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Adrienne Dellwo

Anxiety in Kids with Chronic Fatigue Syndrome

By November 2, 2012

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Research Brief

New research into anxiety in juvenile chronic fatigue syndrome suggests that nearly 40% of kids with this condition have anxiety problems.

Researchers identified five major themes surrounding this anxiety:

  1. Social loss and adjustment
  2. Uncertainty and unpredictability
  3. Feeling vulnerable
  4. Feeling "different"
  5. Effort made toward recovery

Much of the experience of study participants was identical to that of adolescents with other chronic illnesses. Additionally, kids with chronic fatigue syndrome felt anxious over several things that were directly related to the condition, including:

  • Feeling unable to explain their illness
  • Bullying
  • Disbelief in the illness
  • Distrust from adults

My Perspective

When you're involved in the patient community, none of this is surprising. It's also easy to see that most of it applies to the adults with this condition as well. However, it's worthwhile research because it gives the medical community a better understanding of what these kids are going through.

I am disappointed that researchers didn't address physiological reasons anxiety, several of which have been linked to the adult form of the illness.

I wasn't diagnosed with fibromyalgia until I was well into my 30s, but I've had chronic pain and fatigue for most of my life. I can definitely relate to what the kids in this study are going through (although I'm sure their health is far worse than mine was at their age.)

I can say from experience that when the adults in your life don't believe something is wrong, it's devastating. You doubt your own experience, question your sanity, and learn to hide it and try to act "normal." As a child, I was ashamed of my pain and other problems, and that's given me extra hurdles as a chronically ill adult.

I hope this study makes doctors, parents and teachers take a look at their attitudes toward these kids, so they can stop compounding the problem and focus on positive steps.

What was your experience with illness as a child? Do you think the factors identified in the study contribute to your anxiety? Leave your comments below!


Photo © Comstock/Getty Images

November 2, 2012 at 7:49 am
(1) Saffy says:

I was diagnosed with Chronic Fatigue Syndrome when I was 13 (in 1989). I missed half a year of school and had to be home-schooled.

Then, we moved to another town where my new doctor didn’t believe in the diagnosis. I pretty much spent my high school years trying to pretend that I wasn’t sick (even though I was tired all the time).

I think that this may have contributed to stress from my pushing myself more than I should have – which, in turn, led to other chronic illnesses (RA and FMS).

It wasn’t until I was in my 30s that I finally began to find some helpful supplements and medications. And, I finally had to admit to myself that I really am sick. Quitting work and going on disability was one of the hardest things I ever had to do (I had hoped to get my phD and become a professor – but I barely made through my masters – when my symptoms really flared up again).

I’m glad that the illness is more accepted than it was when I was young, but I can certainly empathize with young people struggling with the diagnosis today.

November 2, 2012 at 3:27 pm
(2) Chris says:

Nothing against your post, but it’s enraging that this is what some idiots decide to do with these kids? Like you said, the patient community knows the deal. It’s been shared among us, told to school officials, told to government officials. Only the bullying was notable (as it always is now, though we as a species will ensure it continues). Sure, your absences alone make you different, a target. Then again, I wonder if the study noted how much time these kids can’t be bullied because they’re bed-bound and can’t go to school.

BTW, Esther Crawley is a prominent UK “pediatrician” helping to push Phil Parker’s psych-yourself-out-of-it Lightning Process onto British children with ME, with L120,000-plus in grant support and the backing of their NHS. The coverup continues.

November 2, 2012 at 3:56 pm
(3) Rachael says:

The study from Adrienne’s article – click on new research: Why do young people with CFS/ME feel anxious? A qualitative study.
I think the question we should be asking ourselves is “which came first the chicken or the egg?” Are highly sensitive and anxious children more vulnerable to develop illnesses like ME/CFS (which I believe is an autoimmune illness) because of their innate brain neuroanatomy/neurochemistry (dopamine storage capacity re: amygdala)? Or, are children more likely to become anxious after developing ME/CFS? PET scans and MRI studies found that people with more dopamine stored in their left amygdala were far less likely to score high on tests for anxiety.

Read more: Low Dopamine & Anxiety


November 3, 2012 at 7:34 am
(4) Taliba says:

I agree with Chris. It’s disappointing that research dollars are spent on something so obvious. Some doctors really do need things spelled out for them, I guess.

The last thing we need to do though is stigmatize ourselves or these kids any further with the ‘you’re sensitive therefore you got sick’ psychobabble crap.

For the love of pete, we’ve been fighting for recognition that our symptoms are physical and the result of a virus for years, let’s not use this kind of study to open that can of worms again.

November 3, 2012 at 10:19 am
(5) Rachael says:

Taliba said: “For the love of pete, we’ve been fighting for recognition that our symptoms are physical and the result of a virus for years.”
Our symptoms are definitely physical, but my case of ME/CFS was not caused by a virus. My ME/CFS was the result of extreme aerobic exercise (pushing myself beyond my limit) and drinking that chemical poison, aspartame. Others will tell you that their ME/CFS occurred after a vaccination; a trauma, an infection; a chemical exposure, and yes, also a viral onset. ME/CFS is probably caused by a disturbance to the immune system in those who have a genetic predisposition to develop an autoimmune illness.

November 4, 2012 at 8:10 am
(6) Nancy A. says:

I am 59 now. At about age 30, I developed symptoms of CFS. At age 33, I was diagnosed with fibromyalgia, and a few years later a CFS/ fibromyalgia specialist in NYC diagnosed me with both conditions.

On-and-off throughout my adolescent years, I suffered from anxiety and depression. I also began at an early age to suffer from ADD and OCD (which still continue to this day) — these diagnoses weren’t common knowledge back in the 60′s when I was a teenager. Needless to say, I suffered a lot and my teachers didn’t understand. I also was teased and bullied by kids at school. I did get some psychological counseling in my late teens and 20′s which helped to some extent, and I’ve been on various antidepressants over the years.

I do believe these problems are related to my CFS and fibromyalgia since our brains and bodies are connected, and the mental problems are due to chemical imbalances in our brains and nervous systems. I definitely still have problems with hypersensitivity in general.

I really feel for young people with CFS and fibromyalgia. It’s hard enough for us adults to cope with these illnesses. We need more mental health professionals who are trained to help young people cope with chronic illness, especially “invisible disabilities” llke our own.

November 5, 2012 at 4:01 am
(7) Pinkie says:

Hi all

i know how it feels to have chronic pain at a young age. they use to say i fake my pain even today at 39. No one know how we we feel with FBM. my boss ask me to act as his PA, i told him that my condition does not like stress as i know the position cause stress. to other people we look like we don’t have ambitions or we lazy. they don’t know what we go thru per day. i a have decided not to stress with others and make sure i take care of myself. sometimes i limp and when i don’t limp it’s like i play games when it suits me. I’m tired of heartless people, remember this happen since i was 12yrs. i went thru hell even at school with hobbies, i just want to say to young people with the condition, be firm and know you did not ask for it.

November 6, 2012 at 9:52 pm
(8) Andrew says:

Given that only a minority of children with CFS suffer from anxiety and this rate is very similar to that of other similarly disabling chronic conditions, the most likely explanation is that the anxiety is an effect rather than a cause of CFS.

Anecdotal stories about patients who did or did not have anxiety are not necessarily helpful because there is no way of knowing whether it is the norm or not based on one case.

November 19, 2012 at 11:46 pm
(9) Dlee says:

For me the CFS caused the anxiety. Never being able to plan , cancelling engagements. Etc.

February 8, 2013 at 4:28 pm
(10) Marjorie says:

I suffered from chronic fatigue and fibromyalgia while I was fighting toxicosis. I was affected by toxic mold to the point of disability, and had extreme fatigue, zero energy, insomnia, body aches all the time, flu-like symptoms, (plus all the heart, head, and lung stuff that accompanies a toxicosis), until I detoxified sufficiently.
Chronic fatigue and fibromyalgia are linked to a) a toxic body burden, and b) low glutathione levels.
I actually started a website based on my experience, and how I recovered. This post explains glutathione well, in relation to the diseases glutathione deficiencies are linked to, as well as its role in body detoxification.
I hope this helps someone who has been searching for answers.

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