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 
Thank you, thank you, thank you! This brought me to tears. I half-knew most of this about myself, but this clarified it for me and gave me permission to start accepting my current limitations a little more. That may help me manage my condition much better.
I’ve had disabling CFS for almost 7 years, which started originally after prolonged, severe stress–starting a new job I cared about and wanted to stick with, on the same week my mother went into the hospital for what turned out to be her terminal illness. She was an hour away from my home and job, and her condition worsened suddenly several times. A family member needed to be with her every day, but that was impossible unless I quit the job. I was extremely worried about her and took off many hours from the new job, miissing all my job training in order to be with her, which was a disaster for my job performance, as the office was total chaos when I started. I totally crashed after her death and our subsequent marathon effort to clear out her home. I had to quit work because I could not function, and I still can’t function very much.
I experienced the rush of stress hormones that let me push myself beyond normal limits, over and over. And then the rug was pulled out, bigtime when the emergency was over. Actually, I’ve always had that rush of stress hormones, as far back as I can remember, the ability to do much more than I normally can do in an emergency, and then a big crash. But 7 years ago, it got much worse.
I’ve taken care of my dogs and cats who were terminally ill, and the same pattern emerged–caring for them 24/7, sleeping very little, feeling stressed and pushing through exhaustion, and then crashing for weeks or months when they are gone.
I subconsciously knew this was a pattern, but you have helped me understand it much more. And the idea that being sick is a full-time job is both frightening, and a relief. And certainly true.
Thank you for the link, and expressing all this so clearly. It makes me think more seriously about moving away from an area that gets hurricanes and tornadoes fairly often. I always stress out when storms are coming, stay up all night watching weather reports, and then crash.
Hi Judith,
I find myself very moved by your comments, and surprised by the strength of my reaction. I’m glad you found this so validating. I’ve had CFS since 1995, and it does seem like even though I know so much about living with it, there are some things you never get used to, you know?
I definitely know what you mean about caring for your animals with terminal illness and the crash that ensues. I do wonder how the six months or year of my life after Gadget died would have been if I hadn’t spent the previous six months working so so so hard to make his life joyous and to try to save him, and then to help him have a good death. Of course, I can never know, and I don’t regret it, but I wonder if I wouldn’t have been so sick after if I hadn’t spent everything in my energy bank (and gone into energy debt) due to his cancer.
I would like to remain less stressed when difficult circumstances arise. Since I don’t tolerate exercise very much, I am going to work on breathing practices, which can be done without much physical effort. I think it’s possible to modify the stress response so that we don’t crash as much. To that end, I’m also taking Holy Basil (Tulsi) which helps reduce excess stress hormones and modulate the stress response.
It became clear to me a few years ago that I go into high-stress states and mild panic attacks very easily, and I realized that it came from from living in a stressful and threatening family environment as a child. I believe that the brain and endocrine system get programmed to react abnormally, and it is almost hard-wired in. But I think it can be modulated, at least to some extent.
Yes, there are some things you don’t really get used to. I still expect to be able to do what I used to do, and at the same time, I don’t feel like doing anything most of the time. It’s a little like being two different people.
I never talk about this with anyone, so reading your post has opened up a lot of powerful reactions. Thank you for sharing this.
For some reason can’t see the other comments, but maybe this explains why I’ve been unable to fall asleep and unable to wake up for my appointments this week. Hope no more hurricanes. Thanks for posting this, and for reading that horrific-sounding report from CDC…
deeply appreciating the posts on ptsd and this one. This spring I had a severe traumatic experience that left me with what I called ptsd–now reading your post helps me too to validate that….
Kendra, I’m so glad you found these posts helpful, although I’m sorry for the reason.