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SURVEY RESULTS: What Triggered Your Illness?

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Last month, ProHealth editors Erica Verrillo and Karen Lee Richards conducted a survey on triggers and causes of fibromyalgia and ME/CFS: What Triggered Your Illness?

The results are now in.

You can read the results HERE.

What is the difference between a trigger and a cause?

Researchers and physicians distinguish between triggers and causes because they require different courses of treatment.  For example, while stress or coming down with another illness such as the flu may trigger shingles (aka herpes zoster), the cause is Varicella Zoster. As a consequence the treatment may be an antiviral rather than stress reduction techniques.

For illnesses like ME or CFS in which the cause is not known, or fibromyalgia, for which there may be several causes, it is important to gather as much information as possible from patients about what they believe triggered their illness. One of these triggers may well prove to be a cause. And even if none of these ultimately identifies the underlying cause, triggers can help identify risk factors.

Survey results

A total of 1080 people filled out the survey. Respondents were evenly divided between US residents and residents from abroad.

Of the US residents half (53.5%) had been diagnosed with FM, 14% had been diagnosed with ME/CFS, and a third (32.3%) had been diagnosed with both. The international residents showed similar proportions, with the highest being FM (46%). Joint diagnoses of both FM and ME/CFS followed at 29%. About a quarter (24.5%) had been diagnosed with ME/CFS alone.

Fibromyalgia

Triggers

For US patients with FM, the most commonly reported trigger was emotional stress (56%).  Respondents reported birth of a child, getting married, rape, domestic physical and emotional abuse, natural disasters, work and family stress, and being a single mom.

Surgery (25.5%) was the next most common trigger, followed by viral illness (16.5%), car accident (15%), upper respiratory infection (13%), exposure to mold (12%), and physical injury (11%). Less common triggers were heavy metal exposure, vaccination, mononucleosis, bacterial and parasitic infections. Some people (7%) reported having no trigger.

Among patients living abroad, the numbers were fairly similar: 57% reported emotional stress, 22% reported a viral illness, 20% reported surgery, 16% reported a car accident, and 15% reported an upper respiratory infection. Fewer than 10% reported exposure to mold or heavy metal exposure, vaccination, mononucleosis, bacterial and parasitic infections. As with the US respondents, 7% reported having no trigger.

Although childbirth was not listed as one of the possible triggers, difficult pregnancies, miscarriage, and childbirth were mentioned several times among both US and international respondents.

ME/CFS

Triggers

For US respondents with CFS the most common triggers were emotional stress (49%), a viral illness (29%), mononucleosis (22%), upper respiratory infection (23%), and surgery (19%).  The proportions were roughly the same for international residents: emotional stress (49%), a viral illness (31%), upper respiratory infection (15%), bacterial infection (15%), and surgery (14%).  Mononucleosis was less common than in the US (10.7%).

Nearly a quarter (23.5%) of the respondents reported tick bites, various serious illnesses such as cancer (and its subsequent treatments), chronic illnesses such as Hashimoto’s disease, acute diseases such as measles, as well as many accidents and injuries (ski accident, car accident) in the time period immediately preceding diagnosis. (One respondent reported being hit by lightning!)  While these triggers are seemingly disparate, it is clear that all of this group of respondents suffered physical trauma and/or infection prior to falling ill with ME/CFS.

Causes

Most US residents (50%) indicated that stress was the underlying cause (as well as the trigger) for their illness. Roughly a quarter of the respondents attributed their illness to a virus, but the same number also reported childhood trauma as the underlying cause. Genetic predisposition was identified by 20% of respondents, and surgery was identified as the underlying cause for 15.6% of respondents.

Responses from international residents were proportionally similar:  44.5% indicated that stress was the underlying cause of their illness, 31% attributed their illness to a virus, 21% to childhood trauma, and 18.5% to genetic predisposition; 11% considered surgery to be their underlying cause.

Given the overlap in percentages, it is clear that patients feel there are multiple causes. The combination of these, in the words of one patient, produces  a “perfect storm.”

“I think multiple highly stressful events over a short period of time, poor diet and lack of sleep contributed to weakening my immune system, which left me vulnerable to getting mono. Mono turned into ME/CFS, then a car accident a few months later was the final insult and resulted in FM.”

While many people indicated a series of recent injuries, mishaps, and stressors as  joint causes of their illness, quite a few mentioned childhood trauma and other early life events, such as childhood sickness. These fell into two categories, those who had childhood problems from which they never recovered (illness, vaccination), and those who only attributed childhood events in retrospect. After becoming ill in adulthood and looking back many people commented on various events of their lives which might have been contributing factors.

Commentary

Recently, Leonard Jason and colleagues compared experiences of ME /CFS in the UK and the US. The researchers found that the two groups differed in their perceptions of the causes of their illness. In the US sample, 95% thought that the origin of their illness was physical, whereas the equivalent figure in the UK was 79%. The authors found that the patients endorsing possible psychological influences had been previously diagnosed with or treated for depression, setting them up for an interpretation of their illness as psychological.

It is interesting to note that in this informal survey the proportions of people attributing their illness (fibromyalgia or ME/CFS) at least in part to psychological factors (both as triggers and causes), was roughly the same in the US and abroad. Roughly half of the respondents in both the US and abroad identified “stress” as a trigger and a cause, and a quarter of US respondents reported that childhood trauma was the underlying cause.

While it is impossible to speculate based on an informal survey, it is worth entertaining the idea that among the general patient population with these illnesses (that is, not necessarily identified by specialty practices or using the Fukuda criteria) psychological factors may be viewed as playing a predominant role in the development of fibromyalgia as well as ME/CFS. This may be the result of physicians’ perceptions, media portrayal, widely held cultural beliefs, or previous treatment for depression or other mental illness. In the case of ME/CFS, this perception exists in marked contrast to the recent IOM and P2P reports which stated that ME/CFS is not a psychological illness, a change in perception which was hailed as a breakthrough by the media and by ME/CFS advocates.

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4 thoughts on “SURVEY RESULTS: What Triggered Your Illness?”

  1. gbrown says:

    in 1988 i became ill overnight this result in 18 weeks of uncontrolable gastric and strange abnormal liver tests
    severely ill for 2 years [every body had me headed to boot hill]this improved over the years but 28 years later i am very cognitively damaged
    i have virally induced brain injury[shown on mri]
    i have had open heart surgery to replace an infected aorta valve the old one had large infection burn holes in the leaves
    this is clasic me coded g93.3 cfs is not me

  2. suez7@aol.com says:

    I think if you did a survey for what causes people to get cancer, or any other disease, most of them, or a large percentage would have had a number of tragedies such as, car accidents, rape, illness, etc. These things happen to mostly everyone. It’s called life. Why are you directing these situations to the onset of Fibromyalgia? I have never understood this. It is sleep deprivation causing our bodies not to rejuvenate the fluids to keep our bodies mobile, and pain free. How does mental illness, and car accidents work there way into this diagnosis?

    1. IanH says:

      There is a difference between cause and trigger (so they say).
      In simplest terms:

      Car accidents can cause spinal injury which in some people involves chronic immune system activity, which elevates pro inflammatory signalling. It is this pro inflammatory signalling which raises pain promoting proteins in the nervous system, hence the elevated pain sensitivity. These changes seem to require genes which render the person prone to this.

      Mental illness or more strictly elevated neural excitability (anxiety) causes changes in nervous system transmitters such as dopamine, serotonin, adrenaline (epinephrine) and noradrenaline (norepinephrine). There is a very strong connection between these nerve chemicals and the immune system, especially dopamine. There are dopamine etc. receptors on important immune cells such as macrophages and glia (brain macrophages) as well t-cells, b-cells and natural killer cells. Most psychological dysfunction causes changes in the uotput of these chamicals and in turn changes in the function of the immune cells.

      Deep sleep deprivation is often caused by such changes in neural messengers/transmitters. Although little understood, it is reasonable to speculate that sleep disturbances worsen some symptoms that may already have been caused by trauma, (mental or physical) and the consequent immune system disturbances.

    2. IanH says:

      There is a difference between cause and trigger (so they say).
      In simplest terms:

      Car accidents can cause spinal injury which in some people involves chronic immune system activity, which elevates pro inflammatory signalling. It is this pro inflammatory signalling which raises pain promoting proteins in the nervous system, hence the elevated pain sensitivity. These changes seem to require genes which render the person prone to this.

      Mental illness or more strictly elevated neural excitability (anxiety) causes changes in nervous system transmitters such as dopamine, serotonin, adrenaline (epinephrine) and noradrenaline (norepinephrine). There is a very strong connection between these nerve chemicals and the immune system, especially dopamine. There are dopamine etc. receptors on important immune cells such as macrophages and glia (brain macrophages) as well t-cells, b-cells and natural killer cells. Most psychological dysfunction causes changes in the uotput of these chamicals and in turn changes in the function of the immune cells.

      Deep sleep deprivation is often caused by such changes in neural messengers/transmitters. Although little understood, it is reasonable to speculate that sleep disturbances worsen some symptoms that may already have been caused by trauma, (mental or physical) and the consequent immune system disturbances.

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