Forummember9922
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I think you folks may want to have a designated forum category for improvement / self reported remissions etc
thank you
thank you
We do. Several I think, but I can't remember their titles. I'm tagging in a couple of people who I'm pretty sure will know ....I think you folks may want to have a designated forum category for improvement / self reported remissions etc
thank you
I think you folks may want to have a designated forum category for improvement / self reported remissions etc
thank you
As you can see, in a forum that has been around since 2009, and with over 31,000 people joining, there are very few major improvements or remissions that are reported.
i dont think we can use self reported remissions in comparisson to all time registered user as a metric for general improvements.
i feel only a handfull of people, maybe 1% of that, like 100-300 are actively writing in the forum.
This study found that of 33 adults with Fukuda ME/CFS, only 3% reported recovery after 5 years, and only 6% reported substantial improvement.
This systematic review of 14 studies on recovery found recovery was rare, occurring in just 5% of patients.
This paper on adolescents is more encouraging though, indicating that 80% of adolescents are recovered at the 25 year point.
I don't think a change of symptoms is all that unusual,
Yes that's right, most of the 31,000+ people who joined the forum are not active members. They may have been active members for a while, but then lost interest. At any one time, there is only a relatively small amount of active members on PR.
It may be true that some patients of this forum have improved and have not reported it, because they lost interest in the forum. But it's difficult to know.
People who get better just move onto the major challenges in their lives.
What you or I or anyone else would do... that's its own thing. But on avg, I'd imagine individuals struggle so much with this condition that as soon as they get significantly better, the last thing they want is to dwell in more of it simply by the goodness of their heart. They've got a life to attend to, finally, and would very much wish to move on and would forget about this forum in the process.Do they? I at least think that if I cured my ME, I'd stay active in this forum, to see whether anyone else benefited from my treatment, or if anyone figured out what ME is (and whether it might strike a cured person again).
I'm a tad surprised to see you here after reading your threads on the B12 oils or high dose selenium making you feel a lot better.
There are few complete remission stories, but there are definitely many improvement stories.
I found high dose selenium helped, but it did not provide a major improvement (which I define below). The B12 oils improved my brain fog to some extent, but did not help any other ME/CFS symptom. So even with these two treatments, I still have moderate-level ME/CFS.
But isn't brain fog like half the battle in your opinion ?
I know reddit is kind of silly and a mess in general which is why I appreciate your community a lot more, but just FWIW https://www.reddit.com/r/cfs/search?q=flair_name:"Remission/Improvement/Recovery"&restrict_sr=1The fact that we do not see many of these major improvement stories on PR thus suggests they are rare.
those are very reasonable thoughts.So if major improvements were common, we should be seeing a lot more of these posted on Phoenix Rising. The fact that we do not see many of these major improvement stories on PR thus suggests they are rare.
but even 100s is still giving me some hope, because the chances for recovery with HIV or other bad diseases seam to be much worse. so there is at least a chance.
I know reddit is kind of silly and a mess in general which is why I appreciate your community a lot more, but just FWIW https://www.reddit.com/r/cfs/search?q=flair_name:"Remission/Improvement/Recovery"&restrict_sr=1