Discussion in 'Phoenix Rising Articles' started by Mark, Apr 27, 2013.
View the Post on the Blog
View the Post on the Blog
Thanks Simon. Very informative.
Memory is a big one for me. I can't remember things after even a short amount of time, and the registering of information is definately a problem for me too. I can look at the time on a clock, but not understand what the time is. I have to really focus to process it. Same for reading, some days I have to read everything twice, at least, in order to take it in, or hear a question multiple times before I can answer. It's good to see that people are looking at these things.
My memory is lousy too, though in my case I think that's more down to age... Registering - or rather understanding - information can be a real bugbear for me as well. I'm fine for a while then it suddenly goes and it's as if the words are jumping off the page at me, or someone is speaking but I can't connect their words together into a sentence.
Yes - good that this is being looked at, including seeing how people are affected by the demands of the test itself. From my own experience I would expect mental fatigue to set in quickly just as physical fatigue does, and maybe it is related to lactic acid levels as physical fatigue has been found to be in ME.
Re the comparisons with healthy people, it's a shame that we don't have baseline values for how people performed before getting ME. I wonder if there is a group of sufferers who have taken such tests before becoming ill - taken for some other reason.
My thinking is that (and I know some people are strongly opposed to suggestions of 'ME personality traits'), I and many sufferers with whom I have corresponded are perfectionists and very demanding of ourselves, perhaps more than the general public. This, and a change from baseline, could at least partly account for why our results do not always correlate with our perceptions. We don't think we are doing 'well enough' or as well as we used to, and the latter may be correct.
Our tendency to push ourselves hard, and beat ourselves up if we don't do as well as we think we should, is likely to be a factor in the development of the illness. In my view anyway.
I know there has been a study that found we did not have characteristic personality traits, but that was carried out by a certain Simon Wessely et al. (Maybe there are others.)
I had huge brainfog, could not even type 3 words or find a bill in a pile some years ago. The names of my children, the road to home, ... it was a disaster. Things have improved since a year. I can write and read a lot. I took a lot of supplements but I guess it is a combination of Low dose naltrexone, licorice root, biotin and D-phenylalaline that did the trick. Biotin in high dosage (10 mg) kills candida and lifts part of the brain fog. Licorice root supports the adrenals and when they start working again (let's say after 9 months of use) it does make a difference. Low dose naltrexone (LDN) is very strong and causes in most people kind of herxheimer reactions for months. You'll have to start very low (0,25 mg for a month before slowly increasing the dose). You produce more endorphines and it had a huge impact on my brain. In the beginning extreme headaches but apparently it was part of my healing. LDN also gives you more energy but it'll affect your sleep in the beginning. Consider 5-HTP of some melatonin to sleep. D-phenylalaline is what is needed to make neurotransmitters. It helps me to be in good mood and apparently to have a better memory as well after extensive usage.
Wish you all the best.
Nice post Simon
I'll be blogging on a similar vein on Health Rising in the near future.
Thanks Simon. I found planning to be a tough mental task.
I can make great decisions given a set of information in front of me. Long as I don't have to remember anything and apply it at a later time or date
very interesting about us utilising more brain regions to do the same job and perhaps means more of us should have a crack at taking piracetam which decreases EEG complexity , in my understanding it makes sure the corpus callosum has plenty of choline to make it easier for signals to jump from one neuron to the next and because it is targetting the callosum the left and right brain hemisphere communication is more efficient
I Reading this thread so far, there seem to be a wide range of different cognitive problems and I suspect each person would have a different threshold before fatigue sets in. Maybe it needs some kind of maximal mental exertion test (like a physical VO2 max test) to show up differences consistently.
Re lactate, a series of (small) studies has shown brain lactate levels are higher in CFS patients - here's the most recent one.
Thanks - look forward to reading it.
Ta, Jarod. It does seem funny how it affects each of us slightly differently.
Marlène: glad you are so much improved
When I get into a crash my brain shuts down almost completely. I can produce words, but the ability to form thoughts ranges from slight (a few sentences worth) to none. Above that, almost nothing -- a simple thought about an immediate condition may stick ("it is time to take prescription x") but after a short time even that fails.
I understand. In the beginning of my crash which lasted 14 months, I spent 14 months in a dark room, my brain felt like melting and electricity go haywire. It was awful indeed. Just moving my eyes or a single sound made my brain flip. I was unable to feed myself and only whisper a few words. Thus was in 2008. Things can change, never give up hope.
Cognitive problems will be evaluated in CDC multi-clinic study
At the FDA meet on Friday Elizabeth Unger said they would be evaluating cognitive functioning (and exercise performance) in a subset of their 450 subjects. Which could be very interesting as they will have a lot of clinical data they could use to correlate with the cognitive results.
I spend a lot of time at work rehearsing what day it is and what treatment room number I have signed out for the shift. Sometimes I go blank on that information and have to start over. I also go totally blank on information I know I know -- like a muscle name I am writing down on a chart. It just leaves. I can visualize what I need to do, but cannot name it or write it down properly, and occasionally have to ask someone. Very embarrassing, but I no longer care, I just ask.
Just a few notes. There is quite a bit of objective evidence of slowed information processing in at least subgroups. And Beth Unger did say that some patients showed substantial cognitive issues and others did not so apparently there are subgroups.
Whether or not cognitive issues are found has a great deal to do with not only subgroups, but whether the right instruments were used and how well the person taking the test reflects the norms used. Plus it helps to study the same patients across all studies in meta analysis.
And there are numerous objective and validated ways to prove anomia, acalculia etc.
For example, according to wiki, the Rey-Osterrieth Complex Figure Test (ROCF) is a neuropsychological assessment in which examinees are asked to reproduce a complicated line drawing, first by copying and then from memory. Many different cognitive abilities are needed for a correct performance, and the test therefore permits the evaluation of different functions, such as visuospatial abilities, memory, attention, planning, and working memory (executive functions).
Frank Duffy has found substantial issues in information processing using qEEG.
Neuropsychology ???? - it would be great if any answer were there. But to fellow sufferers - hang in there it can slowly clear.
Wish I could do that. I have to move in about a month, & there's noise where I'm living now, primarily impact noise from stomping/walking in the apt above (the ceiling is attached directly to the beams of the floor above, thin sheetrock, and the ppl above are both over 200#...).
So, gotta move. Can't keep up with stuff... I take most but not all of my meds + can't accurately figure out what to add.
Randomly adding supplements doesn't sit well with me; I broke down and tried one after a persistent insistence by the re who found my current apt. Doc pointed out that it consists of 99+% sugar, a bit of potassium, and a few mg of red wine, grape seed and something else extract. Even if those are beneficial and actually exist in the supplement (you can in practice put anything in a supplement, label it whatever you want and sell it provided no one dies), the amounts are too small to have any effect.
But I also have to try unproven things, as there's no reliable, proven effective medicine for us.
Huh ... how did I type all that? I think bc it was an old, pre-formulated thought. I didn't think that out consciously, it was just words spilling out. Odd... I can't form coherent and on-topic thoughts now, but I can sorta babble via the keyboard.
The Beth Unger comment was very interesting, I'd love to see that data in more detail.
Most of the studies in the meta-analysis used Fukuda or better, though some used Oxford Criteria.
It's not necessarily as simple as: find a validated test, run it, get a clean result. There are lots of different validated tests out there and no consensus on the 'right' one to use - and many different ones have been in different CFS studies. However, 4 studies (total 107 patients) in the meta-analysis did use the Rey-Osterrieth Complex Figure Test (ROCF) and found a small-to-moderate deficit relative to controls. However, most other memory tests eg the 'Selective Reminding Test' found larger effects (including some on the same patients).The situation is messy, unfortunately. Seem to be the norm in ME research.
If you want to read the full paper it's worth contacting Susan Cockshell, who I'm sure would provide the full text.
Virtual reality games as a better test of real-world cognitive abilities?
Interesting piece at Science Daily about researchers who are trying to develop virtual reality tests of cognitive ability, to get closer to real-world tasks:
Their "Multi-tasking in the City" test gets people to go shopping and go the bank is an artificial world: no physical effort is required so it assess how people can cope with the mental demands of those activities.
Totally understand this. I either don't talk or type then go into loads of typing and talking which is really just a brain dump.....it happens when i get into a wired tired state. Staying on-topic is hard but grammar and most spelling remains intact. So of course people tell me I have no problems with communication when i struggle to write a shopping list without assistance.
I think a real meaningful study would compare the CFS patients to their former healthier selves rather than to "controls". I don't mean to brag but I know I had a high IQ back when I was healthier. I suspect that my IQ is probably lower now and more in the average range so compared to controls there wouldn't be much of a difference. But if you compare ME now to the ME I used to be -- big difference!
Also, due to adrenaline, if I knew I was being tested for cognitive function I would perform a lot better than when I'm relaxed and complacent at home.
You can also try a Google Site Search
Separate names with a comma.