Cognition  and Chronic Fatigue Syndrome (ME/CFS): Key Findings and Seminal Papers

Cognition and Chronic Fatigue Syndrome (ME/CFS): Key Findings and Seminal Papers

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort submitted a new resource:

Cognition and Chronic Fatigue Syndrome (ME/CFS) - Kep papers in the difficulties in thinking that people with ME/CFS have

This is consistent with our previous findings of significant fluctuation in sustained attention and concentration in CFS [5] and point to an ongoing struggle to keep attention focused on the task at hand. Vollmer-Conna
[fright]View attachment 1686 [/fright]This paper attempts to identify seminal papers...
Read more about this resource...
 

San Diego

Well-Known Member
All the findings match up exactly with my recent neurocognitive testing and my personal experience - especially the part about information not getting into my brain and the use of multiple brain areas to complete simple tasks.

My IQ tested as it always has, which is so interesting to me. It gives me hope that should a treatment come available, my brain is still in there! It was sad to see that my current level of functioning in most areas is at or below the bottom of the Bell curve. :(

While my report did focus on dysautonomia, it also stated that depression was underlying my deficits. This despite the fact that I reported no depression on interview or questionnaire. :banghead:
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
All the findings match up exactly with my recent neurocognitive testing and my personal experience - especially the part about information not getting into my brain and the use of multiple brain areas to complete simple tasks.

My IQ tested as it always has, which is so interesting to me. It gives me hope that should a treatment come available, my brain is still in there! It was sad to see that my current level of functioning in most areas is at or below the bottom of the Bell curve. :(

While my report did focus on dysautonomia, it also stated that depression was underlying my deficits. This despite the fact that I reported no depression on interview or questionnaire. :banghead:
I think its all still there. I remember a transfer factor treatment of about twenty years ago when suddenly it was like my brain had completely revived...

Interesting how difficult it is to get a handle on IQ; I would have thought the same thing.

So hard for many in the medical profession to let that depression thing go....
 

Veet

Well-Known Member
information processing speed
At last an accurate description. I'm been very aware of almost zero working memory. I believe I've always had memory issues. Not forgetting things in daily life, but poor memory, eg. as demonstrated in test-taking. But now, I don't even bother w/ brain training exercises, as they don't help, and are exhausting. And executive planning has become a formidable task. I used to be great at planning, acting proactively.
Studies do not suggest that people with ME/CFS are less smart than before, or that they make more mistakes than before or that their memory, believe it or not, is worse than before. Once they get the information into their brains it sticks. Given their issues with slowed information processing the problem is getting information in there in the first place.
This!!

Fatigue: I view forums, read the news online, and that's pretty much me for the day. If I have pressing things, I can return to mental tasks some hours later, but it's a formidable task.

Thanks for this excellent compilation, Cort. The article is relatively simple, laid out w/ heaps of space. And still it's taken me forever to read through it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
At last an accurate description. I'm been very aware of almost zero working memory. I believe I've always had memory issues. Not forgetting things in daily life, but poor memory, eg. as demonstrated in test-taking. But now, I don't even bother w/ brain training exercises, as they don't help, and are exhausting. And executive planning has become a formidable task. I used to be great at planning, acting proactively.
This!!

Fatigue: I view forums, read the news online, and that's pretty much me for the day. If I have pressing things, I can return to mental tasks some hours later, but it's a formidable task.

Thanks for this excellent compilation, Cort. The article is relatively simple, laid out w/ heaps of space. And still it's taken me forever to read through it.
A good example of the cognitive difficulties we face!

I remember during my one really good bout with transfer factor all of a sudden I was looking forward and planning not just days but months into the future. I was going to do this and that was going to lead to this and that..... -it was so easy and natural......and yet now so foreign...

How weird! I believe those brain cells are ready to go to work if they're given the right juice...
 

Cecelia

Active Member
1) I wonder what that drug was that increased blood flow to the brain and returned cognition to previous levels?

2) Yes, slow processing speed. Can't follow some movies with the rapid changes in images at the same time as speech that may be too fast. Hard work to listen and process, as well as to speak. Uphill climbing. I have learned skills to improve my ability or performance--short cuts, what to pay attention to, how to relax everything not needed at that second, turning attention and its work on and off as needed. But this kind of efficiency and coping strategy has its limits. Failure happens more often and more quickly.

3) As for using more parts of the brain to do a simple task--yes, that corresponds with the amount of effort I feel I am expending. However, I want to say that I do not believe I was like this prior to ME/CFS, but only afterwards. There aren't studies of people before they get ME/CFS vs after, just comparisons with controls and what people report as their previous level of functioning, I gather.

4) Decision making is so poor in my case--I would go round and round and never be able to put it all together and assess things in relation to their context, my needs and goals, etc.--that I have taken to dowsing to make most of these decisions. If I still had a dog and could ask the dog, I might do it that way! It is simply too difficult if not impossible to make all the decisions otherwise.

5) And as far as those cognitive tests still coming up with the conclusion of depression, I think this is how the tests are structured and written. In other words, even though you may say you are not depressed, if you report low energy and memory or cognitive problems, the built in interpretation of that on the test is that you are depressed. This is called tautological ? There is some term for the logical loop or dishonesty involved, but I am not sufficiently knowledgable in the realm of logic to say. In layman's terms, the tests are rigged to show whatever the writers of the test already believe.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
1) I wonder what that drug was that increased blood flow to the brain and returned cognition to previous levels?

2) Yes, slow processing speed. Can't follow some movies with the rapid changes in images at the same time as speech that may be too fast. Hard work to listen and process, as well as to speak. Uphill climbing. I have learned skills to improve my ability or performance--short cuts, what to pay attention to, how to relax everything not needed at that second, turning attention and its work on and off as needed. But this kind of efficiency and coping strategy has its limits. Failure happens more often and more quickly.

3) As for using more parts of the brain to do a simple task--yes, that corresponds with the amount of effort I feel I am expending. However, I want to say that I do not believe I was like this prior to ME/CFS, but only afterwards. There aren't studies of people before they get ME/CFS vs after, just comparisons with controls and what people report as their previous level of functioning, I gather.

4) Decision making is so poor in my case--I would go round and round and never be able to put it all together and assess things in relation to their context, my needs and goals, etc.--that I have taken to dowsing to make most of these decisions. If I still had a dog and could ask the dog, I might do it that way! It is simply too difficult if not impossible to make all the decisions otherwise.

5) And as far as those cognitive tests still coming up with the conclusion of depression, I think this is how the tests are structured and written. In other words, even though you may say you are not depressed, if you report low energy and memory or cognitive problems, the built in interpretation of that on the test is that you are depressed. This is called tautological ? There is some term for the logical loop or dishonesty involved, but I am not sufficiently knowledgable in the realm of logic to say. In layman's terms, the tests are rigged to show whatever the writers of the test already believe.
Phenylephrine???? I believe its a drug that's not available to the public...
Hard work to listen and process, as well as to speak. Uphill climbing.
I think listening and speaking is the most difficult cognitive task for me

I agree on decision-making - I don't know that became so much more difficult but it certainly has
 

Veet

Well-Known Member
5) And as far as those cognitive tests still coming up with the conclusion of depression, I think this is how the tests are structured and written. In other words, even though you may say you are not depressed, if you report low energy and memory or cognitive problems, the built in interpretation of that on the test is that you are depressed. This is called tautological ? There is some term for the logical loop or dishonesty involved, but I am not sufficiently knowledgable in the realm of logic to say. In layman's terms, the tests are rigged to show whatever the writers of the test already believe.
 

San Diego

Well-Known Member
5) And as far as those cognitive tests still coming up with the conclusion of depression, I think this is how the tests are structured and written. In other words, even though you may say you are not depressed, if you report low energy and memory or cognitive problems, the built in interpretation of that on the test is that you are depressed. This is called tautological ? There is some term for the logical loop or dishonesty involved, but I am not sufficiently knowledgable in the realm of logic to say. In layman's terms, the tests are rigged to show whatever the writers of the test already believe.
This makes a lot of sense considering my results.

I couldn’t believe when the psych said I tested high on depression, as I had answered nothing I believed to indicate depression, only symptoms of my illness. I should have known!
 

Tina

Well-Known Member
When I did an evaluation I was told that due to the fact that the only problems I mentioned had to do with physical ailments and no other problems, I must be holding back. I was too guarded. That no one could be dealing with my type of illness and be so positive. He was pretty gentle, but recommended counseling to try to work through some of the issues I must be dealing with.

I felt like I was in the Twilight Zone.

I have been sick with ME/CFS since 2008. In all that time, I have never had a doctor directly say "it was all in my head." (And this doctor didn't either) I thought some could have been more probing in helping me or choosing to run more tests. Some obviously took me more seriously than others. A few recommended counseling and/or a support group.

Well, guess what. I went to counseling for a year, I joined Health Rising which I consider an online support group. I started giving money to advocacy groups and participating as much as I could.

More than anything, this community, the Health Rising community has made me feel not alone and has made me realize that the easy answers are not there. The science is not there yet. Research is the way to get the answers. It made me look at my doctors differently. When Mayo, etc. don't have the answers, how can I be angry with my doctors?

I am also very spiritual. I believe I am a vessel for God to use how he sees fit. If he has given me a broken vessel I am still expected to do my best with it. I am teaching my kids to persevere through adversity and to do it with love.

In other words, everything the psychologist recommended I had done or was continuing to do. It was disheartening and bummed me out for a few days. But one of the good things about this illness is that I am too exhausted to hold onto negative energy for long. I soldier on.
 

Paul Boyer

New Member
All the findings match up exactly with my recent neurocognitive testing and my personal experience - especially the part about information not getting into my brain and the use of multiple brain areas to complete simple tasks.

My IQ tested as it always has, which is so interesting to me. It gives me hope that should a treatment come available, my brain is still in there! It was sad to see that my current level of functioning in most areas is at or below the bottom of the Bell curve. :(
Exactly the same for me. To go from a former educator to what was deemed "low normal" in a couple measures felt devastating to me, too! I've also had two brain scans that reassured me my brain was still there. What they told me was that it was "normal." What I know is that it certainly ain't!
 

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