This post contains a group of chronic fatigue syndrome questionnaires (ME/CFS surveys) and serves as a short companion to other, more detailed blog posts. Post I introduces Dr. Robert Naviaux’ research on the cell danger response (CDR) and how ME/CFS represents a metabolic state of freeze. Post IIA describes how the cell danger response gets stuck to cause disease. Post IIA contains 4 surveys on different types of adversity and exposures that cause the CDR to get stuck. This companion post contains the same 4 ME/CFS surveys, but with only brief descriptions of each one.
I’ve developed these surveys based on studies about risk factors for diseases other than ME/CFS.
Your responses will give you a context for making sense of your symptoms from Dr. Naviaux’ emerging new paradigm of disease. They will also help my own informal research.
When you fill out surveys on this page, your answers will automatically also be added to the same survey in the companions blog post IIA.
You will see graphs of all the responses, including your own, after you click the submit button.
ME/CFS Surveys 1: Adverse Pre-Onset Experiences (APOEs)
Cell danger signaling research explains that chronic fatigue syndrome reflects a body caught in a metabolic state of survival. This very real, physiological state is similar to hibernation or freeze.
ME/CFS is affected by nervous system perceptions of threat following exposures to environmental stressors such as infections, chemicals, as well as physical and psychological trauma. It is not in your head.
This survey gives an idea of the kinds and number of adverse exposures that contributed to your onset of ME/CFS. It includes a score of up to 15 for how many different triggers you may have experienced in the year before onset.
ME/CFS Surveys 2: Adverse Babyhood Experiences (ABEs) 1.0
The new understanding of disease explains that life experiences interact with genes to influence gene function.
This means that life experiences and other environmental exposures play an important and under-recognized role in risk for autoimmune and over 100 other diseases. They are believed to affect risk for ME/CFS.
These 30+ questions about adverse babyhood experiences (ABEs) are covered on three pages. They do not include all possible adverse experiences.
ME/CFS Surveys 3: Expanded Adverse Childhood Experiences (ACEs+) 1.0
I’ve created this expanded version of the original Adverse Childhood Experiences (ACE) survey to provide a better sense of the types of experiences that affect risk for chronic diseases. These are likely risk factors for ME/CFS just as they are for other diseases.
These 30+ ACEs+ questions are covered in three pages. You will see your score on the last page and a set of graphs after you click submit.
ME/CFS Surveys 4: When ME/CFS is Triggered by Infection 1.0
I’ve created this survey to get a sense of whether there are differences in histories of people whose ME/CFS is triggered by infections and those whose disease is triggered by something else (or by unknown triggers).
* Please take the survey even if your ME/CFS was not triggered by an infection. This will help identify potential differences.
You will see graphs of all the responses after you click submit.
Why Does it Matter?
Research in epigenetics, brain development, embryology, the cell danger response, brain plasticity and more support a new paradigm that suggests symptoms of chronic diseases, including ME/CFS, may be more reversible than we have realized. This does not mean that chronic fatigue syndrome or other diseases are psychological or all in our heads. It’s because life experiences become embedded in our bodies and affect how our genes function. This process, which occurs through epigenetics, can be reversible.
You’ll find a list of tools that support healing from this new perspective of disease, at the bottom of the companion post: Part IIA: ME/CFS and How the CDR Gets Stuck.
A future post, Part III, will provide more detail on approaches for working with symptoms.
Free Surveys Download
Want to take the surveys on your own time? Includes all 4 surveys.
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Read the Post in Free PDF or Kindle
You can download this post or part I below – the forms will appear momentarily.
I. ME/CFS and Freeze: A Metabolic State of Hibernation That is Not in Your Head
IIA. ME/CFS and The Cell Danger Response: How the CDR Gets Stuck in Freeze (Surveys)
The Cell Danger Response: The New Disease Paradigm (Diabetes, Metabolic Syndrome, ME/CFS and Beyond)
Deborah Boyar says
Heroic, brilliant, generous work compiling and simplifying all this data and making it so graphically clear and user-friendly. Thank you for your service to humanity.
Veronique Mead, MD, MA says
Thanks so much Deborah! Glad the graphics are helpful – I had fun finding the baby bear graphics and am really wanting to make this information as accessible as I can :-)