From my perspective, the most important thing to remember when you receive the diagnosis of CFS is that you’ve been thrown into a category with thousands of other patients based on weak criteria. That CDC definition covers A LOT of territory. In other words, we don’t all have the same disease.
Decades from now, I’m sure that medical research will identify a few diseases that will be culled out of the CFS basket. Some of our currently known autoimmune diseases were formerly thrown in with CFS.
So you’ve got CFS but which version do you have? AND what if one of the diseases in the basket presents differently based on the individual patient’s underlying genetics and complicating conditions? That’s a lot of variables in play.
In my book, the first step in the protocol is – Understand Your Version of CFS. You can read well researched articles on CFS all day long which discuss its possible causes/treatments/solutions but you won’t know if any of it applies to you unless you have a solid reference point to yourself. The strategy is to generate real data - HARD data specific to you.
I can already hear the groans coming from readers. The list of ‘must dos’ for a CFS patient is already overwhelming and impossible most days. It’s ridiculous to think that a patient could take on another chore. And that’s a fair perspective. When I was sick, I felt the same way. But for almost two years, I wasn’t getting anywhere. And I had no real baseline to use to evaluate my progress or decline. And please don’t think that you can trust your impaired CFS memory to recall how you’ve been doing for the past week, let alone a month or a year.
We all know that the definition of insanity is doing the same thing over and over again and expecting different results. The day that I accepted that my ‘going nowhere but down’ path wasn’t going to cut it for the rest of my life, I started writing things down. So collect data every day. Day by day. Boringly, day by day. Treat yourself like a lab rat – a case study of one. As the data accumulates, you’ll begin to see what your version of CFS looks like (more on that in future blogs).
So what kind of data do you collect? If you’ve been collecting data that was helpful to you, please COMMENT or send your ideas in and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,