I sent a simple meme showing a well person after ADL and an ME person after ADL to my whole family and several friends. I got two replies. It's one thing when a doctor just doesn't get it, but to be invisible to family and friends is shattering. What do we have to do??
I agree that May Awareness is a frustrating time for those of us who've seen so much misinformation over the decades.
It is so widespread, and coming not just from the psych cabal and the CDC/NIH in U.S. and NHS in U.K., but from most of our so-called patient organizations. These orgs may have started with good intentions, but they keep switching course (for very questionable reasons) and supporting gov't CFS and ME/CFS "definitions".
Their duty should be to fight for accuracy (not the grouping of multiple illnesses under a big umbrella), proper testing for differential diagnosis. and treatment.
Supporting and sharing the good info in the ME-ICC is like swimming upstream.
I keep sharing and recommending your writings and Hillary Johnson's, and the work of luminaries like Dr. Byron Hyde, Dr. Maureen Hanson, and others. It's all I've been able to do in recent years (due to M.E.) and I fear that it will never be enough to turn the tide.
Please keep doing what you do. It is needed and appreciated ore than I can express.
Thank you for your informative publications Colleen. Hard to believe this illness has been out there for 40+ years without much progress and treatment options. I do believe the cause of ME is an infectious agent and I think some of the researchers are going down the wrong investigational path. Truly frustrating.
Very frustrating. It has been great to see more researchers looking at viral reservoirs and enterovirus connection... progress... soooo slow... but progress.
I sent a simple meme showing a well person after ADL and an ME person after ADL to my whole family and several friends. I got two replies. It's one thing when a doctor just doesn't get it, but to be invisible to family and friends is shattering. What do we have to do??
Thank-you Colleen, for all of this.
I agree that May Awareness is a frustrating time for those of us who've seen so much misinformation over the decades.
It is so widespread, and coming not just from the psych cabal and the CDC/NIH in U.S. and NHS in U.K., but from most of our so-called patient organizations. These orgs may have started with good intentions, but they keep switching course (for very questionable reasons) and supporting gov't CFS and ME/CFS "definitions".
Their duty should be to fight for accuracy (not the grouping of multiple illnesses under a big umbrella), proper testing for differential diagnosis. and treatment.
Supporting and sharing the good info in the ME-ICC is like swimming upstream.
I keep sharing and recommending your writings and Hillary Johnson's, and the work of luminaries like Dr. Byron Hyde, Dr. Maureen Hanson, and others. It's all I've been able to do in recent years (due to M.E.) and I fear that it will never be enough to turn the tide.
Please keep doing what you do. It is needed and appreciated ore than I can express.
Thank you Allison. I deeply appreciate your support.
Thank you for your informative publications Colleen. Hard to believe this illness has been out there for 40+ years without much progress and treatment options. I do believe the cause of ME is an infectious agent and I think some of the researchers are going down the wrong investigational path. Truly frustrating.
Very frustrating. It has been great to see more researchers looking at viral reservoirs and enterovirus connection... progress... soooo slow... but progress.
Thank you for your efforts, much appreciated.
❤️
As usual an excellent piece, thank you👍💙
Thank you for that!
I wish I knew. The systemic bias that misrepresents the reality of our situation is deeply ingrained.
Thanks!