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SURVEY RESULTS: Cognitive Impairment II

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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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Survey Results

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).

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.

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2 thoughts on “SURVEY RESULTS: Cognitive Impairment II”

  1. nilaWilliams says:

    When I first became severely ill in 1968, I was not treated for anything except anxiety.. As the years past, I learned to take care of myself the only way I knew what helped.. Hot Tub for one hour and then wrap myself in a blanket.. I felt like hell but after a half hour I felt so much better. I concluded that it raised my body temp. which has always been normal at 97..Then I took B-12 complete with vitimans. I added something called Turpentine. ( It was a natural kind of Musinx) Then I was put on Klonophin for panic attacks when sick. All the brain things you talk about are true in my case. I could not read and comprehend a sentence nor maintain it.. I felt a strange pressure on my brain.. I lost speech ability and of course all the other symptoms that go with CFIDS..I was so weak, I could hardly walk.. This flare up of the cognitive symptoms included where finally diagnosed by a doctor in 1980..Brain showed a lack of oxygen in the fourtoal lobes and some in the bascil ganglion area. Complete Rest was all that helped me.. I mean.. I would not stay in bed..not me.. I drove to the nearest Park with my three little boys and as they played, I laid in a lawn chair most of the day. I looked at the beauty of nature.. Anything to get me to stop thinking about what could be wrong with me.
    This was along time ago.. I’m 77 now and recently have been having the same kind a cyclic flare up’s and remission. Hardly have any remisstions any more. The scareist brain symptom when I would have that lack of oxygen was I would get lost, go to the wrong bank.. This was transient.. not altimer’s.. Would go away with complete rest and as I added sleep medication that made a big difference. The doctor gave me elavil at 50 mg at bedtime. I NEEDED THAT COMPLETE REST. THEY EXPLAINED that I was not going into the 4th stage of sleep.. now it’s years later and I’m still haveing flair ups and still having brain symptoms.. never as severe as in the beginning. YA KNOW FOLKS,,,THE DISEASE CAUSES ANY HUMAN TO EXPERIENCE ANXIETY FROM CHEMICALS OUT OF BALANCE BUT THE WORST PART WAS NOT KNOWING…CONSTANT STRESS FROM THE REPERCUSIONS OF NOT KNOWING WHAT WAS WRONG.. I COULDN’T HOLD DOWN A JOB, I DID RAISE MY BOYS.. yA… THEIR WERE LITTLE LIFE SAVING CLUES THAT KEPT ME KNOWING IT WAS A PHYSICAL ILLNESS.. LIKE DOCTOR FINDING WEIRD LOOKING WHITE LYMPHOCHETES.. LOW BLOOD PRESSURE AND FLARE UP’S AFTER ANY EMOTIONAL STRESSFUL PERIOD. tHREE BOYS AND ALONE RAISEING THEM WAS STRESSFUL IN ITSELF. ANYWAY, JUST IN THE PAST FIVE YEARS THEY HAVE DISCOVERED THE LATENT HERPE’S fAMILY THAT i MENTIONED ABOVE AND HAVE DIAGNOSED THEM FROM TIME TO TIME.. vALTREX HELPS ALL BUT CMV.. THERE’S ANOTHER DRUG THAT STARTS WITH A G THAT GIVEN IN AN IV HAS HELPED ME. THE INDIAN DOCTOR GAVE ME TWO INJECTIONS AT ONE HOUR EACH.. IT ACTUALLY PUT ME IN REMISSION ALONG WITH DOXICYCLINE..SIDE INFECTIONS ARE ALWAYS A PROMBLEM..

  2. AniAnaree says:

    I have undertaken a big liver cleanse for the last six months and I notice a huge difference in brain fog. I am far less confused. Hip, hip, hooray!

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