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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Cognitive testing causes mental exhaustion lasting days

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 17, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    Can't you just point and make gestures? Works for me :D
     
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  2. Rachael

    Rachael

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    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.
     
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  3. peggy-sue

    peggy-sue

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    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:
     
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  4. greebo

    greebo

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    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...
     
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  5. peggy-sue

    peggy-sue

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    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.
     
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  6. Wayne

    Wayne Senior Member

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    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
     
  7. Leopardtail

    Leopardtail Senior Member

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    have to agree with that one Peggy... or appearing coherent but not being able to put your thoughts together
     
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  8. peggy-sue

    peggy-sue

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    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.
     
  9. Leopardtail

    Leopardtail Senior Member

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    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.
     
  10. Hip

    Hip Senior Member

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    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?
     
    Last edited: Mar 22, 2014
  11. Rachael

    Rachael

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    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
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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.
     
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  14. peggy-sue

    peggy-sue

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    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...
     
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  15. peggy-sue

    peggy-sue

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    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.
     
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  16. Leopardtail

    Leopardtail Senior Member

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    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.
     
  17. Leopardtail

    Leopardtail Senior Member

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    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.
     
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  18. Hip

    Hip Senior Member

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    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.
     
  19. peggy-sue

    peggy-sue

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    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.
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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?
     
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