Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Am wondering if there are Moderators on this Website that help keep conversations on track?
Seems like there is some tallk on here citing Questionable Facts and not staying on topics (MG).
Please advise. If this continues I will no longer visit this site.
Thank you,
Scott
Dailystrength underwent a major overhaul something like 5 years ago. Before that, the MG group numbered 1000 folks with probably 100 active. The new interface was different, had problems and the vast majority of active folks left this forum to find someplace else -- Facebook groups or such.
I had been active since 2012 and then dropped out and removed my account after having been in remission a few years thinking that there was no reason to be active and not particularly liking the new format either. My old posts are still around, but listed as "deleted_user" as are many other of the other previous users who removed their accounts.
In the original format this group had folks in charge from the patient group and they somewhat rode herd on the posts. The new version seemed to remove that.
So what one does now when an inappropriate post is made, is to make a complaint to dailystrength about the particular post or poster and then dailystrength reviews it. I did that once this year on a poster who obviously was trying to sell a miracle cure. The poster joined, immediately started selling a product in several different groups and did nothing else, pretending to have each disease in the many groups joined. Dailystrength checked and removed the account.
We have a rare disease. We have that in common. And many of us become friends as we get to know each other's conditions, treatments, problems, life issues etc.
This is a support group. That said, if the post is an attempt to educate, support, ask for support, pass on some MG information, discuss experiences or just wish Happy Holidays to those of us who know what MG is about, then it seems appropriate to me.
So why am I here after going into remission? Most folks who get MG under control leave the forum and get on with their lives, leaving behind mostly folks who struggle with it.
I do expect my MG to come out of remission and become a more "normal" person here as to condition, so some of it is to just keep up on what that will mean in terms of new treatment.
But the main reason is when the format change occurred, and folks left in droves, new people came here, freshly diagnosed, wanting to find information and people who knew what MG was like, and was there any hope for them. But with so few folks active, they got no answers at dailystrength. And so I created a new account to try to help as I was helped.
I remember in 2012 when I got my diagnosis and thought "Oh sh--t. My life is over," came here and got wise advice to be patient, take the medications, solve the side effects and you will likely return to living OK. I needed that from people who actually had MG. I have only met one person in person in those 12 years who has MG too, so the online group was my support circle.
As just about anything related to medicine and health is relevant to us with a particular twist for MG, it is hard to know what is not. Right now the question is about vaccinations and those of us with MG and whether or not we take them.
And that issue is important, although when it becomes the vax vs anti-vax argument not related to MG, it does stray and so we can either ignore that, respond, or leave. Leaving because of a disagreement on what is pertinent would seem to me to be one of those cut off your nose to spite your face actions. I think ignoring would be sufficient.
Happy Holidays
Russ
You make some good points.............
Scott
i totaly agree with russ,, ven do every have the right to express their beleives,, the best way when some are odds, is to ignore them
i am a firm beleiver when i research facts regarding mg, vaccines ect.. that they come from i reliable source such governamental offices (scientific) or otherwise, governement asssociation from all differnets countries.
also one can beleive in natural meds, but site facts , we are in this together and we need to be able to relay only good info and leave all rest behind
so Scot, have patience, stay with us, eventualy you will enjoy the experiences and info relays, i know that sometimes people act dissively but i dont beleive they have bad instincs, dont forget we are in this all togheter and we are gree to agree or disagree
i in the begining i have felt the sam way as you, but dint dissapear, because all of us have good info to be relay
best of luck
Andre