It's moderated by the Royal Osteoporosis Society (ROS) and if it's even half as good as the PMRGCAuk forum I know I'm going to get the help and support I need as a Newbie.
Anyone with osteoporosis, spinal fractures etc might find it useful as from my recent posts I know there are others with both problems (and more - there's probably a group for everything)
Link to the forum healthunlocked.com/bonehealth
there's probably a group for everything
..pretty much ..😊
Hope your ‘new’ one gives you good support…and here’s link for others -
Can't find one for my MdDS (Mal de Debarquement Syndrome) yet, though it is very rare, Ive foudn a forum on Facebook
If it’s that rare it’s probably under the umbrella of another one…but might be worth seeing if Facebook is helpful and maybe suggesting a HU one is launched..
I was thinking the same. When I join an online group or forum I like to spend some time readng before posting to learn all I can first so will keep reading and maybe suggest as you say. There is some kind of foundation/ charity for it in the USA but not the UK
Trouble is you need a critical mass in terms of numbers to keep a health forum going or it gets a bit static and will eventually just fizzle out. I do belong to another with fewer than 10 members which is active every day but it is more an online coffee group and if one wonderful lady is late or locked out of the wifi, not a lot happens!!!
I found this when I joined PMRGCAuk plus the Thyroid one. It's not as active as here but I didn't delve too deep to be fair. The Thyroid one on the other hand is bonkers and I struggle with their finite knowledge 😂
Come off it, most thryoid forums have INfinite knowledge, way beyond all medics. They say ...
I take it you're being slightly sarcy there but as I'm one of the most gullible people in the world I'm just checking, as actually we, and certainly you and DL and others DO know more about PMR than the average medic, that's part of our problem 😆
I am being sarcy - they all insist no medic gets it right ...
I was just adding to my comment as your reply came in. Often Expert patients do know more than many of the doctors treating us, yet we are always told that we have to kow tow to their superior knowledge
Yes, I re-read what I put, I meant the Osteoporosis one is not so active. The Thyroid is bonkers, I have no idea what they are saying half the time, but I don't have the capacity to delve into it. I have enough going on with the LVV for now. The one thing I did take from it though was to take my thyroxine when I go to bed on an empty stomach....
Yup - I hear you!!!!!
And I tell people to take thyroxine before bed - saves messing about with pred in the morning ...
I think there is a group for everything! There is one for Parkinson's and they have two! Zoom meetings each week...a great opportunity. Once you get rolling, you will be supporting others and that's always a lift. I'm still low on the learning curve but am learning. Good luck💞
are all Health Unlocked forums moderated though? Else there can be some pretty loopy stuff said that goes unchecked.
Good question. Most seem to be run by the appropriate charity but I guess 'it depends'
Depends on the forum I suspect. Few are as closely scrutinised as this one! LupusUK is amazing but still relies on readers to catch the tripe - and I find the strange posts there too!!!
They all have moderators -but undoubtedly some are better than others…
Thanks for that info for sure will be joining it!
thank you. This is very helpful. 😀
I'm 48 today! Why this is a sign of Birthday ' Brain Fog' and is this just another unwelcome gift of GCA/PMR?
Dexa results, awaiting GP advice, osteoporosis and Alendronate
PMR and chronic fatigue syndrome- is there a link?
Does pred cure or simply suppress symptoms?
