & on high steroids. Trying to re...
10 Replies3 Likes
Myositis UK 30th Anniversary Gala Dinner & Annual Conference
Jo-Goode6 months ago
Myositis UK are celebrating 30 years as a registered charity!
To celebrate we are having a 30th Anniversary Gala Dinner on 23rd June, follow...
Myositis clinic in South East
Jan226 months ago
I am new here and was initially diagnosed with D M three years ago. My diagnosis after lots of tests is now A N C A Vasculitis with Myositi...
4 Replies1 Like
ANNUAL MYOSITIS CONFERENCE 2018
Tony-Burton6 months ago
Does anyone know the date of the annual Myositis UK gathering, normally held in July in Oxford.,
BBC Nicky Campbell 5 Live Radio Show
Michael spoke on BBC Nicky Campbell 5 Live radio show about Dermatomyositis and how the skin aspect is effecting his life.
Starts @ 18.00 to...
Change of venue for London Meetup 21st April
Please note the venue for the afternoon tea Meetup in London has changed to Browns Victoria
New here. One question
Anne_087 months ago
Does anyone here have lesions like eczema with pain(or burn) in the skin of the knees and elbows? and do you know depigmented vitiligo-like ...
Today is Rare Disease Day!
Jo-Goode7 months ago
Today is rare disease Day 😬
It's a day where rare diseases join together, from all over the world, to highlight the issues faced with having...
Myositis UK Meetup Afternoon Tea London - Guest Speaker: Dr Patrick Gordon
Afternoon Tea Meetup London - Guest Speaker Dr Patrick Gordon
Myositis UK Meetup's give the opportunity to meet and chat with others about My...
IBM Home exercise program
1252tim7 months ago
Hi. I was diagnosed with IBM last year. I got a cross trainer but had to sell it when I became weaker. I’m thinking of getting a recumbent c...
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Hello and here’s my very short story.
Jgbgt7 months ago
So today I am in a bed in the local DGH with IV steroids for 3 days. It’s really scary. I’m a healthy (I thought) 34 year old male with wif...
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