• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Drop in IQ

Messages
437
Has anyone elses IQ dropped since becoming sick?. I have noticed a pattern - when I am sicker my IQ is really bad and I can not for the life of me understand information that I previously would have not had a problem understanding. When I get a nasty illness on top of the ME, such as epstein barr virus or influenza, it gets even worse. When I had epstein barr virus back in 1999 and 2001, I completely lost the ability to work out how to connect up my tv and video, which I could previously do with my eyes closed!. 3 years ago when my health was in a much better place, I could understand complex scientific info, now I have trouble understanding even the most basic info. I feel really dumb!.

Anyone notice a pattern like this?. I remember watching the "cdc coverup of cfs" youtube video and a guy on there from the incline village outbreak, said his IQ dropped by 20 points - I can believe that!!.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Tulip, at various stages I have been from scary smart when I can intuit answers to complex math problems, all the way down to losing speech and being unable to understand even the most simple physical activities. IQ is a presumed optimal function of the brain, but as the brain capacity can decline a lot with ME then it is obvious that IQ will decline with it. I have not been formally tested at my mental peak or at my trough, but considering that at my mental worst I cannot even read or understand anything beyond ultra-simple English, I am guessing that at those time my IQ would be way below 60. Bye, Alex
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
It's an obvious symptom (and also difficult to define - how much is due to fatigue, how much to neurological damage etc), but I think its significance as a diagnostic tool is under recognized.

I did an IQ evaluation test as part of my diagnosis. Whereas I have university quals, my IQ in the test came below the median percentile. In fact, I was unable to complete the test. I couldn't even match up simple shapes by the end. I was so dismayed at my sudden deterioration during the test, that I felt likely crying. I think it showed, because the psychologist had no hesitation in supporting my case. So I would say I dropped quite a few points.

Interestingly, long before I realised I had ME, I believed I had suffered an inexplicable step down in IQ in high school, between one year and the next - some ten years before my 'sudden onset'. This realization (among other signs) has led me to believe I have had ME since childhood in a slowly increasing severity, but with sudden stages of rapid progression - maybe a new definition here - staged onset? lol.

I think an IQ evaluation, perhaps standardized, should be part of diagnostic criteria. Trouble is noone has a benchmark. In my case it was obvious.
 

Nielk

Senior Member
Messages
6,970
It's hard to establish for me because I did not take an IQ test since I am sick but, I know that when I'm in a crash, simple ideologies escape me. I think yo me it's more of a prob;em of being able to concentrate and pay attention. When I feel better, I don't seem to have a major problem with this. In other words, it doesn't seem to be permanent damage, I really hope so because I would be crushed if this illness would permanently affect my IQ level. I don't think I would be able to deal with that.
 
Messages
877
I'm not sure how accurate those tests are for measuring declines from ME. Or different people loose differnt stuff. Be interesting to have had a before and after though.

But know the feeling, easy stuff can be hard! Sometimes I'm afraid to travel away from home out of fear of getting lost or too tired and stranded.
 
Messages
437
I agree it should be used as a diagnostic tool, it would be really really helpful.

I have a child in year 2 and I can't even help him with his maths because my brain can not figure it out, how embarrassing is that!? (luckily he is really good at maths).

I have read about those with gulf war illness having very similar problems to.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
That's usually how I know I've picked up some secondary infection, virus. The first thing to go is my clarity.

Sometimes, I'm so brain dead and so many things don't make sense, easily confused. And then other times, I can be like an idiot savant and be light years ahead on stuff.

But it's very scary when you have cognitive problems. I've had things happen where I'll be standing at the ATM machine, and I won't know how to use it, or what I'm even doing there.

Forget math. I cannot do math. I have to have a calculator. I can't do simple adding and subtracting at all. However, in a total idiot savant way, I can read and write binhex codes in computer languages. It's very bizarre.
 

Esther12

Senior Member
Messages
13,774
Being tired causes almost everyone's IQ to drop pretty substantially. There was some paper on it a while ago the measured the amount (in healthy people deprived of sleep, rather than CFS).
 

redo

Senior Member
Messages
874
Anyone notice a pattern like this?. I remember watching the "cdc coverup of cfs" youtube video and a guy on there from the incline village outbreak, said his IQ dropped by 20 points - I can believe that!!.

Yes. I can believe that too. The same thing has happened to me. At least 20 points down, and the memory used to be in the middle of how a healthy person's is and how an alzheimers patient's is (memory has improved some with treatment though)
 

Overstressed

Senior Member
Messages
406
Location
Belgium
I have the same experience. Ever since I became ill, I'm easily confused and when people talk quickly, I only catch the first sentence, think about the second, while the person already finished his speech. I miss a lot of information, and this is becoming a huge problem at work. Not only do I 'miss' the information, the information I have, I forget very easily. It's like I never received that piece of information. It's gone... This has caused some 'discussions' with people, but I have given up, because I know it's part of the disease.

Another thing is that I completely forgot how to write certain words, how to do certain things. Things that I use to do, with my eyes closed. This makes me very very sad.

As a computer programmer, I often compare my situation with a too small defined memory buffer, where too much data is copied to. Many bits of information fall outside the buffer memory.

Previously, I had a very dynamic buffer...

OS.
 

currer

Senior Member
Messages
1,409
I can forget what I'm saying in the middle of saying it. I loose my whole train of thought and it does not come back.
Very embarrasing.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Absolutely. Before I was sick I was a systems analyst, and I designed metrics to measure computer system performance and did complex data analysis. Now trying to balance my checkbook can reduce me to tears of frustration. I used to entertain myself when I was stuck in traffic by doing math problems in my head, now I have to use a calculator for simple arithmetic. Sometimes I can't read and understand a simple magazine article.

Like all of my symptoms, the severity varies from day to day and even hour to hour.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
more computer analogies

As a computer programmer, I often compare my situation with a too small defined memory buffer, where too much data is copied to. Many bits of information fall outside the buffer memory.

Previously, I had a very dynamic buffer...

Hello from a fellow computer programmer/software engineer! (well, I used to be one in a former life...I have not been able to work since 2000)

When telling my friends about my cognitive problems I've also used this example of limited buffer space. It's not as obvious a problem when talking with people. With social chit chat I don't have to remember every word and I can ask folks to repeat themselves. But I have a lot of trouble listening to radio news or weather reports.

When listening to the radio I can understand each individual word but I can't hold enough of the words in my memory to understand a full sentence. By the time they get to the end of a sentence I've forgotten what they said at the start of the sentence, to say nothing of the previous sentences. It feels like I'm trying to understand a foreign language that I barely know, e.g., I can understand a word or two but can't translate it in real time.

Fortunately, I can still read, and even understand what I've read, if I'm not too tired. When reading I can go at my own pace and re-read if I've missed something. Also, even before I got sick, I was always a lot better at absorbing information by reading it than by hearing it. I do feel quite lucky that I can still read because I have heard that some folks have brain fog so bad that they can't read a simple novel.

Another computer example I have used is that my stack overflows when I get interrupted. Any interrupt seems to erase all memory of whatever previous task I was doing. I told a former co-worker, in a joking voice, that my stack overflowed so easily that it felt like I had a stack depth of one. He laughed and said, "That's really more of a register, not a stack." ;)

Also, my drop in IQ is ten times worse if I'm standing up. I'm able to think a lot more clearly when I'm sitting down, and even better if I'm resting in the recliner with my feet up or lying down. Before my NMH diagnosis (a type of Orthostatic Intolerance) I thought this was because it took more energy to stand (which may be true) but I believe a bigger factor is having low blood volume and not getting enough blood in the brain. (hypoperfusion has been shown in various research studies)

Going back to the original question, I should say that I don't really know for sure whether my IQ actually goes up or down. I've never done any formal tests. I just know that my ability to think clearly, from a subjective point of view (in addition to observations made by my very patient husband), has been affected by this illness. There are a lot of threads on this problem but can't seem to find them now (I remember talking about word finding problems, for example).

It can be quite frustrating! It's lucky that we can share our experiences here and discover that this is a common problem.
 

Deatheye

Senior Member
Messages
161
I had one test at around the age of 9 showing above average results but they never told me the value. Later one one showed around 128 and one 13x.
In generell I can drop to the point where I cant remember more then 1 word beeing sad. Can't remember basic words, can't construct a sentence, don't understand language anymore (just sounds like wierd noices, foreign language even loos the ability to extract the feeling behind what's sad. Like it's something sad or happy which sometimes still helps me to communicate even if I dont understand thge words themself) I forgott my own name, or need hours to take a shower cause I'm running between two rooms always forgetting to take the clothes with me without having any idea why I've actually entered the room.
 

November Girl

Senior Member
Messages
328
Location
Texas
I had an IQ test around age 40, when my ability-to-think-and-process-information symptoms were moderately severe. At that point I measured 20 points lower than my senior year in high school. And this was at a point when my difficulties weren't even that obvious to to others! I can only imagine what the results would have been if tested at my worst.

There was a prolonged period of time when my whole thought and language & memory was totally screwed up. I kept a spiral notebook with notes in it. If I had to call about my car insurance, or make an appt, or ask a friend a question, this all went in the notebook, particularly anything on the phone. I started by writing out the name & number I was calling and what I wanted to know. This sometimes took awhile to get straight. Either during or right after the call I wrote down the answers or what I needed to do. I don't remember how long this period lasted, but I did go through a few spiral notebooks. There is no way i could have handled everyday business without it. Come ot think of it, I probably should have kept up this process a bit longer than I did.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
Yes. Definitely yes. Before I got sick I was working on the first part of my bachelor's degree. I was a good student and I often got A's. After I became ill, I had a short "good" period. I went back and took one class. I had to struggle very hard to make a B in the class. I used to be a secretary and now I can't remember how to spell. I can't even form sentences when I talk. I can't get them out right. There is no way I could do the job I used to do (Paralegal) or finish my bachelor's degree unless I took one class at a time during "good" periods. If I ever do feel good enough again, it will probably take me until the day I die to finish, if I am finished by then.

Sometimes I forget where I am and what I am doing. I have nightmares about being in Walmart and forgetting who I am or where I am. I wonder around the store forever not knowing how to get out or get home.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Like most, I start off more brainfogged than usual, but the big thing for me is the big fade when concentrating on something. I mean I literally have over 20-30 points shaved off my IQ after doing an exam for an hour. It is a problem when you are trying to do uni...
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Wasn't there a study showing average drop in IQ of ME patients between 20 and 50 points depending on severity of symptoms?
Maths and such I find hardest, intuitive artistic has less reduction.
Once a genius, but now I seem to have similar intellectual limitations as Da Weasel (*) does, or so it would seem... :p


(*) No death threats or abuse of small mustelid mammals (which are often very cute) is presumed or actual in this post! ;)
 
Messages
22
I feel like I'm dropping IQ points left and right. I used to be a straight-A student, with high test scores and a fairly high (measured) IQ. Now I can't even find the right words to use when talking. I'm not talking about $0.50 words, just words like "cat" and "dog". Seems to happen a lot more when I have a bad sleep deficit, which is every day during a standard work week :(

I try and learn new things (guitar, foreign languages) and I play a lot of word games to help with word retrieval issues and spelling. To see me now you would never guess that I was a former spelling bee winner :rolleyes: Sheesh.

I just want to bang my head on my desk because I cannot seem to figure out The Most Simplest Things. I think it's getting worse too... more sleeping problems, more headaches, more fatigue, more strange body pains (all over). It's like the physical problems are sapping everything I have and making my mind dull!!!
 
Messages
877
The sad thing is just walking around it's unlikely one would ever know others are having such difficulty.

Forgetting who you are at Wallmart could be very scary. :eek:) Geeze. There is a website for this, in case you hadn't noticed.

My recurring nightmare used to be getting buried in a room full of pennies and I had to count everyone of them. It seemed like the pennies rose to I got to my chin at least once before I woke up.