Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

[lansbergen]

Early intervention is of course very helpful, but I know a woman in our local support group who was sick for 16-17 years, was housebound for five of those years and bedridden for two, yet recovered and went back to school at age 42 in 2008. The last photo I saw of her was from 2016, and she looked fine. I'm going to try and contact her to see how she's doing...

I know one can improve after years. I was dying and have improved a lot but why suffer for years when early intervention can prevent becoming very severe. If I had known when it started what I know now it would not have become so bad.

 

[dannybex]

I know one can improve after years. I was dying and have improved a lot but why suffer for years when early intervention can prevent becoming very severe. If I had known when it started what I know now it would not have become so bad.

I completely agree. Hindsight is always 20/20, and I think one can learn a lot from the past, both good and bad. I sure wish I hadn't taken things for granted when I was doing "better". Can't turn back the clock though...

I don't think anyone chooses to 'suffer for years' but just don't have or aren't aware of the possible interventions, which are are almost always different for each patient, depending on their triggers, etc.

 

[Martin aka paused||M.E.]

I know one can improve after years. I was dying and have improved a lot but why suffer for years when early intervention can prevent becoming very severe. If I had known when it started what I know now it would not have become so bad.

Hmmm...
Yes that's true. I have been a mild case for years (with some "moderate days"). Then, two years ago, my psoriasis broke out. Ironically that was the best time for many years (regarding health). Right after the outbreak of the autoimmune disease, my ME was completely gone for two years. And had no PEM, even if I heavily stressed my body. I could travel many countries, did cliff jumping and mountain climbing, worked 10 hours a day, worked as a DJ on the weekend and was a body builder - without ANY problems (!). So there is no irreversible damage going on, definitely! And I can still feel my "old body" on my better days.

But from your understanding: What does that mean, early intervention? How to intervene if there is no approved treatment for this nightmare? Pacing?

Don't get me wrong: I am a big fan of damage control. But if I only knew what to do in this early stage of my ME being switched from mild to moderate... except of pacing.

Thank you!

 

[lansbergen]

But from your understanding: What does that mean, early intervention? How to intervene if there is no approved treatment for this nightmare? Pacing?

Of course pacing and research, research research to find a diagnostic test and meds to interfere.

The diagnostic test is the most important. Without it you can not select research participants nor select patients to treat.

 

[garcia]

The truth about Trevor Marshall is finally revealed: