Lipkin's Microbiome Research -- new or old topic? (split thread)

[anniekim]

I have great respect for Dr. Myhill, but the notion that there is or should be 'one' diet for all people, sick or not, just defies common sense. Increased levels of carbs are recommended by many if one has cortisol issues…which many of us have.

@dannybex thanks for this info. I didn't know that increased levels of carbs are recommended by many if a person has cortisol issues. When you say cortisol issues, do you mean as in low cortisol? I have low cortisol and always wonder why I can't manage paleo/low carb diets when so many seem to. Sorry for going off track a bit on this thread

For the record I have donated and will again when funds allow

 

[Violeta]

Thanks, Violeta - and no problem with 'fibromyalgia'.



In this study there will be 100 patients, 100 controls. He did an earlier pathogen study reported last year with about 200 patients, if memory serves.



I think that will depend on exactly what he finds wrong with our microbiome.

Are you going to be part of the study?

 

[anniekim]

is a protocol by Trevor Marshall that was started for scleroderma, but is being used for ME/CFS, too. A young lady, Amy Praoul, has a blog called Bacteriality that explains it really well. She had ME/CFS and recovered using the protocol. Here's the link:

Wasn't the Marshall protocol popular for quite a while with ME patients, but like all the experiential treatments out there for the few who reported benefits, many didn't. @Violeta are you having success with a regime of antibiotics, probiotics etc? Many thanks

 

[Sasha]

Are you going to be part of the study?

No - the patients and controls have already been selected.

 

[vli]

SIGH. THank you SOC!

 

[anniekim]

Sorry that was my fault for letting the thread go off topic as I asked violeta what she was doing. Apologies

 

[dannybex]

@dannybex thanks for this info. I didn't know that increased levels of carbs are recommended by many if a person has cortisol issues. When you say cortisol issues, do you mean as in low cortisol? I have low cortisol and always wonder why I can't manage paleo/low carb diets when so many seem to. Sorry for going off track a bit on this thread

I mean fluctuating cortisol, as one can have low cortisol in the mornings (for example) but then spike up too high later in the day or evening. Increasing one's carbs can prevent the spikes and or help to to lower higher levels, from what I've read. Here's just one link to a report about a study that showed low-carb diets were linked to higher cortisol levels:

http://www.marksdailyapple.com/forum/thread88507.html

And this one:
http://www.paleoforwomen.com/protei...g-protein-reduces-anxiety-and-lengthens-life/

"Here, in one study, researchers set out to show that a high carbohydrate diet would induce more stress than a high protein diet, yet their finding ended up being the opposite: a high protein meal created a greater cortisol response than a high carbohydrate meal in women. Here, high protein diets are shown to decrease testosterone and increase cortisol in men. These studies demonstrate that high protein mealsincrease stress responses. "

 

[Kati]

I have a hard time understanding how someone can have a low carb diet. i have been using My Fitness Pal App for 1 year now and my carb level is as recommended, usually 50-60% of diet. Protein recommendation is 15%. Aythingover that, your body doesn't use. Since proteins are usually more expensive than carbs, well... My choice would be for a balanced diet. i lost 45 lbs by the way

(Oops sorry it's off topic)

 

[Daffodil]

I know Lipkin is a big name so whatever he finds will carry a lot of weight, but microbiome studies have been done (perhaps not to the extent that he will do them?) for so many diseases and no treatments have been found. I also hear lipkin is looking into lyme. but why do so many lyme patients not get better even after years of antibiotics?? this is because there is an autoimmune component at play - HERV proteins are being cranked out - and the only group I know who is looking into why, is KDM/Lombardi/WPI. They are simply 10 years ahead of everyone else. I know that people have problems with WPI because of the past, but I think it is time to take a fresh look at what they are trying to do - especially now that they are affiliated with KDM.

 

[vli]

this is because there is an autoimmune component at play - HERV proteins are being cranked out - and the only group I know who is looking into why, is KDM/Lombardi/WPI. They are simply 10 years ahead of everyone else. I know that people have problems with WPI because of the past, but I think it is time to take a fresh look at what they are trying to do - especially now that they are affiliated with KDM.

Again I have two questions.

1) Is KDM appealing to us for money?
2) And if he did, WHY aren't KDM patients gathering together to campaign for funding for his work or something?

 

[Sushi]

Again I have two questions.

1) Is KDM appealing to us for money?
2) And if he did, WHY aren't KDM patients gathering together to campaign for funding for his work or something?

I have not heard of him appealing directly to patients for money.

Sushi

 

[vli]

In that case

I'd just like to go on record as saying if KDM had drawn up an HERV study and said he needed x amount of money to do it, it would have been KDM I would have tried to ask Simon McGrath to interview and not Dr Lipkin. I am not joking. No such appeal ever came from KDM and no details can be found out about his study into HERVs (if one exists right now; I know Daffodil said KDM's now looking at why HERVs are being expressed?).

 

[Sushi]

In that case

I'd just like to go on record as saying if KDM had drawn up an HERV study and said he needed x amount of money to do it, it would have been KDM I would have tried to ask Simon McGrath to interview and not Dr Lipkin. I am not joking. No such appeal ever came from KDM and no details can be found out about his study into HERVs (if one exists right now; I know Daffodil said KDM's now looking at why HERVs are being expressed?).

I believe this study is continuing:

Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins

http://iv.iiarjournals.org/content/27/2/177.full

Therefore, reports of human endogenous retroviral (HERV) expression in association with neuroinflammatory diseases prompted us to investigate the gut of individuals with ME for the presence of HERV proteins. In eight out of 12 individuals with ME, immunoreactivity to HERV proteins was observed in duodenal biopsies.

 

[vli]

Thanks so much, Sushi. Please do allow me some time to read this--precisely because I think what the KDM supporters are saying is legitimate, I was asking around before for reasons why light should be shone on KDM's work and not Lipkin's, which appears to be a lot of people's objections to Lipkin's study in the first place.

 

[SOC]

Please do allow me some time to read this--precisely because I think what the KDM supporters are saying is legitimate, I was asking around before for reasons why light should be shone on KDM's work and not Lipkin's, which appears to be a lot of people's objections to Lipkin's study in the first place.

I'm not sure why people are complaining about ANY good research being done for us. We need all the good research we can get. If Lipkin is willing to produce a detailed outline for a study including a budget and ask for funding, and if someone is willing to put together a campaign to fund that study, then money is going to go there. It only makes sense.

If someone thinks other research should be funded, they should get off their complaining butts and, as @vli did in this case, find a way to get it funded.

As far as I'm concerned, anyone who is willing to do the work to develop a research plan and get it funded gets a HUGE thanks for me for their effort. I'm sure as heck not going to complain at them because they didn't do it exactly the way I think it should have been done.

ETA Many, many thanks to Dr Lipkin, vli, and others who are using their limited time and energy in constructive ways to get more biomedical research for ME/CFS. I will have the same thanks for anyone else putting in constructive effort to get different biomedical research done. Who knows where the answer will come from? The more research we have, the sooner we will find the answer.

 

[Daffodil]

FUND WPI....THEY ARE 10 YEARS AHEAD

 

[vli]

FUND WPI....THEY ARE 10 YEARS AHEAD

No one here's stopping that from happening; people are free to campaign for KDM, WPI, or crowdfund for Lombardi's work.

 

[Firestormm]

Anyone want to raise funds for me so as I can buy a Mars bar? Am feeling a bit peckish

 

[vli]

Thank you @Firestormm for the laugh

 

[Jon_Tradicionali]

@Violeta

You've raised excellent points that I and others have mentioned in the main Lipkin thread.
People are disagreeing with you mainly because we need every study into CFS that we can get.

Even if KDM has already been actively researching this area for years.

However, it's failure to collaborate which has resulted in researchers going along with their individual theories.

@Valentijn
Why does it matter what she calls it? We all know what we are referring to here. Instead of picking out such a small detail, focus instead on any ideas we can share regarding studies and treatment for the disease. N.B I've always called it CFS too.

I agree with @vli too. KDM never appealed to the patients for donating to one of his studies. I'm unsure if it's the case that he is able to actively research this area without the need for donations. But we need someone like Lipkin who is bold and to the point and wants to move things along so we can find the guilty pathogen and finally begin treatment that will at least bring about remission.