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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Support
Why isn’t there a support group for ME/CFS?It is much needed for support that is lacking and for understanding the complexities of the illness.
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@db72 Phoenix Rising member also. 33 years with ME/CFS for me .. I have much respect for someone 40 years in. I offer my honesty, experience and empathy - it's all I have. Personally, I am no longer searching for a medication or treatment. Since around year 15, I have been making the slow transition from longevity of life to quality of life. Some (Medical Pros and also forum members) have suggested that this is "giving up". For me, it's the opposite of that. Everyone more or less has to find their own path. I have meditated (in my own custom manner) for over 70,000 hours in the last 30 years; it has been invaluable, and it is my main coping skill. However, I have no intention of presuming that what works for me, would work for anyone other than myself. These forums tend to have alot of 'try this med' kind of advice, which kind of makes my head spin. Maybe this is similar to what you are feeling.
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3 Reactions@quilterfingers NIH used to rule ! But, for how much longer? I hear 'ya.
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1 Reaction@haarvee yes, we are on the same page and it’s not giving up one iota. It’s being real after decades of listening to this, that, and the other “solution” all to zero avail. If I had all the money back I’ve spent on vitamins, supplements, useless tests ….. I’d be rich, 🤣.
Acceptance is the beginning of contentment. And contentment is the key to finding joy in the blessings we still have. I’ve known plenty of healthy and wealthy people who are utterly miserable.
And it’s not that I wouldn’t gladly welcome a legitimate new finding that offers real help, but that’s not happening yet.
Wishing you peace and happiness this holiday season.
@slatesslates1 Seems it's not yet available to the public. What happens if one gets the test, and tests negative to the illness even though suffering for many years? What does THAT do to your head ? (All those doctors that didn't believe us, etc.) I would be devastated. I can be a glass half empty kinda' person at times .. don't listen to me !
True, but there are many types of testing that can give false positive or negative results as well as Doctors. Medicine is FAR from perfect. All we can do is hope. This test seems more specific using genetics hopefully more accurate. Other CF testing is a bit more unspecified. Worth the try once it comes out. Hope you can find answers and peace of mind.