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

February 10, 2014

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…

lipkin2

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 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

smokeNOreuse

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

Lipkin - CFIFeatured 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 million annually for MS and $284 million 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.

cii-donate

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:

 

Support Phoenix Rising

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.

donate

278 comments

{ 278 comments… read them below or add one }

vli February 12, 2014 at 5:46 am
Tuha

Center for Infection and Immunity posted Simon´s article on their facebook page. Maybe we can "like" it or post some comments to show our interest and support. Here you can find it:
https://www.facebook.com/CII.Columbia

Here it is (thanks Tuha): https://www.facebook.com/CII.Columbia/posts/10202414687581465?stream_ref=10
Canary film: https://www.facebook.com/canaryfilm/posts/361930483944691?stream_ref=10
And if anyone'd like to add me on FB just 'cause that's one more channel of communication and it's easier to share things, feel free to add me; please just tell me whether you're from PR or we have mutual friends or whatever so I can approve you faster: https://www.facebook.com/Rom5hope

MeSci February 12, 2014 at 5:50 am
vli

@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.

My educated guess as to whether a pathogenic human microbiome would produce useful information relevant to humans is no. It appears likely to me that even a healthy human microbiome would cause illness in a different species, just as a healthy monkey/rat/mouse/pig/dog/horse microbiome would probably cause illness in a human.

With Lipkin's reputation and apparent expertise and intelligence I am surprised that he would even seriously consider such research, unless it were to satisfy regulatory authorities prior to clinical trials.

Sasha February 12, 2014 at 6:04 am
MeSci

My educated guess as to whether a pathogenic human microbiome would produce useful information relevant to humans is no. It appears likely to me that even a healthy human microbiome would cause illness in a different species, just as a healthy monkey/rat/mouse/pig/dog/horse microbiome would probably cause illness in a human.

With Lipkin's reputation and apparent expertise and intelligence I am surprised that he would even seriously consider such research, unless it were to satisfy regulatory authorities prior to clinical trials.

But, like I said earlier, an animal model plays no part at all in the research that we're being asked to fund now. This $1 million project is to determine whether there's an association between particular pathogens in the gut and having ME. We need to know if that's the case, just as we needed to know whether XMRV was associated with having ME. That's what started the whole cascade of enormous, unprecedented interest in our condition over the last few years: apparent evidence of the link between a specific pathogen and having ME. Even though that didn't pan out, it caused all these new scientists to notice our disease and get involved. Once we've established a firm association between ME and a pathogen (or pathological process), we're in business and that's when more and more scientists will leap on the bandwagon.

We desperately need this study.

Legendrew February 12, 2014 at 6:41 am
MeSci

My educated guess as to whether a pathogenic human microbiome would produce useful information relevant to humans is no. It appears likely to me that even a healthy human microbiome would cause illness in a different species, just as a healthy monkey/rat/mouse/pig/dog/horse microbiome would probably cause illness in a human.

With Lipkin's reputation and apparent expertise and intelligence I am surprised that he would even seriously consider such research, unless it were to satisfy regulatory authorities prior to clinical trials.

You make a lot of good points and I agree that replicating a human microbiome in another species (whether it be healthy or the unbalanced one Lipkin is hypothesising) is a very difficult task and is likely to be for the most part unhelpful, it is however only suggested as a possible route to go and I don't think much will be done with it even if it ends up being looked at. I think we may be blowing this small suggestion out of the water, certainly this study is not worth overlooking because a small potential part of it may or may not use an animal model – which may actually be of use as there is little work done to date trying to replicate human gut microbiome in animals and we could learn something that may even aid further studies in the future. As a firm advocate of the leaky gut hypothesis i'd have thought this study would be something you'd think is worthwhile, I know I myself like to pick out the problems in studies that I think are promising in hope that the problems can be ironed out.

Bob February 12, 2014 at 6:51 am

I totally support @MeSci's right to raise her heart-felt concerns about research using an animal model.
We can promote the study, and fundraise, while acknowledging and accepting people's concerns.

But just to be clear, this study does not incorporate any animal testing.
The only reference to animals in @Simon's article is the following:

Phoenix Rising Team

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.

Firestormm February 12, 2014 at 6:59 am

Re: Concerns raised or questions asked.

We will be contacting Columbia and seeking more information to hopefully provide some more reassurance where necessary. The replies will be posted, or a further article will be generated, as soon as we can.

It is only Day Three and the Group is really only bedding down. We just need a bit more time to hand-over from the Content Team to the Group and then to work back through the comments, here and elsewhere. Hopefully, many questions have been addressed, but outstanding ones will be raised as will concerns.

serg1942 February 12, 2014 at 7:11 am

I have just read the proposed study carefully. I think is a very elaborated and intelligence way to approach and perform a good trial, to try to find out a possible microbial cause (or at least implicated factors) for ME/CFS. I hope it can be finally done.

One of the main goals is to find the "bad guys", right? Well, I think we know some of them very well, and other not that much, but in any case, they should contribute to the possible success of the study. I am talking about the "old guys" (EBV, CMV, HHV6…), the "old and now more famous guys" (Borrelia, Batonella, Chlamydia, enteroviruses…), and of course, he's talking about these bugs probably be hidden in the WBCs… Well, I want to remember that Dr. Kenny De Meirleir et al found plasmacitoid dendritic cells (specific macrophages of the gut) expressing HERVs (Human Endoretroviruses), and probably guilty for an excessive and improper immune activation leading to CFS symptoms–for these cells to do so, they must interact with some of the guys I mentioned before!!!!

So.. I think a lot of work has been made so far, and it is time to put it all together. I root for this study, hoping it counts with the evidence available up to date.

Best!
Sergio

Jon_Tradicionali February 12, 2014 at 7:48 am

Wow. This thread has quickly become the latest hot topic. And rightly so.

But even after the guilty bug is found, what type of treatment would be likely to eliminate it?

Antibiotics, antivirals, herbs, supplements as well as a cohort of alternative medicine has already been self-administered empirically by many PWCFS.

What could be left that has not been tried yet….

MeSci February 12, 2014 at 8:01 am
Bob

I totally support @MeSci's right to raise her heart-felt concerns about research using an animal model.
We can promote the study while acknowledging and accepting people's concerns.

But just to be clear, this study does not incorporate any animal testing.
The only reference to animals in @Simon's article is the following:

I don't want to hijack this thread or cause any confusion, so have started what I hope will be a series of blogposts (time permitting) on important species differences relating to this line of research. The first one is here. You are welcome to leave constructive comments there.

I fully acknowledge and applaud Lipkin's proposed initial research, for which he seeks funding, as stated earlier. It was just undermined for me by that suggested proposed follow-up research, the quote re which I posted with its preceding paragraph earlier in this thread.

Sasha February 12, 2014 at 8:19 am
Jon_Tradicionali

Wow. This thread has quickly become the latest hot topic. And rightly so.

But even after the guilty bug is found, what type of treatment would be likely to eliminate it?

Antibiotics, antivirals, herbs, supplements as well as a cohort of alternative medicine has already been self-administered empirically by many PWCFS.

What could be left that has not been tried yet….

It's hard for anyone to draw conclusions from individuals with our binbag diagnosis dosing themselves with all sorts of different stuff for different periods of time with all sorts of confounding factors and without those patients knowing what bugs they were going after. Targetted therapy with a rationale based on specific testing would be a very different matter.

readyforlife February 12, 2014 at 10:33 am
Wally

We are working on it. The pressure will most likely need to come from Congress and of course a more unified voice from the ME/CFS community. :woot: More to follow on this plan very soon . . . :nerd: Lots of :hug: working on this as we speak. ;)

Has Dr. Lipkin applied for a NIH grant for this work and been denied? Because If I write to the NIH or congress etc.. and ask for them to back this research project, the first thing they are going to say is he needs to apply for a grant. We need some way for him to get money with out having to go through the grant process. Like when the CDC hired him for the XMRV issue or how the NIH coughed up a million dollars for the IOM mess.

Dreambirdie February 12, 2014 at 10:36 am

Maybe someone could make a youtube video about Lipkin's study, to encourage people to donate…?
Just a thought.

Jarod February 12, 2014 at 11:42 am

As somebody who brought up the idea of crowdfunding for CFS research as a way to raise money for CFS research, I'm not happy about Lipkin coming to patients for money.

My original concept for crowd funding was to fully vet the research projects through a crowd sourced web review before funding anything. This would include a full disclosure on how the studies were designed and who is doing what. A full review would allow full input from all the experts before a dime was spent. Everybody's name would be on it with a clear vision and goals.

Additionally, crowd funding was intended to fund guys Like Rich Van K and other independent people who are not boxed in or associated with politics.

Crowd funding truley independent people outside the "establishment" with clear goals and much input from everybody was the goal.

Crowdfunding is a way to change funding, if done correctly. It provides a unique opportunity to fully vet a project. To select the best project, and to insure money is used correctly with accountability. Most importantly; to have an independent study that produces something useful for the community. Tangible and usable results.

Izola February 12, 2014 at 12:54 pm
vli

Thank you so very much @acer2000 .

I would be very grateful too if anyone interested in this study and with fundraising/crowdsourcing experience could step forward and join the crowdfunding group here so that ideas for a campaign can be thrown around!

YES!

vli February 12, 2014 at 1:09 pm

Hello @Jarod

Like I said to @Jon_Tradicionali and @Daffodil, members are free to donate or not to donate to Columbia whether it be for financial reasons (like @Bob said) or because they have doubts and queries about the study. I am compiling an email to Columbia that contains all these questions and as much as anyone would like them resolved as fast and as unequivocally as possible.

When I was helping (in a very small way) Simon put the article together I asked around for people's opinions on researching the microbiome for ME and heard from many De Meirleir patients and others who complained that funds should be given to their researchers, not Lipkin. My immediate gut reaction was (if you'll excuse the pun): well if you feel this strognly about it, why don't you try to organise a campaign for him? As should be obvious, even the person with the least experience or knowledge of these things (me) can initiate such a campaign–it's just that I need tons of help.

I am also a little confused as to why you think any results that Lipkin sees researching the microbiome would not be "tangible and usable" even if other points that you made are valid; but perhaps I'll let others jump in here.

Simon February 12, 2014 at 1:14 pm

Brief introductions to the microbiome

If you want to know a bit more about the microbiome and key research in the area I would recommend :Gut bugs misbehaving? The microbiome and ME/CFS (well, I would, I wrote it).

For a short and entertaining introduction check out the video below – only 5 mins, good animations and good science too:

vli February 12, 2014 at 1:17 pm

I am happy to report that I just received an email from Columbia that says that yesterday (2/11/14) 66 gifts were received for the microbiome study for a total of $5,312. Thank you so much, everyone!! :balloons::balloons::balloons:

maryb February 12, 2014 at 1:21 pm

Can people be aware that in the special instructions box you have to type in

for the microbiome study’.

I didn't see this until after I'd donated:(

Sasha February 12, 2014 at 1:28 pm
maryb

Can people be aware that in the special instructions box you have to type in

for the microbiome study’.

I didn't see this until after I'd donated:(

I suggest you bung them an email or phone them – here are the contact details on the donation page:

If you have any problems with this form—technical or otherwise—please contact webgift@columbia.edu or 1-866-GIFTSYS.

maryb February 12, 2014 at 1:30 pm

@Sasha
I have done thanks, just makes it harder to do things twice…especially when you been sick all day. No – not looking for sympathy, I'm feeling sorry enough for myself:)

bel canto February 12, 2014 at 1:39 pm

Not bad for day one!

Sasha February 12, 2014 at 1:41 pm
Jarod

As somebody who brought up the idea of crowdfunding for CFS research as a way to raise money for CFS research, I'm not happy about Lipkin coming to patients for money.

Hi Jarod – I think the idea of crowdfunding for ME research has been around for a while now – a couple of years at least – and there have been discussions on these boards about what we could do, even in terms of choosing projects that were already fundraising and selecting a particular one to go for.

Truth is, we're not very well geared up for that at this stage, and even if we were, I'd be very surprised if everyone was able to agree on a priority. I'm delighted that Dr Lipkin has approached us for help with funding – such a major scientist being interested in our disease is a huge opportunity in ways that go well beyond his actual research. I think we should grab this opportunity while it's on offer.

Additionally, crowd funding was intended to fund guys Like Rich Van K and other independent people who are not boxed in or associated with politics.

Intended by whom? If an undertaking is going to succeed in the ME community it needs wide support and I don't think that being an independent researcher (if by that you mean not affiliated to an institution) is a sign of quality or that you'd get wide agreement on that across the community. Research projects need to stand on their merits. I don't see any evidence that Lipkin is 'boxed in' or 'associated with politics'.

I think that the lessons that we'll learn as a community about how to crowdfund successfully will be enormously useful and that we'll be able to apply them to other, future projects. I see this appeal as the first of many. I think we're going to find our feet as a fundraising community with this project and that Lipkin's name and prestige is going to help us do that. And after that, the sky's the limit…

Bob February 12, 2014 at 1:43 pm
Jarod

As somebody who brought up the idea of crowdfunding for CFS research as a way to raise money for CFS research, I'm not happy about Lipkin coming to patients for money.

My original concept for crowd funding was to fully vet the research projects through a crowd sourced web review before funding anything. This would include a full disclosure on how the studies were designed and who is doing what. A full review would allow full input from all the experts before a dime was spent. Everybody's name would be on it with a clear vision and goals.

Additionally, crowd funding was intended to fund guys Like Rich Van K and other independent people who are not boxed in or associated with politics.

Crowd funding truley independent people outside the "establishment" with clear goals and much input from everybody was the goal.

Crowdfunding is a way to change funding, if done correctly. It provides a unique opportunity to fully vet a project. To select the best project, and to insure money is used correctly with accountability. Most importantly; to have an independent study that produces something useful for the community. Tangible and usable results.

Technically speaking, I tend to agree with you on this, Jarod. My personal preference would be for a different research project, such as testing lymph and gut tissues for viruses, and further auto-immune studies. And I think perhaps patients' money would be put to best use by providing seed money for small exploratory research projects.

However, fundraising requires more than technical details. It requires inspiration and momentum and this study seems to have captured people's imagination, and it seems that there is some momentum behind it. I reckon $1m going to Lipkin is probably better than nothing going to nobody, so I'm going with the flow. And as @vli says, people are free to donate to it, or not, as they see fit.

Also, as others have said, this study should not be seen in isolation, but the knock-on effects could be huge to have Lipkin continue to research our illness on such a large scale. e.g. Unexpected results might turn up, and Lipkin might do further collaborative studies with other ME researchers, and other researchers might see what Lipkin's doing and start to take ME more seriously, etc. I expect Lipkin will also continue to apply for funds for other ME research projects, and if he gets any interesting results in this study then it will lead to further research.

Also, if a team of patients get together to organise crowd-funding for this project, then they'll probably carry on afterwards, and will perhaps be able to achieve more funding for further projects in the future. So perhaps it's not perfect, but research never is.

Oh, and also, many patients really really want to see a gut/microbiome study carried out, by someone like Lipkin.

Sasha February 12, 2014 at 1:50 pm
Bob

And I think perhaps patients' money would be put to best use by providing seed money for small exploratory research projects. However, fundraising requires more than technical details.

I seem to be having a bit of a contrarian streak but I think that there've been far too many small, exploratory projects. I think that's been our curse – lots of small projects that never get followed up. We need a strong lead followed strongly – that is, a likely target (and the microbiome is a likely target) examined in a large, well-conducted study by someone so heavyweight that the findings get a lot of attention. That's what we'll be getting with the Lipkin study.

It requires inspiration and momentum and this study seems to have captured people's imagination, and it seems that there is some momentum behind it. I reckon $1m going to Lipkin is probably better than nothing going to nobody, so I'm going with the flow.

I think that's a very important point. Every one of us probably has a pet study that they'd like to see done but we're not going to convince every else to fund it because they've got their own pets! But when a study like this comes along, and lots of people see the potential, enough are willing to fund it because they can see that others will donate in large numbers and that it can succeed.

Rich D February 12, 2014 at 3:53 pm

Donated.

vli February 12, 2014 at 3:58 pm
Bob

I reckon $1m going to Lipkin is probably better than nothing going to nobody, so I'm going with the flow.

I agree! :D And I think it's worth repeating that Lipkin's work isn't PREVENTING other research work from happening, nor is it "using up funds" that would otherwise be given to other researchers. Researchers like De Meirleir don't have a study set up "ready to go" as we speak, so how is Lipkin interfering with funding for them or patient support for them? De Meirleir/Chia patients are going to support their own researcher regardless of what Lipkin does–Lipkin's study is not undermining that.

Nico February 12, 2014 at 4:33 pm
PDXhausted

Anyone know if they will give an update as to how much they've collected so far and how much there is to go? I feel like that can be helpful in reaching a critical mass.

agree, am curious about a "funds raised thermometer" if you will.

vli February 12, 2014 at 5:38 pm
Nico

agree, am curious about a "funds raised thermometer" if you will.

The only way I can do this for now is to keep asking Columbia for updates–please bear with us!
On Monday Columbia counted 14 gifts totaling $2935, although those gifts were received between Oct '13 and Monday, so over a much longer period.
However on Tuesday they received 66 gifts totaling $5312, so as of Tue. the "grand total" is $8247 :thumbsup: :)

August59 February 12, 2014 at 5:46 pm

If the CDC feels so strongly about the 1 million patients in the US alone, then why don't they get off their ass and help fund the study. They would not have job if we were not paying the taxes that we are. They do work for us as well as the NIH.

My senator is getting ready to get an ear full about the amount of funding we as patients of an insidious disease where the highest percentage of death rate is caused by suicide. I don't believe this is the case with MS or Asthma, although I have friends with both, and those groups receive 23 to 57 times the amount of funding that ME/CFS receives!

biophile February 12, 2014 at 8:38 pm

Whether or not Lipkin was officially turned down by the NIH is an interesting question.

When patients complain about a severe lack of funding, it is sometimes claimed that there has simply been a lack of quality proposals rather than a lack of available funding. I am not savvy in the complex politics of grant funding, but I have doubts that this reason alone can explain the severe lack of funding. Something else, such as politics or a lack of will, is also going on.

Are we supposed to believe that someone such as Lipkin is too incompetent to put together a quality proposal for a promising lead? Obviously application of a grant is no guarantee of success, but still, the reasons for rejection should be explored.

IIRC, Johnathon Kerr applied for funding repeatedly in the UK and kept getting turned down because a psychiatrist on the panel rated his proposals as poor while everyone else on the panel generally rated them as good enough?

I think it was Pat Fero who investigated the CDC and NIH funding of CFS and the available funding was often spent on questionable projects which had very little to do with CFS. Not to mention the CDC funding misappropriation scandal.

There also seems to be a circular problem where researchers are less likely to apply for grants if they know the chances of success are doubtful for whatever reason. But looked what happened in the UK when (chump change) funding was ring fenced, lots of proposals regarded as a "high quality" were soon submitted. So a lot can be said about why researchers are discouraged, including previous experiences of having good proposals turned down for bullshit reasons.

If the NIH did the same with $25 million or so, no doubt there would be many good proposals too. Researchers should not be held wholly accountable for what gets funded. There needs to be more engagement and encouragement from funding bodies.

user9876 raises some good points on another thread:
http://forums.phoenixrising.me/inde…writing-about-me-cfs.28165/page-2#post-429474

Nielk February 12, 2014 at 9:13 pm

Lipkin, in his last public statement to us on the phone meeting with the CDC, announced that he did apply for a grant from the NIH to continue his study and was declined.

Wally February 12, 2014 at 10:43 pm
Nielk

Lipkin, in his last public statement to us on the phone meeting with the CDC, announced that he did apply for a grant from the NIH to continue his study and was declined.

Hi! Everybody. I have been off line today, but I just wanted to pop in to say that all of the questions and information that people are raising here and on other Forums/social media sites, about fundraising for Dr. Lipkin's research project, as well as others, are being listened to.

Discussions are ongoing with several organizations right now and I am going to try to talk to Simon, vli and others tonight or tomorrow to sort some of the fundraising details out. My hope is that there will be more definitive information to provide everyone in the patient community about what is being looked at within the next day or two. So hold on to your hats – things are looking very positive to get a fire going under the patient community, the government and the scientific community in a very positive way to really move this illness forward.

In the mean time keep any of your questions and/or comments coming. It is really important to get these ideas and thoughts out on the table now, so the next steps that are taken will be a reflection of what a broad base of patients would like to see happen with fundraising. P.S. I think you might be surprised to know how many people are watching and listening to what you have to say. ;)

Wally

vli February 12, 2014 at 10:46 pm

@biophile
I can't find it in the article itself (fatigued!) but I listened to Simon's recording of the interview several times and I know for a fact that at one point Lipkin answered Simon that he DID apply to the NIH for a grant for this study but was turned down. In short: with respect to microbiome work, neither the NIH NOR the CFI are giving him any money.

Daffodil February 12, 2014 at 10:49 pm

I wish demeirleir would appeal for funding. I can ask his team where we can donate but I believe wpi is where a lot of the research is taking place. not sure how people feel about donating to them…but from what I have heard about demeirleir's research, I would donate.

is lipkin going to be studying tissue? if so, then it would be very worthwhile, in my opinion.

Firestormm February 12, 2014 at 11:15 pm

Was Lipkin turned down by the NIH for this Microbiome study? Yes.

See main article here:

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 million annually for MS and $284 million 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”

There were some very strange reasons cited by Lipkin for this refusal to fund, and they didn't seem to have anything to do with the quality of the study proposal, which made the whole thing even more weird: at least to me. Nothing nefarious was behind the decision – but the application was turned down.

It is not outside the realms of possibility that Lipkin will reapply for funding from NIH or from CFI. I think with respect to CFI they have already committed a fair chunk of money to his team but if we, as a community, can also demonstrate we are supportive of Lipkin, then CFI might be more inclined to commit more funds.

I also agree that if awareness of this Appeal and the support it is (and will) receive from the patient community, is effectively brought to the awareness of Congress and your representatives, then it could certainly provide an opportunity to help tip the balance on future funding allocation for ME, and even help sway the argument in favour of granting Lipkin approval should he reapply.

Was it Klimas at the IOM meeting recently, who raised the issue of spending on Male Baldness being far in excess of any kind of commitment to ME? I think it was. A useful quote to accompany any letters you might write.

For me though, I think it is a simple question of: If a scientist of this calibre and with such a team behind him, is prepared to invest in our illness and believes there is good reason to – then why aren't you (i.e. NIH)?

Wally February 12, 2014 at 11:25 pm

@Firestormm

Especially if the Appeal were to be accompanied by (as some of you are doing it would seem) protests to Congress etc. over the disproportionate slice of the cake.

Was it Klimas at the IOM meeting recently, who raised the issue of spending on Male Baldness being far in excess of any kind of commitment to ME? I think it was. A useful quote to accompany any letters you might write.

Yes, I agree.

Plans are in the works to get the patient community in a position to make these type of letters/communications have some real impact. This is all part of the overall "fundraising" strategy that is being looked at, so hopefully our efforts can have a resounding "pounding" of thunder around the globe. :balloons:

Sean February 12, 2014 at 11:47 pm

Was it Klimas at the IOM meeting recently, who raised the issue of spending on Male Baldness being far in excess of any kind of commitment to ME?

As a middle aged male completely unfazed by his normal male balding, I say spend the cash on ME research.

The hair I can live without.

Bob February 13, 2014 at 12:05 am
biophile

Whether or not Lipkin was officially turned down by the NIH is an interesting question.

When patients complain about a severe lack of funding, it is sometimes claimed that there has simply been a lack of quality proposals rather than a lack of available funding. I am not savvy in the complex politics of grant funding, but I have doubts that this reason alone can explain the severe lack of funding. Something else, such as politics or a lack of will, is also going on.

Are we supposed to believe that someone such as Lipkin is too incompetent to put together a quality proposal for a promising lead? Obviously application of a grant is no guarantee of success, but still, the reasons for rejection should be explored.

IIRC, Johnathon Kerr applied for funding repeatedly in the UK and kept getting turned down because a psychiatrist on the panel rated his proposals as poor while everyone else on the panel generally rated them as good enough?

I think it was Pat Fero who investigated the CDC and NIH funding of CFS and the available funding was often spent on questionable projects which had very little to do with CFS. Not to mention the CDC funding misappropriation scandal.

There also seems to be a circular problem where researchers are less likely to apply for grants if they know the chances of success are doubtful for whatever reason. But looked what happened in the UK when (chump change) funding was ring fenced, lots of proposals regarded as a "high quality" were soon submitted. So a lot can be said about why researchers are discouraged, including previous experiences of having good proposals turned down for bullshit reasons.

If the NIH did the same with $25 million or so, no doubt there would be many good proposals too. Researchers should not be held wholly accountable for what gets funded. There needs to be more engagement and encouragement from funding bodies.

Good points. It's reminded me that, at a CFSAC meeting or the FDA (patient stakeholders conference) meeting Susan Maier of the NIH said that the NIH wanted to fund more good quality research and that ME researchers should go directly to her for guidance on making successful research applications. Perhaps budget restrictions are the only reason for the Lipkin funding being declined, but it would be good to know the details. One of us should perhaps contact Maier to ask why the Lipkin study was declined. Does anyone know if she responds to emails, and would they divulge such information? (i.e. is it worth bothering?)

Kati February 13, 2014 at 12:09 am
Sean

As a middle aged male completely unfazed by his normal male balding, I say spend the cash on ME research.

The hair I can live without.

It just amazes me when men are bothered by their balding which occurs naturally when women in fact think it's sexy. :cool:

Firestormm February 13, 2014 at 12:11 am

Someone also just pointed out to me that in a straight choice they would rather have seen the $1million spent on Lipkin than on any attempt by non-experts to redefine diagnostic criteria for our disease – i.e. the study now underway from The Institute of Medicine.

Personally, I am less inclined to think the IOM review isn't necessary, but you might want to use it as an argument or at least to suggest I suppose that HHS and NIH have their priorities wrong: which I do agree they have.

We should be publishing an article later today from @Nielk which will be a full summary of the recent and important Open Meeting that took place with the IOM. You might like to use this to help direct you to many of the relevant presentations that were made :)

Firestormm February 13, 2014 at 12:19 am
Bob

Good points. It's reminded me that, at a CFSAC meeting or the FDA (patient stakeholders conference) meeting Susan Maier of the NIH said that the NIH wanted to fund more good quality research and that ME researchers should go directly to her for guidance on making successful research applications. Perhaps budget restrictions are the only reason for the Lipkin funding being declined, but it would be good to know the details.

One of us should perhaps contact Maier to ask why the Lipkin study was declined. Does anyone know if she responds to emails, and would they divulge such information? (i.e. is it worth bothering?)

I think it's a very worthwhile email to send, Bob (you night-owl you :)).

Lipkin, as I said, did provide an explanation, but we were not privy to the full rationale and it would be very helpful to make a request for such a thing. And we have no way of knowing if what we were told was the real deal or his being rather pissed off. And that's something else worth mentioning in any protest. If you go back to Simon's article on the CDC telephone broadcast, Lipkin makes some very frustrated references to central funding, and how hard it has been to gain any support from this source.

I think in part this can be put down to the reduced allocations generally – but I had heard I think this sequestration was being relaxed? Not sure – anyway, there is little doubt that ME ranks poorly in terms of a slice of the pie. And as you said – they want solid applications, they want solid researchers, so when they get them: why aren't they funding them? I suspect we will never be in a position to fairly judge the full reasons for any individual project being refused funding, but it shouldn't stop us asking reasonable questions.

Sean February 13, 2014 at 12:28 am
Kati

It just amazes me when men are bothered by their balding which occurs naturally when women in fact think it's sexy. :cool:

And who am I to argue? :woot:

What I would really like to know is why the increasing cascade of nose and ear hair as I age? What is nature preparing me for that requires this redirected hirsuteness? o_O

Firestormm February 13, 2014 at 12:37 am
Sean

What I would really like to know is why the increasing cascade of nose and ear hair as I age? What is nature preparing me for that requires this redirected hirsuteness? o_O

:rofl: So true! There must be a market for this stuff. Some sort of weave for jumpers or something. We could corner the market. All we 'men of a certain age'. A new fashion like angora sweaters :jaw-drop: :wide-eyed::rofl:

Bob February 13, 2014 at 1:59 am
Firestormm

I think it's a very worthwhile email to send, Bob (you night-owl you :))

So, are you volunteering me, Firestormm? :)

I could send an email today.

As you say, it would be helpful to know why the application was rejected.

But I expect the response will be vague and meaningless.

Edit. I've written an email. I'll send it a little later, pending any further comments about the issue.

BTW. Twit-Twoo!

[​IMG]

Bob February 13, 2014 at 2:04 am
Kati

It just amazes me when men are bothered by their balding which occurs naturally when women in fact think it's sexy. :cool:

lol, so, should we start posting photos of our bald patches in the community section of the forum? :)

Sean

What I would really like to know is why the increasing cascade of nose and ear hair as I age? What is nature preparing me for that requires this redirected hirsuteness? o_O

lol, steady Sean, if your balding head is considered sexy, there's no knowing what effect your cascading nose and ear hair will have on other members. Members might start spontaneously passing out. :)

vli February 13, 2014 at 2:16 am
Izola February 13, 2014 at 3:35 am
Simon

Brief introductions to the microbiome
the
If you want to know a bit more about the microbiome and key research in the area I would recommend :Gut bugs misbehaving? The microbiome and ME/CFS (well, I would, I wrote it).

For a short and entertaining introduction check out the video below – only 5 mins, good animations and good science too:

Simon: You said 5 minutes! I watched the cartoon which was great fun, then a thing about unusual animals (I don't think it was about us!) then a study about the Bonobos, than a thingy showing that plants were intelligent and could communicate with each other. That may have been about us. Now where do you get 5 minutes out of 3 hours and 2 minutes? Just wondering. Iz

Sean February 13, 2014 at 3:39 am

Members might start spontaneously passing out. :)

Passing out what?

:D

Izola February 13, 2014 at 3:41 am
vli

LOL

*O* :rofl:

Bob February 13, 2014 at 3:46 am
Sean

Passing out what?

:D

Smelling Salts! :D

(That's what to pass out for those who pass out!)

Izola February 13, 2014 at 3:58 am
maryb

@Sasha
I have done thanks, just makes it harder to do things twice…especially when you been sick all day. No – not looking for sympathy, I'm feeling sorry enough for myself:)

:hug:

Izola February 13, 2014 at 4:05 am
Bob

I totally support @MeSci's right to raise her heart-felt concerns about research using an animal model.
We can promote the study, and fundraise, while acknowledging and accepting people's concerns.

But just to be clear, this study does not incorporate any animal testing.
The only reference to animals in @Simon's article is the following:

Is the reverse how we came to get the parvo virus?

Sasha February 13, 2014 at 4:32 am
Firestormm

how hard it has been to gain any support from this source.

I think in part this can be put down to the reduced allocations generally – but I had heard I think this sequestration was being relaxed? Not sure – anyway, there is little doubt that ME ranks poorly in terms of a slice of the pie.

It's all about slice of the pie and not about sequestration. We hear over and over this idea that there are massive cuts to the NIH budget so we should expect less – but if we got our fair share of even a massively reduced budget we'd still have loads more funding than we do now. We should never let ourselves be blindsided by general cuts to the NIH budget. It's not the issue. Like you say, it's the slice of the pie.

Jon_Tradicionali February 13, 2014 at 4:34 am
Izola

Is the reverse how we came to get the parvo virus?

Now that you mention PB19

Not too long ago, Kristin Loomis of the HHV6 Foundation sent me a personal email stating her theory. She said it was her belief that the Parvovirus B19 infects the brain which then manifests as CFS. According to her, it would be another decade before our technology can detect the specific site of infection.

Just goes to show how different each researchers beliefs and theories are….

Well Stephen did say researchers all over the world have made careers out of their unproven "theories".

Izola February 13, 2014 at 4:38 am
Wally

Hi! Everybody. I have been off line today, but I just wanted to pop in to say that all of the questions and information that people are raising here and on other Forums/social media sites, about fundraising for Dr. Lipkin's research project, as well as others, are being listened to.

Discussions are ongoing with several organizations right now and I am going to try to talk to Simon, vli and others tonight or tomorrow to sort some of the fundraising details out. My hope is that there will be more definitive information to provide everyone in the patient community about what is being looked at within the next day or two. So hold on to your hats – things are looking very positive to get a fire going under the patient community, the government and the scientific community in a very positive way to really move this illness forward.

In the mean time keep any of your questions and/or comments coming. It is really important to get these ideas and thoughts out on the table now, so the next steps that are taken will be a reflection of what a broad base of patients would like to see happen with fundraising. P.S. I think you might be surprised to know how many people are watching and listening to what you have to say. ;)

Wally

Bob

Good points. It's reminded me that, at a CFSAC meeting or the FDA (patient stakeholders conference) meeting Susan Maier of the NIH said that the NIH wanted to fund more good quality research and that ME researchers should go directly to her for guidance on making successful research applications. Perhaps budget restrictions are the only reason for the Lipkin funding being declined, but it would be good to know the details. One of us should perhaps contact Maier to ask why the Lipkin study was declined. Does anyone know if she responds to emails, and would they divulge such information? (i.e. is it worth bothering?)

IMHO, we've been turned down for 3 decades in the hopes we would go away or die. Lipkin adding his name to our mix just raised others "esteem" for us out of a deep dark cellar.

Izola February 13, 2014 at 4:48 am
Jon_Tradicionali

Now that you mention PB19

Not too long ago, Kristin Loomis of the HHV6 Foundation sent me a personal email stating her theory. She said it was her belief that the Parvovirus B19 infects the brain which then manifests as CFS. According to her, it would be another decade before our technology can detect the specific site of infection.

Just goes to show how different each researchers beliefs and theories are….

Well Stephen did say researchers all over the world have made careers out of their unproven "theories".

Two decades ago our experts and others (who were our experts but people get old) each had their focus on different parts of the body and different pathogens. It looked they were all wandering around in a daze to my unfocused and broken brain. Well, guess what, this disease impacts our whole body and brain. The gut, from your mouth on down is the biggest part of our immune system. I made my call to Columbia today and made my donation. Three cheers for Lipkin and Columbia.

Firestormm February 13, 2014 at 5:16 am
Izola

Simon: You said 5 minutes! I watched the cartoon which was great fun, then a thing about unusual animals (I don't think it was about us!) then a study about the Bonobos, than a thingy showing that plants were intelligent and could communicate with each other. That may have been about us. Now where do you get 5 minutes out of 3 hours and 2 minutes? Just wondering. Iz

The video is 5 mins long for me Izola. I click even the image you copied above, and it's 5 minutes. From what I can recall it's a basic overview of what the microbiome is all about. Was rather good I thought especially as I knew very little about it. I like these 'Sesame Street' type of things. I swear they design them for me! :)

You can of course go direct to the You Tube page by clicking the title (underlined when you hover over it) at the top of the video:

Izola February 13, 2014 at 5:33 am
serg1942

I have just read the proposed study carefully. I think is a very elaborated and intelligence way to approach and perform a good trial, to try to find out a possible microbial cause (or at least implicated factors) for ME/CFS. I hope it can be finally done.

One of the main goals is to find the "bad guys", right? Well, I think we know some of them very well, and other not that much, but in any case, they should contribute to the possible success of the study. I am talking about the "old guys" (EBV, CMV, HHV6…), the "old and now more famous guys" (Borrelia, Batonella, Chlamydia, enteroviruses…), and of course, he's talking about these bugs probably be hidden in the WBCs… Well, I want to remember that Dr. Kenny De Meirleir et al found plasmacitoid dendritic cells (specific macrophages of the gut) expressing HERVs (Human Endoretroviruses), and probably guilty for an excessive and improper immune activation leading to CFS symptoms–for these cells to do so, they must interact with some of the guys I mentioned before!!!!

So.. I think a lot of work has been made so far, and it is time to put it all together. I root for this study, hoping it counts with the evidence available up to date.

Best!
Sergio

For several different reasons, I've long suspected Entero viruses. Together, we have a long list of suspects. Its time to put them in the box..

Izola February 13, 2014 at 5:45 am
Firestormm

The video is 5 mins long for me Izola. I click even the image you copied above, and it's 5 minutes. From what I can recall it's a basic overview of what the microbiome is all about. Was rather good I thought especially as I knew very little about it. I like these 'Sesame Street' type of things. I swear they design them for me! :)

You can of course go direct to the You Tube page by clicking the title (underlined when you hover over it) at the top of the video:

Sorry. Yes its 5 minutes, My attempt at humor was dull. I liked the cartoon. No, I loved it. Thank you. Its a great medium of introduction. I just got into all the PBS specials that lined up afterwards. In other words YouTube was impressed or whatever the powers that be, be it regular people or YouTube. You got lined up with really impressive company.

Izola February 13, 2014 at 6:07 am
Christopher

@Wally Maybe we can try to put some pressure on the NIH to cough up some funding by shaming them for the lack of funding in the past, present, and the CDC misappropriation incident.

$1 mil is nothing relative to our collective disability.

NIH isn't about to cough anything up after they spit on us. I hope I am wrong, but I doubt it for the time being. They have shown at least me that they have no shame.

Izola February 13, 2014 at 6:15 am
Wally

We are working on it. The pressure will most likely need to come from Congress and of course a more unified voice from the ME/CFS community. :woot: More to follow on this plan very soon . . . :nerd: Lots of :hug: working on this as we speak. ;)

Thank You Wally! :):thumbsup:

Izola February 13, 2014 at 6:19 am
Simon

Yes, we did ask this, partly prompted by your questions on another thread and the breakdown was given in the article. I do hope you were persuaded to donate by what CII told you.
I would argue the high tech equipment maintenance costs (about $30k, I think) are actually a direct cost of the study, leaving "admin" which includes providing the building, heating and lab benches, general service costs amounting to around 9%. That struck me as fair enough.

Feel free to publish the detail here (assuming it's the same one page breakdown I had) – I checked with Columbia and they were ok for it to go public (but my article was long enough without includig any more budget detail!).

Thank you, Simon (from Wally)

I phoned Columbia this afternoon. The weather there is getting awful!! AS I said earlier, I donated. Thank You, Simon.

Izola February 13, 2014 at 6:38 am
vli

@Simon , thou art too humble… obviously the two people I owe the greatest thanks to are yourself and @Firestormm , about whom I can say the same thing–without either of you this also would not have happened! Shouts out also go to @Sasha , @Legendrew, @Mark and any other member of the Content Team I might've missed.

Thought I would take this opportunity to report that Columbia has informed me that, from 10/2013-2/2014, they have received 14 gifts for ME/CFS research totaling $2,935 :balloons::balloons::thumbsup: Unfortunately I do not know how much of that total went to the microbiome study, and I strongly suspect that not all donations given after Simon's article came out have been processed (seeing that I only sent Columbia this enquiry yesterday evening). If you would like me to find out please tag me in a reply and I will ask how much of that total went to the microbiome study specifically.

:woot: THANK YOU EVERYONE!!! :thumbsup:

I Phoned Columbia this afternoon. Add me to the tally. Izola

Izola February 13, 2014 at 6:49 am
August59

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!

The NIH and the CDC could, but don't want to, envision anything for us except for us to go away.

Firestormm February 13, 2014 at 6:53 am
vli

I am happy to report that I just received an email from Columbia that says that yesterday (2/11/14) 66 gifts were received for the microbiome study for a total of $5,312. Thank you so much, everyone!! :balloons::balloons::balloons:

@Izola

I think this was the latest total we received, so as at Tuesday it was $5,312 :)

I believe Vanessa will try her best to keep this thread manually appraised on the total, until we can set something up that is more automatic.

Izola February 13, 2014 at 7:02 am
Bob

If he is using the samples from his earlier study, then I think that may explain the unusually fast estimated turn-around time.

He has a reputation for results, though I haven't been keeping up with anyone for the past 7-10 years.

Izola February 13, 2014 at 7:19 am
vli

@biophile
I can't find it in the article itself (fatigued!) but I listened to Simon's recording of the interview several times and I know for a fact that at one point Lipkin answered Simon that he DID apply to the NIH for a grant for this study but was turned down. In short: with respect to microbiome work, neither the NIH NOR the CFI are giving him any money.

NIH wouldn't give us anything if we fell dead at their door. I forget who NOR and CFI are. Or maybe I didn't know in the first place.

Maybe someone could give the rest of us a clue. The alphabet stew and other non-usual references can confuse newcomers and those unable to be regulars.

Nico February 13, 2014 at 12:16 pm

Thank you vli. That is not enough, of course.

I want to explore methods of doing online fundraising for this, but I can't put any effort into it today. I've spent my morning composing an email to a German reporter about the science behind the illness. Constantly trying to "enlighten" above and beyond the "depression" stigma.

Anyway. Segue, pardon me.

acer2000 February 13, 2014 at 2:56 pm
biophile

Whether or not Lipkin was officially turned down by the NIH is an interesting question.

When patients complain about a severe lack of funding, it is sometimes claimed that there has simply been a lack of quality proposals rather than a lack of available funding. I am not savvy in the complex politics of grant funding, but I have doubts that this reason alone can explain the severe lack of funding. Something else, such as politics or a lack of will, is also going on.

Are we supposed to believe that someone such as Lipkin is too incompetent to put together a quality proposal for a promising lead? Obviously application of a grant is no guarantee of success, but still, the reasons for rejection should be explored.

I had the same thought myself… its like they are talking out of both sides of their mouth.

1. Not funding because of lack of grant proposals.
2. Get a grant proposal from a well known, well respected, research lab at a major university to study a hot topic (microbiome) in an underserved and expensive (to society) illness.
3. DENY!

4. Instead give 1M to IOM against all expert advice.

Wally February 13, 2014 at 3:20 pm

Simon,

Well done on this article. I did some of my own due diligence and talked directly with Columbia to make sure that any money that I donated would go directly to Dr. Lipkin's project. I am confident that the majority of the money that I donate will go directly to fund this research and the amount going to overhead for the project will stay within the 10% ball park that I believe is an acceptable level for an organization to use for administrative and other overhead costs.

I just want to be sure that when others decide that they too would like to make a donation to this research project that they look at the donation page very carefully and make sure that their donation is earmarked to go directly to this particular project. Very excited to see another opportunity for patients to raise their voices up to be heard.

I also want people to know that if Dr. Lipkin's research project is not the particular research project that they feel ready to pull the trigger to make a donation to, they don't need to feel that they have been left out in the cold. They can hop on over to the Open Medicine Foundation and see what research projects a stellar group of MECFS physicians and scientists think would be worth funding. Note Mady Hornig works with Dr. Lipkin and she is on the OMNI Merit's list of collaborators. See, http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. I plan to make donations to both of these organizations (directly to Columbia and directly to the OMI Foundation).

I also realize some people may not have the resources to make a donation. So, I think it is important for each patient to know that they should not feel left out if they simply can't afford to make a donation. I am hoping that maybe we could even set up a buddy system, where those who can afford to donate (and I mean any amount to donate) could be paired with a buddy who would like to make a donation, but is unable to do so right now. It could be an anonymous pairing and/or an anonymous amount for the donation.

For instance if you would like to be my donation buddy, I am volunteering to make a donation on your behalf (pseudo names are fine with me) to Dr. Lipkin's study at https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677. Alternatively, you can select one of the research projects listed on the OMI Foundation site at http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. Or if you really are struggling to decide where you would like a donation to be made, I will split the donation between Dr. Lipkin's project and one project on the OMNI Merit list.

The donation amount that I will be willing to make for my donation buddy is $50.00 for one study or divided between two studies (i.e. $25.00 for Dr. Lipkin's microbiome project and $25.00 to one project that you select from the OMNI-Merit list). Leave me a message on my Forum member e-mail, if you would like to buddy up. I will come back and post as soon as I receive a buddy request and let you know if there are other buddy requests that have come through. If no one decides to be my buddy, I will be very sad :(, but I will still make a donation in honor of my namesake Wally, who is somewhere up in beagle heaven probably enjoying a fun day chasing bunny rabbits and squirrels.

Together let's make tomorrow a great Valentine's Day for our patient community!

Wally

acer2000 February 13, 2014 at 8:32 pm
Bob

Good points. It's reminded me that, at a CFSAC meeting or the FDA (patient stakeholders conference) meeting Susan Maier of the NIH said that the NIH wanted to fund more good quality research and that ME researchers should go directly to her for guidance on making successful research applications. Perhaps budget restrictions are the only reason for the Lipkin funding being declined, but it would be good to know the details. One of us should perhaps contact Maier to ask why the Lipkin study was declined. Does anyone know if she responds to emails, and would they divulge such information? (i.e. is it worth bothering?)

Bob I think this is a great idea. If for no other reason than to motivate a focused letter writing campaign.

drewmaster February 13, 2014 at 8:52 pm

I just gave, because I firmly believe that if anyone can solve this riddle, it's Ian Lipkin. If you haven't given already, PLEASE, find it in your heart to do so. Even a dollar will help. Whatever help you can offer will make a difference.

Thank you.

Drew

vli February 13, 2014 at 9:38 pm
Izola

I forget who NOR and CFI are.

LOL I'm so sorry Izola.

CFI = Chronic fatigue Initiative

I meant 'neither NIH nor CFI are funding him…'.

August59 February 13, 2014 at 9:59 pm

I have read most of this thread, but may have missed this thought. Does anyone know of a list or some other way to solicit organizations and/or possibly companies (especially larger ones) to see if there is a way to acquire matching funds for the funds donated by patients or individuals?

So, the "Microbiome study" did not fall under the original "CFI" funding? Dr. Lipkin has not finished the CFI study has he?

Thanks

Daffodil February 14, 2014 at 1:14 am

you can also donate to the WPI, where all the most cutting edge work is being done, under dr. Lombardi's team. they will solve this faster than anyone, I think.

if people are still angry over the xmrv thing or the mikovits thing, we need to get over it because they are doing some fabulous work over there.

Sasha February 14, 2014 at 3:59 am
drewmaster

Even a dollar will help. Whatever help you can offer will make a difference.

That's absolutely true – don't be put off if you can only chip in the price of a cup of coffee. It all adds up. And it feels good to do it!

And if you're flat broke (many are!), you can also help by spreading the word… :)

biophile February 14, 2014 at 4:19 am

@Daffodil . Any examples of the cutting edge work being done at the WPI? I don't think many people are going to get over the WPI's history so easily without a good solid reason, like a published paper which stands replication.

Simon February 14, 2014 at 4:19 am
Name the campaign!

The Lipkin fundraising group is beavering away in the background (join us!) but we are struggling to find a snappy, memorable name – and we can't set up websites or social media until we have one.

So, please help us out if you can with a suggestion, or say if any of those below grab you. Thanks very much

Suggestions to date:

Million4ME

FundME

Hunting for a Cure

Big Bang Study 4 Gut Bugs
Million $ BIG BANG 4 GUT Research
The 1 million BIG BANG FOR GUT study

Lipkin's $1 million dollar appeal

The $1 million microbiome project

Tuha February 14, 2014 at 4:56 am

no luck for bug
no more luck for bug

But english is not my language – so maybe it doesnt sound good

biophile February 14, 2014 at 5:06 am

Million4ME is sort of catchy, if a ME criteria is going to be used.

How about Million4MEBug? Too much?

"Time to give a buck".

vli February 14, 2014 at 5:09 am

I like FundME.
I can only think of BucksForBugs
Can't sleep so still musing…

vli February 14, 2014 at 5:13 am

Oh and then in the blurb, we can write "you can give as little as a buck, just like the campaign says" or whatever

The Bug Identity–alright I'm watching way too much television

Tuha February 14, 2014 at 5:17 am

or:
no hug for bug

bug in jug

And then to have animated logo with scary Ian Lipkin killing a bug with an injection or something like this

Ok that´s everything from my small creativity :-)

Bob February 14, 2014 at 5:32 am

More Ideas:

TheMillionDollarPatient

TheMillionDollarProject

MillionDollarBugHunt

MillionDollarVirusHunt

MillionDollarCure

Jon_Tradicionali February 14, 2014 at 5:43 am

My idea out of thin air:

CFSbugsME

Don't all thank me at once

Sean February 14, 2014 at 6:35 am

biophile's suggestion is good.

Million4ME

Though the ME v. CFS thing could be an issue.

Bob February 14, 2014 at 7:11 am

I quite like Million4ME except that perhaps it could be misinterpreted as being greedy.

i.e. "a million for me"

'Million4You' might seem less greedy, but perhaps not so helpful.

Sasha February 14, 2014 at 7:58 am
Bob

MillionDollarBugHunt

I like it (I'd separate the words out, though!).

Does what it says on the tin – if Dr Lipkin was agreeable, it could alternatively be, 'The Lipkin Million Dollar Bug Hunt', though that doesn't roll off the tongue so easily.

Just like 'Canary in a Coalmine' and 'Blue Ribbon' don't have ME or CFS in the title, it avoids attracting a lot of side-issue arguments about what to call our disease. Doesn't say 'microbiome' to scare people off who don't know what that is.

A strong contender! :thumbsup:

Sasha February 14, 2014 at 8:28 am
Sasha

Does what it says on the tin – if Dr Lipkin was agreeable, it could alternatively be, 'The Lipkin Million Dollar Bug Hunt', though that doesn't roll off the tongue so easily.

Or, if we wanted to be more formal, we could have 'Million Dollar Pathogen Hunt' or 'Million Dollar Pathogen Study'.

Daffodil February 14, 2014 at 10:09 am

I think the WPI people will publish in the latter part of this year.

But they have already done cutting edge work with sequencing of actual tissue in the last paper.

Dr. Lombardi works 18 hr days trying to crack this. Even Saturdays. Those are some pretty dedicated people.

Simon February 14, 2014 at 10:34 am
:balloons:​

update from Ian Lipkin's lab in Columbia:

As of today, we have 114 donors and a total amount of $11,220 raised for CFS research.

Thanks to all who have donated, and please don't forget to ask friends and family. Also now seems a good time to mention the generous offer from @Wally

Wally

I also realize some people may not have the resources to make a donation. So, I think it is important for each patient to know that they should not feel left out if they simply can't afford to make a donation. I am hoping that maybe we could even set up a buddy system, where those who can afford to donate (and I mean any amount to donate) could be paired with a buddy who would like to make a donation, but is unable to do so right now. It could be an anonymous pairing and/or an anonymous amount for the donation.

For instance if you would like to be my donation buddy, I am volunteering to make a donation on your behalf (pseudo names are fine with me) to Dr. Lipkin's study at https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677. Alternatively, you can select one of the research projects listed on the OMI Foundation site at http://openmedicineinstitute.org/research-initiatives/mecfs-merit/. Or if you really are struggling to decide where you would like a donation to be made, I will split the donation between Dr. Lipkin's project and one project on the OMNI Merit list.

More donors declared – thank you!

Izola

I Phoned Columbia this afternoon. Add me to the tally. Izola

maryb

I donated

Ritto

For the number count, I donated a week ago.

Kati

For the record, I have made a donation to Columbia as well.

Rich D

Donated.

missed off earlier

Sasha

I've donated. :)

Simon

I have just donated

I'm sure I have missed several people so please let me know and I will add your names

Nico February 14, 2014 at 10:40 am
August59

I have read most of this thread, but may have missed this thought. Does anyone know of a list or some other way to solicit organizations and/or possibly companies (especially larger ones) to see if there is a way to acquire matching funds for the funds donated by patients or individuals?

So, the "Microbiome study" did not fall under the original "CFI" funding? Dr. Lipkin has not finished the CFI study has he?

Thanks

#August59: I've been in touch with the administrator of Lipkin's team about alternative fundraising efforts.

We as a community of patients, family, and friends cannot be relied on 100% for all the fundraising around ME. There MUST be a broader reach – we can't rely solely on people who "get it".

I urged them to look at "Global Giving" as a platform.
http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=11648#.Uv5CFV7hOME

Just sent the email off now, so I may not hear back before Monday, I'm guessing.

rosie26 February 14, 2014 at 1:15 pm

The MillionDollarBugHunt jumped out at me too. I like that one. Have been trying to think of names but the ones I keep thinking of are more comical than serious ! I have too much head inflammation at the moment :ill:ugh

bel canto February 14, 2014 at 2:33 pm

I'm not good at this, but just a few ideas….

Ian's Hope

D…..ing for dollars

Gutsy …..

Lipkin's Lament (just kidding)

Something that echoes a familiar title, or a play on words, or just alliteration or a theme.

bel canto February 14, 2014 at 3:00 pm

I'm going to embarrass myself, but I'll throw out a few more:

help for …..

an inner space odyssey

the biome express

Microbiome magic

Microbiome mapping

Funding for friends and family

A bridge to health

Dial M for Microbes

Good Gut Hunting

geraldt52 February 14, 2014 at 4:35 pm

If someone is keeping a record, I made a small donation to Columbia on Wednesday, and have several more people lined up to do the same in the coming days. I will contribute more later, but I want to see it get off the ground.

My suggestion for a fundraising name: The ME Campaign to Help Ourselves. Maybe it would prompt people to ask what that means, and maybe at some point we could shame the government into helping us.

Ember February 14, 2014 at 6:30 pm

Going for the anacronyms — LIFT OFF for ME Research (as in “Lipkin Initiative Funds-in-Trust: an Open Funding Fellowship for ME Research”)

vli February 14, 2014 at 6:41 pm

Answers to queries

As most may know a lot of questions have arisen from the discussion of the article and thanks to @Wally and @Simon I can now give answers to some of the more pressing questions raised.

  • What happens if our $1 million target were not reached?

On Tuesday, Columbia informed me that should this happen that donations would still go towards "ongoing CFS research". As Simon's article stated, this means the white blood cell study that follows Lipkin's initial search in the plasma, plus the gene expression study also mentioned in the article which Lipkin confirmed has already been paid for.

Today, however @Wally has received confirmation from Columbia that Dr Lipkin's office will pass onto him the questions of whether the sample size might, for instance, be reduced from 200 microbiomes–or if the funds might be used in a collaboration with another group like the Open Medicine Institute or CFI–should less than $1 million be raised. If I may take the chance to do so it should be noted here that this is similar to both the Norwegian and UK Rituximab campaigns in that, in those campaigns, there were similar clauses by which if the targeted goal was not reached, any funds raised would still go to other research studies for ME. We are however expecting to raise $1 million and thus have placed this option on the back burner!​

  • There has been some concern that donations from people who omitted to write "microbiome study" in the comment box at Columbia's giving page may not have gone specifically to the microbiome study. Columbia has clarified initially that this study is currently the only ME/CFS project Dr Lipkin is working on and thus, all donations made to "Chronic Fatigue Syndrome" would be directed to the microbiome study and nowhere else. However, to avoid any future confusion we have requested that Columbia change their drop-down menu so that the option specifically said "ME/CFS Microbiome study". We hope this clarifies things for @maryb and others!

Campaign name

If you have joined the crowdfunding group or seen Simon's post on names you will know that we have been trying to come up with a suitable name for our crowdfunding campaign. Currently we have a list of both humorous and serious (most of them raised here) but are in need of something more inspiring and inclusive than what's been suggested–so we should leave out anything too rude or silly! We understand that this is difficult as serious names can be more inclusive and funny names more inspiring but the sooner we have a name, that sooner we can set up a website and create our brand :)

aimossy February 14, 2014 at 10:49 pm

Million dollar bug hunt. I like this suggestion.:)
Im so tired Im blunt at the moment.

aimossy February 14, 2014 at 10:56 pm
biophile

Million4ME is sort of catchy, if a ME criteria is going to be used.

How about Million4MEBug? Too much?

"Time to give a buck".

I really like this too :lol:!!

Previous post:

Next post: