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ME/CFS: In Free Fall Through the Looking Glass
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Dementia in ME/CFS

Discussion in 'Cognition' started by dipic, Jan 20, 2010.

  1. dipic

    dipic Senior Member

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    Does anyone else experience "CFS dementia"? Why I mention this to friends or family they usually give me a confused look presumably because they associate dementia with old age & alzhiemers, not a young man in his very early 20's.

    My cognitive impairment has severely worsened over the past year where I would easily consider myself to have dementia. It takes me a lot of effort to gather and articulate my thoughts these. My IQ has undoubtedly plummeted greatly. My memory is god awful. When speaking, sometimes I will completely forget what I am saying mid-sentence or struggle to find a common word. I used to love to read... I can barely skim articles or posts only partially absorbing information (and then forgetting it mere seconds later.)

    My doctor asked me when I was first diagnosed, which symptom out of all the ones I experience would I take away if I could. Without hesitation I would easily say "fatigue". 2.5 years later my answer would unquestionably be my cognitive impairment.

    It's bad enough being confined to a bed and being unable to physically care for myself but being unable to take in new information, remember simple things, gather my thoughts and express myself in an articulate matter is just the most awful thing. It's nigh impossible to do the thing necessary to survive without help but it has also taken away my ability to enjoy even the limited number of things that I would other be able to do in the physical condition that I'm in.

    Sorry, enough of my whining. I'm just really curious to see how many others suffer from "CFS dementia", the level of severity, and perhaps your experiences and how you cope.

    In the following I want to share an section from one of Dr.Bell's newsletters from back in '05 where he speaks of cerebral perfusion.
  2. dipic

    dipic Senior Member

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    Cerebral Perfusion in CFS


    What does everyone think of Dr.Bell's theory of blood flow and cerebral atrophy perhaps causing cognitive impairment (assuming I read that right)?

    This article, again, is 5 years old but I heard Dr.Bell recently state (in his latest lecture in Cali, I believe) that he believes increasing blood flow to the brain would alleviate many (cognitive?) symptoms.

    Also, I have only been sick for about 3 years now and just a year ago is when my cognitive issues got really bad. Is it possible that that much brain damage could have been done in such a short period of time, worsening my cognitive symptoms to such a degree?

    I do have low blood volume and a diagnosis of POTS, btw.
  3. mezombie

    mezombie Senior Member

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    I started out with flu-like symptoms and exhaustion (I used to spend most of my time in a coma-like sleep). Twenty years later I definitely find my cognitive dysfunction is the worst symptom. I think it may well have deteriorated over the years.

    I tend to favor the viral theory as I received a bit of relief from an anti-viral once upon a time. You may be familiar with the Valcyte studies. The patients who benefitted from that drug tended to state that their cognitive dysfunction was the most favorably affected. There's more information on that at http://www.vicd.info as well as the HHV-6 Foundation website.

    Bell's theory may well be correct as well. Yet as he states, more research needs to be done on this facet.
  4. dannybex

    dannybex Senior Member

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    Levi makes a good point. It really isn't "dementia", or at least not permanent, progressive dementia...that's why most use the term 'brain fog', despite it's severity at times. It could be due to so many different things/causes too...like low blood volume, hypercoagulation issues, viral issues, even something as 'simple' as a b12 deficiency. It can last for days, months, years...but it is 'temporary' (not exactly the right word, but you know what I mean).

    It does get scary, and extremely frustrating at times...this past month or so has been hell for me, but has improved a bit during the past week. I do know someone who was very sick for over 16 years. At one point her brain fog was so bad she could not remember who she was talking to on the phone the second that person stopped talking. She said that severe period lasted for about seven months. I'm not sure exactly how long ago that was, (probably at least 5 years ago), but she's now back at school in her early 40's, and getting top grades.

    db

    p.s. I just saw a study somewhere (sorry, brain fog) that showed a link between strep and ADD...an example of a possible virus affecting the ability to concentrate...

    Here's an article from ten years ago (already):

    http://www.webmd.com/add-adhd/news/20000512/strep-infections-associated-adhd
  5. CFSer

    CFSer Guest

    Lymphogenous Encephalopathy

    I have come across a reference to a medical condition which may have
    some relation to CFS: "lymphogenous encephalopathy" Several of its
    hallmarks are 1) alcohol intolerance 2) fatigue and lethargy 3) reversible
    intellectual decline. The condition results from pressure backing up on
    the brain due to poor lymph flow, which in turn results from subtle damage
    to the lymphatic system after an infection. There is no known direct
    connection between the spinal fluid and lymphatic system, but the author
    contends that there must be one. The reference is Mihaly Foldi -
    "Diseases of lymphatics and lymph circulation", "lymphogenous encephalopathy",
    1969. I think this is particulary relevant after reading Cheney's
    findings and conjectures about the lymphatic system, in the CFIDS Chronicle
    Spring 1994, and Spring 1995.

    The Foldi article charts precipitous decline in IQ, with a resulting inability
    to copy a figure well when drawing. This reminds me very much of the
    some of the descriptions in Hillary Johnson's book, where severe CFS
    sufferers cannot execute a drawing properly. I also think some of those in
    her book who underwent spinal tap showed increased opening pressure. The IQ drop
    is somewhat reversible by certain nutritional supplements.


    Conjecture: Could the brain be affected by Lymphogenous Encephalopathy in CFS?

    I quoted from an old 1996 post of mine on a CFS newsgroup. I have since seen that an osteopath named Perrin has a somewhat similar idea, and treats it with osteopathy and a sort of lymphatic massage.

    I believe this to be the cause of my intellectual decline (of 29 years)
  6. dipic

    dipic Senior Member

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    Thanks for the replies, all.

    That's a great idea and worth trying. I'm not looking for any specific response really, just a discussion of this phenomena.

    I should probably mention that I don't have what I would consider brain fog anymore. I call brain "fry". I used to be housebound for the most part (able to go out once and awhile then crash for a couple days) but after a series of stressful events including hospital visits in the beginning of last year, I have become bedridden. I believe I am in a "permanent" crash. My muscles burn and ache 24/7, and as I said, my cognitive impairment has grown much worse. My brain feels burnt out. I used to feel "sleepy and tired as log" all day after sleeping many hours... now I'm more of a "wired and frazzled" type where I have much trouble getting to sleep and my body feels like it's in a perpetual crash.

    Sorry, rambling a bit. I have not heard much of anyone with a similar experience tbh.
  7. dipic

    dipic Senior Member

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    Yeah, I'm not sure that I agree with Bell's theory, but who knows. I will be very interested of course to see if I test + for XMRV in the coming months and what happens when I (and others) and eventually receive treatment.
  8. dipic

    dipic Senior Member

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    Hey Levi, that's why I put "CFS dementia" in quotes. I realize that the two are very different.

    I feel that my cognitive impairment has definitely gotten progressively worse over the past year (and of course a lot at once, initially) but I'm sure it will eventually hit a wall and stable out.

    I wish I had taken an IQ test before I had become ill. It would certainly be interesting (and probably a bit terrifying) to see just how bad I've gotten. I'm hoping things will have gotten better in 10 to 20 years though. :worried:
  9. dipic

    dipic Senior Member

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    Hey danny, like I said in my reply to sarah, I've been more inclined lately to call what I have "brain fry" rather than "brain fog". It's hard to explain but my head no longer feels like it's stuck in a thick fog... more like it's circuits have been fried out.

    The viral link you guys have brought up is interesting. I got a lot of strep when I was younger, causing me to miss a good number of days from school. I also used to think I might have had ADD when I was in high school because of problems trying to concentrate but in retrospect I really believe it was one (of numerous) early mild symptoms of whatever this is before I had known anything was really wrong with me.
  10. aquariusgirl

    aquariusgirl Senior Member

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    Interesting thread. I had 2 neuropsych tests showing progressive deterioration. Usual suspects: slow processing, poor recall, etc, etc. I think all the things mentioned sound like part of the picture. I would add that poor methylation messes with concentration, and what Professor Richard Deth calls "attention-based learning."
    I have tested and I have a partial methylation cycle block. My methylation capacity is still borderline according to the test from VItamin Diagnostics. I have been working on it for 3 years. It has pulled me out of the hellhole of what felt like dementia. Cognitive function much improved but still a ways to go. Plan to add antivirals in and start going aggressively after bugs now that my immune and detoxification systems seem to be operating better.
    Google Professor Richard Deth and methylation for more info. He has written a (very technical) book called "The Molecular Origins of Human Attention, The Dopamine-Folate Connection" which was truly enlightening for me having been reading about methylation courtesy of Rich Van Konynenburg and Amy Yasko. Of course, a lot of their work stems from Deth.
    I do feel like there is a way out of this horrible situation. Probably a multi pronged strategy.
    thanks
  11. Jody

    Jody Senior Member

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    Just wanted to say, I have been completely fried at a few times since I got sick. Lasted for months, in some cases years to varying degrees. Couldn't think a complete thought. Trying for more than a second or two would cause profound physical neurological symptoms to arise and panic attack sensations, that would sometimes take hours to subside, and sometimes would leave a residue for days or weeks.

    For what it's worth, that doesn't happen to me anymore. I mostly can think my thoughts (not always but mostly). I've been able to write short articles about cfs and other medical condtions for the net and make some money. Emailing, blogging, forums, facebook, etc.

    Still don't have a real life outside of my house yet, don't think I am physically/neurologically well enough for anything like that yet. But my brain is working better than it did say 3 yrs ago. Elevator isn't going all the way to the top yet and some days are better than others. Hell, some hours are better than others.

    So recovery can happen, even from what feels like the end of the line brain-wise. I really figured mine was irrevocable toasted for years. But even that can turn around. Will it in every case? I have no idea. But knowing it can might help offer some hope.
  12. Summer

    Summer Senior Member

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    Dr. Bell Newsletter on our Cognitive Issues/Research

    CEREBRAL ATROPHY

    Feel fortunate if you are not progressive, but some of us are, and some of us will not regain the death of tissue in our brains and muscles because it indeed is dead.
  13. markmc20001

    markmc20001 Guest

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    brain fry

    heya,

    I got a pretty good case of brain fry myself. I was bedbound for 6 months and am now mobile for periods of time some days(which i think helps keep me from getting worse, sun fresh air, forgetting about being sick) but I have that persistant brain fry. SO bad I can't think ahead or about the past only the present. I can't really see straight some days and think/react quick enough to make eye contact with people which is socially isolating even more. However, I a hopeful that it may be reversed someday. I have had days in the past where I take some suppleent, or eat something, or the stars line up, and can think for a day or two. I am hopeful it is brain chemistry (resulting from gut, toxins, gsh, or whatever...) and can be fixed with diet, or vitamins, or drugs someday. However, I don't have any proof of that.

    I guess maybe I started out with a pretty high IQ way back when, so maybe after loosing a 30-40 points I am not a complete moron. :D
  14. markmc20001

    markmc20001 Guest

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    brain fry and LTD

    thanks for psoting that link summer. one study, in your link, that should prove cognitive dysfunction is quoted below by DR G Lange. Does anybody know If I can get this testing done here in the US? or anyother studies are similar and od the same thing?

    I just had my LTD cut off for no objective eveidence. I can move and get around, but have severe mental imparements still where making a phone call is tough for me most months. MY doctor mentioned using spect scans or neuropsychiatric testing for proving this. However, I guess that is not rock solid.

    thanks Mark

    Reference: Lange G, Streffner J, Cook D, Bly B, Christodoulou C, Liu W, et al. Objective evidence of cognitive complaints in chronic fatigue syndrome: A BOLD fMRI study of verbal working memory. NeuroImage 2005;26:513-524.

    Many studies have been ambiguous about the cognitive difficulties in CFS. In this study, the authors, using blood oxygen level dependent (BOLD) functional MRI imaging show that CFS patients are able to process challenging information, but utilize more extensive cerebral networks and must exert greater effort to process auditory information. They state, Our findings provide objective evidence for the subjective experience of cognitive difficulties in individuals with CFS.

    Comment: Many standard neuropsychological testing results have been considered normal or consistent with depression, primarily because the areas studied were not the areas of impairment in CFS. If neuropsychological testing were to be done, the focus should be on ability to maintain attention, verbal processing speed, reaction times, and the ability to acquire new information. For a review of the neurocognitive studies, see Jason L, Corradi K, Torres-Harding S, Taylor R, King C. Chronic fatigue syndrome: the need for subtypes. Neuro-psychology Review 2005;15(1):29-58. Hopefully this study by Lange et al will put to rest the controversy of the presence of cognitive deficits in CFS, because they can be seen on fMRI.
  15. mezombie

    mezombie Senior Member

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    Dipic, has Dr. Bell mentioned Clonazepam (generic of Klonopin) to you? I find it helped me when I was feeling that way. I still take it at bedtime to help me sleep. Taking a tiny bit (splitting the .5 mg tablet into quarters or less and taking them sublingually) also helped during the daytime. Dr. Cheney originally prescribed this for me. It's an oldie but goodie.
  16. Mithriel

    Mithriel Senior Member

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    In the 80s, the VP1 test for enteroviral particles was positive in brain tissue at autopsy in a patient wiht ME. This research was dropped when CFS was invented.

    Mithriel
  17. liverock

    liverock Senior Member

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    Vitamin D has been found to help with dementia in elderly men and women,presumably most of them will also have reduced blood brain flow due to narrowing arteries.

    http://www.scientificamerican.com/article.cfm?id=does-d-make-a-difference

    Vitamin D besides having an anti-inflammatory action also raises glutathione levels in the brain which can help to get rid of mercury.

    http://www.vitamindcouncil.org/health/autism/vit-D-and-brain.shtml

    Some PWC's have trouble with vitamin D and it would be best to check D levels before starting to supplement and increase dosage slowly over a few weeks.

    I started at 800iu and increased by 400iu increments up to 2,400iu which is my present dose. Seems to work well with me.

    If you are going to try it only get the VitaminD3 supplement, the vitamin D2 you get from the doctor was useless at raising my D levels.
  18. I am much worse these days ( ie in Agony with a capital 'A', BRAINDEAD, dysautonomia, bedridden 2/3rds of the time, highcentered) after 18 years of acute CFIDS. This is subsequent to a lifetime of a push/crash sydrome beginning when I was four in 1954 when I was treated aggressively for strep and for lack of any better guess 'rheumatic fever'. Decades later when I contacted this doc, he said he doesn't even know that I actually ever had rheumatic fever. He said it was atypical. He treated me with massive injections of penicillin for several years.Then he surrendered and turned me loose.
    Being ill from the beginning, I thought I was normal. And too, I excelled in school with an extremely high IQ. So I met good feedback from 'the world'. But as a young adult I began to realize that something was 'not right'. I could not keep up. I could do anything... but only for...a hot ten minutes. No doctor I saw could ever help me. Not shrinks and not 'real' doctors ( forgive me).
    Now that I am dx'd with severe CFIDS, and live on survival instinct alone, I find that my brain fog has also shifted into brain fry. Of course, I am old. So, most just think I have Alzheimers disease, but ... I don't. I too am wondering if the shift is an inevitable part of say, XMRV progression/infection and whether it can be treated, or if there is a chance it could reverse itself. I want to know what variable my cognitive abilities are tied to. It is one thing to lose one's physical abilities, but entirely another to lose one's mind. Scary stuff.
  19. muffin

    muffin Senior Member

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    DIPIC: You are young and you are still very impressively intelligent. Continue research and vitamins (esp. the B vitamins) and keep making the brain work. I had to teach myself how to read again after I got sick. My memory - short, medium and now I have been made to realize - long-term is still bad- but, I got sick 15 years ago when there wasn't much to be done or given. And what they did do was dangerous and caused even more damage to our brains. So, keep making that brain work. Read, play games that force memory/recall and don't give up. You really are so young that you have a much better shot at keeping your IQ/Memory.

    It is very depressing to KNOW your brain is not working and to have to play the "word game" with eveyrone you try to talk to. But force that brain to work and feed it with what you see helps it work better.
    I avoided any testing since it would have thrown me into a severe depression and I already KNEW how badly I was affected. I did not need someone to show me how badly damaged my brain is.

    Really, you still have a very high IQ. We all can see and hear it. Don't despair and don't give up.
  20. Sing

    Sing Senior Member

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    Dipic, Bluebird and Others, the worst symptom all along for me has been the cognitive dysfunction, memory problems, slow brain. The PEM is the other one. Those two. And pain. That makes three in the first tier. And I have a number of other symptoms which I have to contend with in the invisible juggling act I do each day. I SYMPATHIZE and RELATE to your difficulties. I can imagine how difficult your struggles can be.

    To add to this I am often alone, unsupported when I could benefit from more human engagement. I got myself into this position over time through avoiding the stressfulness of being with others, trying to keep up, trying to meet their needs maybe more than I should have. It is easier to be alone.

    But now I am facing the prospect of hip replacement surgery in the spring, followed by surgery on the other side when I can tolerate a second go. I am sure that this will reduce my brain activity to a flat line and only hope I can get referred to a rehab long enough or otherwise get the needed help. This chapter in my life has yet to be written. Can't imagine it. The surgery is like a black curtain and what is beyond on the other side, I can't tell.

    Sing

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