In November 2016, ProHealth conducted a survey about cognitive impairment.
Cognitive impairment, also known as “brain fog,” is a symptom common in patients with ME/CFS and Fibromyalgia. “Brain fog” is frequently described as a slowing of brain processes but it can also refer to a loss of short-term or working memory, difficulty retaining information and making decisions, and many other problems related to mental function.
Cognitive impairment presents a major obstacle to patients, so much so that it sometimes results in a loss of employment. We are very much defined by how our minds work, so the slowing of mental processes leaves patients feeling as if they are losing their intelligence, which can lead to a loss, not just of a job, but of self-worth. This presents a huge burden to patients who are already managing myriad other symptoms.
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Of the 215 people who took the survey, 83% had been diagnosed with fibromyalgia and 44% with ME or CFS. Five percent had Lyme disease. Twenty percent reported having other chronic illnesses as well, with hypothyroidism being the most common. The vast majority had been ill for more than five years (88%), with 34% reporting illness of more than 20 years. Most patients (63%) rated their illness as moderately/severely to moderately ill (3-5 on a scale of 1-10).
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Of all the cognitive problems experienced by patients, forgetfulness, difficulty concentrating, and difficulty finding the right word ranked the highest (90%). The majority of respondents also reported difficulty making decisions (68%), memory lapses (78%), and general mental slowness (78%). Sixty-five percent of respondents also reported that confusion was a serious problem.
In addition to these problems, respondents reported “Forgetting uses of common items, like I have a toothbrush, what do I need to put on it to brush my teeth out of the three things on the sink, deodorant, toothpaste, or antibiotic oinment”, “Difficulty recognising people I don't know well, or in context, and remembering names," “Difficulty holding multi-choice options to achive correct combinations”, trouble counting, "I read something over and over but do not comprehend", inability to multitask, “Disorganised in my work – tend not to be as effective as I used to be.Office messy and I find the thought of decluttering just overwhelming , so tend to let it all build up", difficulty learning new things, and “lapses in awareness.” It was clear from the 47 additional comments made in this section that loss of cognitive function is a major obstacle, leading to intense frustration. Over 85% of respondents classified their cognitive impairment as moderate to severe. Given the range and severity of cognitive impairments, it is not surprising that 62% of respondents reported having to change jobs, or losing a job.
Of the factors that exacerbated cognitive impairment, stress ranked the highest at 90%. Eighty-four percent reported that too little sleep worsened cognitive function. More than half reported that standing too long worsened cognitive function, and 67% reported that complicated mental tasks made cognitive impairment worse. Thirty-two percent reported that exercise made cognitive impairment worse. The most commonly reported exacerbation in the comments section was overstimulation (e.g. too much noise, too many people talking, multitasking). But respondents also mentioned chemical exposure, weather changes, exposure to mold, pain, heat and sleeping medications.
Respondents reported a variety of treatments for cognitive impairment, ranging from Meditation to Ritalin. Of all pharmaceuticals, the most common were antidepressants, with seventy percent of respondents reporting having taken antidepressants. Thirty-eight of those patients reported that antidepressants had a moderate positive effect, with only 4% reporting significant improvement. Fewer patients had tried pharmaceutical stimulants (e.g. Ritalin, Adderall), but over half reported some improvement (65%). (Seventeen percent reported significant improvement with pharmaceutical stimulants.) Caffeine got similar results, with half of respondents reporting mild to significant improvement. Half of the respondent reported that thyroid hormones were beneficial.
Other types of therapies patients found to be most effective were fish oil (26%) and vitamin B12 (46%). In addition, respondents frequently mentioned that rest helped, as did vitamin B2, pacing, giving up gluten, high-dose magnesium, opioids, CoQ10, turmeric, meditation and stress reduction, and a low-carb diet.