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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
Just Want to Talk | Last Active: Oct 15, 2023 | Replies (92)Comment receiving replies
Colleen,
Thank you for your recommendations. However, what I think those of us who have ME/CFS are looking for is an ME/CFS connect group that deals
just with this disease. One of the people who responded to my earlier post said "We are the forgotten ones." She is absolutely correct. I think if there were some place where we could talk to each other online, we'd all feel better and we might just come up with something. The doctors certainly haven't and I've visited two nationally known experts. Years ago I also participated in a Harvard study, gave blood, did a psychological test, and nothing developed from this study. It lasted between three and five years and was centered at Brigham Hospital. It would be wonderful if Mayo Connect gave us our own talk outlet. Please consider this. Please know that this is a distinct disease and shouldn't be lumped with other post-viral syndromes. I think those of us who are afflicted deserve to be heard and Mayo is the place to listen. Again, thank you for your time and interest.
Replies to "Colleen, Thank you for your recommendations. However, what I think those of us who have ME/CFS..."
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I agree with you one hundred percent, @petuniamom 567. I wish there were a connect group that deals just with CFS/ME so it would be easy to find the discussions/posts right away. I am new at Connect. Maybe it is because I have such a hard time concentrating, but I find it extremely difficult to even navigate through all of this, and it is taking a great amount of energy (the thing I have least of). I have only just begun, and I don't really want to give up right away. I get notifications for a lot of other groups, but not for CFS/ME. (I found one comment on my post by sheer coincidence after using a lot of time trying to figuring out.)