The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Video Dr. Byron Hyde - Enterovirus theory?

Discussion in 'General ME/CFS Discussion' started by Theodore, Sep 23, 2016.

  1. Theodore

    Theodore Senior Member

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    Someone just sent me a very interesting video about Dr. Hyde and an enterovirus theory.



    I tag @Hip since he is into this kind of virus :).


    Enjoy!
     
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  2. Justin30

    Justin30 Senior Member

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    Wonder if he has other videos?
     
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  3. Justin30

    Justin30 Senior Member

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    Why hasnt hydes work been thoroughly investigated?

    Is it that severe ME patients fit this model more so?

    I personally think he is correct but with the encephalopathy but I also believe it is caused by Other viruses and bacteria.

    Well they knew how bad polio is why the heck didb they not make a vaccine for the other Coxsacies viruses?????

    Further only one drug ever made for enteroviruses.

    I know many feel like GUT had a big part to do with it all but the problem at the end of the line is the is the encephalopathy or encephalomylietis..

    No funding, no research, cant even get a PET or SPECT if you live in Canada...good luck....probably just as hard in the UK and other parts of the world.

    Absolutely resiculous. This disease should be called "Suffering Disease" as it in most cases never stops keeps you alive and no money goes into it.

    Its a joke
     
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  4. halcyon

    halcyon Senior Member

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    I assume they'll be posting more videos, they usually do several for each person, but with a bit of a delay in time between posting them.
     
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  5. Hip

    Hip Senior Member

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    Very interesting video, @Theodore.

    The transcript of this Byron Hyde video entitled "Introduction" is here:
     
    Last edited: Oct 13, 2016
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  6. Dechi

    Dechi Senior Member

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    I am a new patient with Dr Hyde. Still too early to tell, but he suspects I might have been infected with Enterovirus 71. We're trying to get me a SPECT scan but so far we have found no machine, not even in Montreal. The newer ones with the new technology are specifically designed for psychiatric anomalies, not physical ones like ME has.

    Dr Hyde says there might be a place in Toronto where I could get one, but it's six hours from me. I'll go if I have to.

    I hope Dr Hyde does more videos like this one. He's very interesting to listen to !
     
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  7. Hip

    Hip Senior Member

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    I have never heard of enterovirus 71 being associated with ME/CFS.

    The types of enterovirus that ME/CFS is usually associated with are the enterovirus B species, which include coxsackievirus B and echovirus. Whereas enterovirus 71 is grouped with the enterovirus A species, along with coxsackievirus A, which is not normally linked to ME/CFS.

    You can see the taxonomy of different enterovirus species, from enterovirus A to enterovirus J here.
     
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  8. Dechi

    Dechi Senior Member

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    I am just repeating what Dr Hyde said. He was thinking enterovirus 68 or 71, 71 being most probable. I'll look at your link. I haven't found any documented link between ME and enterovirus 72 either, so far.
     
    Last edited: Sep 23, 2016
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  9. Hip

    Hip Senior Member

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    Enterovirus 68 is an enterovirus D species, again not linked to ME/CFS as far as I am aware (I have never seen studies or heard of individual patients with ME/CFS associated with enterovirus A or enterovirus D). Though I guess that might be because nobody has really looked.

    Enterovirus D is an interesting species, though, as the viruses in this grouping have characteristics of both enteroviruses and rhinoviruses (the common cold virus).
     
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  10. Hip

    Hip Senior Member

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    It is interesting that Dr Byron Hyde's own definition of ME excludes viruses other than enterovirus, and excludes patients who do not have inflammation of the brain showing up in their SPECT or PET scans.

    I wonder if anyone has examined CCC-defined patients, especially those whose ME/CFS is classed as severe (on the scale of mild, moderate and severe), and checked whether they have brain inflammation showing in their SPECT or PET scans.

    I am just wondering how Hyde's definition of ME maps onto the CCC definition.
     
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  11. Justin30

    Justin30 Senior Member

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    I think he feels its to wide of a definition I think I read this from the hummingbird foundation.

    I feel that Hyde is correct in that an direct hit to the brain and CNS occurs.

    That said I think that other viruses do this as well.

    Its like a mild vascular injury to the brain and brain stem which alters homeostasis.

    Irregardless a vaccine should have been created for all these common viruses such as Entero to herpes.

    Dont forget to that an encephalopathy directly impedes mito function. As does a mito disease.

    I have this feeling that the insult disturbs the BBB and allows proinflamaory cytokines to continuosly get into the brain and spinal cord. If the inflmation is lowered or stopped then symptoms disappear.

    @Hip you mentioned so much about Microglial inhibitors and I feel these in whatever for are the key to success in a significant proportion of those with many neuro symptoms.

    I wish a more large scale study would look at encephalopathy and neuroinflamation and then work backwards to find treatments.

    I also think that the people in power know that common viruses lead to ME and as a result would not like to let this out as it would lead to mass histeria and a huge demand by healthy people to have a plan of action. Well this costs money and time.

    People with ME are great for the economy as we try so many therapies and supplements.

    Just my thoughts.
     
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  12. Chrisb

    Chrisb Senior Member

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    It is somewhat surprising to see that the doctors involved in the case he describes seem to have diagnosed themselves with ME within a fortnight of infection. I wonder why at that stage they would not have considered themselves to be suffering from a particular enterovirus rather than ME. No mention is made of the subsequent course of the illness and whether it went on to become chronic in all of them, or whether they in fact recovered.

    In general I am an admirer of Dr Hyde, and I recognise the limitations imposed by the time available to him, but this video just leaves one wanting to ask questions.
     
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  13. Dolphin

    Dolphin Senior Member

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    I think Dr Hyde's work would have had more influence if he had published more.
    He has published virtually no research papers in the last 20 years.

    As I understand it, you pay the Nightingale Research Foundation to see him:
    http://www.nightingale.ca/index.php?target=researchpatients

    In such a scenario I think there is an onus on them and him to publish more. Making statements in videos and at meetings isn't the best way to influence a research field.
     
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  14. Dechi

    Dechi Senior Member

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    There is no fee to see Dr Hyde at his office. It's covered by medicare if you are canadian. The fees described on his website are for a skype meeting if for whatever reason you can't wait to see him or he is too far away, or you are abroad. Dr Hyde is a very generous and caring man. More so than any doctor I have ever seen in my entire life, and I am almost half a century old ! ;-)

    Also, we are very lucky that he is still practicing. He looks like a 60 year old but he is not. He is in great physical condition and his mind is very sharp. I don't know of many men his age still working so hard and with such passion, in fact I know of none. This might explain the lack of publishing. He is probably devoting his time to directly helping sick and very sick people.
     
  15. Gamboa

    Gamboa Senior Member

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    I have been a patient of Dr.Hyde's for the last few years and was thoroughly investigated by him. And I do mean thoroughly!

    This was was really only possible, however, since I live in Ottawa, where he lives part of the time, and I am an Ontario resident, so the tests he ordered were available free ( for the most part) under OHIP. This has very likely changed since the Ontario government has been continually clamping down on medical expenses and Dr.Hyde was running up against a brick wall. (This was nothing new to him, by the way. He has been up against walls and knocking them down and scrambling around finding alternative routes for things his entire career. I think he loves a challenge :) )

    He knows and corresponds with Dr.Chia in California who does the most research, as far as I know, concerning the link between enterovirus and ME. And I say ME here because Dr. Hyde does believe ME is a distinct disease and CFS is a group of other illnesses, very often a misdiagnosis.

    As for the misdiagnosis angle, when I first went to see Dr. Hyde, he sent me for a multitude of tests-extensive blood work, cardiac work up, SPECT scan ( in Toronto), full body MRI, 2 day CPET studies ( I did 2 of them!! One in Ithaca and another a year later at the Ottawa Heart Institute- both via Dr.Hyde). He referred me to a neurologist, pulmonologist, cardiologist, another cardiologist who specializes in autonomic dysfunction-in Hamilton, hematologist and more I can't remember.

    Back to the enterovirus--Dr.Hyde was sending all samples of gastric biopsies that patients had had done previously or via him to Dr Chia for testing. Prior to seeing Dr Hyde I had seen a gastroenterologist for Celiac Disease and had had a gastric biopsy done. My sample was obtained from the lab and sent to California but was rejected for some reason to do with how it was processed. Unfortunately I was not able to get a result unless I have another gastric biopsy done, not a simple or cheap procedure. As far as I know Dr. Hyde was getting results back from other patients.

    At the IACFS/ME Conference this October in Fort Lauderdale Dr Chia is giving a workshop all about his research and findings on Enterovirus and ME/CFS. I am attending the conference this year and attended the last 2. Dr. Hyde will most likely be there as well and I would expect will be at this particular workshop.
     
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  16. Dechi

    Dechi Senior Member

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    @Gamboa What diagnostic did you get as a result of all these investigations ?
     
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  17. halcyon

    halcyon Senior Member

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    I don't think he has had much to add. His theories are not his alone (on enterovirus + SPECT etc.). He has worked with James Mowbray in the past, and John Chia more recently, both of whom have strong evidence published in the literature. It's just sitting there waiting for someone else to acknowledge it and do something with it. Sad to know that the upcoming NIH post infectious study and OMF big data study will have no enterovirus serology performed and no tissue testing. Again and again this viable hypothesis is left behind in favor of herpes viruses, which many experts say likely have nothing to do with ME but are then included in the research anyways.

    His contribution of publishing the proceedings of the Cambridge ME symposium in 1992 is still valuable to this day and I think every patient should read that book.
     
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  18. Justin30

    Justin30 Senior Member

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    I totally agree they need to publish their findings.
     
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  19. Theodore

    Theodore Senior Member

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    I am sorry, maybe it's due to my english level but I don't understand this part of the transcript : "So you need two things to define ME, and it's very simple: either recovery of an enterovirus in an acute onset, which is very hard to do, because nobody suspects it; or chronically, by looking at the stomach mucosa, and recovering the capsid protein, which is actually very easy to do if you've had a stomach biopsy, and a lot of these patients have because they have gastric problems immediately after and often chronically with this disease."

    "You need two things to define ME, either recovery of an enterovirus"? How can a recovery can help a diagnostic?
     
  20. halcyon

    halcyon Senior Member

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    In this context it means to find or retrieve.
     
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