New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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I need some positive news

Discussion in 'General ME/CFS Discussion' started by Vicki Cole, Feb 6, 2018.

  1. Vicki Cole

    Vicki Cole Senior Member

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    Anyone else feel tired out with living with the constant need of research news. Every day I wake up hoping for something from the OMF; I want so much for them to figure this illness out. I'm desperate, like all of us. I know they are doing their utmost - I just wish I could really know that an end was in sight. I really do.
     
  2. Runner5

    Runner5 Senior Member

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    This week they found how bad microbes could form symbiotic relationships with each other on the GI intestinal wall and produce bowel cancer in people predisposed genetically to colon cancer. They're really moving along when it comes to research into the microbiome. That might yield some leads.
     
  3. pibee

    pibee Senior Member

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    Yep.. me too........
    I am dreaming of fast forwarding life to 2025 to find out how this story 'ended' - what is ME. and of course to enjoy life.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Do you have a link to this (only b/c I missed it and would love to read it). My mom has Stage 4 Colon cancer and I am (now) genetically predisposed and being told my sister and I should both get colonoscopies now vs. waiting until age 50 (when insurance normally recommends and covers this in the US).
     
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  5. pibee

    pibee Senior Member

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    Ginger, do you have Lynch syndrome?
    My grandmom had colon cancer, when testin 23andme for ME, I found out accidentally I have Lynch syndrome, even homozygous mutations for MLH1, which is predisposition to colon and bladder cancer. Didnt get a chance to deal with it yet, but I know i should do colonoscopies each year since 20 years old
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Not that I know of and I have never heard of this before. I just Googled it and it seems to relate to family members getting dx'd w/colon cancer at age 50 or younger and my mom was age 80 at diagnosis so I am guessing it does not apply.
     
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  7. Sushi

    Sushi Moderation Resource Albuquerque

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    Do your Mom's doctors have any estimate as to when the colon cancer started? That might be helpful to you and your sister when you apply for insurance coverage for your colonoscopies.
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Not sure how thats relevant tho..
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    I agree that it is not relevant to what the original poster asked (although it is very interesting to me personally re: colon cancer). I will reply to Sushi and then not take the thread further off topic. I have actually been thinking about starting a new thread on this topic including colonoscopies (later when I have time).

    The oncologist said 1-2 years if he had to guess. They think it might be a slow growing tumor (that is now very advanced and has metastasized) but probably could have been minor if caught earlier. I am very interested in learning more about OMF's findings re: the microbiome and colon cancer (but will put this in a new thread later).
     
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  10. Vicki Cole

    Vicki Cole Senior Member

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    My gut is probably my worst area which I know is affecting all other symptoms.
     
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  11. Vicki Cole

    Vicki Cole Senior Member

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    I wish the omf would look here. I KNOW it is. When my gut is bad, ALL m.e worsens significantly. When my gut is 'rarely' good, my m.e can almost vanish. I wish Ron would look to the gut. The immune reaction we see in m.e could be us reacting to the gut bacteria that is getting into our blook stream - affecting our blood too maybe? (Re the weird blood he has seen).
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @Vicki Cole or @Runner5 Do you have a link to the microbiome research that OMF is doing that links to colon cancer? I can't seem to find it (although I have not had a lot of time to search).
     
  13. Vicki Cole

    Vicki Cole Senior Member

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    @Gingergrrl I knowill nothing about any research the omf is doing into the microbiome at all. I wasn't aware they were doing any :(
     
  14. Vicki Cole

    Vicki Cole Senior Member

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    Yes, I've also looked at all those studies and Ken lassensen has so much info - despite advice, my gut is not cured. One particular probiotic called symprove messed everything up terribly... I have so much belief in Ron Davis - his aims to find treatments and not simply 'study' the disease. I wish he would look into the microbiome as I am so sure it is a root, if not the root of m.e.
    Everything started in my gut - then the other symptoms developed...
     
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  15. Vicki Cole

    Vicki Cole Senior Member

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    I wonder how many of us have this strong belief that it originates in the stomach. I have never felt more strongly about a root cause.
     
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  16. Vicki Cole

    Vicki Cole Senior Member

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    [
    I honestly think it's gut dysbiosis first - perhaps initially gone haywire due to a combination of virus plus stress plus genetics (I had gone to uni very well, yet vet stressed out, I got a bad flu in the first month and started feeling extremely sick/nauseous thereafter. 6 months down the line, m.e symptoms started developing... and the nausea/sicknesd/bloating/allergy reactions to food's carries on.... I think that something kicks off the dysbiosis and then m.e is a consequence of the dysbiosis.
    When I was pregnant, my stomach issues were so much better and hence my m.e was so much better. When my stomach calms (maybe due to a new probiotic or herbal), so does m.e symptoms. There is an obvious correlation here.
    QUOTE="ebethc, post: 954179, member: 15064"]I feel the same way... however, I do think that there could be a chicken vs the egg situation... For example: CFS causes autonomic dysfunction, so lower stomach acid and/or bile production and/or enzyme production all add up to gut dysbiosis (by which I mean any bad bacterial situation...could include SIBO or something else..).... On the other hand, maybe the gut dysbiosis causes your GI to go haywire! I'm not sure which comes first ...the dysbiosis or the haywire GI

    what do you think?[/QUOTE]
     
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  17. Vicki Cole

    Vicki Cole Senior Member

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    [/QUOTE]
    Sorry, I don't know why I've managed to post your comment twice @ebethc
     
  18. Vicki Cole

    Vicki Cole Senior Member

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    I haven't had any testing. I'm in the UK after all All I know is the stomach is a major area to me. I'd give anything to have a good specialist to help me!
     
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  19. Runner5

    Runner5 Senior Member

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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Runner5 and I bookmarked your post and the article to read at a later point. Thanks again!
     

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