This is an important read for LC advocates. I am an advocate for myalgic encephalomyelitis (34 years sick). You are right to be worried about the "ME/CFS" orgs and HHS, NIH & CDC.
My advocacy focuses on the importance of properly diagnosing patients. This lumping together of patient groups has effectively buried ME for decades. Watching this approach being duplicated to bury the LC patient group that is similar to ME is a huge red flag. The science is showing LC & ME are not identical but it looks like you are facing the same systemic malfeasance.
This is an important read for LC advocates. I am an advocate for myalgic encephalomyelitis (34 years sick). You are right to be worried about the "ME/CFS" orgs and HHS, NIH & CDC.
My advocacy focuses on the importance of properly diagnosing patients. This lumping together of patient groups has effectively buried ME for decades. Watching this approach being duplicated to bury the LC patient group that is similar to ME is a huge red flag. The science is showing LC & ME are not identical but it looks like you are facing the same systemic malfeasance.
OMG this is right on the money. You laid it out perfectly. Thank you.