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

[Violeta]

Moderator's Note -- This thread has been split off from --http://forums.phoenixrising.me/index.php?threads/interview-ian-lipkin%E2%80%99s-million-dollar-appeal-for-microbiome-study.28139/page-12.


I don't understand why Lipkin is talking about this research as if it's a new topic. There so much research out there that shows the relationship between chronic fatigue syndrome/fibromyalgia, the microbiome, and the immune system.

And, they already know what bugs and what byproducts of bugs are in the gut.

Some people even know what to do about them.

 

[Firestormm]

I don't understand why Lipkin is talking about this research as if it's a new topic. There so much research out there that shows the relationship between chronic fatigue/fibromyalgia, the microbiome, and the immune system.

And, they already know what bugs and what byproducts of bugs are in the gut.

Some people even know what to do about them.

Nobody has approached this topic in this way before. Not with so many patients and controls. And not from the 'top down'. Also it will feature follow-up work on blood and cytokines. If as a result of this quality work, something can be established, it has more chance of being taken seriously.

Remember Lipkin's CDC Broadcast last year? When he spoke about the immune activation they had discovered in the massive pathogen hunt using samples from Montoya and Peterson etc.? Well now he is after what might be causing that - so he has the scent and is after the prey.

Previous and existing studies on ME and Microbiome are actually few and far between. I believe Simon cites 2 examples: one from De Meirlier, and one that is underway from Invest in ME in the UK.

There is a lot of treatment being offered to people with ME for gut-related problems, and a lot of people being treated for e.g. bacteria-related infections with for example antibiotics; what this study might show is a link between any gut pathogens that are found, and the immune activation that now seems to be more established in ME.

A lot of people also either try and are continuing to pursue various diets and use probiotics but there has been little significant science behind any of it in relation to ME. It's really about trying to establish if the Microbiome is a 'trigger' for the immune activation.

And if it is, and this can be established in such a large study, then future studies may be able to develop better treatment options - or confirm that some of the existing treatments are indeed viable.

What seems to dog ME - as it does for other conditions but perhaps to a lesser extent - is that we each have tried or are trying things that we think are helping, but that are not really backed by research into the disease itself.

Our individual treatments might be helping us as individuals - but are they helping us because of the disease? And how can you determine an effective treatment for ME when you don't really know what ME is?

We are hindered by a lack of consensus over what in actual fact the disease constitutes. We are plagued by clues and hypotheses - many of which never get beyond the stage of opinion.

I think it is only through larger studies like this one - rather than small pilot studies as have dominated our history - that we stand a better chance of determining meaningful answers.

 

[Violeta]

Nobody has approached this topic in this way before. Not with so many patients and controls. And not from the 'top down'. Also it will feature follow-up work on blood and cytokines. If as a result of this quality work, something can be established, it has more chance of being taken seriously.

Remember Lipkin's CDC Broadcast last year? When he spoke about the immune activation they had discovered in the massive pathogen hunt using samples from Montoya and Peterson etc.? Well now he is after what might be causing that - so he has the scent and is after the prey.

Previous and existing studies on ME and Microbiome are actually few and far between. I believe Simon cites 2 examples: one from De Meirlier, and one that is underway from Invest in ME in the UK.

There is a lot of treatment being offered to people with ME for gut-related problems, and a lot of people being treated for e.g. bacteria-related infections with for example antibiotics; what this study might show is a link between any gut pathogens that are found, and the immune activation that now seems to be more established in ME.

A lot of people also either try and are continuing to pursue various diets and use probiotics but there has been little significant science behind any of it in relation to ME. It's really about trying to establish if the Microbiome is a 'trigger' for the immune activation.

And if it is, and this can be established in such a large study, then future studies may be able to develop better treatment options - or confirm that some of the existing treatments are indeed viable.

What seems to dog ME - as it does for other conditions but perhaps to a lesser extent - is that we each have tried or are trying things that we think are helping, but that are not really backed by research into the disease itself.

Our individual treatments might be helping us as individuals - but are they helping us because of the disease? And how can you determine an effective treatment for ME when you don't really know what ME is?

We are hindered by a lack of consensus over what in actual fact the disease constitutes. We are plagued by clues and hypotheses - many of which never get beyond the stage of opinion.

I think it is only through larger studies like this one - rather than small pilot studies as have dominated our history - that we stand a better chance of determining meaningful answers.

If I didn't think that there are already people out there who know all about this and could write the conclusion this week using studies that have already been published, I might not have such an issue with it.



He's on the scent of a pathogen that is causing an immune response!
I'm sorry, but that almost sounds funny, because there are so many studies and so much information out there about the immune system and pathogens causing an immune response.

I wish I was able to verbalize what I'm thinking better. Maybe over the next couple of days I'll be able to explain what I mean a little better. Also, I'll get links to studies showing that a lot of this information is already out there.

One thing I can verbalize, but I can't sugar coat it because I'm tired, is that it rather bothers me that he says he's on the scent of a pathogen, as if to get everyone excited that there is a mysterious new pathogen that is a common denominator for all people with ME. "They" have taken us down that road before.

Firestorm, do you have chronic fatigue syndrome or fibromyalgia? I'm curious to what you have learned, tried, and think about it. Have you read about gram negative bacteria and LPS? Have you been tested for EBV or bartonella? Have you tried antibiotics, probiotics, or prebiotics?
Just wondering.

Thanks,
Violeta

 

[vli]

If I didn't think that there are already people out there who know all about this and could write the conclusion this week using studies that have already been published, I might not have such an issue with it.

Hi @Violeta

In a way, I almost agree with you in your first post because I am sure De Meirleir is onto a big thing with his HERVs.

But if I may answer with the "initiator of this campaign" cap on (and a very sick one at that): WHY has De Meirleir not drawn up a study to confirm his HERV findings that patients like me can crowdfund and why hasn't he publicly appealed to the patients for money? No one has yet answered me. People are free to donate or not to donate to Lipkin. If it mattered so much to all the De Meirleir patients who have talked to me and said it's De Meirleir who should be funded, then get someone to write up an interview with him and try to form a crowdfunding campaign out of it. Why haven't they?

Meanwhile, neither this campaign nor Lipkin is preventing other research work from being funded or crowdsourced. Lipkin is not "taking funds away" from a pot that would otherwise have been allocated to other researchers.

 

[vli]

Hi @Violeta, I hope @Firestormm manages to reply you because he is *INCREDIBLY* busy as Content team lead but I can confirm for you that he indeed has ME/CFS!

 

[Violeta]

Thank you, I'm not in a hurry for the answer, but I most of all am wondering what he has learned over the years if he thinks there are only two studies done that relate to the microbiome of someone with chronic fatigue syndrome.

Does it seem strange to anyone that the very remedies that Lipkin proposes are those that are already in use?

And BTW, if anyone is interested in trying to help themselves while waiting for this study to get done, Vegas has added some very helpful information about probiotics, gram negative bacteria, LPS, and prebioitics.

PS: I have only stated my opinion because I don't want anyone to get burnt.

 

[vli]

Thank you, I'm not in a hurry for the answer, but I most of all am wondering what he has learned over the years if he thinks there are only two studies done that relate to the microbiome of someone with chronic fatigue.

If you know more than the two (as you say, relating specifically to ME/Chronic Fatigue Syndrome), can you please list them here?

Does it seem strange to anyone that the very remedies that Lipkin proposes are those that are already in use?

Personalised medicine
If there is evidence of a causal role, Lipkin says they would look to establish clinical trials of treatments that could include probiotics, antibiotics followed by prebiotics, restriction diets and possibly even faecal transplants. He believes that there would not be a single microbiome cause of the illness, but different types – potentially fungal, bacterial and viral problems causing three separate types of immune dysfunction.

Lipkin calls these different types ‘endophenotypes’ and it could lead to personalised medicine, where the particular treatment depends on the specific form of the illness.

With that in mind, I am not sure (though I am perfectly happy to be corrected) that pre- and probiotics would be sufficient to fight against fungi, viruses and bacteria since those currently available treatments that you mention only tackle one of those three trees of life.

Vegas has added some very helpful information about probiotics, gram negative bacteria, LPS, and prebioitics.

Who is Vegas?

 

[Kati]

If you know more than the two (as you say, relating specifically to ME/Chronic Fatigue Syndrome), can you please list them here?



With that in mind, I am not sure (though I am perfectly happy to be corrected) that pre- and probiotics would be sufficient to fight against fungi, viruses and bacteria since those currently available treatments that you mention would only tackle one of those three trees of life.

Who is Vegas?

In addition to Vli I would add that Lipkin is primarily a virus hunter.

 

[Violeta]

If you know more than the two (as you say, relating specifically to ME/Chronic Fatigue Syndrome), can you please list them here?



With that in mind, I am not sure (though I am perfectly happy to be corrected) that pre- and probiotics would be sufficient to fight against fungi, viruses and bacteria since those currently available treatments that you mention would only tackle one of those three trees of life.

Who is Vegas?

Yes, I will start listing studies that give information about the gut with relation to chronic fatigue syndrome tomorrow, tonight if I get some energy.

With respect to pre and probiotics only tackling one of those three trees of life, I'm not sure why you are saying that. I said that Lipkin's proposed remedies are remedies that are already in use for chronic fatigue syndrome, i.e., do you see anything new that he is proposing? He lists more than pro and prebiotics, he lists antibiotics and fecal transplants.

Yes, he has been a virus chaser, but he doesn't list any proposals for treating virii. Just another reason for concern about his "study".

There are alternative treatments for virii. He doesn't list any.

Who is Vegas? He's a member here, and if you type his name in the search box you can see his posts about working on the microbiome at the methylation forum.

 

[Violeta]

With respect to Lipkin's mention of something inside white blood cells, I found this study. It's not about the microbiome, but it's the first thing that came to mind to look for. Infected white blood cells in chronic fatigue and fibromyalgia.

www.cfids-cab.org/cfs-inform/Mycoplasma/endresen03.pdf

 

[Valentijn]

Thank you, I'm not in a hurry for the answer, but I most of all am wondering what he has learned over the years if he thinks there are only two studies done that relate to the microbiome of someone with chronic fatigue.

Violeta - this is a ME/CFS forum. No one here is talking about "chronic fatigue". Please stop calling it that, if you are indeed referring to ME/CFS (preferably as defined by CCC/ICC).

 

[Sasha]

I said that Lipkin's proposed remedies are remedies that are already in use for chronic fatigue, i.e., do you see anything new that he is proposing? He lists more than pro and prebiotics, he lists antibiotics and fecal transplants.

Yes, he has been a virus chaser, but he doesn't list any proposals for treating virii. Just another reason for concern about his "study".

There are alternative treatments for virii. He doesn't list any.

Several people have made similar points in this thread - that they believe that there's some literature that has already done the research that Lipkin is suggesting and that there already exist treatments for gut dysbiosis in ME.

There have also been several detailed replies as to why that's not the case and I think we're just going round on circles on this but I will say: without a large study (Lipkin's will have 100 patients, 100 controls), any study's results simply don't get taken seriously. Most studies of anything in ME, let alone the gut, have far too few patients for the results to have any impact.

Also, Lipkin has detection techniques that most other labs don't so he can find pathogens that other labs can't.

In terms of treatments, unless there's a well-conducted, big study published that convincingly shows what's wrong with our microbiome, patients aren't going to get treated by doctors. Treating your own gut isn't an easy or trivial thing, as is clear from the many, many people on the forum with gut issues who can testify to that.

@Violeta, you say that Lipkin isn't proposing any new remedies that aren't already being used for ME (I'm assuming you meant ME when you said 'chronic fatigue') and that he mentions faecal transplants, for example. Faecal transplants aren't available for any of us at any surgery or clinic anywhere in the world as far as I know; and desperate self-administration such as some IBS patients attempt is dangerous. Nor is the kind of personalised, test-based medicine available that he's talking about.

He's offering to push the frontiers back and we're very, very lucky that he's willing to do this for us.

I understand that everyone has their favourite researchers and favourite theories and if that's the case, work with those researchers to set up a funding campaign. There isn't a limited pot of money. This Lipkin campaign, because of his profile, will get ME research much, much more visibility than before if we play our cards right, and open up a new world of donors - those people with ME who aren't already part of the community and don't know that there are projects to fund, and those healthy people who will be impressed that someone of Lipkin's stature sees this as a real, serious disease and who will start to give.

A rising tide floats all boats.

 

[Violeta]

Violeta - this is a ME/CFS forum. No one here is talking about "chronic fatigue". Please stop calling it that, if you are indeed referring to ME/CFS (preferably as defined by CCC/ICC).

@Valentijn, do you know what CFS stands for?

 

[Sasha]

@Valentijn, do you know what CFS stands for?

It stands for 'Chronic Fatigue Syndrome', not 'Chronic Fatigue', which I believe was Valentijn's point. Many patients object to the use of 'Chronic Fatigue' to describe our disease because we don't just have 'chronic fatigue'. So do people with thyroid deficiency, MS, metabolic syndrome... and even healthy people who are merely 'run down'. 'Chronic Fatigue Syndrome' is hated for the same reasons but 'Chronic Fatigue' is widely seen as the most trivialising way of referring to our disease.

 

[vli]

'Chronic Fatigue Syndrome' is hated for the same reasons but 'Chronic Fatigue' is widely seen as the most trivialising way of referring to our disease.

Thanks @Sasha --couldn't have put it better myself.
And to the others who reminded us what the subject matter of this thread's supposed to be.

 

[MeSci]

It stands for 'Chronic Fatigue Syndrome', not 'Chronic Fatigue', which I believe was Valentijn's point. Many patients object to the use of 'Chronic Fatigue' to describe our disease because we don't just have 'chronic fatigue'. So do people with thyroid deficiency, MS, metabolic syndrome... and even healthy people who are merely 'run down'. 'Chronic Fatigue Syndrome' is hated for the same reasons but 'Chronic Fatigue' is widely seen as the most trivialising way of referring to our disease.

Indeed, some studies use 'CF' and 'CFS' as different subject groups. 'CF' can be caused by a wide range of conditions, whereas 'CFS' is commonly used synonymously with 'ME', although this is not universally accepted, and there are attempts to differentiate them.

 

[Violeta]

It stands for 'Chronic Fatigue Syndrome', not 'Chronic Fatigue', which I believe was Valentijn's point. Many patients object to the use of 'Chronic Fatigue' to describe our disease because we don't just have 'chronic fatigue'. So do people with thyroid deficiency, MS, metabolic syndrome... and even healthy people who are merely 'run down'. 'Chronic Fatigue Syndrome' is hated for the same reasons but 'Chronic Fatigue' is widely seen as the most trivialising way of referring to our disease.

I went through my messages and changed "chronic fatigue" to "chronic fatigue syndrome", I didn't mean to upset anyone. I didn't change it in the post where I listed it as one of the search words to find the article about infected white blood cells, but that's just because I was able to find the article without the word syndrome.

Would the word fibromyalgia be offensive, too? I can remove that if it is.

@Sasha, I had read that Lipkin was going to use 200 patients, what happened?
Also, if he proves that there is something wrong with our gut microbiome, are there doctors that know how to deal with that? If you know of a doctor that knows how to deal with that, I would appreciate his listing.

PS: @anyone in need of a doctor for antibiotics, there is an organization, www.roadback.org, that has a list of doctors that have experience with people with autoimmune diseases.

There also 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:
http://bacteriality.com/about-the-mp/

 

[Valentijn]

@Valentijn, do you know what CFS stands for?

CF stands for "chronic fatigue", which is a symptom of many illnesses, but not an illness itself. Chronic fatigue is also a symptom which many of us either don't have, or that we consider to be a rather minor annoyance compared to the more disabling symptoms which dominate and define ME/CFS. CF is also a terminology which is often used to trivialize ME/CFS, by equating the entire disease with simple fatigue.

I went through my messages and changed "chronic fatigue" to "chronic fatigue syndrome", I didn't mean to upset anyone.

Thank you.

Would the word fibromyalgia be offensive, too? I can remove that if it is.

I think it would offend if you referred to it as "chronic aches" or some such, which is an approximation of what you did when referring to ME/CFS as "chronic fatigue" Admittedly, it's an easy mistake to make, given the horrible name which is used in a few parts of the world.

 

[aimossy]

We have an opportunity to have some research done by a very good researcher. We need research done by good researchers....

Is there a possibility it could replicate other research as replication is also needed?

Lipkin is respected around the world how can this be bad so far, it gives Kudos to ME/CFS and turns other good researchers heads how is that bad.

People can use this as a platform to pressure govt, I feel he his almost handing us a weapon in that regard to advocacy.

I am really uncomfortable trying to treat myself with antibiotics and antivirals. I mean absolutely no disrespect to those that do and have found it helpful and that goes for all the antivirals and other treatments that have helped people. The right antibiotic for the right bug and targeted therapy with antivirals...I personally will be stabbing in the dark trying to do this or access things to find out which.

I can not afford to make myself worse being my own Ginea pig.

If Lipkin found something you get to call that progress and start looking at having researchers study treatments.

He may prove leaky gut theory who knows the point is to have people look into it.

He has the resources and team to make this happen sooner rather than later isn't that also something that is good.

It will obviously be following from research he has already done.

Not everyone has access to or ability to manage to help their gut. Please put your hand up if you are all fixed now.

If he doesn't find anything that is also good research.

The only thing about the research I thought about was the animal bit.....but that's is not even in the research he is proposing to do at this stage. And the only part of the Rat bit I had difficulty with was how useful rat studies are.

Yup, rats seem calmer on something=less anxiety ......they cant tell you, actually I am way too chilled out, its like Im stoned Im seeing colours and now I actually believe Im a pig.

But then Rat studies have their place in science and can be useful.

I feel I have made an informed decision.

People can do what they want I think it is very good that this research is being crowdfunded or whatever.

I think it unbelievable that this is a possibility or even an option. There was a time no one wanted to study us and if they did it was only in a psychosocial model.....I am soooo pleased things are changing and will continue to do so.

This is how I feel about things personally.

 

[Sasha]

I went through my messages and changed "chronic fatigue" to "chronic fatigue syndrome", I didn't mean to upset anyone. I didn't change it in the post where I listed it as one of the search words to find the article about infected white blood cells, but that's just because I was able to find the article without the word syndrome.

Would the word fibromyalgia be offensive, too? I can remove that if it is.

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

@Sasha, I had read that Lipkin was going to use 200 patients, what happened?

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.

Also, if he proves that there is something wrong with our gut microbiome, are there doctors that know how to deal with that? If you know of a doctor that knows how to deal with that, I would appreciate his listing.

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