• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

duncan

Senior Member
Messages
2,240
I am surprised everyone isn't on board with exploring a possible role of TBD's in ME/CFS.

I am seriously taken aback by this appeal to authority protest, as well.

We should be insisting on an exhaustive evaluation of all known possibilities that monies permit, at the very least. By doing so, it doesn't necessarily mean we aren't thankful for researchers' involvement; quite the contrary, it shows we care enough to pay attention.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
CII’S ME/CFS MONSTER STUDY: MICROBES, IMMUNITY & COMPLEX DATA

I'd just like to briefly say that the person who wrote the blog in the opening post (it wasn't me) has been working tirelessly and thanklessly behind the scenes, through illness, over a long period of time, to keep the Lipkin fundraising project in the public's consciousness. They get no reward other than the knowledge that they are helping Lipkin's team, and the satisfaction of seeing your donations come in, and seeing the research start to take shape. This particular blog took an enormous amount of work and effort. So if anyone would like to shout out a big >>>thanks<<< [:hug::star::trophy:] to the person who wrote the blog (who may or may not want to identify themselves - I haven't asked them yet) then I'm certain it would be really appreciated.
 
Last edited:

eastcoast12

Senior Member
Messages
136
Location
Long Island ny
I am surprised everyone isn't on board with exploring a possible role of TBD's in ME/CFS.

I am seriously taken aback by this appeal to authority protest, as well.

We should be insisting on an exhaustive evaluation of all known possibilities that monies permit, at the very least. By doing so, it doesn't necessarily mean we aren't thankful for researchers' involvement; quite the contrary, it shows we care enough to pay attention.
Dude, we all want every possibility explored. If there is something wrong with your car you don't take the whole thing apart to look for the problem.
This happens to be 1 study specific to the microbiome, that's it. It's taken mankind some 500,000 years to get to where we are now one step at a time. That's how it works, one step at a time. They have a hypothesis and they're going to test it.
No one here is appealing to authority. In fact I'd argue the majority of people here have told authority to fuck off. It's because of the community and their commitment to challenge authority that we're starting to see a major shift in attitudes towards cfs.
I think your misinterpreting appealing to authority for genuine excitement and relief that world class researchers not only have taken a major interest in the disease but actually have out together one of the most comprehensive study of this disease ever.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I am surprised everyone isn't on board with exploring a possible role of TBD's in ME/CFS.
I think such an exploration is fine by many of us, but only as a small (i.e. proportional) part of a much wider field of research. Many of us don't believe we have a Lyme-like disease but would be over-joyed if research discovered a bacterial cause to the illness. Many of us are sceptical of the idea of a single pathogen causing the disease. I think the evidence suggests that the cause is likely to be more subtle and complicated. Multiple pathogens have been implicated in triggering the disease, and it seems very likely that we need to look for factors other than a single pathogen (that may or may not still be present in the body after triggering the illness). If it was a single pathogen I suspect we would have had more progress in the research by now. 'The' hypothetical pathogengenic cause has been very elusive despite many initial leads which have invariably not led us anywhere very illuminating. Personally, I suspect the illness involves a disruption in the biological workings of our systems that we simply have no clue about currently.
 
Last edited:

duncan

Senior Member
Messages
2,240
@eastcoast12 , okay.

You're in Long Island, for God's sake: You must know about the import of Lyme.

I hope Lipkin's research encompasses TBDs. I cannot tell from the excellent blog to which @Bob provided a link. If it does, super. If not, I will likely consider its utility measured.

@Bob, you misunderstand me. If Lyme is implicated in ME/CFS, I believe it will be pretty much the same mechanism as EBV etc, e.g, a triggered automimmune process.

But to the Lyme community, the ramifications are ENORMOUS. This is the political element perhaps ME/CFSers are maybe missing - strange, I know, since pwME are so intimate with medical politics.

I apologize if I am communicating this poorly. If Lyme proves to be one of the causes of ME/CFS, this in great measure undoes that disparaging - and wrong - depiction that Lyme & Company are merely nuisance diseases, and continued symptoms are imaginary.

And it substantiates a another contributing agent to ME/CFS, to boot.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@Bob, you misunderstand me. If Lyme is implicated in ME/CFS, I believe it will be pretty much the same mechanism as EBV etc, e.g, a triggered automimmune process.
OK.

But to the Lyme community, the ramifications are ENORMOUS. This is the political element perhaps ME/CFSers are maybe missing - strange, I know, since pwME are so intimate with medical politics.
It's not strange at all. The ME/CFS community is not generally fixated on tick-borne infections because there are soooo many other possible triggers and causes. Many of us have no reason whatsoever to suspect the involvement of tick-borne pathogens. Tick-borne pathogens may be a trigger for some ME/CFS patients, but I could list you a hundred other implicated infections, pathogens, chemicals, toxins, vaccines, and other potential trigger events. Looking at the community as a whole, tick-borne pathogens are highly unlikely to be the answer, although they could very well be a part of the answer, alongside all of the other myriad potential triggers. Your acute interest in tick-pathogens isn't mirrored by the community (in general) for good reason; it's not a casual dismissal of the issue. By all means advocate for your personal interest, but please be careful about dismissing other valuable research projects (that can have enormous value for the community) simply because they don't prioritise your specific narrow field of interest.
 
Last edited:

duncan

Senior Member
Messages
2,240
I have not dismissed other projects - I have merely pointed out they may not be as robust as they should be, and therefore their utility may be measured or suspect. I have made these observations ion the hopes of correcting weaknesses, not tearing down the structure. There is a difference.
 

Comet

I'm Not Imaginary
Messages
693
CII’S ME/CFS MONSTER STUDY: MICROBES, IMMUNITY & COMPLEX DATA

I'd just like to briefly say that the person who wrote the blog in the opening post (it wasn't me) has been working tirelessly and thanklessly behind the scenes, through illness, over a long period of time, to keep the Lipkin fundraising project in the public's consciousness. They get no reward other than the knowledge that they are helping Lipkin's team, and the satisfaction of seeing your donations come in, and seeing the research start to take shape. This particular blog took an enormous amount of work and effort. So if anyone would like to shout out a big >>>thanks<<< [:hug::star::trophy:] to the person who wrote the blog (who may or may not want to identify themselves - I haven't asked them yet) then I'm certain it would be really appreciated.
Can I nominate this person for the Mystery Bob?! :trophy: :star: :trophy:
 

alicec

Senior Member
Messages
1,572
Location
Australia
They might employ Next Generation Sequencing, which would remove all bias. I don't know if we're potentially a few years out of that being used in large trials like this though

We are not a few years out from using this in large trials, it is well and truly in effect now. This is the technology which has made microbiome studies possible, they could not be done using the original Sanger based sequencing. NGT is now so mainstream that several enterprises offer inexpensive testing of one's personal microbiome (I know you have used these from another thread).

I suspect that some of the scepticism on this thread stems from a lack of understanding of the power of microbiomics, metabolomics and proteomics.
 

duncan

Senior Member
Messages
2,240
t's not strange at all. The ME/CFS community is not generally fixated on tick-borne infections because there are soooo many other possible triggers and causes. Many of us have no reason whatsoever to suspect the involvement of tick-borne pathogens. Tick-borne pathogens may be a trigger for some ME/CFS patients, but I could list you a hundred other implicated infections, pathogens, chemicals, toxins, vaccines, and other potential trigger events. Looking at the community as a whole, tick-borne pathogens are highly unlikely to be the answer, although they could very well be a part of the answer, alongside all of the other myriad potential triggers. Your acute interest in tick-pathogens isn't mirrored by the community for good reason; it's not a casual dismissal of the issue. By all means advocate for your personal interest, but please be careful about dismissing other valuable research projects (that can have enormous value for the community) simply because they don't prioritise your specific narrow field of interest.

Sorry, I feel compelled to address this more.

I do not think TBD's are THE answer. Nor have I even hinted at that in this thread. I think TBD's, including Lyme, have a similar likelihood of triggering ME/CFS as EBV and HHV-6 and Coxsackie A & B, etc. PERIOD. I think it is important that you know I test high or positive for ALL of those. I also am out of range low for NK cell function. I satisfy the CCC and the ICC criteria for ME/CFS, and have been diagnosed by TWO leading, and world-class ME/CFS specialists as having ME, and as also having Lyme. I could lean just as strongly on EBV or HHV-6 as the most likely causes (Hello! B-Cell infection!), as any of seven Tick-borne diseases. I am straddled between two controversial camps, and each holds an odd disdain for the other, and I love and am loyal to both.

It is very different in the US than many parts of the world. Lyme is a big deal here, as are the polemics surrounding it. Its history is full of deceit and posturing. Science has been far too often trumped by legacy concerns and patents and fear of litigation - and now unilateral legislative efforts. In the US, Lyme is the Perfect Storm.

I do not believe that is the case in the UK, and in many other countries. The reason is pretty straightforward - the United States is ground zero for the Lyme Wars.

We also are the starting place for CFS, and all that massive deceit and collusion that emanated from that appalling label. Yes, the world can thank us for that, too.

So when you take Lyme and force it into a tight space with ME/CFS, friction between two great masses of conflict can occur. US researchers know this and cannot escape it. This is not a criticism of them; it is simply an observation that is difficult to adequately counter. Moreover, neither camp wants anything to do with the other, except to point fingers. Yet they are inextricably linked, like the moon to the earth. The fact that ME/CFS research cannot escape unscathed the nasty gravitation of Lyme simply IS. It is what it is, and I can almost guarantee that researchers in each camp are painfully aware of this at times.

Here, at least in the Lyme community, sides are taken, and it is near impossible not to take one. The Old Guard Lyme cabal want every one to think ME/CFS and Fibro have nothing to do with Lyme. There is pressure out there for researchers to conform to this. It is a fact of life. But I think you all can appreciate this dilemma confronting researchers: It must be very difficult to buck the currents and adopt either one of these orphan diseases - can you imagine having to deal with the fallout from both?

So when you examine a given researcher's efforts, and if they involve or should involve Lyme, it is challenging not to acknowledge a respective side that researcher appears to have embraced. If his/her research reflects such an association, and you think, influence, how can you not volunteer that? Again, it is pervasive in the US, and to pretend otherwise borders on the disingenuous.

To some outside of the US, this may seem like an ad hominem attack. Here, it is status quo, as a given allegience in the Lyme Wars might explain, at least in part, methodology, study inferences and conclusions and more.

I give equal weight to TBDs as agents in ME/CFS - as equal (I hope) as all those others @Bob noted. But when they are not given equal weight in research projects, I grow concerned because I know what influences might be at play. They need to be included because Science too often has taken a back seat to politics here in the US, both in Lyme and in ME/CFS. Lyme has been misrepresented in the ME/CFS world, and I promise you that ME/CFS has been misrepresented in the Lyme world.

I think we need to negotiate that ignorance and misinformation to mitigate it, and the ones we do the negotiating with may just be the researchers.
 
Last edited:

Tuha

Senior Member
Messages
638
This study is maybe not perfect for everyone and everyone has his own preferable hypothesis but I think we should show our support to Lipkin by donating to his research. He needs to feel that the patients are behind his research.
Remember that he is involved in many ME research projects. Also we dont know all his plans and also he has limited budget so he cannot test everything immediately. So if you are able consider to donate to his research. I think the patient community is able to fund it. Also often big donors arrive if they see that many small donors donate.

To have a top researcher like lipkin is exactly what we needed many years ago - to lose him would be a disaster
 

viggster

Senior Member
Messages
464
Folks slagging on Lipkin and this study are seriously misguided. This is a deep, sophisticated look at possible triggers & the body's response to them. I'm guessing some of the negativity stems from Lipkin's role in debunking XMRV - perhaps some see him as a tool of the system that has let all of us down. But that's a naive view - XMRV was so clearly a lab contaminant...identical sequences from many different patients is a result that can *only* come from a contaminant. Inside people, retroviruses quickly change - the main reason we don't have an AIDS vaccine yet. Some wealthy donors have helped bankroll Lipkin's pilot ME/cfs work...I hope they're still paying attention because their plan here could be a big step forward.
 
Messages
78
Location
Melbourne, Australia
:):):):):)
CII’S ME/CFS MONSTER STUDY: MICROBES, IMMUNITY & COMPLEX DATA

I'd just like to briefly say that the person who wrote the blog in the opening post (it wasn't me) has been working tirelessly and thanklessly behind the scenes, through illness, over a long period of time, to keep the Lipkin fundraising project in the public's consciousness. They get no reward other than the knowledge that they are helping Lipkin's team, and the satisfaction of seeing your donations come in, and seeing the research start to take shape. This particular blog took an enormous amount of work and effort. So if anyone would like to shout out a big >>>thanks<<< [:hug::star::trophy:] to the person who wrote the blog (who may or may not want to identify themselves - I haven't asked them yet) then I'm certain it would be really appreciated.

Yes! Thank you so much for posting this, @Bob. I know the person who wrote this too, and know how much of the meagre energy that they have that they give to MDP because of a passion for the work that CII is doing. This particular blog post was agonised over, and took a long time to write, to get all of the details right. So much effort went in to it. I'm so impressed with, and appreciative of, the work they do, work that we will all benefit from.

Thank you! :):thumbsup:
 

viggster

Senior Member
Messages
464
No matter what test researchers decide to use, it is impossible for them to detect every possible pathogen. Analysis of the microbiome as a whole is the sort of broad sweep that we need!
Their virus-detection tech can find any known virus (and related unknown viruses) but I don't know as much about the bacterial discovery they're doing.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
We are not a few years out from using this in large trials, it is well and truly in effect now. This is the technology which has made microbiome studies possible, they could not be done using the original Sanger based sequencing. NGT is now so mainstream that several enterprises offer inexpensive testing of one's personal microbiome (I know you have used these from another thread).

I suspect that some of the scepticism on this thread stems from a lack of understanding of the power of microbiomics, metabolomics and proteomics.

That's great. I wasn't sure if it viable in other substances or tissues beyond stool yet. I've read a bit about it, but I only understand about 20% :D
 
Messages
15,786
I am surprised everyone isn't on board with exploring a possible role of TBD's in ME/CFS.
I don't think anyone would object to them being explored in depth. But that has absolutely nothing to do with the present study.

I have not dismissed other projects - I have merely pointed out they may not be as robust as they should be, and therefore their utility may be measured or suspect.
Failing to include every conceivable potential cause of ME/CFS is not a lack of robustness. No study ever has or ever will look at every potential factor for any diseases. This does not mean that such studies are not robust. It means that they are being conducted in the real world, and have a limited scope.

I have made these observations ion the hopes of correcting weaknesses, not tearing down the structure.
It is completely irrational to label the lack of an unlimited scope as a weakness in a study. It is not. It's sanity.

You want an ME tick study, and that's fine. But you don't get to criticize every other ME study for not explicitly including it.
 

duncan

Senior Member
Messages
2,240
@Valentijn , please do not misrepresent me.

First, yes, I know TBD's may not have anything to do with this study. That is my point. Not quite sure what yours is.

Second, I do not expect every pathogen to be included in a given study. However, as this is a US ME study, and given the surging prevalence of TBD's in this country, and given many Lyme patients progress to a diagnosis of ME/CFS, I DO expect a comprehensive ME/CFS study to also look the the role of TBDs. This is not unreasonable. If that is not being done, imo, would be cause for concern as to the scope and objectives of the effort.

Excluding what may be a key causative agent of ME/CFS from an ME/CFS study is...I don't know...You don't like the idea that it is a study weakness. How about it potentially renders the effort overtly and inexplicably incomplete?

Speaking of misrepresenting me, I do not want an ME tick study - anymore than I want an ME teenage kissing study to explore the role of EBV. I want an ME/CFS study that includes (along with HHV-6&7, EBV, enteroviruses, etc) one of the leading and disabling pathogens in the United States - you know, because this is a US study, and Lipkin is a US researcher. He should know what's going on here, even if many Europeans do not. And yes, I know you've lived in the US.

Finally, I am not criticizing every other research study. I am criticizing this one - and only one aspect of it, possibly, at that, but to me and I think some others, an important aspect. Whether you like it or not, it appears to have a gaping hole in it that you could steer a ship full of ME/CFS patients through.

Now, all this is moot if in fact Lipkin and company are looking at TBD's. I have not been able to determine that yet one way or the other.

If you need me to explain anything else for you relative to my position, please let me know and I will try to help, preferably before you misrepresent me again.
 
Last edited: