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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.

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Comments

We do however stand to learn a lot about diseases in which the disease processes are very similar between the animal being studied and within humans. These tend to be diseases which effect bodily organs, tissues or reaction processes that have not changed much throughout evolution - good examples being diseases which affect the organs such as with heart disease, the glands such as hypo and hyperthyroidism and vital biological processes such as respiration and the many diseases which can cause problems here.
Having studied and worked in this area of science for a number of years (species differences in relation to animal 'models') I can tell you with certainty that there are reams of papers that discuss crucial differences that invalidate the entire 'animal model' paradigm. It's unfortunate that a large report I produced for a client in 2010 was not published. I am working on a blogpost specifically relating to the type of animal study proposed here, but it will take a while.

In the meantime here is a small extract from my report that illustrates the general problems and also refers to major heart differences:

A 2008 analysis of 27 reviews examining well over 1,000 animal experiments found that only one – possibly two – of these experiments showed the potential to be useful in advancing medical progress, and not one of the toxicity tests studied was useful in predicting toxicity in humans (Knight, 2008). Another two analyses of substantial numbers of animal studies found that animal research data were only predictive of results in humans about half of the time (Langley, 2009, Perel et al., 2006).

The use of dogs and pigs in highly-invasive heart research which requires their deaths is an example of the error of animal ‘models’, as illustrated in a video lecture (ten Tusscher, 2007). The speaker points out how ventricular fibrillation (VF) – the commonest cause of sudden cardiac death, which is suffered by hundreds of thousands of people every year – appears to be significantly different between human hearts and dog and pig hearts.
The relevant references are:

Knight, A. (2008) Reviews of Animal Experiments Demonstrate Poor Contributions Toward Human Healthcare, Reviews on Recent Clinical Trials, , vol. 3, No. 2, pp. 89-96

Langley, G. (2009) The validity of animal experiments in medical research/validité de l’expérimentation animale en recherche médicale, Revue Semestrielle de Droit Animalier, vol. 1, pp. 161-168

Perel, P., Roberts, I., Sena, E., Wheble, P., Briscoe, C., Sandercock, P., Macleod, M., Mignini, L.E., Jayaram, P. and Khan, K.S. (2006) Comparison of treatment effects between animal experiments and clinical trials: systematic review, British Medical Journal, 334 (7586): 197, online at http://www.bmj.com/cgi/content/full/334/7586/197

ten Tusscher, K., Department of Theoretical Biology/Bioinformatics, Faculty of Biology, Utrecht University (2007) Ventricular Fibrillation in the Human Heart. Why is it different from Fibrillation in the Dog and Pig Heart? Video lecture, text, diagrams and slides online at

http://videolectures.net/eccs07_tusscher_vfh/


I haven't checked the URLs - they may no longer work.

A 50% predictability rate means that one may as well toss a coin.
 
Just uneducated thoughts here.
Part of me wonders about kickstarter because they take a percentage and also there is a time limit....money is lost for the project if it doesn't succeed and we need to make this happen. Well in my view:)
I like the UK invest in ME rituximab face book page because it keeps you updated, plus there is no set time limit so money is not lost. It"s more like a goal to achieve.

Maybe I like the idea of cutting out the middle steps.;)
Anyway, in saying that it might make things slower. I would personally like to see it well plugged and even possibly by ME organisations. New research may publish shortly which could spur things on brightly as well.
Lots of factors to take into account.

I would love to help out @vli but lack the skills/knowledge you probably need for your group.o_O:)
 
Can I just ask was it Lipkin himself who said that depending on what the study finds treatments may involve antibiotics, probiotics and restricted diets? Many thanks
 
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%20newslet%201312-01.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
 
If you watch the last 8 minutes or so of the lecture Dr. Lipkin gave at Oxford last year (originally posted on this thread by Simon in post #24) you can see that Lipkin's interest in the microbiome / microflora and the immune response to infection is not limited to ME/CFS. In the close of his lecture, he discusses immune response and micobiota in the context of other diseases. Jump ahead to 48:25.

 
I'm glad Lipkin is investigating this but I'd like to hear more from him about why they think the microbiome is a cause. I've not heard a reason yet that makes a lot of sense to me other than statements like the gut makes up a huge amount of the immune system. That is true but so does the skin. It is a non-specific statement.

I do believe that some subset of people do have the gut as a starting point (for example people who started their illness with an enterovirus infection) and others have the gut affected as part of their illness if not the starting point. However, I don't think this will be the origin for others. However, I don't mind being proven wrong at all.
I agree that the microbiome is unlikely to account for everyone's illness - indeed I doubt that any one thing could account for everyone's illness and I suspect even ME (let alone CFS) will turn out to be multiple diseases.

While there is certainly a degree of non-specificity in this approach - 'the immune system is activated, so who or what pulled the trigger?' is part of the rationale,I think it's worth pointing out that the gut microbiome is a much better candidate than, say. the skin. So it's not quite a case of 'could be this, could be anything'. here's a bit more info:
- there are more microbes in the gut than anywhere else in the body, by a trillion or so.
- there are way more immune cells in the gut than anywhere else in the body
- the gut has - has to have - a permeable lining to take food on board, making the contact between immune system and gut particularly itimate.
- there is an intimate and complex relationship between the microbiome and the gut immune system that is only beginning to be understood. For example, in gnobiotic mice (raised in sterile conditions, with no microbiome as a result), the immune system doesn't develop properly - in particular it doesn't regulate itself properly and is prone to inflammation. Interesting article on this from Science Daily
- and of course many people with ME/CFS have gut problems such as food sensitivity.

The gut microbiome is an exploding area of research and being linked to a number of diseases. This blog has more information Gut bugs misbehaving? The microbiome and ME/CFS

Can I just ask was it Lipkin himself who said that depending on what the study finds treatments may involve antibiotics, probiotics and restricted diets? Many thanks
Yes, that's what Lipkin said - the antibiotics were as in 'antibiotics followed by probiotics', since antibiotics will wipe out much of the microbiome. He also mentioned faecal transplants were a possiblility - certainly they were used very successfully to treat drug-resistant C difficile infections. But exactly what treatment is appropriate (if any) will depend on the findings of this research.
 
The animal model does have problems as they always tend to, but it seems to me that it plays a relatively small role in this study overall. From a personal standpoint I'm not yet convinced that this is where the true problem in ME/CFS lies, but I think it's certainly worth studying further and I couldn't think of many researchers better to do it than Prof. Lipkin.
Hi Legendrew - very interesting post. Just to be clear, the animal model plays no role at all in the study we're being asked to fund. Lipkin said that an animal model is one option that he might consider, depending on the results of the study. And, depending on which, if any, bugs are associated with ME, it might make more sense to go straight to therapeutics - the animal model stuff might never happen.
 
If you watch the last 8 minutes or so of the lecture Dr. Lipkin gave at Oxford last year (originally posted on this thread by Simon in post #24) you can see that Lipkin's interest in the microbiome / microflora and the immune response to infection is not limited to ME/CFS. In the close of his lecture, he discusses immune response and micobiota in the context of other diseases. Jump ahead to 48:25.

Forbes - cool lecture wasn't it? I thought when I watched it 'where the heck is he going with it?' expecting more of a science lecture, but I think he made the points well, and I have to mention to @Bob because I forgot to (when Simon drew my attention to the lecture whilst working on the article), that Lipkin also uses the Star Trek scanner as an example of what might be possible in the very near future! :)

But yeah, I think focusing on the last section of the presentation is probably best for relevancy on this thread. Interesting when you stop and think about the things we eat - not that they might be carrying some infection per se - but in the vast array of good and bad that could be present in our guts. I'd be interested to learn - if nothing else - what differences and similarities might be found in comparison with the controls.

It's like Star Trek again: ...to boldly go where no one has gone before... :thumbsup:
 
Very true! I think they raised the money first over a considerable period of time (2 years?) before deciding what to spend it on (somebody correct me if I'm wrong). It would be interesting to know what would have happened if they'd specified the project beforehand. I think that's crucial to rapid success - an exciting project that everyone wants to get behind.

But you're right, £100k is a lot (about $150k) and the UK is only about 63 million people - a fifth the population of the US. The US (and us overseas patients donating too) should be able to crack $1 million in about five minutes. :cool:
Hi Sasha, I'm new to the forum, so I hope I'm doing this right :) I'm very pleased to let you know that, far from raising funds before deciding what to spend it on, the fundraising for the Invest in ME/UEA gut microbiome study was the first of such campaigns to set a target amount for a specified research project and was initiated by patients. This was a new approach to fundraising for ME research and these factors contribute to why it took almost two years to raise the initial £100k. The Let's do it for ME! campaign was launched in July 2011 by three people with severe ME to a) help raise awareness of Invest in ME's proposal to establish a centre of excellence for translational biomedical ME research: the first of its kind in UK/Europe and b) raise funds for the research. We set the initial fundraising target at £100k to fully fund the foundation project of the research strategy - the gut microbiome study, which Professor Simon Carding will speak about at the 2014 IiME conference (IIMEC9). Invest in ME also produced their gut study posters to help advertise this. We formed a core online planning group to develop the campaign and now have a global community of supporters and we proactively support other ME advocacy and fundraising campaigns and causes. IiME's announcement at their conference last May (IIMEC8) that the initial fundraising target had been acheived was a great boost to get us up and running (so to speak!) with phase two of the fundraising: for the UK rituximab study being organised by Invest in ME with the Clinical Trials Unit at University College London :)
 
Things seemed to have calmed down a fraction after a manic 24 hours or so, a chance to say thanks to everyone who is making this happen

Rolls of honour

Donors declared on this thread
I am in and I will tell my friends and family!
I've just donated.
I will certainly donate
I donated to Maria's Norwegian Rituximab thing... and I'll be donating to this one too.
I don't think I have donated to a specific research project for several years. Funds never really permitted me to. But this one has just received a donation I am delighted to report :balloons:
I'll be sure to make a donation at the end of the month, even if it's not a big one. (That way I'll be able to take some credit if it leads to a useful treatment!)
I am happily in!
Hi, all. I've just donated from Australia. ... I'll donate again if it looks like getting up through crowd sourcing.
Also @Wally and @biophile say they are considering but need a bit more info.

Initial Team
Vanessa Li (@vli) started this whole thing off by contacting Ian Lipkin's team, which led to the offer of the interview. She, @Firestormm and @Sasha spent countless hours over the last month discussing the research project, how best to explain it, getting the extra info we needed from Columbia, discussing timing and crowdsourcing plans, and more (especially editing - thanks Fire). It was an unbelievable amount of work for everyone, and sometimes it seemed we'd never get there. Thank you all - esp Vanessa without whom nothing would have happened and who has pushed on despite very poor health.

The fundraising group: Lipkin's $1 million dollar appeal
Currently has 25 members signed up. I think this group is essential if we are to hit the million dollar target. Thanks to all who have joined and still room for more!

Everyone on this thread
Wow, 1,764 views, 68 comments and 206 'Recommended' on facebook - zero is the normal number for recommendations of the thread (as opposed to the blog itself).
upload_2014-2-11_17-24-51.png


Dr Ian Lipkin
Well, obviously for the study, but also for being generous with his time for the interview: nearly thre-quarters of an hour with someone who clearly had never interviewed anyone before :whistle:. Also to Dr Mady Hornig who will be Principal Investigator on the project and has done much of the planning work.

Thank you - and take a bow all
 
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Things seemed to have calmed down a fraction after a manic 24 hours or so, a chance to say thanks to everyone who is making this happen
Thanks, @Simon - actually I don't recall doing much in the 'making it happen' stakes but I've donated. :)

Thanks to you (you did't thank yourself!) for all you've done on this project - you're a star. :thumbsup:
 
Hi Sasha, I'm new to the forum, so I hope I'm doing this right :) I'm very pleased to let you know that, far from raising funds before deciding what to spend it on, the fundraising for the Invest in ME/UEA gut microbiome study was the first of such campaigns to set a target amount for a specified research project and was initiated by patients.
Thanks, Jo - good to know. :)
 
This is brilliant, thanks so much to everyone involved, donated and will pass on. I agree with others it would be good if we could see a thermometer to see the money coming in.
 
The AIDS community needs to step forward on this project! When your butts were on the line, many non-AIDS people within the community of Caring People sprang forward to your assistance. I was one of them, and my entire family has contributed to Aids treatment since the beginning: 1982.

Now, it would say "Thank You" to all those who aided your cause, by all of you paying it forward to our millions who now are suffering from ME. God knows, we need the help.

It's a challenge you all should warmly embrace. The opportunity to be of service is a blessing.
 
The AIDS community needs to step forward on this project! When your butts were on the line, many non-AIDS people within the community of Caring People sprang forward to your assistance. I was one of them, and my entire family has contributed to Aids treatment since the beginning: 1982.

Now, it would say "Thank You" to all those who aided your cause, by all of you paying it forward to our millions who now are suffering from ME. God knows, we need the help.

It's a challenge you all should warmly embrace. The opportunity to be of service is
The Opportunity to be of Service is, A Blessing.
 
Things seemed to have calmed down a fraction after a manic 24 hours or so, a chance to say thanks to everyone who is making this happen
@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:
 
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 :)
 
Thanks OverThehills. I consulted dr m and also found her very dogmatic re stone age diet. Low carb makes me feel very ill too. I do better with some starch. I probably would do better without the sugar but it's my small daily treat. Sorry for going off track
I have great respect for Dr. Myhill, but the notion that there is or should be 'one' diet for all people, sick or not, just defies common sense. Increased levels of carbs are recommended by many if one has cortisol issues…which many of us have.