Results of CFIDS Association ME/CFS Symptoms Survey

I previously took a survey by the CFIDS Association regarding ME/CFS symptoms and which ones were worse.  The CFIDS Association has revealed the results of that survey and I thought readers might find it interesting.  Here is a little bit more about the survey by Suzanne Vernon, Scientific Director of the CFIDS Association:

In May we asked CFIDSLink readers, donors and members to respond to a detailed 15-item questionnaire to examine family history and patterns of symptoms and factors at onset of illness and that may worsen symptoms over time. In August we reported a preliminary analysis; this month we have more closely analyzed the symptom patterns you reported. Of the 1,200 survey responses, 1,100 were completed accurately for the analysis. The respondents were broken down into four age groups and the age at the date of the survey was calculated, as well as duration of illness.

To view all of the age groups, please use this link to view the table by Suzanne Vernon.  Here are some of the other results.

  • The largest group of survey respondents (almost 45%) were in the 41 – 55 age group. 
  • Each age group had more women than men.
  • The avg. age of CFS onset was older for the older age groups, each group still included those who reported onset at an early age. 
  • The avg. # of years of those sick in each age group was more than 5 years.
  • The most common symptoms for ALL age groups are post-exertion fatigue, unrefreshing sleep, muscle pain, & concentration problems.
  • The next set of most common symptoms for ALL age groups are headache, joint pain, sinus problems, eye sensitivity to light, depression, other sleep issues.
  • Some of the symptoms that are less common also seem to vary more by age group (Ex:  pelvic pain was more common in the younger age groups where urinary urgency was more common in older age groups). 
  • The less common symptoms were reported as more severe in older age groups.  According to Dr. Vernon, “This may be an indication of conditions that evolve and co-occur with CFS as individuals age and remain ill.”
  • The severity of unrefreshing sleep decreased slightly in older age groups. 

To view all of the symptoms included in the survey and to view Dr. Vernon’s graphs on this survey, please use the link below:

Symptom Survey Responses Indicate Cardinal Symptoms of CFS

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  1. Uh, so they did not evaluate any neurological symptoms besides “concentration problems”, never mind that CFS/ME is a neurological illness.

    Not surprising coming from an association known to be extremely wasteful with their research money. 😛

  2. Good point about the neuro symptoms. But neurologically, the headache, eye sensitivity, both are related to the nervous system. I wish they’d do a follow up study on the severity of symptoms involving the 5 senses, because I believe all of the problems people with ME/CFS have in those areas are actually CNS (central nervous system) in origin, & therefore not simply sensory deficits/issues, but CNS derangements.

    I have blurring of my vision for no apparent reason; the only thing a whole team of ophthalmologists could find was “dry eyes.” But artificial tears don’t help clear the vision very often, & if they do, it doesn’t last long. This can only mean that the optic nerve has to be involved in the brain, not at the retina, which these professionals checked thoroughly. Plus, they didn’t believe how badly the light hurt my eyes, nor that their exam triggered a massive migraine & such extreme photosensitivity over the next few days that, pleading a migraine at work that day, I had to wear sunglasses indoors whenever I wasn’t in my office – where the outside light from the hall was all I required. (This happened right before I became too severely ill to work anymore). I was told basically to drop the drama! That has to be central nervous system in origin. I’ve seen other posts where people mention extreme photosensitivity, blurring, eyes burning for no apparent reason, etc. Many ME/CFS sufferers have these symptoms. The eyes burning always happens due to some sort of stressor that could easily be central in origin,I wonder if they could actually try testing the optic nerve & the occipital lobe (back of the brain, the part to which the optic nerve feeds impulses for interpretation), in places like Whittemore-Peterson – if they’re not already doing so.

    Think about our symptoms for a minute. I’ve already shown that sight & eye problems are related to CNS interpretations. Most of the other symptoms also are tied to the CNS:

    1. Pain. Pain is mediated by the CNS, meaning that the brain sorts out the sensory input & defines it as pain v. pressure v. heat or cold, etc. It’s already been proven, in fibromyalgia patients, to be disordered signalling. Many outside the US believe fibro & CFS are the same – hence you see them call it simply ME, myalgic encephalitis (in medical terminology, my- is the combining form for muscle; algia is a combining form for pain (also, dynia is a combining form for pain), encephalo- means brain, -itis means inflammation, making ME mean muscle pain due to brain inflammation). They cite the difference as one of symptoms at onset; one person may present with fatigue, then pain becomes an issue; another presents with pain, & later fatigue shows up. In my experience as a nurse, pain wears people out, & patients who don’t get enough rest will end up more sensitive to painful stimuli; if they have pain, it will worsen in a vicious cycle, so the idea has merit. I researched pain for a paper in nursing school & have been fascinated by the subject since, never thinking at the time that it would eventually have a very personal application! Whether you’re talking fibro, ME, or CFS, the constant is that pain can become so severe that touch, which normally helps, causes more pain.
    Anyone who recalls being in a Lamaze or other childbirth education class will recall that massage is a central focus of helping to ease pain; partners of pregnant women are taught standard massage & something called “petrissage,” a gentle, fingertip massage using very light touch. Another technique for pain relief is to rub thumbs alongside the backbone, with fairly strong pressure, moving from (ideally) the base of the skull to the tailbone repeatedly (& always top to bottom), to shut down the pain gates; massage of the back especially (but also of muscle groups all over the body) is meant to stimulate blood flow to remove toxins from the muscles, & to provide heat via the hands & the increased blood flow – natural production of heat usually blocks pain signalling. Since the skin is rich in nerve endings, petrissage stimulates them to override pain signals. All of these methods, which I’ve taught & used successfully to ease the pain of patients with things as diverse as surgery, HIV/AIDS, cancer, MS, MG, lupus, lose their effects during severe attacks of what I’ll just call ME for now. They don’t work on us, but they work for all those other conditions – why? Because their pain comes from the periphery & is reported to the CNS. In ME, normal stimuli are interpreted as pain – thus, the pain comes from the CNS & goes to the periphery, then normal & painful stimuli are all interpreted as very real pain. Therefore, pain is the primary demonstration of a central, neurological pain disorder in ME/CFS/CFIDS/FMS.

    2. Associated with pain, obviously, is touch. Touch, in the forms of caresses, hugs, kisses, also eases pain & can regulate vital signs. My mother had a lot of medication allergies – almost all of them were pain medications. When she had a kidney removed for renal cell cancer, the pain medication wasn’t very effective & what they could use safely was very limited. She was, at the time, in the ICU, & her vital signs were very unstable. I was horrified at some of the things I was seeing, the derangements, & I knew it was pain. I also knew that they were desperately trying to control it to aid her healing – if ever there was a medical case that could be made for the role of pain control in healing, that was it – her insides were not healing as expected; they were slowed. Having had ICU experience, I knew what to avoid in the way of all those tubes & such, to touch her, & I got in close to her & just held her, hugging her, caressing her, kissing her cheeks & even hands, gently massaging her hands where I could. Within 10 minutes, all cardiac arrhythmias (except her atrial fibrillation, which was baseline for her) had stopped; her B/P was stable & normal, as were her heart rate & respiratory rate. Even her temperature stabilized, & her remaining kidney, which wasn’t producing much urine (barely within the 30 ml – 1 oz – per hour that was considered safe), began to make more urine & the swelling all over that’s a fairly normal part of the immediate post-operative period, began to go down. THEY LET ME STAY IN THE ICU WITH HER WHEN EVERY OTHER VISITOR WAS KICKED OUT – but I did hide so no one would know. When I’d take a bathroom break, her vitals would start to go all over the place until I got back. If I’d ever needed any more proof of how essential touch is to recovery, that was it.
    BUT YOU CAN’T TOUCH MANY ME PATIENTS WITHOUT MAKING THEM WORSE! Talk about a ripoff disease, one that robs people of the very touch that could heal them by interpreting it as pain!

    3. Hearing. The auditory nerve interprets sounds. There are some patients who, after any neurological insult, can hear just fine – but their brains can’t understand the input. It’s called “central deafness.” (& there are times I think the male of the species, & many doctors, develop this problem when faced with a female saying something they don’t want to hear!) Sounds are very painful to many ME patients. There’s nothing wrong with their ears when they’re checked; the derangement has to be CNS.

    4. Taste & smell aren’t affected as much, but I’ve had times when things taste or smell weird to me when they don’t to my son. My husband had his tonsils out when he was a toddler, due to repeated & severe ear infections; since then, he hasn’t been able to smell things, so he’s never sure if something is going bad. I think they injured his olfactory nerve (the nerve that transmits smells to the CNS for interpretation & sends back info on what to do about the smell) One time, he ate something that I’d told him to throw out because it’d been left out too long, but he didn’t SEE anything wrong with it & didn’t want to waste it. He was deathly ill with food poisoning; he couldn’t smell the odors that would’ve warned him. AND he said it tasted odd, but not too odd, so he ate more than just one bite. That was the last time he questioned me if I told him something needed to be thrown out because it wasn’t good anymore!
    Derangements in those senses can be far more dangerous than most people realize; he couldn’t smell smoke, & once when we were visiting my mom (before she got too sick to live on her own), I woke in the middle of the night to the smell of smoke. So did our son, who was quite young. My mom was sleeping in a bedroom far from the smell. His cries woke her; I had to wake my husband. He was surprised to see a house on the corner engulfed in flames; he could barely smell the smoke that was by this time stinging his eyes. I’m diligent about smoke detectors; if he was ever alone, asleep, he wouldn’t smell the smoke. (I was brought up in a town full of very old houses like ours, which was nearly 100 yr old when I was a teen; they were built close together, so a fire in one house endangered the entire town). I sometimes smell something no one else can smell, then it goes away. It’s not that terrible for me, but I’ve heard of ME patients for whom smells put them off eating, or food tastes weird & they only eat certain things, if they can stand the taste at all. Again, this has to be CNS in origin. The brain interprets smells & tastes; misinterpretation of normal smells &/or tastes could only occur there, as well as creation of smells that don’t exist.

    In other words, no matter what they measured in this survey, essentially they were measuring CNS function. It’s about time they not only said so, but emphasized the CNS connection by making sure that the way they follow up on how the symptoms of various problems express, mentions the things I’ve mentioned above.

    Sorry for the long post. Nurses who’re also teachers tend to want people to understand the body & what happens with it when they’re ill.

    • I totally agree with everything you’ve said!
      I’ve recently visited my ophthalmologist and was told the is nothing wrong with my eyes, aside from dry eye syndrome. She did not seem to take the description of my eye problems seriously. Like you, I believe it is due to problems with the central nervous system, I just wish they’d take our symptoms seriously… I find the vision problems to be one of the most upsetting symptoms :(. Everything is so much more demoralising when you’re not taken seriously

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