Science AMA Series: I’m Professor Mady Hornig at Columbia University’s Mailman School of Public Health, Ask Me Anything about chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)!

Thank you for doing this AMA, Dr. Hornig!

I am a 23 year old woman, and I have been sick most of my life.

I have GI issues (GERD, gastritis, IBS), hypothyroidism, and undiagnosed Joint Hypermobility Syndrome. My GP now wants to diagnose me with ME/CFS, as I do have all the symptoms, but I know that many people with Joint Hypermobility Syndrome (EDS Type 3) are misdiagnosed with ME/CFS - and I do not want to be one of these. Most of my family have undiagnosed JHMS/EDS, but I suffer more from the joint issues than the rest of them. (I have been unofficially diagnosed by several physical therapists.)

Some of my symptoms: Unrefreshing sleep, post exertional malaise, muscle pain and weakness, joint pain, subluxation (and, if I am not careful, dislocation) of joints, hypermobility, GI issues (many food sensitivities, I am on the Low FODMAP diet for IBS), nausea, dizziness, cognitive issues like sudden bad memory and difficulty speaking, lack of concentration, fatigue, sensitivity to light and sounds, swelling hands and feet, clouded vision, panic attacks, anxiety and depression, fainting. I have periods going from hours to days where I can't stand up for more than half a minute (more or less) without loosing consciousness.

When my GP first suggested ME/CFS I took it as an insult, as it felt like he was saying that all my daily pain and struggles were only in my head - and in that way invalidating them - so I was relieved when I read about your recent study a week ago. However, I still don't feel that the chronic fatigue is it's own diagnosis in my case, only that it is part of the symptoms for EDS.

Could I have both EDS and ME/CFS? Is there a reason behind why the symptoms of EDS and ME/CFS are so similar? (Are they related?) Could people with EDS be more likely to get ME/CFS? When will the blood test be available (especially outside the US, as I am in Norway), and do you think it will ever become a standard blood test?

Again, thank you doing this research.

/r/science Thread