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Scared after reading this - brain fog linked to dementia and Korsakoff's psychosis??

Discussion in 'General ME/CFS Discussion' started by clairelou, Apr 11, 2016.

  1. clairelou

    clairelou

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    Hi all,

    I have had ME/CFS for 12 years now and recently my brain fog has been getting worse...

    I suffer bad anxiety and the brain fog was almost a relief, a kind of break from the anxiety. This was ok until I read this article: http://drmyhill.co.uk/wiki/Brain_fog_-_poor_memory,_difficulty_thinking_clearly_etc

    Can someone make sense of it - is she saying brain fog is linked to dementia etc - panicking about this :(
     
  2. Stewart

    Stewart Senior Member

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    I think you're misreading the first paragraph (although I agree it's not very clearly written) - she's talking about the effects of alcohol on the brain as an example (for people who don't have ME) of what brain fog is like. When she writes "Longer-term use could result in severe depression and then dementia" she's referring to the effects of longer-term use of alcohol on the brain.
     
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  3. Esther12

    Esther12 Senior Member

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    I wouldn't worry about that at all.

    And I say that as someone who has no interest in providing people with comforting false reassurance.

    Sorry to hear you're unwell.
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    I would take anything Dr Myhill says with a large pinch of salt if I were you, I may be in a minority here but I've never thought much of her.

    As far as I'm aware brain fog in ME/CFS is not degenerative. When my periods of brain fog pass I'm back to being my normal self mentally, with no lasting effects, and I've got the impression from what other ME sufferers say that this is the typical ME/CFS experience. ME/CFS brain fog is better compared to the temporary effects of a stroke, rather than Alzheimers.

    Sorry I can't back any of the above up with sources etc, but it's the way I've looked at brain fog up to now.
     
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  5. clairelou

    clairelou

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    Thank you so much for all your replies, much appreciated.
     
  6. Hip

    Hip Senior Member

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    I had severe levels of anxiety with my ME/CFS, so I know how much torture this can be. Eventually I managed to fix my generalized anxiety disorder with the supplements detailed in this thread:

    Completely eliminated my severe anxiety symptoms with three supplements!

    Quite a few other people also found these supplements highly effective.
     
  7. Kina

    Kina

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    This is just plain wrong in so many ways. I don't know where to start. The part about a poor energy supply to the brain will cause the brain to work inefficiently is true. I don't get why she is relating this to alcohol use. There are lots of conditions that can cause 'brain fog' -- fibromyalgia, ME, sleep deprivation, flu, to name a few obvious ones. Alcohol is a drug -- it causes brain damage if used excessively for long periods of time and it's the damage to the brain that results in dementia. A 'foggy brain' does not necessarily lead to dementia and I think Dr Myhill should re-write this because it seems extremely misleading and scary for people with ME that are reading it.
     
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  8. Antares in NYC

    Antares in NYC Senior Member

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    Hi @clairelou: If it serves you of any consolation, I have had severe brainfog since I first fell ill 17 years ago.
    Seventeen! Time flies, dammit!

    During these 17 years, I have had three unique instances when the brainfog lifted. Two of those instances were moderate, but the last one was complete, as in full 100% remission. Unfortunately, in all cases the brainfog came back a few days later. In recent years the brainfog got considerably worse, but the fact that in three unique occasions my brainfog almost completely went away, with all that it entails, gave me hopes that whatever mechanism is causing that symptom, it does not produce permanent damage.

    During those short periods of remission, my memory was back, my capability of attention and concentration was back to 100%, and I could recall both recent and old events in detail. Unfortunately, within days the brainfog came back, which was extremely depressing as I held to the belief that the remission maybe meant that the long nightmare was over. Nevertheless, do not be discouraged, and do not pay attention to this article. Something is very wrong with it. I can tell you from personal experience that I had small islands of hope where the brainfog went away for a few days at a time. What's more, my old memories were there, intact. Using a computer analogy, it's as if my brain's hard drive is there, sitting intact, but somehow my ram memory can't access it properly, whatever it is that's causing it.

    Hope it helps. Best regards and chin up!
     
    Last edited: Apr 11, 2016
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As Kina says, this is complete rubbish. It does not even hang together to make sense. If this is Dr Myhill's level of medical advice then it is about time she shut up shop and stopped frightening and misinforming people.
     
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  10. CCC

    CCC Senior Member

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    As others said: what rubbish. They're not the same. Even if some dementias are really misdiagnosed ME/CFS in the elderly, everything is different.

    I refuse to read scary stuff like that. Even when you know it's rubbish, even the idea is too distressing.
     
  11. Violeta

    Violeta Senior Member

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    Although brain fog might be a relief from anxiety it has to be a sign that something is wrong in the brain.

    You can get different ideas here but the bottom line is that we all are responsible for looking into these matters for ourselves.


    I found that treating for candida relieves a log of brain as it can cause fermentation and high levels of aldehydes which can cause the same problems as drinking alcohol.

    I wouldn't give up until until I found a way to reverse my brain fog.
     
    Last edited: Apr 12, 2016
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  12. lnester7

    lnester7 Seven

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    The only thing I can tell is that I was a semi-genious pre cfs (seriously got in college at 15, out of college by 19) then went from that to not being able to write my name or fill out a check. I have most of it back. So I don't think whatever is going on in CFS is permanent. I did have to rehab and build myself up so I wouldn't get PEM. So I started doing brain memory games, then simple math then all the way up tp the hard stuff. I started with 5min a day.
     
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  13. clairelou

    clairelou

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    Thanks again for your replies. @Antares in NYC, I sincerely hope you again experience 100% remissions again, take care.
     
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  14. Hip

    Hip Senior Member

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    As @Stewart pointed out earlier, Dr Myhill is not saying that brain fog leads to dementia:
    Though I am not aware of any pathophysiological connection between the brain fog / cognitive dysfunction found in ME/CFS, fibromyalgia, lupus and cancer chemotherapy, and the brain fog / cognitive dysfunction found in various dementias. So it is perhaps not a good idea to include the two in the same article.
     
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  15. Kina

    Kina

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    The name of the article is: Brain fog - poor memory, difficulty thinking clearly etc

    To paraphrase Dr Myhill

    - the brain works quickly and efficiently due to its energy supply.
    -if the energy supply is impaired in any way, the brain will go slow.
    -with such an impairment of the energy supply, the initial symptoms would be of a foggy brain
    -if the symptoms progress, "one will end up with dementia"

    This is a clear statement -- impaired energy supply = foggy brain -> dementia


    She then uses an example from 'everyday' life re: alcohol effects
    Her definition of a 'foggy brain' seems to include the smptoms of 'not caring', 'not worrying', and the alleviation of anxiety.

    This is not 'brain fog' though, it's the side-effect of alcohol intoxication -- using a drug that causes brain dysfunction.

    Then she goes on to discuss long-term use which again shouldn't be compared to 'brain fog'. What she is discussing here is prolonged use of alcohol, a drug, resulting in encephalopathy and dementia. And to boot, this isn't even related to lack of energy for the brain as she first stated as being the cause of 'brain fog'

    She is not clear of what she is talking about. Alcohol use and abuse is not a great example to use. This example seems to refer to a progression of recreational use of alchohol to abuse of alcohol and the effects on the brain.

    She then defines brain fog as:

    I think she is not clear at all and her words do suggest that brain fog leads to dementia for which in the case of ME, it seems not to. Maybe I am too brain fogged to get it.
    I said before it's very misleading and it might be better if it was rewritten for greater clarity. She does go on to give some examples which aren't too bad re: treatment for better brain health.
     
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  16. Hip

    Hip Senior Member

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    Yes, I think you're right: in the context of the article title of "Brain Fog", her statement does make it sound like ME/CFS brain fog can lead to dementia, which I don't think is the case (this study found brain fog in fibromyalgia does not lead to Alzheimer's).

    I think if the article (or at least that section of it) had instead been entitled "Dementia", the content would made more sense.



    The alcohol analogy is not a particularly good way to describe brain fog. Alcohol lowers inhibitions and circumspection ('not caring' and 'not worrying') and also slows reactions; but that does not really capture the brain fog experience. Though I guess for someone who has never has brain fog, being drunk with the resulting clumsiness and stupidness is going to be the closest thing in their experience. But not a very accurate analogy.



    Yes that does not really relate to brain fog. Although a quick Google search reveals that there is a form of dementia caused by long-term, excessive consumption of alcohol (Alcohol-related dementia - Wikipedia).

    So again, her statements would make sense if that section of the article were entitled "Dementia". It is a confused article, mixing dementia with brain fog.
     
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  17. Violeta

    Violeta Senior Member

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    Does anyone know what causes brain fog in ME/CFS or dementia?
     
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  18. Hip

    Hip Senior Member

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    There appears to be very little research into the mechanisms behind brain fog in ME/CFS, fibromyalgia and lupus, and I have never found anything in terms of explanatory theories. (Though my own guess is that is that brain fog could result from a dysfunction in the brain's reticular activating system, which is a regulator for conscious awareness).



    The Wikipedia article for brain fog says the proper name is clouding of consciousness.

    There is also a Wikipedia article called mild cognitive impairment, which describes the early or prodromal stages of dementia.

    According to these two articles, the main feature of clouding of consciousness (brain fog) is an abnormality in the regulation of the overall level of consciousness. Whereas the predominant feature of mild cognitive impairment is memory impairment.

    I don't think the clouding of consciousness Wikipedia article really gives a good description of what it is like to have brain fog though.



    There is also a Wikipedia article on delirium, which is a more severe form of clouding of consciousness. And of course dementia is the more severe and advanced form of mild cognitive impairment.
     
  19. Mark

    Mark Former CEO

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    My mother had mild cognitive impairment for a long time before the onset of Alzheimer's so I do know a little about all that. Her MCI (so classic that they were pursuing her for studies) was nothing whatsoever like brainfog.

    The whole idea being discussed in this thread (even if Dr Myhill isn't actually saying precisely that brain fog leads to dementia) makes no sense to me either. I'd want to see some very good evidence for any such link before considering this idea seriously.

    I do think that this kind of suggestion is obviously bound to cause the same kind of fears in patients with brainfog that clairelou suggests. Really, what purpose does it serve to worry people with brainfog with the idea that they might have something horrible like this ahead of them? It's a distressing concept, it's surely not going to help patients to be worried about this, and even if there was evidence to suggest this, one would have to think twice before telling patients this and be very careful to word things cautiously and explain the probabilities carefully. Clearly that hasn't happened here, given how clairelou has read this. So it looks as though this part of Dr Myhill's site really needs a rethink.

    Before we throw Dr Myhill under the bus, though, I do want to note some context. Her career as a physician, as I understand it, was transformed when she started seeing lots of patients (farmers, mostly) turning up with what she concluded was organophosphate poisoning from sheep-dip, causing symptoms very similar to ME/CFS (though perhaps a little closer to Gulf War Illness). There were so many of these patients that she ended up making this whole area effectively her life's work. But there were no sanctioned therapeutic approaches available to her, and no recognition of the poisoning, and indeed vigorous denial from the authorities and pursuit of her as a 'quack' for the things she said. So she forged her own path, and pursued a lot of ideas that were well off the beaten track, treated these patients as best she could, and observed what worked. Only in the last year or two has it been revealed that the government was lying about sheepdip all the way through, ever since the 1980s, and the evidence has come to light that the authorities knew damn well what was going on, and covered it up - and Dr Myhill and the Countess of Mar were right.

    I think that kind of history is bound to radicalise a person, and I have immense admiration for Dr Myhill's bravery and dogged determination in sticking to her guns throughout the last few decades. Any trained physician has much easier and more comfortable routes to choose, which would make them a lot more money too. I also put my own recovery largely down to advice received from another physician following her principles (a work colleague who was also helped massively by her put me onto this). I don't actually think I would be here on Phoenix Rising now if it were not for Dr Myhill, because I was so ill before I found her advice. So I find it hard to hear criticism of her without balancing that out with the positives, and I think when we critique specific aspects of someone's work that seems "out there", and which may well be flat wrong, we should also be careful to add some balance and look at the rest of someone's work, and acknowledge the good things they have done.
     
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  20. Hip

    Hip Senior Member

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    That in my perception of Dr Sarah Myhill's modus operandi: she takes these experimental approaches in order to try to bring improvements to patients whose conditions are not clearly defined or well understood. Many of us on this forum do similar experimentation, often eventually yielding good results.

    But a lot of us here are well educated and pro-active, and thus capable of navigating our own experimental paths. Whereas I suspect Dr Myhill may be seeing ME/CFS patients who are not confident or capable of navigating through self treatment, and thus greatly benefit from Myhill's help and her tinkering with treatment variations.



    Just out of curiosity, what was that advice, can I ask?
     
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