The US Centers for Disease Control and Prevention (CDC) has published a long paper that seems to be based on a conference about the adverse effects natural disasters have on people with chronic fatigue immune dysfunction syndrome (CFIDS, also known as myaglic encephalomyelitis, or ME, and chronic fatigue syndrome or CFS). This is quite relevant to my recent post about how I developed PTSD due to a natural disaster two years ago.
This is a lengthy PDF you can download with multicolored graphs and charts and bullet points, oh my!
The first 46 pages are not that useful and are somewhat annoying, but there’s some validating stuff after that. For instance, it lists various physical, cognitive, emotional, and behavioral symptoms that commonly arise from stress or trauma. The heading for one page is “In people with CFS, a natural disaster worsens all symptoms of CFS.” Below that are bar graphs that show relevant data.
Perhaps two of the most important points it makes are these:
1. Any form of stress is harmful — including long-term outcomes — to people with CFS,
and
2. People with CFS usually function better in an emergency and then get much sicker after the adrenaline wears off. (Referred to in the CFIDS world as “crashing”).
In fact, I’m going to type out the page that addresses this because I think this is a hard concept for most people to grok: A hallmark of CFIDS is “post-exertional malaise,” which means that starting about 24 hours after any type of physical, mental, or emotional exertion, the person with CFIDS gets much sicker (crashes). These crashes can last for days, weeks, months, years, or forever.
It was hard for me to understand when — many years ago — my best friend’s house burned down (she also has CFIDS), and I was also displaced at the time, and we both totally overfunctioned. In fact, she was more functional than I was, and her situation was much worse. We both did things we could never normally do, and we joked about horrible disasters being the cure for CFIDS. Of course, that did not turn out to be the case.
Page 57, under the heading, “Essentials of Disaster Response for Patients with CFS,” it says:
- Animal studies demonstrate that the stress response takes priority over sickness response
- In clinical terms this means that people with CFS will often perform normally in times of life-threatening emergency
- Data suggest that the big risk for CFS patients is that disasters can trigger long-term declines in functioning.
So, there it is, folks. People with CFIDS have been saying it for decades, but now the CDC has published a document about it. Hopefully this will lend our experiences more credibility in the minds of our health care practitioners, our friends and families, and the general public.
It’s not a bad reminder for us to tell ourselves, either. Even though I didn’t lose power due to the storm, I have been more than usually exhausted, in pain, and cognitively impaired since the weekend. I have been trying to power through it (you may have noticed how many blogs I’ve posted, although they were not particularly coherent, pithy blogs), because I am ambitious, bored with being sick, and tend to judge myself harshly for “not being productive.” Good time to remind myself of what I so often try to convey to others: Being sick is a full-time job. When you have to deal with a stressor, like a PTSD flare, you’re putting in overtime. The illness doesn’t like that, and charges you payback. So says the CDC.
– Sharon, the muse of Gadget (floor potato), and Barnum, SDiT, anti-anxiety dog and bed potato
After Gadget 