In October 2014, 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 1392 people who took the survey, 89% had been diagnosed with fibromyalgia and 28% with ME or CFS. Twenty percent reported having other chronic illnesses as well, with autoimmune diseases (Hashimoto’s, lupus, MS) being the most common. The vast majority had been ill for more than three years (over 90%), with 22% reporting illness of more than 20 years. Most patients (64%) rated their illness as moderately/severely to moderately ill (3-5 on a scale of 1-10).
Of all the cognitive problems experienced by patients, forgetfulness ranked the highest (94%). Close to 90% of respondents reported difficulty concentrating, and 92% reported difficulty finding the right word when speaking (word searching). The majority of respondents also reported difficulty making decisions (69%), memory lapses (82%), and general mental slowness (76%).
In addition to these problems, respondents reported “mental exhaustion with little cognitive exertion”, “heavy feeling in and around head, “not being able to speak normally while doing something else”, slurred speech, “inability to calm rapid jumping thoughts”, inability to multitask, “forgetting mid-sentence what I was saying”, loss of creativity, and “feeling dumb.” It was clear from the 179 additional comments made in this section that loss of cognitive function is a major obstacle, leading to intense frustration. Over 80% of respondent classified their cognitive impairment as moderate to severe. Given the range and severity of cognitive impairments, it is not surprising that 55% of respondents reported having to change jobs, or losing a job.
Of the factors that exacerbated cognitive impairment, stress ranked the highest at 94%. Ninety percent reported that too little sleep worsened cognitive function. Nearly half reported that standing too long worsened cognitive function, and 66% reported that complicated mental tasks made cognitive impairment worse. A minority of patients (19%) reported that exercise made cognitive impairment worse, corresponding roughly with the percentage of patients who reported having a diagnosis of ME/CFS. The most commonly reported exacerbation in the comments section was overstimulation (e.g. too much noise, too many people talking, multitasking).
Respondents reported a variety of treatments for cognitive impairment, ranging from Qi Gong to Ritalin. Of all treatments, the most common were antidepressants, with sixty percent of respondents reporting having taken antidepressants. Thirty-five percent of those patients reported that antidepressants had a small positive effect, with only 4% reporting significant improvement. Fewer patients had tried pharmaceutical stimulants (e.g. Ritalin, Adderall), but over half reported some improvement. (Twenty percent reported significant improvement with pharmaceutical stimulants.) Caffeine got similar results, with 47% of respondents reporting mild to significant improvement.
Other types of therapies patients found to be most effective were yoga (48%) and vitamin B12 (41%). In addition, respondents frequently mentioned that rest helped, as did magnesium, massage, high-dose vitamin D, walking, deep breathing exercises, CoQ10, Hyperbaric Oxygen Therapy, meditation and stress reduction, and D-Ribose. The most effective coping strategy was keeping lists.