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

[Valentijn]

How about it potentially renders the effort overtly and inexplicably incomplete?

No study is ever as complete as the standard you seem to be setting. It's not like anyone (excluding psychobabblers) would ever conduct a study of 5, 50, or even 500 pathogens and definitively declare that all pathogens have consequently been ruled out.

They're studying what they're studying, and the results will be about that. If they aren't studying tick-borne diseases in this study, it's not as if tick-borne diseases will be magically ruled out as a possible factor.

 

[Bob]

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.

A highly significant issue with EBV, HHV-6, and cocksackie, etc, is that they are almost ubiquitous in the general population, so testing for these in a research study is of very limited value, if any. I suspect that these are opportunistic pathogens that increase in numbers in a weakened immune system rather than the cause of ME. It's just my personal musings, but I think that the blood test results for these pathogens may have misled us into believing that they have some role in causing the illness.

I'm not familiar with Lyme testing but if Lipkin were to test for Lyme, I assume he would use fairly standard tests, and if any individuals had a positive result then the participants would be excluded from the study and referred for Lyme treatment.

 

[A.B.]

Lipkin said he could solve the illness in 3-5 years, with appropriate funding. I wonder if he knows more about the "signal" he identified than we do.

If I Google "immune exhaustion", I get hits about HIV and how constant immune system stimulation leads to immune exhaustion. What's the source of the constant immune stimulation? Leaky gut? Some virus?

Immune exhaustion seems to be mentioned only with reference to viruses. And coincidentally, in this study here he is aggressively searching for viruses without even considering bacteria.

 

[Bob]

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.

It's not a gaping hole, Duncan. It's a specific pet-interest of yours (a perfectly reasonable interest) that doesn't happen to be included in this exceptional study. If you want to test a group of ME patients for Lyme disease, then that would be a relatively easy and cheap study to conduct.

 

[duncan]

They're studying what they're studying, and the results will be about that. .

Yep. That pretty much sums it up. If your ME/CFS candidate is included, you're golden, if not, oh well. Unfortunately, this logic potentially burns many US ME/CFS patients.

It's not like anyone (excluding psychobabblers) would ever conduct a study of 5, 50, or even 500 pathogens and definitively declare that all pathogens have consequently been ruled out

We all know good ME/CFS studies do not grow on trees, as is evidenced by funding challenges associated with this one. Who knows when another good one will manifest? We have Stanford and...what? The NIH study? Lyme is a gateway disease to ME/CFS in the US. Its relevance is indisputable there. There is where it needs to be confronted as a possible agent leading to ME/CFS.

If they aren't studying tick-borne diseases in this study, it's not as if tick-borne diseases will be magically ruled out as a possible factor

Are you really confident about that prediction? Have you checked out the Lyme scene in the US recently? It's carnage. It may not be ruled out, but if it is not ruled in, the effect on the medical community could just as well be the same.

 

[duncan]

It's not a gaping hole, Duncan. It's a specific pet-interest of yours (a perfectly reasonable interest) that doesn't happen to be included in this exceptional study. If you want to test a group of ME patients for Lyme disease, then that would be a relatively easy and cheap study to conduct.

Maybe not in the UK as far as you know, @Bob, but in the US, yeah, it's pretty much a glaring omission.

 

[duncan]

I'm not familiar with Lyme testing but if Lipkin were to test for Lyme, I assume he would use fairly standard tests, and if any individuals had a positive result then the participants would be excluded from the study and referred for Lyme treatment.

No. That does not reflect the way it would have to work.

I'd be happy with data which supports an association. For that, all that is necessary is evidence of exposure, and high enough numbers in the cohort.

But at least look for TBD footprints. Make the attempt in a country where the three B's are almost leaping out of the grass at its citizens. You think these people get diagnosed with PTLDS? Usually they get put into the CFS box. Maybe they belong there, maybe they don't - but don't ignore what is such a common occurrence in the US. Embrace it, qualify it, and explain it. If the Science says Lyme TBD's are also triggering ME/CFS, so be it. If they prove they are not, so be it. But do the research. This is an ME/CFS effort, and we are looking at many many people being diagnosed with ME/CFS after being diagnosed with Lyme in the US. It is relevant and appropriate that Lipkin look at the role of TBDs now.

 

[Bob]

Yep. That pretty much sums it up. If your ME/CFS candidate is included, you're golden, if not, oh well. Unfortunately, this logic potentially burns many US ME/CFS patients.

I really don't think you should feel discriminated against. This study doesn't exclude you or your interests simply because it isn't a Lyme study. The study is looking at the biological underpinnings of our disease/s whatever the initial trigger. Seeking answers from a single pathogen has never got us anywhere over many years, and the sophistication of this study goes far-far beyond seeking answers from a single pathogen. Its scope takes us a huge leap beyond the idea of a single pathogen infection causing disease.

Maybe not in the UK as far as you know, @Bob, but in the US, yeah, it's pretty much a glaring omission.

Lyme is a personal interest on your part and some other ME patients. If you want to organise, and fundraise for, a study to test ME/CFS patients for tick-born pathogens, or for post-Lyme syndrome, then I'll support you. Lipkin might even be keen to carry out such a study, when you've raised the funds, as it would combine two fields that he has a particular interest in. When you've set up your crowd fund for your Lyme study please let us know.

But I'm a million times more interested in Lipkin's study than I would be in your very narrow study. The complexity, rigour, breadth, creativity, curiosity, openness, and sheer boldness of Lipkin's study is almost breath taking. The study has a huge potential to open up new avenues in knowledge and understanding, and it looks to the future using exciting new technologies. I believe that anyone who isn't overwhelmed by this study really isn't looking at it with open eyes.

Duncan, but for you to say that the study has a gaping hole simply because you want to see a Lyme test, is insulting for the rest of us.

Are you even aware of the amount of work and effort that patients have put into supporting this study, and in encouraging Lipkin to get involved in ME/CFS?

 

[duncan]

Duncan, but for you to say that the study has a gaping hole simply because you want to see a Lyme test, is insulting for the rest of us.

I am saying it's a gaping whole because in the United States where Lyme is rampant and ends up resulting in maybe the single largest ME/CFS pool on a per country basis - rightly or wrongly - it IS a gaping hole.

How on Earth am I insulting others in the ME/CFS community? Am I suggesting omitting a pathogen or bumping a pathogen for the sake of a tick-borne disease? Of course not.

I agree that there are many good elements in the Lipkin study. But as a US effort, that is comprised of US patients, to exclude a prominent pathogen that causes many, many US citizens to be diagnosed with ME/CFS, seems illogical.

You are making this about something it isn't, and that is puzzling. I am not saying deep-six the Lipkin effort. I am saying it is arguably incomplete if it fails to look at a premier generator of US ME/CFS diagnoses, in addition to all the other pathogens that so rightly deserve scrutiny. How can anyone reasonably dispute this? Because you don't think TBD's are that relevant in your nation? They are in the US, and I give Lipkin enough credit to appreciate that, and all that goes with it.

 

[Bob]

How on Earth am I insulting others in the ME/CFS community?

Perhaps you aren't aware that your tone in this thread is overwhelmingly negative and your attitude is coming across as destructive in nature. That might not be your intention but that's how it's coming across to me personally. I know that you are a reasonable person, and you are perfectly entitled to express your views. But the context of your comments in this thread makes a difference. The overwhelming negativity that you have expressed in this thread seems vastly disproportional to the study we are discussing. The reason that I consider your posts to be unreasonable, in this context, is because you are belittling an entire study in order to promote your own narrow interest. This is unjustified and unreasonable. I spent a whole year organising the crowd fund for this study, with a team of excellent people, so I'm taking it particularly personally. (Edit: it was very much a team effort.) If you feel so strongly about testing ME/CFS patients for Lyme, it would be reasonable to start a new thread about it, and to set up your own crowd fund project, rather than hijack this thread and to belittle this crowdfund for your own purposes. We set up a crowd fund, and Lipkin has planned a huge study, to serve the whole ME community; If you don't like this crowd fund or the study, then that's fine but please leave it to the rest of us who do. You've made your point; you say the study is incomplete; OK, we've got the message; now please move on. The rest of us have a right to work together positively on this study and to celebrate it. I will celebrate your crowdfund and study when you've set it up.

 

[geraldt52]

... I give Lipkin enough credit to appreciate that, and all that goes with it.

I don't think you are giving Lipkin enough credit...I think that might even be the point. We can't know, and Lipkin can't be expected to enumerate at every turn, every possible angle that he is using as he proceeds with his work. At some point one has to consider that he might be smarter than us, and is proceeding as logically and efficiently as the history of his body of work would suggest. Maybe he feels lyme is being adequately addressed by another study, maybe he has seen evidence that caused him to conclude that lyme doesn't match the evidence to date. I'd rather him be spending his very limited time thinking and studying instead of writing reports and updates to try to alleviate every skepticism. Skepticism of a researcher's work can be good, but it can also become insulting.

 

[Bob]

@duncan, a new blog by Cort, especially for you:

Post Lyme Disease and Chronic Fatigue Syndrome (ME/CFS) – Are They The Same?
Cort Johnson
August 6, 2016
http://simmaronresearch.com/2016/08...nic-fatigue-syndrome-mecfs-are-they-the-same/

(Suggest you start a new thread to discuss it.)

 

[duncan]

I have repeatedly said it is a worthy project, @Bob.

I am sorry you resent candid criticism of that study. As you know, I am an avid supporter of the Stanford study, and I still offered constructive criticism of that. Shouldn't Science be empowered by such criticism? At the same time, cannot such criticism act as a prism to see if factors other than Science may be at play? Having said that, I DO appreciate why you would take it personally.

Cort and many others cannot seem to disentangle Lyme and Lyme issues - such as the faux issue of Post Lyme Syndrome - from that of another major candidate causing ME/CFS.

Lyme is not ME/CFS. PTLDS is not ME/CFS.

Can Lyme lead to ME/CFS is the issue for some.

Despite our disagreement here, I will end as I certainly do not mean to disencourage contributions - even less do I wish to insult you personally. For any perceived slight, I apologize.

 

[Simon]

At the risk of dragging things back on topic, I just wanted to say why I think this is a great study, and why I've donated.

I waited nearly twenty years to see classy researchers come into mecfs from other fields, and they don't get much classier than Ian Lipkin: we should encourage him (same goes for Ron Davis). I wish the NIH would fund this study, but they didn't even give enough to cover sample collection, so for now it's down to patients to make this happen.

Good things about the study (in my view)

1. The samples/patients
It's big, with 125 Canadian criteria patients and 125 matched controls. Plus the team have gone to great lengths to recruit a representative sample, by teaming up with clinics from all over the US (using mecfs specialist clinics) and asking clinics to recruit a broad range of patients, not just particular types.

Then, they are making sure that each sample comes from a three-month window to account for natural seasonal variation in bacteria, viruses and fungi (eg flu epidemics in winter).

And they are collecting both gut and oropharynx microbiome samples at four time points over a year - a first. As well as blood at two time points

2. The breadth of techniques to go find out what's really going on
It's one thing to look for an association between microbiomes and disease, but more important is too look to see how the microbiome could be causing or contributing to the disease

to investigate the human microbiome as it relates to ME/CFS, to determine how bacteria, fungi, viruses – and the immune response to them – contribute to the disease.

That's why they are looking not just at the microbiome but also the blood proteome (all the proteins in the blood) and metabolome (all the metabolites), as well as immune markers, to try to tease out what's going on/going wrong. As they will have samples at four different points (two for blood), they can also correlate changes in the microbiome with changes elsewhere, which gives them a much better chance of finding causal relationship.

Plus, of course, they are making use of a whole load of leading-edge technologies: not just the proteomics and metabolomics but the sequencing of DNA(RNA) to identify the viruses, bacteria and fungi, and their own VirCapSeq-VERT virus detection system (hailed by Scientific American as one of the 'world-changing ideas' of 2015. I want these people on our case.

In short: great scientist(s), great study. I know it's not to everyone's taste but I hope many patients will consider donating.

 

[viggster]

I spent a whole year organising the crowd fund for this study, with a team of excellent people, so I'm taking it particularly personally.

Thank you & all the other anonymous patients who have been working with Columbia on fundraising and outreach. Very much appreciated!

 

[TigerLilea]

I am saying it's a gaping whole because in the United States where Lyme is rampant and ends up resulting in maybe the single largest ME/CFS pool on a per country basis - rightly or wrongly - it IS a gaping hole.

Duncan, according to the CDC, 96% of Lyme cases are reported in 14 states in the North Eastern United States. So I doubt very much that for most Americans that Lyme disease will be an issue as far as CFS/ME is concerned.

 

[duncan]

With all due respect to the CDC, their estimates of Lyme in the States are about as useful as their advice for management of ME/CFS.

It was only within the past couple of years that they admitted the roughly 30,000 cases per year that they put out as annual estimates for Lyme incidence was off by a factor of ten; that the actual incidence was in excess of 300,000 cases annually.

As for incidence per state: All one needs do is examine the logic for Lyme incidence in North Carolina. Mind boggling.

 

[Sushi]

At the risk of dragging things back on topic, I just wanted to say why I think this is a great study, and why I've donated.

Please take Simon's suggestion and keep this thread on topic. There are plenty of other threads to discuss the Lyme disease.

 

[paul80]

I donated to this and ron davis project but i was thinking... is it a good idea for us to partly fund lots of different studies that require massive amounts of money, what if none of them receive full funding? will the donations be wasted?

Would it not be better to put all our donations into fully funding one of them?

 

[Tuha]

I donated to this and ron davis project but i was thinking... is it a good idea for us to partly fund lots of different studies that require massive amounts of money, what if none of them receive full funding? will the donations be wasted?

Would it not be better to put all our donations into fully funding one of them?

I think that it´s important to show our support by donating money to Lipkin and Davis. Maybe even more to Lipkin because Davis is personally involved in this disease by his son. So I wouldn´t put all our money just on one researcher.

I think patients should be able to fund Lipkin and Davis. I dont know how it´s with Lipkin but Davis already got attention of some big donors so it should go faster. Now if I remember correctly I think Lipkin got also a million dollar donation the last year after his chilli challange. Often the big donors arrive after seeing many small donations. Also we should try to think how to do a better publicity about these studies. Davis got a lot of trafic on internet and I think it helped a lot.
We are a big community but there is still not too many patients who are donating. I know that for example for Davis fundraising campaign which got on the end some millions - there were only few hundred patients who donated.