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Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

Bob

Senior Member
Messages
16,455
Location
England (south coast)
IQ tests are the wrong tests for testing cognitive function in ME patients. Specific complex multi-tasking tests are needed. I forget the exact details of the studies that have been carried out, but I hope Nath is aware of the details. I think that would be something very much worth emailing him about. Does anyone feel like helping me find the research and writing a short email?
 

duncan

Senior Member
Messages
2,240
@Bob, I think that is a super idea. I wish I had known about these tests when I had my IQ done at the NIH.

How would he compare us to control group's though? Wouldn't controls have to have the same battery of tests?

eta: dumb question. Of course they would.

Ok, still a super idea.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
So, mango's link lists a number of useful papers about cognitive deficit tests, which includes the following which is the particular paper that I was thinking of...

Togo F, Lange G, Natelson BH, Quigley KS.
Attention network test: Assessment of cognitive function in chronic fatigue syndrome.
J Neuropsychol. 2015;9:1-9.
http://www.ncbi.nlm.nih.gov/pubmed/24112872
Abstract
Information processing difficulties are common in patients with chronic fatigue syndrome (CFS). It has been shown that the time it takes to process a complex cognitive task, rather than error rate, may be the critical variable underlying CFS patients' cognitive complaints. The Attention Network Task (ANT) developed by Fan and colleagues may be of clinical utility to assess cognitive function in CFS, because it allows for simultaneous assessment of mental response speed, also called information processing speed, and error rate under three conditions challenging the attention system. Comparison of data from two groups of CFS patients (those with and without comorbid major depressive disorder; n = 19 and 22, respectively) to controls (n = 29) consistently showed that error rates did not differ among groups across conditions, but speed of information processing did. Processing time was prolonged in both CFS groups and most significantly affected in response to the most complex task conditions. For simpler tasks, processing time was only prolonged in CFS participants with depression. The data suggest that the ANT may be a task that could be used clinically to assess information processing deficits in individuals with CFS.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is the other main study (it's a meta-analysis) that I was thinking of. It demonstrates that processing speed is problematic for ME patients rather than accuracy in tests...

Cockshell SJ, Mathias JL.
Cognitive functioning in chronic fatigue syndrome: a meta-analysis.
Psychol Med 2010;40:1253-67.
http://www.ncbi.nlm.nih.gov/pubmed/20047703
Abstract
BACKGROUND:
Cognitive problems are commonly reported in persons with chronic fatigue syndrome (CFS) and are one of the most disabling symptoms of this condition. A number of cognitive deficits have been identified, although the findings are inconsistent and hindered by methodological differences. The current study therefore conducted a meta-analysis of research examining cognitive functioning in persons with CFS in order to identify the pattern and magnitude of any deficits that are associated with this condition.

METHOD:
A comprehensive search of the PubMed and PsycINFO databases for studies that examined cognitive functioning in CFS between 1988 and 2008 identified 50 eligible studies. Weighted Cohen's d effect sizes, 95% confidence intervals and fail-safe Ns were calculated for each cognitive score.

RESULTS:
Evidence of cognitive deficits in persons with CFS was found primarily in the domains of attention, memory and reaction time. Deficits were not apparent on tests of fine motor speed, vocabulary, reasoning and global functioning.

CONCLUSIONS:
Persons with CFS demonstrate moderate to large impairments in simple and complex information processing speed and in tasks requiring working memory over a sustained period of time.

And this...

Cockshell SJ, Mathias JL.
Cognitive deficits in chronic fatigue syndrome and their relationship to psychological status, symptomatology, and everyday functioning.
Neuropsychology. 2013;27:230-42.
http://www.ncbi.nlm.nih.gov/pubmed/23527651

Abstract
OBJECTIVE:
To examine cognitive deficits in people with chronic fatigue syndrome (CFS) and their relationship to psychological status, CFS symptoms, and everyday functioning.

METHOD:
The current study compared the cognitive performance (reaction time, attention, memory, motor functioning, verbal abilities, and visuospatial abilities) of a sample with CFS (n = 50) with that of a sample of healthy controls (n = 50), all of whom had demonstrated high levels of effort and an intention to perform well, and examined the extent to which psychological status, CFS symptoms, and everyday functioning were related to cognitive performance.

RESULTS:
The CFS group showed impaired information processing speed (reaction time), relative to the controls, but comparable performance on tests of attention, memory, motor functioning, verbal ability, and visuospatial ability. Moreover, information processing speed was not related to psychiatric status, depression, anxiety, the number or severity of CFS symptoms, fatigue, sleep quality, or everyday functioning.

CONCLUSION:
A slowing in information processing speed appears to be the main cognitive deficit seen in persons with CFS whose performance on effort tests is not compromised. Importantly, this slowing does not appear to be the consequence of other CFS-related variables, such as depression and fatigue, or motor speed.
 
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Amaya2014

Senior Member
Messages
215
Location
Columbus, GA
Duncan and I have clubbed together and have sent a very short email, including the references to the cognitive studies. Thanks to mango for your record keeping

I had similar results with my cognitive testing. Cognitive impairment has been the worse for me, outside of PEM. But, my subjective experience of memory loss, difficulty recalling words and names (even faces), trouble concentrating and paying attention really doesn't show itself until I'm heading for a crash.

What I found was in a room answering simple mental status questions I was pretty fine except getting more and more fatigued. A week ago I walked about a mile with family and was feeling okay. Only to find late that evening I'd left the house keys in the front door and the garage door open. Feels like a mild Alzheimer's.
 

Riley

Senior Member
Messages
178
What I found was in a room answering simple mental status questions I was pretty fine except getting more and more fatigued
I can relate to that. Even when I was very severely ill, I was still able to ace a short, basic cognitive test in a physician's office. It just made me crash afterwards.

I tell people, "I still have my brain, I just can't use it!"
 

duncan

Senior Member
Messages
2,240
@CFS_for_19_years , sorry I did not respond directly earlier.

I have had a few neuro-cognitive evaluations over the last several years. They do usually offer up an estimate of pre-morbid FSIQ's, typically with a 90% confidence level. If I remember my stats correctly, a 90% confidence level is pretty poor. Naturally, they also take a stab at your current IQ.

But these evaluations are much more than just IQs. Processing speed, judgement, visual memory - there are several cognitive domains gauged.

Maybe you are correct when you say that IQ's may not diminish. I agree with Bob that some of these tests may be looking at the wrong things; or rather, there may be better vehicles to capture our deficiencies than the normal battery of cognitive tests provide.

I do not put much faith in the usual neuro evaluations because I know they got some of my values wrong, including my IQ. But the rank and file of the medical community, and our entire culture by and large, do heed them.

We all know that "brain fog" is inadequate. Unfortunately, how we can demonstrate our deficits is not always easy. So if normal cognitive testing yields "All is normal" (and in your case, superior), we know it is not, at least not for us. Maybe with these tests that @Bob and @mango have identified, our chances at more representative results will improve.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
IQ tests are the wrong tests for testing cognitive function in ME patients. Specific complex multi-tasking tests are needed. I forget the exact details of the studies that have been carried out, but I hope Nath is aware of the details. I think that would be something very much worth emailing him about. Does anyone feel like helping me find the research and writing a short email?


This is an article Simon McGrath wrote two years ago.
 
Cognitive testing causes mental exhaustion lasting days
http://phoenixrisingme/archives/24259
 

Kati

Patient in training
Messages
5,497
IQ tests are the wrong tests for testing cognitive function in ME patients. Specific complex multi-tasking tests are needed. I forget the exact details of the studies that have been carried out, but I hope Nath is aware of the details. I think that would be something very much worth emailing him about. Does anyone feel like helping me find the research and writing a short email?
Dr Nath will study neuro-immunology using technology, imaging and laboratory testing of body fluids. Thankfully, because more questioonnaires will only lead to subjective interpretations.

i'd suggest letting dr Nath being good at what he does.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Dr Nath will study neuro-immunology using technology, imaging and laboratory testing of body fluids. Thankfully, because more questioonnaires will only lead to subjective interpretations.
I thought there were to be cognitive tests as well. Anyway, I've sent him a very short email, and he can use the info or ignore it as he see fit.

Edit:
NIH said:
The tests include:
  • Thinking and memory tests
http://mecfs.ctss.nih.gov/
 
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duncan

Senior Member
Messages
2,240
Cognitive evaluations are a declared element.

Technology, imaging and laboratory testing of body fluids also can lead to subjective interpretations - and probably do more often than one might suspect, even at the NIH.
 

viggster

Senior Member
Messages
464
Complete silence on the matter, and the high likelihood that such calculations would confirm that two control groups is a really really bad idea for a small study.
You're wrong. Nath addressed this issue in March 8 teleconference. The question is about why 40 patients?

Dr. Nath: So let me address that. This is Avi. There are two aspects to it. Number one is that we are going to be screening patients, that’ll take us a while. The we admit the patients and they’re going to be in for a week. So it will take us one patient for a week. Give and take 40 patients, it’s going to take you a minimum of one year just to study 40 patients plus you’ve got the controls so it’s going to take you a while to actually get through this population. So If you increase it more and more it’s going to take you longer to get to the answer.

The other thing is that we’re collecting a very precise population. [inaudible] we’ve calculated a lot of sample sizes based on the information that we have. If you don’t find a neuroimmune abnormality in 40 then it’s unlikely to be a major driver of the disease. And I’m pretty certain that this is a decent sample size for us to be able to find the kind of immune abnormalities that we’re looking for.

So I think the sample size is pretty decent and it gives us an opportunity after that, as I said, to do a longitudinal study and then you can enrol as many patients as you want from, you know, all over the country and other people can participate in the study and take those findings and look at multiple groups. So you have the second phase of the study that allows you to do a more expansive study but you don’t want to do a huge expansive study the first time around. If it takes a thousand patients to find something, it probably isn’t worth chasing at all.
 

Amaya2014

Senior Member
Messages
215
Location
Columbus, GA
Hi @Amaya2014 Dr Lapp means well, and likely wants you to remain fit and avoid deconditioning. However if you have a hard time to keep up with your daily demands, please consider that your body may not be able to perform at Dr Lapp's level, and you wouldn't be the first one.

3500 steps for one maybe almost nothing, but for others it will cause a crash over and over and over. Or it can be insidious. Also the heart rate threshold might be too high. In my case I have had 3 sets of exercise test, with the first one telling me my threshold was 95. 95 is not high for someone who has POTS (and there are many of us who have POTS) when just getting up raises someone's heart rate to 120. Continually crashing will cause you to decline much faster than if you didn't crash all the time. So the steps and heart rate parameters may be too high even if the doctor tells you it's where you need to be.

Speaking of POTS, have you been tested for orthostatic intolerance? Because getting the appropriate treatment will make a difference in your day to day. You can test yourself at home for this. Ask me if you want to know how.

The best thing you can do is to listen to your body. Save your energy for when it matters most, when you take care of your son. Keep an activity journal/ and symptoms. See what works for you, no one else.

Best wishes, Kati
Thanks for the concern. Being told to walk no more than avg 3500 steps a day is equivalent to handing me a cane. I used to be so active 8-10,000 was my average. As an active duty soldier, 2-5miles within a space of two hours was just the beginning of the day!

Cognitive impairment been the worse for me. I have major issues with elevator rides but I think it's more of a vertigo issue than OI.
 

Gingergrrl

Senior Member
Messages
16,171
Being told to walk no more than avg 3500 steps a day is equivalent to handing me a cane.

If I could walk 3500 steps in a week let alone in a day, I probably would never ask for anything else again as long as I lived and I don't see how this is the equivalent of "handing someone a cane." Not everyone can walk a mile although if I could, I would be sobbing with joy. I'm sure you didn't mean it this way, but I found it hurtful.
 
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CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@CFS_for_19_years , sorry I did not respond directly earlier.

I have had a few neuro-cognitive evaluations over the last several years. They do usually offer up an estimate of pre-morbid FSIQ's, typically with a 90% confidence level. If I remember my stats correctly, a 90% confidence level is pretty poor. Naturally, they also take a stab at your current IQ.

But these evaluations are much more than just IQs. Processing speed, judgement, visual memory - there are several cognitive domains gauged.

Maybe you are correct when you say that IQ's may not diminish. I agree with Bob that some of these tests may be looking at the wrong things; or rather, there may be better vehicles to capture our deficiencies than the normal battery of cognitive tests provide.

I do not put much faith in the usual neuro evaluations because I know they got some of my values wrong, including my IQ. But the rank and file of the medical community, and our entire culture by and large, do heed them.

We all know that "brain fog" is inadequate. Unfortunately, how we can demonstrate our deficits is not always easy. So if normal cognitive testing yields "All is normal" (and in your case, superior), we know it is not, at least not for us. Maybe with these tests that @Bob and @mango have identified, our chances at more representative results will improve.

@duncan, you misunderstood what I wrote. My IQ is fine, but my cognitive testing sucked on some specific tests. Maybe you weren't aware which specific tests were meant to define IQ and which tests were meant to define cognitive processing. The two are very different! I "flunked" several specific cognitive tests, in the sense that the examiner pointed out these deficiencies in his report, but I sailed through other cognitive tests, such as visual memory. (I'd have to explain more about that test to understand what aspects of visual memory were being tested.)

IQ testing will probably not show deficits for most of us, however, those IQ tests are meant to provide a backdrop or context to the cognitive testing. Sample report: patient has an estimated IQ of 160, yet has poor word recall and took a very long time completing the Trail Making Test (https://en.wikipedia.org/wiki/Trail_Making_Test). This would indicate someone who is smart but has deficits indicating brain damage and/or dementia. If someone of low IQ had a difficult time with word recall or trail making, some of that could be due to low IQ. That's my interpretation of how/why IQ tests are included in cognitive testing.

These tests are the best measure of pre-morbid intelligence and some of them are usually included as part of cognitive testing:
https://en.wikipedia.org/wiki/Hold_test
Hold tests are neuropsychological tests which tap abilities which are thought to be largely resistant to cognitive declines following neurological damage. As a result these tests are widely used for estimating premorbid intelligence in conditions such as dementia, traumatic brain injury, and stroke.
(I aced these.)

https://en.wikipedia.org/wiki/Neuropsychological_test
I sucked or did OK on these tests:
Memory, language, executive function, visuospatial, dementia specific

Even with my IQ, I have difficulty following the story line of a TV show or movie. I understand about half of what is happening and become even more confused if the characters don't look drastically different from one another. This has been true for the 25 years I've been sick.
 
Messages
15,786
You're wrong. Nath addressed this issue in March 8 teleconference. The question is about why 40 patients?
You are misunderstanding or misstating the issue. I understand the limit of 40 patients. But it is a somewhat small sample, especially when dozens of comparisons are being made.

Making too many comparisons increases the chance that meaningful differences will be calculated to be statistically insignificant. Adding 2 or 3 control groups doubles or triples the number of comparisons being made, which results in a much larger difference needed to show statistical significance.