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IACFS: Dr. Byron's Hyde booklet on ME

Discussion in 'General ME/CFS News' started by Boule de feu, Sep 25, 2011.

  1. mon me

    mon me

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    Yes this was my thinking too; if I have deficiencies at least I can now try to correct them re my test results. It's not a cure and I certainly wasn't expecting one from taking supplements but at least I can continure to work on it without thinking I'm just blowing in the wind.

    I went to see a virologist to get my immune panel done and when I mentioned how sick my gut was he tested me for h.pylori and I was positive so he treated me for this and my gut problems went away after so many years of feeling sick. So sometimes we can find things just by mentioning them because we have so many other things going on- it makes their heads spin lol.

    My doctor wanted me be tested by Enterolab in the US for gluten sensitivities but I decided to try the gluten free diet instead of paying for the test. The gluten free diet was actually easier than I thought it would be because there are so many alternatives in healthfood stores now. I didn't feel any better after one year but my digestion did improve. I think we have to heal our gut in order to move on so I think you should try this and see.

    I am familiar with Rich's protocol and I brought it to my doctor to look it over since he is into this stuff. I take folonic acid and methyl B12 with a few other things but the one thing that helped me in a noticeable way was Magnesium injections 3x/week and fish oils.
  2. Dolphin

    Dolphin Senior Member

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    For anyone who doesn't know, the book ("Scientific & Clinical") is a collection of papers from speakers who presented at the 1990 Cambridge Symposium. It would be like if somebody collected papers from the speakers at the recent IACFS/ME conference.
  3. Dolphin

    Dolphin Senior Member

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    No, don't think that is it:
  4. justy

    justy Senior Member

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    Gamboa - my thinking is the same as yours re antioxidants and supplements for deficiencies. I have a whole host of antioxidant problems and low nutritional status, despite having a good balanced wholefood diet for the past 20 years. I wonder what it is that makes us so prone to poor antioxidant status?
    I am also supplementing with vitamin and minerals in the hope that if it doesnt make me feel much better it at least stops further rot from setting in. At the age of 41 im beginning to wonder how much my poor antioxidant status is affecting the ageing process.
    The problem is that gut function can be poor so absorption is poor. Im just about to try a transdermal mineral spray formulated by Dr Myhill, she feels its much more easily absorbed if you bypass the gut. Im also going to try an transdermal iron spray as i have had low ferrittin for years and despite supplementing it doesnt budge much.

    BDF- please do keep posting its interesting stuff and seems to have sparked a good discussion!

    All the best, Justy.
  5. Boule de feu

    Boule de feu Senior Member

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    BTW, the quotes are from "The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.)" booklet which was made specifically for the IACFS conference in Ottawa, 2011

    not from the Cambridge booklet - 1990
  6. Dolphin

    Dolphin Senior Member

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    My post http://forums.phoenixrising.me/show...-booklet-on-ME&p=208343&viewfull=1#post208343 was in reply to Enid's post - she was referring to the book on the Cambridge conference. I have now edited the post to try to clarify this.

    That book tends to get a lot of praise but I think some people may think Byron Hyde wrote most or all of it.
  7. Boule de feu

    Boule de feu Senior Member

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    Ottawa, Canada
  8. Dolphin

    Dolphin Senior Member

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    No problem.
  9. Gamboa

    Gamboa Senior Member

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    Was this in Ottawa?
  10. mon me

    mon me

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    The virology lab is at CHEO but the tests have be ordered through the virologist I saw.
  11. Andrew

    Andrew Senior Member

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  12. justy

    justy Senior Member

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    From the booklet mentioned in the link above

    "It is my belief that the technological medical community should be funded to do a
    complete cardiovascular, neurovascular, thyroid and endocrine, and neurophysiological
    assessment of say:
    250 of these children patients and
    250 adults with acute onset M.E and
    250 gradual onset CFS type patients.
    The neurophysiological examination side should include (a) brain SPECT scans, (b)
    Xenon brain SPECT scans, (c) PET scans, (d) QEEG neuropsychological scans as well
    as (e) MRI scans since some of these children will be missed cases of multiple
    sclerosis or other space occupying processes or CNS injuries. This might seem
    excessive to some, but only if such an organized and structural approach is taken will
    we ever be able to come to grips with these disease processes and separate them out,
    one from another.
    I have heard so many physicians say that this is too expensive. Yet the cost to examine
    all 750 patients would definitely be a fraction of the cost of building one atomic bomb,
    and less than the cost of building one jet war plane. Where are our priorities?"
    Dr Byron Hyde 2006.


    I wonder why this hasnt been done so far by his foundation or why he hasnt sought the funds to do this.
    It seems that he believes that M.E can only ever be caused by neurological damage and that this damage always shows up if you do the right brain scans.
    This makes sense as M.E is classified as a neurological disease by The World Health Organisation and has been since 1969. I was wondering what this meant for other M.E doctors theories such as Dr Myhills mitochondrial dysfunction theory and Dr Cheneys heart dysfunction theories. But i imagine that what Dr Hyde is saying is that those are all possible changes that take place in the body due to lesions or damage in the brain which precedes the I would be interested to know what the other major M.E docs make of his work. A big part of me thinks that it is good that he is such a purist -M.E is supposed to be a neurological disease, but on the other hand would i than be excluding myself -and why arent all the researchers looking at this.
    I think the reason they are not all looking a t this is because either:
    1. They are not researching M.E but CFS (in which case why Is the ICC trying to appropriate the name)
    2. They do not believe M.E is a purely neurological illness and that Dr Hyde's theories are not correct -he focuses too much on the brain and not enough on the other known dysfunctions.

    All the best, Justy.
  13. Dolphin

    Dolphin Senior Member

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    It is a pity that his theories haven't been put to the test. It is also a pity some people think they have been proven: one doctor saying or writing something doesn't prove anything - lots of people have theories. I would be concerned he might hype particularly tests to justify getting them done.

    You ask why he/his foundation hasn't sought the funds - I'm not sure but as has been pointed out he isn't particularly focused on publishing research papers. And neither does the foundation seem to focused on it (publishing research).
  14. Dolphin

    Dolphin Senior Member

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    A Byron Hyde abstract in the IACFS/ME conference handbook (I'm not sure if the abstracts should generally be posted as potentially it might jeopardize publication? But this doesn't involve data:

    I find all the references to "free" a bit odd, especially as attending him is far from free. And the person I know who attended him after he made similar comments in a talk found they had to pay for quite a lot of tests, so it should probably be clarified that this doesn't apply for people outside Canada coming to Canada.
    Also, I imagine that the situation regarding testing in Canada isn't as clear cut as is made out.

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