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Cognitive testing causes mental exhaustion lasting days

Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date…

Confused, exhausted, depressed - pixabayIt might not come as a huge surprise to patients, but a new study has found that mental fatigue can persist long after mental exertion is over.

Specifically, after a 3-hour session of cognitive testing of memory and attention, healthy controls took an average of 7 hours to recover, compared with 57 hours – more than two days – for CFS patients.

While one previous study found mental fatigue continues days after physical exertion, this appears to be the first research paper to demonstrate that mental exertion itself leads to prolonged mental fatigue.

To me, the large difference found between patients and controls makes this some of the most powerful evidence of the cognitive problems in ME/CFS.

Interestingly, this finding only came about thanks to the alertness of Susan Cockshell, the lead researcher who told me:

“I hadn’t originally planned to collect this data, but I had to follow up one of my first participants a few days after testing and she told me she was still fatigued.”

So, post-test mental fatigue was added to the measures.

Mental fatigue for both healthy controls and patients peaked several hours after testing (albeit at lower levels for controls), but 24 hours later, controls were back to pre-test levels while patients were not.

It’s hard to believe we’ve waited till now to even see testing of post-exertional mental fatigue. Cockshell commented that surprisingly little data existed in this area, but her study shows it is an issue that needs further investigation.

Subjective measures don’t match objective measures

The main aim of the study was actually to see if patients’ reports of problems with mental tasks were backed up by objective test of cognitive function – specifically of memory and concentration, two distinctive problems with ME/CFS.

The result? There was no significant correlation between patient reports of fatigue and measured cognitive performance. But this doesn’t mean that patients don’t really have problems with mental tasks because, as Cockshell pointed out, there was also no correlation in healthy controls either (healthy controls reported some problems with memory and concentration too).

The paper concludes:

“There is little evidence for a relationship between subjective and objective measures of cognitive functioning for both people with CFS and healthy controls, which suggests that they may be capturing different constructs.”

In fact, a lot of evidence now shows that people’s self-reported cognitive problems aren’t matched by the kind of objective tests used in these studies, which does beg the question: Do we need better tests of cognitive problems in the real world?

Stroop testTo understand this issue better, let’s take the example of concentration, which in the real world means problems such as focusing on reading or blocking out background noise. One measure of concentration (or ‘attention’ in the jargon) is the “Stroop” – a quirky test with a quirky name.

The simplest way to see how it works is just to look at the two lists on the left. Don’t read them, instead say the colour each word is displayed in, as quickly as you can. Not so easy, but try it online!

Of course, we never have to do tasks like this in real life (and most other cognitive tests are similarly contrived), so is this a meaningful way to measure patients’ problems? 

One researcher and clinician, Gudron Lange, has highlighted how everyday tasks, such as going shopping, involve multi-tasking, something that most cognitive tests miss.

Lange has suggested using cognitive tests that include multi-tasking – and virtual reality now provides a way to test real-life scenarios using multi-tasking in the lab.

Cockshell agrees that more work is needed in this area:

“I think a better understanding of the cognitive problems occurring in the real world is required … but that’s a whole other area of research.”

Patients don’t overestimate their problems

Some researchers have argued that the problem in CFS isn’t that patients can’t do much or perform well, but that they simply underestimate how much they actually do, almost seeing CFS as a delusion syndrome. But this new study, like several others, found that the theory doesn’t hold up:

“Self-reported problems were not due to people with CFS overestimating their problems, as they were able to accurately evaluate their performance on most cognitive tests.”

In fact, patients were at least as good as controls at judging their own performance.

The future…

These clear findings of extended fatigue after the testing fit with an earlier fMRI study (also by Lange), indicating that CFS patients had to use more brain areas to achieve the same results as healthy controls. As Cockshell says:

“People with CFS may perform comparably to their peers by expending additional cognitive effort, and this may subsequently impact on their levels of fatigue.”

This paper provides powerful new evidence of the problems faced by patients with our condition. Yet the mismatch between reported issues and objective performance suggests there we still haven’t found the best way to measure the very real problems experienced by ME/CFS.

Hopefully, this will soon change.

Susan Cockshell will be speaking about her work at the IACFS Conference on Sunday 23.3.14. Read more: Brain Fog: The research.

Simon McGrath tweets on ME/CFS research:

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{ 89 comments… add one }

  • minkeygirl March 17, 2014, 1:52 pm

    Years ago there was a good article somewhere how thinking and concentrating is completely exhausting for us and I totally agree.

    I know that is one of the huge reasons I can't drive and when I try to fill out forms I can barely last 10 minutes.

  • MeSci March 17, 2014, 1:57 pm

    I hope it's possible to disprove any claims by psychologists/psychiatrists that our cognitive difficulties aren't psychological in origin!

  • Simon March 17, 2014, 4:52 pm
    minkeygirl

    Years ago there was a good article somewhere how thinking and concentrating is completely exhausting for us and I totally agree.

    I know that is one of the huge reasons I can't drive and when I try to fill out forms I can barely last 10 minutes.

    I have to admit that part of my interest in this is that mental fatigue is my most disabling symptom, the thing that stops me doing what I'd like to do more than anything.

    MeSci

    I hope it's possible to disprove any claims by psychologists/psychiatrists that our cognitive difficulties aren't psychological in origin!

    think there might be some cognitive problems showing there :).

  • minkeygirl March 17, 2014, 5:14 pm

    @Simon I think a lot of people don't understand how mental fatigue can be as exhausting as physical fatigue. The amount of energy it takes to concentrate is tremendous.

    When my brain is tired it just exacerbates my overall fatigue.

  • Dolphin March 17, 2014, 7:02 pm

    Thanks @Simon.

    One example of a situation like this is an exam. Although with exams, the exam itself isn't the only mental exertion involved as someone will invariably be studying or revising in the days and/or hours before an exam.

  • minkeygirl March 17, 2014, 7:06 pm

    Try filling out disability paperwork. That'll melt anyone's brain even f they aren't sick!:eek:

  • Firestormm March 17, 2014, 9:52 pm

    I wonder at the extent to which this might be said to be a permanent thing, or whether permanence should also be measured in some way. If for example, I took the test referred to in the article, tomorrow, and then was subsequently tested to see how long it took for me to recover mentally. Then I took the original test again. And again. And Again.

    Might the results over a period of time, show any improvement in recovery time or might they show no change? This would be interesting to learn – perhaps also if the method of testing were varied – but as intense each time – so as to avoid familiarity.

    Anyway, it's definitely an area that we see relatively little research in. And definitely the area – cognitive function and decline – that has affected me most in terms of 'this is upsetting me more than anything else'. I can live with the physical disability – it's this loss of mental agility and inability to recover quickly from the mental exertion and the other cognitive issues: that really *cked me up over the years.

    If you can't walk you can use a wheelchair, if you can't think straight – there are no props :(

  • Valentijn March 18, 2014, 12:48 am
    Firestormm

    If you can't walk you can use a wheelchair, if you can't think straight – there are no props :(

    Being very organized can help somewhat 😛

  • Firestormm March 18, 2014, 1:07 am
    Valentijn

    Being very organized can help somewhat :p

    As can computer enhancements, reading aids, large print, a 'study-budy' when at college or university, help with completing forms, and power of attorney's etc. etc.

    But it doesn't prevent me being more despairing over the loss of my cognitive faculties than I am about my physical ones :p

  • Valentijn March 18, 2014, 1:13 am
    Firestormm

    But it doesn't prevent me being more despairing over the loss of my cognitive faculties than I am about my physical ones :p

    Yeah, I was never Ms Athletic, but I was Ms Smarty all my life. It's hard having that slip away somewhat, and having to pace my brain. I play distracting games and try not to think about it while letting my brain rest :nerd:

  • Simon March 18, 2014, 3:15 am
    minkeygirl

    Try filling out disability paperwork. That'll melt anyone's brain even f they aren't sick!:eek:

    Yes, there should be assessment of mental fatigue after disability assessment too: the post-ATOS fatigue test.

  • Marco March 18, 2014, 3:21 am

    Thanks Simon.

    I'm with you. There's been too much emphasis on 'malaise' following physical exertion which feeds into the whole deconditioning and GET as rehabilitation meme.

    Although I've never been deconditioned as such, physical capacity was pretty irrelevant to my deskbound job and wouldn't have hampered me any more than any other sedentary office worker.

    It was a severe lack of cognitive stamina that was a major contributor to my inability to work and which still interferes with everyday tasks.

    I also agree that real world challenges that involve multi-tasking are more likely to highlight cognitive deficits and their lasting effects that are more than mild or trivial.

    I wrote about this large study that found profound cognitive deficits using a multi-tasking paradigm :

    http://www.cortjohnson.org/blog/2013/07/28/japanese-sensory-gating-stud-reveals-profound-cognitive-deficits-present-in-chronic-fatigue-syndrome/

    This is a very under-researched area and one that I feel may be much more relevant to what's going on than physical fatigue.

  • justy March 18, 2014, 3:36 am
    Dolphin

    Thanks @Simon.

    One example of a situation like this is an exam. Although with exams, the exam itself isn't the only mental exertion involved as someone will invariably be studying or revising in the days and/or hours before an exam.

    I have an exam coming up with the OU. They say they make allowances for disabilities etc, but all they are offering is an exam in the home – which is good, but I don't know how I am going to get through it, especially with all the revising beforehand and the stress of the worry of it all. Other universities will allow other types of assessment if you cant sit exams, but no the Open University – and they tell me they have no plans to ever do so.

    Such a shame as I am doing very well on my assessed work, sure the exam will bring my overall grade down.

    (Sorry a bit off topic)

  • MeSci March 18, 2014, 4:27 am
    justy

    I have an exam coming up with the OU. They say they make allowances for disabilities etc, but all they are offering is an exam in the home – which is good, but I don't know how I am going to get through it, especially with all the revising beforehand and the stress of the worry of it all. Other universities will allow other types of assessment if you cant sit exams, but no the Open University – and they tell me they have no plans to ever do so.

    Such a shame as I am doing very well on my assessed work, sure the exam will bring my overall grade down.

    (Sorry a bit off topic)

    They should allow you break periods. I used to do my OU exams at home too, and it had to be on computer as I can't write for long before my hands pack up. Do you have a hammer to bang all the facts into your head? (I used to feel as though I needed this!)

    Good luck!!!!:)

  • peggy-sue March 18, 2014, 5:29 am

    That is most unlike the OU. I am very disappointed in them – this is the first time I have ever said that.:(

    I wish you all the best, Justy! :thumbsup:
    I hope you're having a really good day on the day of the exam and will cope with it as easily as is possible.
    Plenty of sleep – you need sleep to consolidate anything you've learned.

    If it does go badly, you do have your continuous assessment marks to support an appeal.:hug:

    There is a test I know is available on computers which is a dual task thing. Not multitasking, but it tests straight memory and working memory at the same time. (I used it in my Hons. thesis)

    There is a word recognition task and an arithmetic task. I found that under duress, the word recognition task was no different to not under duress, but that the arithmetic task went right downhill.
    The task seperates working memory function from simple recall.

  • peggy-sue March 18, 2014, 9:25 am

    It also explains why, when you are being grilled and you are stressed out, you can produce words, but cannot think straight at all, and end up looking stupid.
    It's "the wheel is turning but the hamster is dead" thing.

  • Valentijn March 18, 2014, 9:31 am
    peggy-sue

    It's "the wheel is turning but the hamster is dead" thing.

    Poor little dead hamster, spinning around in the wheel :sluggish:

  • MeSci March 18, 2014, 9:32 am
    peggy-sue

    It's "the wheel is turning but the hamster is dead" thing.

    Oh, poor Hammy – can't he just be having a nap? 😀

  • peggy-sue March 18, 2014, 9:34 am

    He's got ME and bad brain-fog. :(

  • A.B. March 18, 2014, 3:15 pm
    MeSci

    I hope it's possible to disprove any claims by psychologists/psychiatrists that our cognitive difficulties aren't psychological in origin!

    It's not possible. Claims of psychosomatic illness are not tied to any objective criteria, so they cannot be proven or disproven. They are purely a matter of faith.

  • Simon March 18, 2014, 4:39 pm
    Marco

    Thanks Simon.

    I'm with you. There's been too much emphasis on 'malaise' following physical exertion which feeds into the whole deconditioning and GET as rehabilitation meme.

    Although I've never been deconditioned as such, physical capacity was pretty irrelevant to my deskbound job and wouldn't have hampered me any more than any other sedentary office worker.

    It was a severe lack of cognitive stamina that was a major contributor to my inability to work and which still interferes with everyday tasks.

    I also agree that real world challenges that involve multi-tasking are more likely to highlight cognitive deficits and their lasting effects that are more than mild or trivial.

    I wrote about this large study that found profound cognitive deficits using a multi-tasking paradigm :

    http://www.cortjohnson.org/blog/201…deficits-present-in-chronic-fatigue-syndrome/

    This is a very under-researched area and one that I feel may be much more relevant to what's going on than physical fatigue.

    Thanks, Marco, and an interesting blog of yours too.

    I think both mental and physical fatigue are valid to measure but I wish mental fatigue wasn't so neglected. I've had relapses from both physical and mental overexertion and, as you say, mental fatigue is hard to explain by deconditioning. I once met someone who was permanently bedbound due to his condition, yet could watch a whole film – something I could only dream of at the time as a 5-min conversation exhausted me.

    I've been very impressed by Susan Cockshell and hope that she, and people like her, will start to throw more light on the cognitive problems in this illness. I think that so far researchers have only scratched the surface.

  • soxfan March 18, 2014, 6:37 pm

    This is my most disabling symptom as well..it was interesting to read what I have known all along. I was able to do.my job fine but after a 6 hour shift I could barely make it home as the mental exhaustion was horrible . I also have huge problems just riding in a car for long periods of time as just looking around and taking in the traffic and scenery will exhaust me for days. That is why I can't drive far..I am okay getting there but after doing errands etc..I am fried. I really have no problems physically but the mental fatigue is very disabling and feels so bad….

  • MeSci March 19, 2014, 3:20 am
    A.B.

    Claims of psychosomatic illness are not tied to any objective criteria, so they cannot be proven or disproven. They are purely a matter of faith.

    What if a large, double-blinded study showed that patients responded well to a physiology-based treatment, so that they no longer had any symptoms that might be attributed to psychological causes? Hasn't this happened in the past with illnesses once thought to be psychological?

  • Simon March 19, 2014, 3:31 am
    MeSci
    A.B.

    Claims of psychosomatic illness are not tied to any objective criteria, so they cannot be proven or disproven. They are purely a matter of faith.

    What if a large, double-blinded study showed that patients responded well to a physiology-based treatment, so that they no longer had any symptoms that might be attributed to psychological causes? Hasn't this happened in the past with illnesses once thought to be psychological?

    Showing that peptic ulcers were caused by the bacterium H. pylori and can be treated with antibiotics is the classic case.

    I've always thought that the only way the psychosomatic argument will finally be laid to rest is by positively proving what does cause ME/CFS, whether that involves physiology-based treatment or not (though clearly treatment would help). It's possible that some cases of CFS do have an important causal psychological component and maybe that's a relevant subgroup, but only a subgroup.

  • A.B. March 19, 2014, 3:37 am
    MeSci

    What if a large, double-blinded study showed that patients responded well to a physiology-based treatment, so that they no longer had any symptoms that might be attributed to psychological causes? Hasn't this happened in the past with illnesses once thought to be psychological?

    In practice psychosomatic explanations are abandoned once concrete physiological explanations are found. However, whereas previously the idea was that there are no physiological abnormalities, when faced with evidence for the contrary, the psychosomatic camp seems to be shifting their stance towards claiming that the mind is creating the physiological abnormalities fully in some cases, and at least in part in others. Essentially the psychosomatic camp is trying to position themselves as relevant in illness, and it's still not possible to prove or disprove their claims.

  • MeSci March 19, 2014, 4:24 am
    Simon

    Showing that peptic ulcers were caused by the bacterium H. pylori and can be treated with antibiotics is the classic case.

    I've always thought that the only way the psychosomatic argument will finally be laid to rest is by positively proving what does cause ME/CFS, whether that involves physiology-based treatment or not (though clearly treatment would help). It's possible that some cases of CFS do have an important causal psychological component and maybe that's a relevant subgroup, but only a subgroup.

    Yes, I agree that some of us probably have a psychological component in the initial causation (ditto for a range of other physical illnesses), but not in the perpetuation of the illness, so psychological treatments are pointless once any psychological (as opposed to neurological and cognitive) problems have gone, leaving just the physical consequences. I often use the analogy of the folly of trying to treat a bullet wound by putting the bullet back in the gun.

  • Firestormm March 19, 2014, 4:30 am

    And what if the bullet cannot be taken from the wound, or the wound will not heal: how do you help people to learn to live with the horrors of a gunshot wound? Or the medicine proves too expensive for everyone to receive? If a cause is established and a treatment that heals can be made available to one-and-all: great. Chances are it wont happen like that. 'Psychology' ain't all bad and much counseling may still be required. But it would remove theories pertaining to a 'psychological' cause – provided of course your particular ME was the one that had the biomarker.

  • Rachael March 19, 2014, 5:13 am

    Easily, overwhelmed?

    I would bet that most people who go on to develop ME/CFS were born "highly sensitive".. This is a normal trait found in 15 to 20 percent of the population. The brains of highly sensitive persons (HSPs) actually work a little differently than others. Highly sensitive people are born more susceptible to physical, emotional and mental exhaustion.

    Are You Highly Sensitive?

    A Self-Test http://www.hsperson.com/pages/test.htm

  • Valentijn March 19, 2014, 5:42 am
    Rachael

    I would bet that most people who go on to develop ME/CFS were born "highly sensitive".. This is a normal trait found in 15 to 20 percent of the population. The brains of highly sensitive persons (HSPs) actually work a little differently than others. Highly sensitive people are born more susceptible to physical, emotional and mental exhaustion.

    What a bunch of pointless garbage.

  • A.B. March 19, 2014, 5:49 am
    Valentijn

    What a bunch of pointless garbage.

    Surely you meant to say "What a bunch of psychobabble"?

  • adreno March 19, 2014, 5:53 am
    Firestormm

    If you can't walk you can use a wheelchair, if you can't think straight – there are no props :(

    Well, there are some cognitive enhancers available.

  • user9876 March 19, 2014, 6:00 am
    Rachael

    Easily, overwhelmed?

    I would bet that most people who go on to develop ME/CFS were born "highly sensitive".. This is a normal trait found in 15 to 20 percent of the population. The brains of highly sensitive persons (HSPs) actually work a little differently than others. Highly sensitive people are born more susceptible to physical, emotional and mental exhaustion.

    Are You Highly Sensitive?

    A Self-Test http://www.hsperson.com/pages/test.htm

    Having looked at the set of questions it seems to me they are lumping together different concepts. I haven't looked at any papers so I have no idea as to whether such clustering is justified. Then there is the reading of generalizable consequences into their very broad classification.

    Put simply they seem to lump together physical sensitivity (i.e. people with good senses) with emotional sensitivity (people who have good empathy with others) along with other concepts as well. Can this be justified in terms of then giving a broad label to a person when the actual characteristics of two people with the same label need not overlap much.

    It seems to me that researchers get away with this type of approach due to the lack of an underlying mathematical formalism which allows them to never state a hypothesis which if they did wouldn't be meaningful.

  • adreno March 19, 2014, 6:04 am

    This study found a CFS cohort no more sensitive than controls:

    An investigation of sympathetic hypersensitivity in chronic fatigue syndrome.

    OTOH, the authors of this paper suggest "sustained arousal" in CFS:

    Abstract
    We present an integrative model of disease mechanisms in the Chronic Fatigue Syndrome (CFS), unifying empirical findings from different research traditions. Based upon the Cognitive activation theory of stress (CATS), we argue that new data on cardiovascular and thermoregulatory regulation indicate a state of permanent arousal responses – sustained arousal – in this condition. We suggest that sustained arousal can originate from different precipitating factors (infections, psychosocial challenges) interacting with predisposing factors (genetic traits, personality) and learned expectancies (classical and operant conditioning). Furthermore, sustained arousal may explain documented alterations by establishing vicious circles within immunology (Th2 (humoral) vs Th1 (cellular) predominance), endocrinology (attenuated HPA axis), skeletal muscle function (attenuated cortical activation, increased oxidative stress) and cognition (impaired memory and information processing). Finally, we propose a causal link between sustained arousal and the experience of fatigue. The model of sustained arousal embraces all main findings concerning CFS disease mechanisms within one theoretical framework.

    I guess sustained arousal would cause someone to be hypersensitive, and perhaps vice versa.

  • MeSci March 19, 2014, 7:45 am
    adreno

    This study found a CFS cohort no more sensitive than controls:

    An investigation of sympathetic hypersensitivity in chronic fatigue syndrome.

    OTOH, the authors of this paper suggest "sustained arousal" in CFS:

    I guess sustained arousal would cause someone to be hypersensitive, and perhaps vice versa.

    I find it perfectly scientifically plausible that people can be born with unusually-high psychological sensitivity, and can also acquire such sensitivity due to prolonged psychological stress in childhood, via effects on the stress hormone system, as we have discussed elsewhere.

    This paper provides some evidence on the effects of maternal stress on a foetus.

    I am not looking to blame mothers, by the way!

  • adreno March 19, 2014, 7:47 am
    MeSci

    I find it perfectly scientifically plausible that people can be born with unusually-high psychological sensitivity, and can also acquire such sensitivity due to prolonged psychological stress in childhood, via effects on the stress hormone system, as we have discussed elsewhere.

    This paper provides some evidence on the effects of maternal stress on a foetus.

    I am not looking to blame mothers, by the way!

    This is known as the kindling model:

    Neurosci Med. 2011 Mar 1;2(1):14-27.
    An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
    Jason LA1, Sorenson M, Porter N, Belkairous N.
    Author information

    Abstract
    Kindling might represent a heuristic model for understanding the etiology of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Kindling occurs when an organism is exposed repeatedly to an initially sub-threshold stimulus resulting in hypersensitivity and spontaneous seizure-like activity. Among patients with ME/CFS, chronically repeated low-intensity stimulation due to an infectious illness might cause kindling of the limbic-hypothalamic-pituitary axis. Kindling might also occur by high-intensity stimulation (e.g., brain trauma) of the limbic-hypothalamic-pituitary axis. Once this system is charged or kindled, it can sustain a high level of arousal with little or no external stimulus and eventually this could lead to hypocortisolism. Seizure activity may spread to adjacent structures of the limbic-hypothalamic-pituitary axis in the brain, which might be responsible for the varied symptoms that occur among patients with ME/CFS. In addition, kindling may also be responsible for high levels of oxidative stress, which has been found in patients with ME/CFS.

  • MeSci March 19, 2014, 7:48 am
    Firestormm

    And what if the bullet cannot be taken from the wound, or the wound will not heal: how do you help people to learn to live with the horrors of a gunshot wound? Or the medicine proves too expensive for everyone to receive? If a cause is established and a treatment that heals can be made available to one-and-all: great. Chances are it wont happen like that. 'Psychology' ain't all bad and much counseling may still be required. But it would remove theories pertaining to a 'psychological' cause – provided of course your particular ME was the one that had the biomarker.

    Now you have taken my simple analogy and gone on a convoluted journey with it, and I am lost!

    Of course if someone is suffering from the effects of emotional trauma it is sensible to treat it. Please note the pertinent phrase in my message to which you appear to be replying:

    …psychological treatments are pointless once any psychological (as opposed to neurological and cognitive) problems have gone, leaving just the physical consequences.

  • Sparrow March 19, 2014, 3:59 pm

    I do think multi-tasking is a critical area to test. I can sustain more normal levels of certain types of thinking for far longer, but trying to hold multiple concepts in my working memory at once is far and away one of the most difficult things for me to do (like remembering a phone number while also doing some kind of other simple processing, for example, is brutal. Remembering two sets of rules and comparing them would be really hard too. Anything where I have to retain information about two things at once). I can write a little if I do it train of thought, but editing, modifying, moving phrases around is exhausting and brings on my particular kind of head/spine pain.

    I've tried to pay close attention to what is harder for me, and I'm quite certain it has something to do with my working memory. It would be interesting to know if that was true for many patients, though, or if it's unique to me or a subset.

    I've always found it so weird that certain kinds of mental effort are so much easier than others. I can still answer trivia questions on a really bad day. But I can't follow simple instructions, or do basic math that involves more than one step at once.

  • SOC March 19, 2014, 9:19 pm
    Rachael

    Easily, overwhelmed?

    I would bet that most people who go on to develop ME/CFS were born "highly sensitive".. This is a normal trait found in 15 to 20 percent of the population. The brains of highly sensitive persons (HSPs) actually work a little differently than others. Highly sensitive people are born more susceptible to physical, emotional and mental exhaustion.

    Are You Highly Sensitive?

    A Self-Test http://www.hsperson.com/pages/test.htm

    No, I'm not easily overwhelmed. Neither is my daughter or my uncle, both PWME as well. We aren't "highly sensitive", either. I'm willing to bet we are not alone among PWME.

    This "highly sensitive person" stuff reads like a bunch of psychobabble conflating empathy with acute senses for no other reason than that the word "sensitive" is often used in the context of both situations.

  • peggy-sue March 20, 2014, 4:35 am

    I often find myself in a situation where Michael will ask me where something is.:rolleyes:
    Despite my being is a bad physical way at the time, I still find it easier to get up and get whatever he is asking for,
    rather than to try describe where it is.

    Then he moans about me wasting energy. :(

    Simple recall of facts does not require too much input from working memory, (the trivia Sparrow mentions) but working something out (arithmetic) where you have to do things with facts in the working memory does take a lot of effort.

  • Valentijn March 20, 2014, 5:46 am
    peggy-sue

    I often find myself in a situation where Michael will ask me where something is.:rolleyes:
    Despite my being is a bad physical way at the time, I still find it easier to get up and get whatever he is asking for,
    rather than to try describe where it is.

    Can't you just point and make gestures? Works for me 😀

  • Rachael March 20, 2014, 6:00 am

    I am a person with Myalgic Encephalomyelitis (25 + years) who has learned how to control my illness by suppressing my immune system with a variety of supplements and medications. In doing so, I have gone from completely bedridden to a high-functioning sufferer of ME/CFS.

    In reference to my post, that some people who develop ME/CFS may have been born "highly sensitive", that doesn't mean I believe that ME/CFS is not a physical illness. I believe that ME/CFS is a state of chronic immune system activation. I also believe, that you first have to have the genetic susceptibility to develop ME/CFS and there are many triggers (viruses, chemicals etc).

    The immune system in PWME is in a perpetual state of overdrive, that lends sufferers to experience debilitating malaise and exhaustion. Some people may be more vulnerable to develop illnesses like ME//CFS, or other autoimmune type illnesses. The brains of "highly sensitive" people have more activity and blood flow in the right hemisphere (seen on PET scans). Likewise, they have more reactive immune systems (allergies) and more sensitive nervous systems. So, it doesn't seem unreasonable to consider that many with ME/CFS may have been born with the trait of "high sensitivity" and that something in the environment provoked their immune system's into a chronic state of activation, as it did with me.

  • peggy-sue March 20, 2014, 6:06 am

    He's not too good at understanding flapping hands and loads of "thingys" and "wotsits" and "doofers".:rolleyes:
    I just get frustrated – it's just easier to go get it.

    My legs are probably my fittest feature. I did 18 hours a week swimming training when I was a child, my legs are solid muscle and seriously chunky. I was good at stamina, not speed. Then I did 3 years of yoga (just before getting sick) – at 5 hours a week practise.
    Yoga strengthens core muscles and the slow fibre muscles – the stamina bit, so I reckon my legs can cope with ME fairly well. They were prepared for being able to work really well on just anaerobic metabolism.

    Pointing and making gestures might work – if our house wasn't so untidy and crammed full of stuff and heaps of things.

    If I point, it could be at any number of things, and it's probably at the bottom of a heap of something anyway.:redface:

  • greebo March 20, 2014, 7:54 am
    peggy-sue

    I often find myself in a situation where Michael will ask me where something is.:rolleyes:
    Despite my being is a bad physical way at the time, I still find it easier to get up and get whatever he is asking for,
    rather than to try describe where it is.

    I have that too. Also, when I want something done, a small chore or whatever, I find it much easier to do it myself than to describe the task to my partner…

  • peggy-sue March 20, 2014, 8:55 am

    Yes, the right words are so hard to find, aren't they?
    Then you have to get them in the right order, and make sure you are describing what you mean to,

    It's just easier to move the legs and arms a bit and go get the thing.

  • Wayne March 21, 2014, 2:28 pm
    Rachael

    I am a person with Myalgic Encephalomyelitis (25 + years) who has learned how to control my illness by suppressing my immune system with a variety of supplements and medications. In doing so, I have gone from completely bedridden to a high-functioning sufferer of ME/CFS. —— I believe that ME/CFS is a state of chronic immune system activation. I also believe, that you first have to have the genetic susceptibility to develop ME/CFS and there are many triggers (viruses, chemicals etc).

    Wow Rachael, quite a remarkable post. Congratulations on learning how to control your illness! I've long felt many of my symptoms are a result of an up-regulated immune system, and I've often experimented with immune modulating herbs and supplements. My hope was they would support some parts of my immune system, and down-regulate other parts.

    I never seemed to experience any noticeable improvements, whether it was Moducare, various mushrooms, sterols and sterolins, etc. But I never thought about trying to directly suppress my immune system, which is quite an intriguing concept for me. Could you share how you came to decide this was what you needed to do, and what kind of ongoing protocol you follow? Much appreciated!

    BTW, I share some of your perspectives on "highly sensitive". I once read that part of the function of the physical body is to protect us from "the harsh vibrations of the physical world" (or something to that effect). And I've wondered if my own sensitivity is a result of very compromised physical health, leading to my body's inability to filter out some of the harshness we're surrounded by in this world we live in. Perhaps especially from some of our modern communications technologies.

    Thank you for your post. :thumbsup:

    Wayne

  • Leopardtail March 21, 2014, 2:44 pm
    peggy-sue

    It also explains why, when you are being grilled and you are stressed out, you can produce words, but cannot think straight at all, and end up looking stupid.
    It's "the wheel is turning but the hamster is dead" thing.

    have to agree with that one Peggy… or appearing coherent but not being able to put your thoughts together

  • peggy-sue March 21, 2014, 3:07 pm

    I honestly believe that this is something that should be much better known.

    It happens to not just PWME, but to many folk, in very important situations, such as in court, or at a tribunal or whatever.

    You look as if you're coherent, but in reality you're not, so you get shafted.

  • Leopardtail March 21, 2014, 4:28 pm

    The single benefit of ME having been classed as a 'mental illness' in the UK was that you could formerly insist in 'support' to stop that happening.

  • Hip March 21, 2014, 5:09 pm

    Has anyone noticed that mental exhaustion occurs much more after mental tasks or activities which are stimulating, exciting, and which involve conforming to a constant stream of what I will call "micro-deadlines"? This is compared to tasks which are meditative, relaxing and don't involve any particular time deadlines — these I don't find particularly mentally exhausting.

    By micro-deadlines, I mean situations where your brain has to respond within very short time scales, like within seconds or mintues. An example is a face-to-face conversation, where you tend to automatically and immediately respond to what the other person has said; or an instant messaging (IM) conversation on a computer, where you have to respond relatively quickly to the other person online. Both these activities involve a a constant stream of micro-deadlines while they are taking place, and I find this produces too much mental arousal and stimulation, which exhausts me afterwards.

    I have noticed that I can spend 4 hours straight of writing comments online (like on this forum) and writing emails, and I feel fine afterwards, because I find that these activities are meditative, relaxing and do not involve micro-deadlines.

    However, if I spent say 2 hours in an instant messaging conversation online, using the same computer, I would find myself quite drained and mentally exhausted and numb afterwards, because this is an activity which to me is stimulating, exciting, and requires me to mentally respond to a long series of micro-deadlines. This requirement to respond to micro-deadlines seems to place the brain in a higher state of alert or arousal, and I think it may be this which, at least in my case, causes much faster depletion of mental energy.

    I never use instant messaging for this very reason. I always prefer to communicate by email, which I can do at my own relaxed pace, so it does not deplete mental energy as fast.

    And for this same reason, I have to limit and ration my social activities each week. If I go out to see some friends, and I spend say an evening of 3 or 4 hours talking to friends, this leaves me quite mentally numb afterwards, and for the next day or two, even though during the socializing, I am quite energetic and animated in conversation. The PEM exhaustion only hits me some hours later, and in the next day or two.

    Thus I actually lose productive days in my week, just from that 3 or 4 hours of socializing. My ME/CFS is a bit better now, but a while ago I would find myself so mentally shattered the day following an evening of socializing, that I would be unable to do even simple mental tasks, like responding to an email. I just was a mental zombie the day following socializing, with some recovery appearing by the second day. So I tend to limit my social evenings out to no more than once a week, if I can help it. I am fine, however, if I keep my daily total social conversations to just 30 minutes or so. This small dose of socializing produces no adverse effects.

    Anyone else relate to this? Anyone else find that activities which are stimulating, exciting, with a long stream of micro-deadlines, leave you far more exhausted afterwards, compared to activities which are meditative, relaxing, and without micro-deadlines?

  • Rachael March 21, 2014, 6:19 pm

    Hi Wayne:

    Basically, the two things have helped me the most to calm my hyper-immune response are the amino acid tyrosine (dopamine) in small amounts and sedating antihistamines. I give my body the things it needs to restore itself and to calm it down. I also supplement with salmon oil, tyrosine (just a dab), MSM (sulfur also a very small daily amount) and glucose to restore my small dopamine reserves and re-fuel my body. I use sedating antihistamines at bedtime to calm my hyper-immune system and I take pain killers such as aspirin if needed. I am not recommending this to anyone else because we are all different and I am not a doctor, but for me it works. This is how I manage my ME/CFS symptoms.

    I'll try to keep a very long story, short, but like most people who become ill with ME/CFS, at first I thought that I had some sort of virus, or infection, that just wouldn't go away. However, antivirals and antibiotics didn't improve my symptoms, in fact they made me feel much worse. I felt like I had a constant hangover, or a terrible flu, was seasick, or was suffering from morning sickness. I had always been very sensitive to alcohol, chemicals, prescription meds, stress, exercise etc. I eventually came to the conclusion, that my body wasn't fighting a virus, that it couldn't rid itself of, but my immune system was over-reacting to just about everything it deemed foreign. I read everything I could about the symptoms I was experiencing and discovered through much research, that pregnant women who suffered from morning sickness were at one time given antihistamines to control their feelings of malaise. I tried sedating antihistamines and after much trial and error I found a dosage that helped me manage my symptoms.

    I believe the reason some people seem to be able to handle stress, exercise and toxins etc better than others, or have more energy in general is because they already have large capacity stores of the fuel (dopamine) to cope with these events. Dopamine can act like a brake on the immune system. Diminished dopamine levels in the brain cause prolactin levels to rise. Prolactin enhances the progression of the immune process in autoimmune diseases because of its involvement in many immunological activations (up-regulating the immune system). Tyrosine has the ability to manufacture dopamine neurotransmitters, I take tyrosine, but only a small daily amount because I believe my dopamine storage capacity is not large, but small.

    Hope this helps a little, Wayne. We are all very different and in fact, I don't think we all have the same illness. So, while this protocol may be beneficial to me, it may do absolutely nothing, or be very detrimental to another ME/CFS sufferer.

    All the best
    Rachael