I need some positive news

[Hopeful1976]

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.

 

[Runner5]

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.

 

[pibee]

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 ing know they are doing their utmost - I just wish I could really know that an end was in sight. I really do.

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.

 

[Gingergrrl]

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.

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).

 

[pibee]

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).

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

 

[Gingergrrl]

Ginger, do you have Lynch syndrome?

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.

 

[Sushi]

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.

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.

 

[Marky90]

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.

Not sure how thats relevant tho..

 

[Gingergrrl]

Not sure how thats relevant tho..

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).

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.

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).

 

[Hopeful1976]

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.

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

 

[Hopeful1976]

yes, the longer I'm sick the longer I think the root cause is in my gut

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).

 

[Gingergrrl]

@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).

 

[Hopeful1976]

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

 

[Hopeful1976]

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...

 

[Hopeful1976]

yes... perhaps the pineapple fund will make this possible.. I'm not sure stanford is doing much w microbiome - odd b/c it's so popular now! that may be because ucsf has so much going on... hmm.. I'd like to know why there's not much more going on at stanford, and of course, what Ron thinks...

the gut is so complex... hang in there... I'm going thru a lot of disappointment and frustration w gut issues, too, and also believe that it's key.

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.

 

[Hopeful1976]

[

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?

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]

 

[Hopeful1976]

[

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]
Sorry, I don't know why I've managed to post your comment twice @ebethc

 

[Hopeful1976]

I've heard that NK cells are much higher during pregnancy (something about the immune system protecting the fetus)... Since NK cells are lower and/or low functioning for most/many CFS'ers, I wonder if that's why you felt better?? Do you know if you have poor NK cell function when you're not pregnant?

I believe that someone on this board said that Dr Kaufman said that if he could change one thing, he would give his patients good NK function

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!

 

[Runner5]

@Gingergrrl

Link to the article about the microbiome and colon cancer

 

[Gingergrrl]

@Gingergrrl Link to the article about the microbiome and colon cancer

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