Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data

A.B.

Senior Member
Messages
3,780
Likes
23,064
An update from the Microbe Discovery project. The samples have been collected but $5 million are required to analyze them. They want to look at the following areas

Microbiome
Proteins (proteomics)
Metabolism (metabolimics)
Viruses (using Lipkin's super powered VirCapSeq-VERT to scan for a wide range of viruses at once)
Immunology

http://microbediscovery.org/2016/08/05/ciis-mecfs-monster-study-microbes-immunity-complex-data/

Please fund this project. Even if patient donations alone may not be able to reach the target, every donation is a message of support that will attract donations from other sources as well.
 

msf

Senior Member
Messages
3,503
Likes
4,753
Why don´t they look at pathogenic bacteria as well as viruses? I´m not too bothered about this study not getting funded if they are only going to look at half the picture, especially as the other areas are already being covered by Davis, Hanson and KDM.
 
Messages
1,130
Likes
4,093
An update from the Microbe Discovery project. The samples have been collected but $5 million are required to analyze them.
The ever ending predictable cycle of 'need more money' and 'need more research'. Where are the commit dates for the ME treatments?
 

Comet

I'm Not Imaginary
Messages
686
Likes
3,708
CII's ME/CFS MONSTER STUDY said:
The crunch
There are no two ways about it – this study needs funding. More than a quarter of samples and questionnaires have already been collected and this analyses needs to get moving. They could be testing and analyzing these right now if the funds were available. The cost is often a lot more for analysis than collection, especially with this type of testing. The CII team is actively seeking funds to complete the work.

Our patient-led Microbe Discovery Project with all the support from the ME/CFS global community has helped to raise over $1.5 million in funds for CII research – our community made that happen. These funds along with an NIH NINDS grant and heavy subsidization by CII, enabling this collection.


CII needs at least $5 Million to test and analyze the samples. But, we can do more!


So far, the NIH has only given the researchers enough to partly cover recruiting patients and collecting samples, but the study is stranded without the funds for the all-important tests and analysis. We sincerely hope the NIH will decide to help make up some of the shortfall, but can we afford to wait? See our previous blog.

Too many people are too sick. Too many people have no support, help or treatments. There is a huge and urgent need for high quality research, and the CII team really needs our community’s help – so that they can help patients. We are still in a position of needing to bail-out mainstream research.

If you have ME/CFS, donating to great research is like an investment in better treatments. Think of the vast collective amount spent by patients on doctor’s appointments, think of all the trial medications and supplements that haven’t worked – ending up in the bin. If we spent the equivalent of one doctor’s visit or the cost of a supplement on investing in research – we can help get this study funded!
If we all gave a couple of bucks, it could make a big difference! We shouldn't have to fund our own studies, but, I would rather give a few dollars here and there and kick start the research than wait for the NIH.

Besides, it's called CII's ME/CFS MONSTER STUDY! :woot:
 

alicec

Senior Member
Messages
1,572
Likes
2,947
Location
Australia
Why don´t they look at pathogenic bacteria as well as viruses
They are studying the entire microbiome (bacteria, viruses, fungi) over time at two different sites - gut and mouth. If there are pathogenic bacteria there they will find them.

The immune response and metabolomics studies should reveal host response to the microbiome.
 

A.B.

Senior Member
Messages
3,780
Likes
23,064
I have donated to both the End ME/CFS Project and the Microbe Discovery Project.

I think it's worthwhile to have a second "big data" study. If they both find the same thing, it will hugely increase confidence in the finding. The redundancy also protects against false positives (XMRV anyone?).
 

msf

Senior Member
Messages
3,503
Likes
4,753
They are studying the entire microbiome (bacteria, viruses, fungi) over time at two different sites - gut and mouth. If there are pathogenic bacteria there they will find them.

The immune response and metabolomics studies should reveal host response to the microbiome.
I know, but what if the pathogenic bacteria are somewhere else? Also, they may just study the normal gut species, and not look out for pathogenic bacteria in those places.
 

alicec

Senior Member
Messages
1,572
Likes
2,947
Location
Australia
I know, but what if the pathogenic bacteria are somewhere else? Also, they may just study the normal gut species, and not look out for pathogenic bacteria in those places.
The bacteria have to come from somewhere and those two sites are the most likely origin.

Microbiome studies sequence all DNA present - they are not selecting any particular species.
 

msf

Senior Member
Messages
3,503
Likes
4,753
The bacteria have to come from somewhere and those two sites are the most likely origin.

Microbiome studies sequence all DNA present - they are not selecting any particular species.
That´s good that the microbiome study is going to sequence all the DNA present, but your first statement is just speculation. If Lyme is involved in many cases, I doubt it will be found by this study.
 

duncan

Senior Member
Messages
2,166
Likes
4,686
I have to echo @msf's concerns about Borrelia. Same holds true for Bartonella.

It almost seems Lipkin is steering clear of tick-borne diseases, or is it bacteria in general?

Could it be due to Columbia U's Tick-Borne Disease Center? I cannot believe it boils down to a professional courtesy to Fallon's center.
 

BurnA

Senior Member
Messages
2,087
Likes
9,786
Why don´t they look at pathogenic bacteria as well as viruses? I´m not too bothered about this study not getting funded if they are only going to look at half the picture, especially as the other areas are already being covered by Davis, Hanson and KDM.
This study is one of the biggest and most rigorous ever and you aren't bothered about it ?
I don't understand your comment.
The OMF study is great but it's 20 Patients at one time point AFAIK.
Hansons study doesn't come close in terms of scope.
KDM ? Are you joking?

As patients we need as much good quality research as possible, this is top quality.
 

Dufresne

almost there...
Messages
904
Likes
1,155
Location
Montreal
That´s good that the microbiome study is going to sequence all the DNA present, but your first statement is just speculation. If Lyme is involved in many cases, I doubt it will be found by this study.
Just as it wasn't found by their sequencing for pathogens in plasma and spinal fluid. We did get those anelloviruses though, didn't we?;)
 
Last edited:

duncan

Senior Member
Messages
2,166
Likes
4,686
In the US alone, 300,000 people are infected with Lyme every single year - and 20% of those are stricken with symptoms that do not resolve, even though they are told Lyme is cured. And that doesn't even count other Borrelia species, or even all the strains of Lyme.

Then there is Bartonella, also with many different pathogenic strains, even though we only can test for a couple.

There is also Babesia.

So literally hundreds of thousands in the US infected by TBD pathogens whose symptoms in many ways mimic or parallel ME/CFS.

How can Lipkin NOT look for these?
 

duncan

Senior Member
Messages
2,166
Likes
4,686
He seems to be assuming Bb has been handily dispatched as the lead candidate for persistent symptoms in Lyme patients after treatment. It's a disturbing assumption, especially in light of recent studies by the likes of Kim Lewis and Monica Embers, or the new Mayo Lyme species.

Thank you, @mango - I had forgotten this, but now I seem to recall it.

So, doesn't he have enough to explore with the other known TB pathogens? Don't they present with enough challenges and controversies? Still, perhaps he can find something new...so, sure why not explore, even though many feel we haven't remotely mapped out the territory of current known TBDs effects?

More to the point - will he take what he finds in the TICKS' microbiome and apply it to what he is searching for in the microbiome of pwME?

How will this effort directly help pwME in his big ME/CFS project?

Here is an example: So, Borrelia miyamotoi is thought to be a relatively new pathogen in terms of its incidence in most of the world. But let's say IT is responsible for ME/CFS...that in fact it has been around since the late 50's...There is no publically available test for miyamotoi - or one has only very recently been made available. How would the Lipkin study find this out if it is not even looking for Borrelia DNA in samples from pwME?

The omission of bacteria in general, and specifically TBD's, seems odd, especially in light of all the negative publicity old Lyme assumptions are getting these days.

It's great he is looking for all these viruses, but if they are only half the story...Yes, you can see the sun set by looking West, but good luck with that if you are hoping to see the sun rise.
 
Last edited:

BurnA

Senior Member
Messages
2,087
Likes
9,786
It's great he is looking for all these viruses, but if they are only half the story...Yes, you can see the sun set by looking West, but good luck with that if you are hoping to see the sun rise.
I am surprised by the negative vibes here.

This is an ambitious study which should lead to a deeper understanding of ME/CFS.
I don't think anyone is saying it will tell us everything but it could be a very telling study.

It's one of the biggest studies ever into ME and there seems to be criticism here because it's not big enough ?

Combine this study with the NIH and the OMF and maybe a picture will begin to form. I don't know, but it's a lot better than no study.
 

duncan

Senior Member
Messages
2,166
Likes
4,686
Take 5 viruses and throw $1Million at each one of them with the most exhaustive battery of tests imaginable.

That would be a great study disproving an association with those viruses - or, if lucky, finding the cause.

However, if you are picking the wrong pathogens - then you just flushed $5Million down the crapper.

Hey, he cannot cover all the bases. That is a given. But bacteria in general??

And TBD's are huge. It's a strange blind spot.