Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

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Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he's asking the patient community for its support…


Dr W. Ian Lipkin has demonstrated a clear commitment to ME/CFS research. First came his study looking at Borna virus in the 1990′s, and then the landmark study that ruled out XMRV as a cause, and most recently we have heard about the huge pathogen and immune study – a vast collaboration with many key clinicians and researchers, including Dr Dan Peterson and Professor Jose Montoya.

That research had already found clear signs of immune activation in patients and, when I spoke to him, Lipkin was clearly excited about the very latest results to emerge from the study - I wish I could reveal more, but a paper has just been submitted and details are embargoed until publication.

Lipkin believes that immune activation may be responsible for driving the symptoms associated with ME/CFS. And that the immune activation and could itself be triggered by bugs, not in the blood, but found in the vast ecosystem of bacteria, viruses and fungi, that constitute the gut microbiome.

However, he doesn’t have the funds to pursue this research and so he’s appealing to the patient community for the one million dollars he needs to get the work done. The payoff? A better understanding of the illness and the possibility of new treatments.

Dr Lipkin on ME/CFS

Lipkin made a splash in the world of ME/CFS when he led the XMRV study that both disproved its role in the illness and also managed to unite the patient community. At the press conference for that study he said his first brush with CFS was a large study in the 1990s that demonstrated no connection between the Borna virus (one of many viruses he’s discovered) and CFS. But he stressed that their findings in the same study of B-cell activation in CFS patients was a clear sign that this was not a psychosomatic disorder. The findings in his new study have only confirmed his views:

“There is no question in my mind that this is a physical disorder. The fact that we haven‘t been smart enough or invested enough in it to sort that, doesn’t mean that this is anything else.”

The smoking gun

The immune activation he’s found could explain fatigue – it’s almost a universal symptom of infections like flu, and is actually a consequence of immune activation rather than caused by pathogens themselves.

The same could be true of other ME/CFS symptoms including disturbed sleep and brain dysfunction which again are typical symptoms of immune activation.

Lipkin is eager to build on this work. He believes the immune activation is a smoking gun and now wants to track down who or what pulled the trigger.

“I am more keen than ever … to see if we can identify the trigger”
- all quotes are from Dr Lipkin

There are several credible places to look for the culprits triggering the activation. One is white blood cells: some viruses could be hiding out in cells and so wouldn’t have been found by the initial search in the blood plasma – and Lipkin already has a white blood cell study lined up.

However, his attention is particularly focused on the microbiome, the large ecosystem of bugs that live on our skin and within our ‘inner tube‘ that leads from mouth to bottom.

There are at least one trillion bugs in the gut microbiome – and there are more immune cells in the gut than anywhere else: it’s a great place to hunt for bugs that might be triggering immune activation.

Microbiome problems are increasingly being linked to serious illness. The most striking example is the superbug Clostridium Difficile (C. diff), which has become a major problem in hospitals. C. diff lives in most of our guts harmlessly at low levels, but it can take over (particularly if ‘good’ bacteria are killed off) – causing diarrhoea and even death. Happily, doctors have discovered that severe C. diff cases can be treated relatively easily by restoring the microbiome; unhappily, this involves a faecal transplant.

The potential to treat disease by restoring the microbiome is one reason this area of research is attracting so much attention. This recent article explains more about the microbiome, how it might link to ME/CFS and looks at other research being performed.

“If the answer were simple, it would be done by now”

Irritable Bowel Disease is another example – here inflammation is believed to result from changes in the microbiome. Lipkin’s team have just been studying women in sub-saharan Africa and found that certain bacteria in the vaginal microbiome increase the risk of HIV infection. Lipkin thinks the gut microbiome could be playing a similarly important role in ME/CFS:

“By analogy with animals and human situations, we see that different populations of fungi, bacteria and viruses in the colon can have an impact on the immune system and give rise to cytokine activation which could cause the symptom complexes we see in ME/CFS”

in other words:

changes in microbiome > immune activation > symptoms of ME/CFS

I asked Lipkin if this meant particular bugs causing inflammation and he said that is certainly possible. But, he added, another route to illness is that an overgrowth of ‘’bad’’ bacteria could form a film, preventing ‘’good’’ bacteria from interacting positively with the immune system (see this article for more) – an indirect way of causing immune dysfunction.

The exact role that microorganisms in the gut play in health and in the development of disease is complex and still being determined. There are many plausible hypotheses, says Lipkin, and only research can show which (if any) are right.

If the microbiome is the cause, is it treatable?

If the microbiome is the cause (or a cause, or even a contributor) of ME/CFS, it might be relatively easy to treat, perhaps with probiotics, restriction diets, drugs, or even faecal transplants.

Cause or effect?
Of course, the first step in this process is demonstrating a strong link between the microbiome and ME/CFS. If one is found then the next step is to look for evidence it plays a causal role: i.e. do microbiome changes cause immune dysfunction, as opposed to being a consequence of or simply associated with immune dysfunction?

Lipkin says one option is to use an animal model: the idea would be to introduce the microbes suspected of triggering ME/CFS into the gut microbiome of animals, to see if this leads to similar symptoms and immune activation as seen in humans. Something that has been used to study Metabolic syndrome.

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. There will be endophenotypes beyond those in the gut, such as genetics endophenotypes, and it is highly unlikely that the microbiome would account for all forms of ME/CFS – but this approach could tackle a very substantial proportion of cases.

The study breakdown

Lipkin’s proposed study will look at all three trees of life: bacteria, fungi and viruses in the microbiome of 100 patients and 100 controls recruited for a previous NIH study. It will cost a cool million dollars:

1. Sample collection: $150,000
Collection of faecal (and blood) samples from patients, including checking the initial ME/CFS diagnosis remains valid and shipping chilled samples back to the labs at Columbia.

2. Faecal Microbiome sequencing and Analysis: $317,000
- Separate, purify and perform high-throughput sequencing of viruses, fungi and bacteria
- Complete sequencing of viruses; partial sequencing to identify bacteria (using 16S rRNA) and fungi (using ITS, the ‘fungal barcode’)
- Generate microbiome profile for each patient, one each for bacteria, fungi and viruses​

Comparison of patient and control microbiomes: bacteria, fungi and viruses that differ in prevalence between CFS subjects and controls will be considered candidates for contributing to either health or disease.

3. Development of highly-accurate real-time PCR assays to confirm findings and levels of microbes: $328,000
This will quantify how much there is of each bug of interest (the main high throughput sequencing approach gives an indication of quantity but is less accurate than real-time PCR).

It’s possible, that the most important thing isn’t the presence or absence of a microbe, but the amount of it – as with C.Difficile. These assays will also be used to check that key microbes haven’t been missed in any patient or controls who were negative for them in initial sequencing, as PCR assays are far more sensitive than high-throughput sequencing.

4. Cytokine analysis: $86,000
The study will again measure cytokines in blood and undertake data analysis to see if there is an association between cytokine profiles and immune profiles. It would then provide strong evidence of an important relationship between the microbiome and immune dysfunction – the hypothesis driving this study. Sophisticated analysis will be required on the vast amount of data generated by microbiome and cytokine profiling; happily, Lipkin’s Center for Infection and Immunity have a team of biostatisticians dedicated to such work.

5. Development of antibody tests for important bugs identified by the microbiome work: $249,000
It could be a few individual species or particular groups of microbes, but antibody tests will be developed by Lipkin’s lab to allow much easier testing to see if the same problems in this sample are found in the wider patient population.

As well as guiding treatments, the PCR assays and antibody tests developed here could both provide a diagnostic test for ME/CFS.

Lipkin’s record



Featured in the New York Times, described by Discovery magazine as the world’s foremost virus hunter, and consultant to a successful Hollywood movie, Dr W. Ian Lipkin has a higher profile than most researchers. But this profile is built on a stellar scientific reputation.

He’s discovered more viruses than anyone else. He’s part of the World Health Organization (WHO) diagnostic discovery and surveillance programme designed to catch pandemics as they arise. And the Chinese recruited him play a leading role in their fight against SARS.

Amongst other things he is John Snow Professor of Epidemiology and Director, Center for Infection and Immunity at Columbia University. Full biography.

He is passionate about communicating science to a wider audience but is insistent the science is right.

Lipkin only agreed to consult on Contagion, a movie about the terrifying potential of epidemics, because of director Steven Soderbergh’s desire to make a film that was true to the science – having turned down offers to advise on several movies with somewhat wilder plots.

When Lipkin was shown a near-final version of the film he threw up his hands at the scene near the climax where a scientist injects herself in the leg with the new vaccine, through her tights – a poor practice that could easily introduce an infection.

This might seem a small detail given everything else the film had right, but Lipkin was adamant it had to go: cue a $100,000 reshoot.

This near-obsession with getting things right is a Lipkin hallmark. The very first point he made to me about this study, before discussing any details, was the need for real, robust findings – because there have been too many false dawns in this field.

At the end of the interview he emphasised the need of crisp, rigorous data. Whatever the findings from this new study – positive or even negative, we should be able to rely on them.​


Scientist in a hurry for answers

Dr Lipkin is a scientist in a hurry for answers. That’s true both in his work trying to stop a new pandemic in its tracks, and in his work on ME/CFS.

He wants to follow up as many promising leads as possible, as soon as possible – rather than waiting for the results of a single study before planning a new one if the first draws a blank.

That’s why he set up a huge study looking for specific pathogens such as EBV, but also used deep sequencing alongside that to search for any other pathogen, known or unknown.

He’s looked in blood plasma for pathogens but is also about to look for them in white blood cells too.

He set the study up to look at immune markers including cytokines as well as for pathogens – and the significant findings of immune activation show the value of backing more than one horse.

On top of all this, Lipkin has invested in a gene expression study using samples from the same study, with results expected shortly that could throw up new leads in epigenetics and genomics.

Dr Lipkin has committed a huge amount of his 60-strong institution’s time to pursuing numerous studies, all aiming to uncover what’s really going on in ME/CFS

Too much, too soon?
However, it may be that the NIH is not in such a hurry as it has declined to fund the study at this time.

But then the NIH has only ever committed relatively small amounts of funding to ME/CFS – around $5 million a year, compared with around $115 annually for MS and $284m for Asthma.

Its funding record firmly suggests the NIH’s priorities lie elsewhere.

So, as Lipkin says, “we are stuck”. It’s possible that the NIH will fund this work in the future, and possible they won’t.

The question is, do we want to wait?

“We are already well behind where we should be”

Dr Lipkin has now appealed to patients to fund his latest study that aims to hunt in the gut microbiome for the ‘trigger’ of the immune activation his study found in ME/CFS. And he needs a cool million dollars to pay for the study outlined above.

Actually, the study comes to a bit over a million dollars (see above) - $1.13 million, to which another $140,000 of costs for maintaining the high-tech equipment used and general lab costs making $1.27 million in total. However, the initial target has been set at $1 million.

In his CDC telecast to patients last September, Lipkin explained the microbiome project was being held up by this lack of funds, and urged patients to contact their representatives in Congress.

He also appealed directly to patients who could afford to do so, to invest in research:

“it may not be appropriate to pass the hat, but that is exactly what I am doing”

How long will it take for the results? “Within a year”, said Lipkin

The man is in a hurry, and the study is all set up and ready to go – once funding is available.

“As long as I can do it, I will do it. I‘m eager to start, I‘m optimistic it will bear fruit, it‘s not just an academic exercise, it could lead to treatment”
When I mentioned to Dr Mady Hornig, the Principal Investigator on this study, that I was interviewing Dr Lipkin she added: “Terrific – we need the resources to get this done”.

Crowdsourcing: Together we can make it happen

I do think we are very lucky to have Dr Lipkin on our case and believe that we should back his new study, which will be performed at his Center for Infection and Immunity, Columbia University – the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis.

“Why don‘t we crowdsource this, we are all losing valuable time in our lives?”
Vanessa Li, Phoenix Rising member and fundraiser

ME/CFS patient, Vanessa Li, responded to Lipkin’’s call last year, by contacting his office and suggesting crowdsourcing in a similar way to MEandYou, which through the efforts of Dr Maria Gjerpe had raised an astonishing $0.5 million towards the Norwegian Rituximab trial in 90 days.

Lipkin was a physician in San Francisco at the start of the AIDS epidemic and commented how, when the government was reluctant to pay, much of the important early work was funded by private donors so he’s very open to this possibility. He continued to seek funds for his work from institutions, but as that hasn’t worked he is now asking patients if they can make the study happen - and has given this interview to launch the million dollar appeal.

Donate to the the ME/CFS microbiome study
I have just donated and hope many other patients will do too. Just click on the button below and follow the instructions. The option is to donate to CFS research, but in the next page you can add ‘special instructions’ such as ‘for the microbiome study’.

We need only for every US patient to donate $1. Or one in ten patients to donate $10.


If people want to do more to help – and this is a big target – they can help to promote this crowdsourcing initiative at this new group, or email Vanessa Li. I will give her the last word:

The CDC says there are more than one million ME/CFS patients today in the US alone. There is no reason why, if every patient were made aware of Dr. Lipkin’s appeal and donated $1, that we should fail to raise the $1 million. An esteemed researcher doing high-caliber work is taking a serious interest in finding out the cause of our desperately under-researched illness. Now is the time to act!​

Simon McGrath tweets on ME/CFS research:


Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.


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Comments

I haven't read most of this thread, but haven't there already been studies on gut bacterial profiles of CFS patients? it seems that demeirleir's team, who has already tested actual gut tissue, found HERV proteins and is now looking into why HERV proteins are expressed, is way ahead of lipkin.
 
I haven't read most of this thread, but haven't there already been studies on gut bacterial profiles of CFS patients? it seems that demeirleir's team, who has already tested actual gut tissue, found HERV proteins and is now looking into why HERV proteins are expressed, is way ahead of lipkin.
My thoughts exactly.

KDM has figured this out long before Lipkins idea for this study. Plus there have been countless other studies which have been conducted on the microbiome and its role in human disease.

But I guess it's still great that we are getting closer to finding a concrete cause and subsequent treatment.

Sometimes I wonder if it will hold much value after some, such as myself, have already lost decades of life.
 
it seems that demeirleir's team, who has already tested actual gut tissue, found HERV proteins and is now looking into why HERV proteins are expressed, is way ahead of lipkin.
KDM has figured this out long before Lipkins idea for this study.
I can certainly understand if there are members who feel this way.

However when I was asking around for opinions (which occurred before the article was published), a De Meirleir supporter pointed out to me the fact that De Meirleir did not make an appeal to the public specifically and neither does he have a study "ready to fund", while Dr Lipkin did and does.

I would be very happy to donate to any campaign that could be drawn up to support a De Meirleir study into HERVs, if he has one :)
 
@vli

The only missing link in the CFS bubble is the greed and pride of each and every CFS "specialist" which has resulted in extremely limited collaborations and subsequently extremely limited results.

It is 2014 and the CFS pandemic has not been solved yet. It will be 2020 and I bet it would be the same old story.

People like us on PR being our own investigators.

Thumbs up to Lipkin saying he is in a hurry to want to solve an overdue mystery. Even if KDM has already provided the blueprint years ago.
 
@Jon_Tradicionali

I agree the funding situation regarding ME is far from ideal to say the very very least. However, I think the whole reason I contacted Lipkin in the first place is that I would feel worse than I did if I did nothing. Now, if De Meirleir draws up a study and appeals to us to fund it I think posts like yours, and Daffodil's, are proof that he would have people backing him and organising crowdfunding for him almost immediately... neither Lipkin nor anyone here is preventing that from happening, and like I said I would be more than happy to give to a crowdfunding campaign for Prof. De Meirleir.
 
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Is there any reason that the work of both Lipkin AND De Meirleir cannot be supported by the patient community? :rolleyes:

As to donating to Lipkin's study, I will chip in a $100 AUD (and pretty sure I can get one two family and friends to donate), as soon as I know what happens to the money if we don't reach the target amount (or enough of it to get the study underway while we look for more funds).

Well done, Simon, for scoring the interview, and thanks to Dr Lipkin for giving you the time.
 
This study could be a very, very good thing for us. I also, and I believe Dr. Lipkin does to that the science and data from this study could reach way past ME/CFS patients well into other diseases with unknown cause. As well it could lead to better and more efficient treatments for many known diseases that currently have treatments available.

This is what I wish the NIH and CDC could envision and do what it takes to get this study completely funded now!!!!

I believe it is time to write my senator another letter! In the mean time I think I might have a yard sale to see how much I can come up with to make my contribution. If we have to build this road one brick at a time, then that's what we have to do. We should be use to it as we have done before in some form or fashion!
 
Just wanted to add that the $2935 figure is definitely NOT accurate (it has to be more than that amount) because Columbia counts 14 gifts and Simon counted 14 declared donors on this thread--and I know for a fact there exists at least a handful of folk who gave but who did not declare it! This is where a crowdfunding thermometer would be most helpful--available if we put a crowdfunding campaign together :)
For the number count, I donated a week ago.
 
I'm really excited about all the donations that folks are making. :thumbsup:
I just wanted to briefly say that if anyone can't donate, then they shouldn't feel at all guilty about it.
We all do what we can, when we can.
Only donate what you can afford.
And no one should feel excluded from this thread if they can't make a donation.
Just wanted to say that in case some people are feeling bad about not having any spare cash. (I expect that most of us have cash problems.)
:hug:
 
I haven't read most of this thread, but haven't there already been studies on gut bacterial profiles of CFS patients? it seems that demeirleir's team, who has already tested actual gut tissue, found HERV proteins and is now looking into why HERV proteins are expressed, is way ahead of lipkin.
My thoughts exactly.

KDM has figured this out long before Lipkins idea for this study. Plus there have been countless other studies which have been conducted on the microbiome and its role in human disease.

But I guess it's still great that we are getting closer to finding a concrete cause and subsequent treatment.

Sometimes I wonder if it will hold much value after some, such as myself, have already lost decades of life.
Morning :)

The article at the top of this thread, links to Simon's initial article about the Microbiome in several places, where he talks about previous and current research, including the ongoing study from Invest in ME in the UK:

Microbiota and ME/CFS
Gastrointestinal symptoms are common in ME/CFS and could be linked to microbiota problems, and even chronic inflammation. Research on the microbiota is just beginning to appear in the ME/CFS literature:

  • Professor Kenny De Meirlier’s small 2013 study on the microbiota of patients from Norway and Belgium had mixed results with differences seen between Norwegian patients but not between Belgian patients and controls.
  • A recent paper details 60 CFS cases treated (in the 1990s) with colonic ‘bacteriotherapy’ and reported a 58% rate for “resolution of CFS symptoms”, though it wasn’t clear how the study measured outcomes.
  • Pilot results from a CAA-funded microbiome study by Dr Shukla indicated that the microbiome of CFS patients responds differently to exercise than healthy controls. Data from the full study is now being analysed.
Two important new microbiome studies underway
Invest in ME have raised £100,000 (wow) for a microbiome study aiming to establish ‘whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME’. The study, run by the impressive Professors Tom Wileman at the University of East Anglia and Simon Carding at Norwich, began last October as a three-year studentship and initial results could emerge in 2015. They will be looking at the microbiota of ME patients including both bacteria and viruses, testing for leaky gut and using metabolomics to look at the metabolism of the whole microbiota.
Professor Ian Lipkin is focused on the microbiota for the same reason, particularly because his latest study found evidence of abnormal immune response in ME/CFS patients – could the microbiota be the cause? ...
I think the main point for me about past research, has been its relative size and competence in comparison to that proposed from Lipkin and his team. I also think that this area is worth investigating further with this proposed study from Lipkin because, at least in part, our forums that talk about the Gut and Treatments for gut issues, as well as diet etc. are one of the most active places on the entire site. It is clearly an area of importance to a great many people.

Lipkin, if we can raise the money, will be looking at 100 patients and 100 controls in a way that has NEVER before been done - there is a reason it will cost so much - and a reason why perhaps previous studies have really only touched the surface.

Also, remember, that included in this study, Lipkin and his team will be seeking to confirm their initial work relating to cytokines and immune activation - work that you will hear more about and I hope also be excited by, when the submitted paper is published - hopefully very soon - perhaps even next month.

When Lipkin looks at the microbiome it will be with more tenacity and scope in the search for pathogens and patterns, than anything that has gone before. It could help confirm De Meileir's treatment practices, and any others we hear about involving anti-biotics and pro-biotics, and the presence of specific bacteria etc. but in any event it will shed much needed light on this entire ecosystem and it's potential role in ME.

And once he gets the money, Lipkin has said he estimates it taking only a year to complete! :)

I have a great deal of confidence in the competence of Lipkin and the expertise he and Mady Hornig have put together at Columbia. This is great news for the ME community :)
 
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I'm really excited about all the donations that folks are making. :thumbsup:
I just wanted to briefly say that if anyone can't donate, then they shouldn't feel at all guilty about it.
We all do what we can, when we can.
Only donate what you can afford.
And no one should feel excluded from this thread if they can't make a donation.
Just wanted to say that in case some people are feeling bad about not having any spare cash. (I expect that most of us have cash problems.)
:hug:
I agree Bob. As I said earlier in the thread, this is the first study I have not only felt I really wanted to invest in, but it's the first time really I have been able to invest. And I do regard all donations as investments. But that said:

There is no minimum donation amount to Columbia and I don't believe there should be any minimum when the main campaign comes on stream either, other than $1.

$1 from 1million people. $10 from 100,000 people. $100 from 10,000 people. $1,000 from 1,000 people. $10,000 from 100 people.
We can all I think do something, even if it is alerting others to the Appeal and sharing the article on Facebook or re-tweeting it (whatever that means!) or passing it among our Support Groups locally. And if we cannot afford to make a donation, then perhaps we know someone who will.

If 1 million patients can't raise $1 million, then it wont take many outside of the American patient community to lend a hand and achieve the goal.

Good luck to everyone :thumbsup:
 
This is excellent news, thanks to all involved! The lack of government initiative and funding is the reason we patients launched the "Let's do it for ME!" campaign in July 2011 in support of the work of Invest in ME charity and to raise funds for their strategy for translational biomedical ME research. The first £100k raised has fully funded the foundation research project on the gut microbiome in ME at top UK University of East Anglia/Norwich Research Park, where the Institute of Food Research and The Genome Analysis Centre are also based. Here's the link to the latest update and FAQs about the UK gut microbiota: http://www.investinme.org/LDR newslet 1312-01.htm
Professor Simon Carding will be speaking about the UK gut microbiota research at the 2014 Invest in ME conference, and Dr. Mady Hornig will be speaking about pathogen discovery in ME. Here's the link to the agenda so far: http://www.investinme.eu/agenda.html
Here is some more info about the Invest in ME research (private email):

The gut microbiome research being started is not using animals. It aims to establish a cohort of patients who will participate in the research using faecal samples from the patient cohort which are then are analysed by genome sequencing.

The rituximab clinical trial administers the rituximab drug under trial conditions.

We have no funding toward animal research in mind or planned.
 
And once he gets the money, Lipkin has said he estimates it taking only a year to complete!
Does anyone else think that this sounds unusually fast and perhaps over-optimistic?
 
Does anyone else think that this sounds unusually fast and perhaps over-optimistic?
Back up a bit on this thread (last page I think) and see Lipkin's presentation to Oxford from December 2013. He talks about how things have become so much quicker and more accurate in terms of processing. I also think this helps explain the optimism in his estimated time-frame. Of course it will depend on when he can begin, and I dare say other factors such as ensuring his team are all available, and the speed with which samples can be collected accurately etc. etc. But Columbia has the technology and expertise. Though as you know MeSci, there are no guarantees, hence it is an estimate.
 
Hi Sasha,

At the time invest in Me said they wanted to set up the first research centre and clinic for pwme in the UK at East Anglia university which would offer research then translational (is that the right word?) treatments to patients. So there was a target so to speak which is why I think people got behind it. As it happens the money is going towards the gut study at the. University. Am not sure where they are at at getting a doctor to see patients. I think they are having problems with the university to agree to it. I think it took about 18 months to raise the money, but perhaps it was 2 years, sorry can't remember[/quote

Hi anniekim, yes, Invest in ME announced their proposal for the translational biomedical ME research centre at their conference in 2010 and published the proposal on their website. The idea was for patients examined by an ME consultant at the hospital to take part (according to patient selection criteria) in research at the University of East Anglia/Norwich Research Park (where The Genome Analysis Centre is based) and yes the idea is that the research will translate to treatment/s. They felt that a study of the gut microbiome was a good starting point for the research strategy and they devised this in 2010 with an estimated cost of £100k. Professor Simon Carding gave a talk on the gut at the May 2011 Invest in ME conference. I am the initiator of the patient campaign launched in July 2011 to show community support for the proposal and to raise the £100k for the gut study, called Let's do it for ME! It did take us almost two years to raise the funds but we were three people with ME starting from scratch from our homes/beds, and this was a new way to raise funds for ME research (we're heading towards the next target of £350k needed for the UK rituximab and related B cell study that Invest in ME is organising with the Clinical Trials Unit at University College London at a much faster rate - £283k raised since IiME announced this on 6th June 2013). The sticking point in East Anglia had been the hospital agreeing to an ME consultant, but Norfolk PCT agreed to fund a consultant for the patient examinations and said that clinic space would be made available, so good progress was being made by IiME until the NHS reforms caused the PCTs to be disbanded. As there is still no ME consultant in Norfolk, patients for the gut study will be selected from the patient database of Dr. Bansal from St Helier and Epsom Hospital Trust in Sutton. The latest update on the IiME/UEA UK gut microbiome study is here: http://www.investinme.org/LDR newslet 1312-01.htm
 
If 1 million patients can't raise $1 million, then it wont take many outside of the American patient community to lend a hand and achieve the goal.
Love this @Firestormm! :D :D
@MeSci I just wanted to say I'm aware of your fears; I'm not oblivious to them. However I'm not up to scratch on the science frankly and I'm in no position to argue with you about whether the microbiome of a human could be successfully replicated in an animal (or if that work would even show anything). However I'm not sure but I think I pleaded to Simon and Sasha to answer you, and I think they did. I hope their replies were at least satisfactory to you.
 
Does anyone else think that this sounds unusually fast and perhaps over-optimistic?
Not at all. Remember, Ian Lipkin is part of the World Health Organisation global pandemic surveillance and action system. Pandemics don't wait for scientists to spend a couple of years figuring out what's going on: fast is the way he works.

As far as the study goes, they already have a cohort lined up (from the original NIH/XMRV study) and a network of physicians ready to check the diagnosis of those patients, take and ship samples. His team have a lot of experience of the high-throughput sequencing approach required (Lipkin has done a lot to develop such tools himself), PCR assay development and antibody test development. He has over 60 people working for him at the Center for Infection and Immunity and can commit a lot of man/woman power to the project - and has done so already in the ME/CFS pathogen/immune study.

So 'within a year' is not unusually fast by Ian Lipkin's standards. Probably the hardest and slowest part is assembling the diagnosed cohort and network of physicians needed (which is what held up the original XMRV study) - but that has already been done. The project is planned, cued up and ready to go - once the cash is there.