Cognitive testing causes mental exhaustion lasting days

March 17, 2014

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

{ 89 comments… read them below or add one }

minkeygirl March 17, 2014 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 :-P

Firestormm March 18, 2014 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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? :D

peggy-sue March 18, 2014 at 9:34 am

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

A.B. March 18, 2014 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 5:49 am
Valentijn

What a bunch of pointless garbage.

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

adreno March 19, 2014 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 :D

Rachael March 20, 2014 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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 at 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

MeSci March 22, 2014 at 4:26 am
peggy-sue

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.

That used to be me after a heavy session at the pub!:lol: I very rarely appeared intoxicated to other people, but I sure was.

Now I sometimes appear intoxicated when I haven't touched a drop…:(

I don't think people realise when I have brain fog, hence the leaflet I have produced to give guests. But it's hard to tell at the time…because I have brain fog.

MeSci March 22, 2014 at 4:34 am
Hip

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?

With me it's simply a case of not being to process information fast enough, just as my muscles won't respond fast enough for me to do things more quickly. I think that's standard for ME. As soon as I try to think fast, my brain seems to stop working, and as soon as I try to walk faster, e.g. to keep up with someone, my legs turn to jelly and I am out of breath and exhausted.

I had to spend about an hour on the phone a few years ago, with two (or was it three?) people at the other end, essentially interviewing me for a work contract. Because I desperately needed the money, I made what felt like a superhuman effort to concentrate. Afterwards I collapsed in a chair, my brain completely shattered and unable to think at all. It took about half an hour or more to recover.

As I think someone has said above, we have to use more of our brain to process information than non-ME people, which could account partly for the fatiguability.

peggy-sue March 22, 2014 at 5:54 am

That has actually been demonstrated with fMRI or EEGs, can't remember which, which confirms it as being a reality, not a theory. That more brain areas are called on to achieve some mental process…

peggy-sue March 22, 2014 at 10:28 am

Hip, I can't cope with the chat feature on this site – far too complicated and confusing.:(
Like you, I like emails and messages on threads, where I can deal with little bits at my own speed and while my brain is in gear for that subject.

I feel bad about ignoring some folk who have asked me for chats – but I simply cannot cope with them.

Leopardtail March 22, 2014 at 11:04 am
Wayne

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

Wayne,

when 'joe public' talks about the immune system it's normally infections that are being talked about. It's important to remember though that it's also responsible for getting rid of old bits of cells that are past their cell-by date, by-products of chemical reactions in the body and so on. The evidence on the immune system is still coming in but there are quite a few strange things going on. Rather than thinking of the immune system being over-active, or under-active, you need to think more of it being 'out of balance' in ME. We do (often) under-produce various hormones that regulate the immune system.

Whether impaired immunity causes ME or vice-versa has been one of the hot topics of medical science. One thing that does seem certain though, is that once you have ME boosting your immune system is a must. The most obvious things you can do without your doctors helps is make sure you are taking plenty of antioxidants. Vitamin C is used for a whole bunch of stuff and I found I did not start recovering until I took 5000mg per day. Carnitine and Alpha Lipoic acid are also among the things recommended by KDM.

People show mixed reactions but I found that Ribose combined with Acetyl-L-Carnitine most effect but both should be taken with food. Negative side effects are more likely on an empty stomach and more likely in the first few weeks.

What are your main symptoms Wayne?

Leo.

Leopardtail March 22, 2014 at 11:14 am
Hip

Has anyone noted, as I have in myself, 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", compared to tasks which are meditative, relaxing and don't involve any particular time deadlines.

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.

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 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. 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.

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?

The part I recognise most is 'rapid demand' quickly followed by 'multi-tasking'.

For example I can cope with one person talking to me at once without too much trouble (with moderate fatigue) but can't cope with multiple people talking and the timing of 'who speaks next'. With very heavy fatigue though I do need 'time alone'.

I can also find anything that bombards me with information (e.g. fast moving plots on TV) equally difficult to deal with. My speed of processing is MUCH lower than it used to be. The thing I find most damaging though are things like government forms where you have to get it right and communication is not at all interactive. I find that part of communication where you have to 'imagine how this well be read' really very demanding.

Hip March 22, 2014 at 12:41 pm
peggy-sue

Hip, I can't cope with the chat feature on this site – far too complicated and confusing.:(
Like you, I like emails and messages on threads, where I can deal with little bits at my own speed and while my brain is in gear for that subject.

Yes, me too. I have the chat feature on this site switched off, just because I know if I get into an instant messaging conversation, it will make my brain feel numb afterwards.

peggy-sue March 22, 2014 at 12:44 pm

Can it be turned off?
How?

If I do that, will the folk who have tried to, or might try to, chat with me, know that it is turned off?

If that were the case, I wouldn't have to feel so bad about ignoring folk.

MeSci March 22, 2014 at 1:12 pm
peggy-sue

Can it be turned off?
How?

I asked this and got an effective answer – to my great relief! See this thread.

The chat bar was driving me mad. I can't cope with things moving on screen or getting in the way when I am trying to read text.

I have no idea whether people will know that you have it turned off. Maybe you could have a message in your profile that says you can't cope with chat?

Hip March 22, 2014 at 1:15 pm

@peggy-sue
Yes, to turn off chat, just click on the rightmost chat tab (the one that says ".. People Here"). Then at the top of the chat window that pops up, the click on the little cog wheel symbol, and select "Turn Off".

peggy-sue March 22, 2014 at 1:27 pm

Wheeeee, thanks, Hip!

I was even able to read your instructions at the same time as doing it – no horrid little computery boxy bits appeared occluding everything, I didn't have to keep bouncing from one window to another, forgetting what I'd just read by the time I get the next one open.

Why can't the business of using computers be made people friendly?

Thanks for that idea, MeSci:love:
As you might be able to see, I have done it. Hopefully, if I've ignored somebody, they'll see it (unless they've got me on an ignore because of my "rudeness")

Wayne March 22, 2014 at 1:42 pm
Hip

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?

I can totally relate, on just about every count. Trying to keep up with conversations is especially challenging. When the conversants are people who tend to interrupt each other, it's even more difficult. I much prefer one person at a time talking, not only in personal conversations, but in TV interviews where's there's more than one guest.

MeSci March 22, 2014 at 2:00 pm
Wayne

I can totally relate, on just about every count. Trying to keep up with conversations is especially challenging. When the conversants are people who tend to interrupt each other, it's even more difficult. I much prefer one person at a time talking, not only in personal conversations, but in TV interviews where's there's more than one guest.

I have to turn off programmes where people interrupt each other, or talk at the same time, or when random music keeps kicking in during speech. I often find myself clutching my head in distress and shouting "Stop it!" or similar as I rush to turn it off.

peggy-sue March 22, 2014 at 2:06 pm

I wish they wouldn't put such loud background music behind speech.

Are there not tvs with a feature for turning background noise off, to assist folk with hearing difficulties?

I have to look away if things move too fast (can't stand "action" films) and ask M who got killed and who survived.

I spent the entire film Braveheart, unable to look at anything, so I've not a clue what happened. It was just a lot of unpleasant noise.

I can't bear audience noise, or applause…
I'm a right moaner.:rolleyes:

Hip March 22, 2014 at 2:48 pm

One of the things I find grates on the mind is the fast-paced camera editing used in many modern films, where you never get more than around 3 seconds on any one scene or face, before the next scene appears, ie, where the whole film is just a series of short edits around 3 seconds long. The Bourne Identity is one such film like this that comes to mind.

My brain finds it uncomfortable to process this constant rapid change of visual scenery in these films. For healthy people, no doubt this fast-paced editing lends an edgy, exciting feel to the film; but for me, it ruins my enjoyment of the film.

Also, the shaky camerawork used in many modern films I find a little unpleasant.

I prefer older films, where cameras were solidly fixed to dollies, so that they did not shake, and where directors tended to use lingering, longer shots on scenes and faces.

Leopardtail March 22, 2014 at 3:31 pm
peggy-sue

I wish they wouldn't put such loud background music behind speech.

Are there not tvs with a feature for turning background noise off, to assist folk with hearing difficulties?

I have to look away if things move too fast (can't stand "action" films) and ask M who got killed and who survived.

I spent the entire film Braveheart, unable to look at anything, so I've not a clue what happened. It was just a lot of unpleasant noise.

I can't bear audience noise, or applause…
I'm a right moaner.:rolleyes:

My TV is an LG. It can't turn background music off, but does have some mysterious feature that selectively boosts voice VERY well and thereby allows volume to be turned down. That prevents the loud music terrorising me. Lot's of TV's have this feature but it works much better on the LGs – it also has very good sound quality which helps me a lot. There is a company called "Richer Sounds" that sells via the web in britain and gives much better info on sound issues.

Wayne March 22, 2014 at 3:44 pm

Ditto, ditto, ditto on the comments about unwelcome music (even in PBS documentaries for heaven's sake), and fast paced camera and film editing. They apparently believe they need to do this to keep viewers' attention, but research has been done showing that slow-paced learning of all kinds keeps people's attention far better.

Valentijn March 23, 2014 at 2:03 am
Leopardtail

My TV is an LG. It can't turn background music off, but does have some mysterious feature that selectively boosts voice VERY well and thereby allows volume to be turned down. That prevents the loud music terrorising me. Lot's of TV's have this feature but it works much better on the LGs – it also has very good sound quality which helps me a lot. There is a company called "Richer Sounds" that sells via the web in britain and gives much better info on sound issues.

If you have surround sound, and the program supports it, you can use that to listen. And you can change the settings to make the center speaker (which usually has the dialogue coming out of it) much louder. I turn that one up as much as possible, and I also turn the bass down as far as possible. Then everything sounds about right – I can hear the dialogue without my eardrums being blown away by special effects noises.

MeSci March 23, 2014 at 3:08 am
Hip

One of the things I find grates on the mind is the fast-paced camera editing used in many modern films, where you never get more than around 3 seconds on any one scene or face, before the next scene appears, ie, where the whole film is just a series of short edits around 3 seconds long. The Bourne Identity is one such film like this that comes to mind.

My brain finds it uncomfortable to process this constant rapid change of visual scenery in these films. For healthy people, no doubt this fast-paced editing lends an edgy, exciting feel to the film; but for me, it ruins my enjoyment of the film.

Also, the shaky camerawork used in many modern films I find a little unpleasant.

I prefer older films, where cameras were solidly fixed to dollies, so that they did not shake, and where directors tended to use lingering, longer shots on scenes and faces.

TV news and documentaries often use these silly effects now, such as suddenly switching from colour to monochrome and back again, going from a full-body shot to a close-up of someone's hands, etc. It's as though the cameraperson feels compelled to show off all the weird arty techniques they have learned, or wants to dictate to the viewer what s/he should be focusing on.

I like to decide what to focus on, and we are all different, so I wish they would just give us the full shot and let us look around as we do when interacting in real life.

It has also become increasingly common on UK TV to suddenly change the speed of a price of film.

Like you, I just find it all so distracting that I can't follow what's happening.

Some of this is probably due to fatigue of the eye muscles.

Leopardtail March 23, 2014 at 5:39 am
MeSci

TV news and documentaries often use these silly effects now, such as suddenly switching from colour to monochrome and back again, going from a full-body shot to a close-up of someone's hands, etc. It's as though the cameraperson feels compelled to show off all the weird arty techniques they have learned, or wants to dictate to the viewer what s/he should be focusing on.

I like to decide what to focus on, and we are all different, so I wish they would just give us the full shot and let us look around as we do when interacting in real life.

It has also become increasingly common on UK TV to suddenly change the speed of a price of film.

Like you, I just find it all so distracting that I can't follow what's happening.

Some of this is probably due to fatigue of the eye muscles.

Not sure about eye muscles (for me personally), but it definitely overloads cognition. Where they are jumping backwards and forwards in time though, I do find it helpful when the 'historical stuff' is in mono – lowers cognitive demand. The thing I find hardest though is definitely volume jumping up and down.

peggy-sue March 23, 2014 at 6:25 am

What's an LG?
I get all confused where they jump back and forward in time too. Or have more than one story going on at the same time. (CSI does that a lot)

Leopardtail March 23, 2014 at 7:40 am

LG is a brand of TV, they seem to have better 'voice enahancement' and generally better sound for their price point in some models.
I find music shows are much better on mine than with most TVs without surround sound. Less distortion, less booming, less awful peaks in volume.

peggy-sue March 23, 2014 at 8:01 am

I hate surround sound!
I keep getting frights when something seems to come from elsewhere in the room…

Leopardtail March 23, 2014 at 8:17 am
peggy-sue

I hate surround sound!
I keep getting frights when something seems to come from elsewhere in the room…

Thanks peggy, that made me smile…..

peggy-sue March 23, 2014 at 8:36 am

:p
Frights are not fun. I jump, it makes me move the leg with sciatica in it. It HURTS.:(
If the cat is sitting on me, she gets a fright because I've jumped – so she leaps up and digs claws in.
That hurts too.:(

Leopardtail March 23, 2014 at 9:01 am
peggy-sue

:p
Frights are not fun. I jump, it makes me move the leg with sciatica in it. It HURTS.:(
If the cat is sitting on me, she gets a fright because I've jumped – so she leaps up and digs claws in.
That hurts too.:(

I pictured myself doing the same thing hence the amusement was at myself. Sorry if that was not clear. My cat (now deceased) was at times so skittish she would have made me jump due to the claws. At others she just scouled at me as if to say "quit the jumping and chillax, I am sleeping here".

Of those things, the sciatica (I suffered it briefly) was definitely the worst. Have you found anything that helps for the sciatica?

peggy-sue March 23, 2014 at 10:22 am

Keeping active!:rolleyes:

Don't worry, I did do a :p to indicate that I understood, (before launching into my melodramatic moan.)

It's ok when I'm pottering around during the day. I need strong prescription painkillers to get me through the night.

Muzz and I had a very strange co-ordinated jumping in fright last week – she did the first one, but she must have hit some point in my pelvis that caused a "knee-jerk" reaction in me,

with the reaction only going via my spine not up to my brain and back down- so it was practically simultaneous, not one being jumping, then another being jumping.

It had me completely confused for a few moments.

Leopardtail March 23, 2014 at 11:37 am
peggy-sue

Keeping active!:rolleyes:

Don't worry, I did do a :p to indicate that I understood, (before launching into my melodramatic moan.)

It's ok when I'm pottering around during the day. I need strong prescription painkillers to get me through the night.

Muzz and I had a very strange co-ordinated jumping in fright last week – she did the first one, but she must have hit some point in my pelvis that caused a "knee-jerk" reaction in me,

with the reaction only going via my spine not up to my brain and back down- so it was practically simultaneous, not one being jumping, then another being jumping.

It had me completely confused for a few moments.

I had those 'sciatica' style pains before I started on Mito supplements and antioxidants. I came to the conclusion it was due to oxidative damage to my nerves. In me it produced a 'burning rods' sensation running along the nerves.

Funny though with high fatigue you could shock me near into a heart attack, but I had no reflexes so the 'knee jerk' thing disappeared completely. I have seen some stuff thyroid related to do with reflexes but have not followed it up.

Well if anybody is entitled to a bit of melodrama, I think that would be us. LOL

peggy-sue March 23, 2014 at 12:15 pm

I have one leg "functionally" shorter than the other.:cautious:

They haven't suggested it's somatoform, or sent me to a shrink for it yet. :rolleyes:

But I haven't been sent to a shrink for my ME either.
Apparently there was one in Dundee, but he was desperately oversubscribed, so refusing to take any more on, and not having any success anyway. (That's what my gp told me. But he is known to tell lies.)

I am 5' 0" when I stand one one of them, and 5' 2" if I stand on the other.
The sciatica is caused by the imbalance in my hips, something is pressing on some major nerve right inside my right buttock, (it sends pains up and down the whole leg, jerks, twitches, etc.)
and the fact that I now tend to walk on a camber.:D

Leopardtail March 23, 2014 at 12:32 pm
peggy-sue

I have one leg "functionally" shorter than the other.:cautious:

They haven't suggested it's somatoform, or sent me to a shrink for it yet. :rolleyes:

But I haven't been sent to a shrink for my ME either.
Apparently there was one in Dundee, but he was desperately oversubscribed, so refusing to take any more on, and not having any success anyway. (That's what my gp told me. But he is known to tell lies.)

I am 5' 0" when I stand one one of them, and 5' 2" if I stand on the other.
The sciatica is caused by the imbalance in my hips, something is pressing on some major nerve right inside my right buttock, (it sends pains up and down the whole leg, jerks, twitches, etc.)
and the fact that I now tend to walk on a camber.:D

Well if you could 'Somatoform' the length of your legs, then I would wish myself two inches taller both sides :). I have lost two inches in height since ME.

Don't know about a GP. We need Doctor Who to transport you back to the 1970s so that you can wear great big 8" platforms on one foot, and sawn off 6" platforms on the other. :D

peggy-sue March 23, 2014 at 1:08 pm

Which Dr.Who? (I'm fussy ;))

Before it got "seen" to I did spend about 3 months wearing one high-heeled (2") bright red clog and one lower-heeled (I") bright lime green one.
Fortunately, it didn't look out of place on me.:rofl:

I had my teens in the early '70s. :cautious:
Don't knock it. We had heavy metal, glam rock, punk and ska then. :thumbsup:
It wasn't all Grease-y disco!
And while the clothes and shoes were ridiculous, at least we all knew it – that was the point.:p

MeSci March 23, 2014 at 1:49 pm
Leopardtail

Well if you could 'Somatoform' the length of your legs, then I would wish myself two inches taller both sides :). I have lost two inches in height since ME.

I appear to have gained 2 inches in the past 2 years! I probably haven't, but I am having to use walking sticks that are two inches longer now. The ones I was using before are much too short now.

The most likely explanation is that I was stooping before (although my posture has tended to be good all my life).

Or my arms have become shorter, which may mean that I have evolved…

Or I am holding my shoulders higher, maybe thanks to my muscle redevelopment.

It's intriguing, and I must get my height measured when I have the opportunity.

Leopardtail March 23, 2014 at 1:57 pm
MeSci

I appear to have gained 2 inches in the past 2 years! I probably haven't, but I am having to use walking sticks that are two inches longer now. The ones I was using before are much too short now.

The most likely explanation is that I was stooping before (although my posture has tended to be good all my life).

Or my arms have become shorter, which may mean that I have evolved…

Or I am holding my shoulders higher, maybe thanks to my muscle redevelopment.

It's intriguing, and I must get my height measured when I have the opportunity.

I have read something to do with Testosterone deficiency causing loss of height… think it had something to do with spinal disks.. but cannot swear to it…

MeSci March 23, 2014 at 1:59 pm
Leopardtail

I have read something to do with Testosterone deficiency causing loss of height… think it had something to do with spinal disks.. but cannot swear to it…

Oh, maybe I'm turning into a bloke then. :aghhh:

Leopardtail March 23, 2014 at 2:02 pm
MeSci

Oh, maybe I'm turning into a bloke then. :aghhh:

Start worrying if you get two inches taller…. LOL
more testosterone = more height…..

Don't worry … I izz always treating you like a lady… :-)

peggy-sue March 23, 2014 at 2:17 pm

I have had my height officially measured (by various nurses) recently at;
5' 0.5"
5'
5' 1.5"
5' 2"

I was 5' 1.5" all my life before…

Your longer sticks, I would think, MeSci, are needed because you are probably holding yourself better?

- or your arms are disappearing into your shoulders – the way my leg has gone up into my hip:p

Valentijn March 24, 2014 at 1:09 am
Leopardtail

I have read something to do with Testosterone deficiency causing loss of height… think it had something to do with spinal disks.. but cannot swear to it…

There was also a recent case on one of the British newspaper sites about a women with a collagen disorder (often associated with Ehler-Danlos Syndrome) who was shrinking due to her neck basically having less support.

Firestormm March 24, 2014 at 3:00 am
Valentijn

There was also a recent case on one of the British newspaper sites about a women with a collagen disorder (often associated with Ehler-Danlos Syndrome) who was shrinking due to her neck basically having less support.

A friend of mine with Diabetes, had had a long time off work feeling really run-down and they thought eventually it was because he was being too strict with his diet. So he upped the intake of sugar, began feeling better: but then a test result came back showing his was rather low in testosterone.

They measured it over time and still it was showing a marked below average – in a man. So they've now boosted his testosterone levels artificially with shots (or something), and he's back and work and better than before.

I am not sure if testosterone has anything to do with diabetes or if this was simply a case of him having diabetes as well as being low in testosterone. Incidentally, it took a private series of tests – based on his hunch and I think word of mouth – before the NHS would treat him for these low levels.

I have never really looked into testosterone before – and haven't now – but it's possible I guess he noticed other things that might have concerned him and indicated to him a low testosterone reading. Men don't always confide much in other men.

Leopardtail April 6, 2014 at 12:50 pm
Firestormm

A friend of mine with Diabetes, had had a long time off work feeling really run-down and they thought eventually it was because he was being too strict with his diet. So he upped the intake of sugar, began feeling better: but then a test result came back showing his was rather low in testosterone.

They measured it over time and still it was showing a marked below average – in a man. So they've now boosted his testosterone levels artificially with shots (or something), and he's back and work and better than before.

I am not sure if testosterone has anything to do with diabetes or if this was simply a case of him having diabetes as well as being low in testosterone. Incidentally, it took a private series of tests – based on his hunch and I think word of mouth – before the NHS would treat him for these low levels.

I have never really looked into testosterone before – and haven't now – but it's possible I guess he noticed other things that might have concerned him and indicated to him a low testosterone reading. Men don't always confide much in other men.

The answer to your implied question @Firestormm is a resounding yes. Testosterone has a relationship to some forms of diabetes (more strongly in type II) and more recent research implies it plays a role in Insulin action (that is by no means universally agreed as yet).

Lowered testosterone is very common in people with PWME but by no means universal.

About normal isn't it? The ME patients must prove their own problem before receiving any help at all.

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