Understanding more leads to better discussions — and hopefully, faster diagnosis, better treatment — and eventually a cure.
This video gives solid understanding and rationale for changing the name and the criteria for diagnostics, plus some tips and guidelines for doctors.
If you really want to understand CFS / ME or Fibro, please watch
After watching this video, I became convinced that the new definition of SEID is valid. It’s designed to help doctors diagnose quickly. What we’ve experienced is that the longer it drags on, the worse it gets. And as normal people who usually try to push through and move through pain or illness, this is a disorder that has the reverse effect. The more you try, the harder the recovery.
Dr. Larry Bergstrom at the Mayo Clinic Scottsdale sent us home with a discussion of lifestyle management. It included suggestions such as learning to pace, lowering stress, and eating anti inflammatory foods. He focused on lifestyle and learning to cope — but really, that’s what we’d done for some 8 years already.
With SEID, it becomes clear that there are 5 major areas of the issue that can be addressed:
Pacing and PEM Reduction – Pacing can help reduce severity, but the trouble we face is that there are often no indicators that the line is crossed. How do you know when to stop when you don’t know you are tiring?
Sleep Disturbances — they say there are many ways to help, but not for the unrefreshing sleep issues most face.
Orthostatic Intolerance — POTS, Orthostatic Hypertension, Fainting — only thing we can figure out is it happens. It’s real.
Cognitive Impairment — Even recognition and patience would be helpful, but simply claiming brain fog is not enough to prove a disability claim. The testing done for short term memory only tests 3 hours, does not test processing time, attention to lots of details at once, or ability to sequentially process.
PAIN — Growing understanding of Fibromyalgia pain is helpful, but not all patients have Fibro.