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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.

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


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Comments

It looks like Dr Lipkin has read neither http://www.cortjohnson.org/blog/201...eding-good-bacteria-chronic-fatigue-syndrome/ nor http://cfsremission.wordpress.com/ where links to pub med studies showing the results that he seems to be seeking. While duplication of prior results is good, it also delays the time to a cure.

I would strongly recommend people do http://americangut.org/ first, before donating. This allows you to put your gut bacteria available to more researchers -- especially those skilled in handling BIG DATA, which is not one of Dr.Lipkin's qualifications. It is likely a faster path to a cure for all.
I've written about some small scale mecfs microbiome research here (Gut bugs misbehaving? The microbiome and ME/CFS), but its' not on the scale of Ian Lipkin's new study and none of which has produced a 'prior result' that would guide treatment trials. If I've missed something, please let me know. Ian Lipkin is talking about results 'within a year' from this study, which I find very encouraging

As for Big Data, I agree it needs the right expertise and it's not one of Lipkin's qualifications - but he has assembled a team of biostatisticans at Columbia, precisely to tackle this kind of work.
I'm all for people taking part in the American Gut Project and it could be a good starting point but strict diagnostic guidelines are a big deal for ME and I can imagine a lot of people with undiagnosed primary depression or idiopathic chronic fatigue who've been given a binbag 'CFS' diagnosis by an incompetent primary care physician messing up any attempt by us to piggyback on such a project.

I think we need to support Lipkin's study. Let's get that money flowing in! :)
I agree with Sasha about diagnosis (and am equally happy for people to take part in the Amercian Gut Project) - the patients in this study have very carefully diagnosed (Canadian Consensus Criteria) and the diagnosis is confirmed before new samples are taken.
 
I'm in. We are fortunate to have a researcher of Dr. Lipkin's caliber focusing on ME/CFS. Let's get behind this research in a big way!
Looking at the past history of ME/CFS funding you'd have to say that nobody is going to do it for us.
 
Thanks Simon

I've just donated.

I feel that we are enormously fortunate to have someone of Ian Lipkin's calibre working on our 'little syndrome' and for as long as he's here we should use him to the max.

If we can't pull together and treat this as a priority then why expect anyone else to. Short of cash? Think of what you may have spent in the past or might spend in the future on all sorts or 'treatments. Have they worked?

PS - Thanks also for sorting out my evening viewing.

I've just dug the Contagion DVD out again : )
Terrific, Marco, thank you. That's an interesting point about how much many of have spent on treatments that have gone nowhere (certainly I have been down that route).

If you really want theme viewing you can watch Ian Lipkin's lecture at Oxford last year - a good chunk of which is about Contagion as well as some really bad science movies:
 
@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.
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. ;)
 
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Great article, Simon, and many thanks to Vanessa for getting the fundraising underway. I've just donated.

I think we could get this funded very quickly. Maria Gjerpe's campaign raised $500,000 in three months and shamed her government into fully supporting the Norwegian Rituximab study. Norway's population is 5 million; the US's population is 314 million, which is over 60 times as large. Look how quickly Jen Brea's Canary in a Coalmine fund raised $200,000 - less than a month. There's serious money spread across our enormous community and our supporters, if we see a project that we want to support.

In the last year we've seen several highly successful projects that very rapidly reached their funding goals - Norwegian Rituximab, UK Rituximab (all there bar the shouting, given the large MEA pledge), Ryan Prior's Blue Ribbon, Jen Brea's Canary and most recently the OMI's B12 study (almost there with $125,000 out of the $150,000 raised in just a few weeks) - and they've one big thing in common: they've been for specific projects, not just calls to pour cash into some charity's bottomless general research fund. And all of a sudden, sums of money that we previously wouldn't have thought possible have been donated, and the many small donations of patients and supporters have often stimulated big donations from other sources.

We can do this, and we can do it fast. We've already been doing it with these other projects.

Please donate, and do it now!
And invest in me managed to raise £100,000 for a gut study that is happening now too :)
 
And invest in me managed to raise £100,000 for a gut study that is happening now too :)
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:
 
I'm very interested that Lipkin thinks treatments might involve restricted diets amongst other things. I've always caused myself a lot of stress and angst about diets. Mainly because I am not convinced enough to have the willpower to stick to them and then I feel guilty. However, if it was proven that a restricted diet could definitely help I might finally summon up enough willpower to follow one

I will certainly donate

I remember reading of a young woman who went to KDM in Belgium. She hadn't been ill for very long and he, like he does with many of is his patients, put her on a rotation of antibiotics and probiotics. She completely recovered. Yet I have heard of others who have had similar treatment of abx and probiotics from KDM with some improvements, not always, but not full recovery. I wonder if treating the gut early on in the illness increases the chance of full recovery before the downstream changes of long term immune system activation, I think it's great that someone of Lipkin's calibre is interested in our illness. I hope we can raise the funds
 
I'm very interested that Lipkin thinks treatments might involve restricted diets amongst other things. I've always caused myself a lot of stress and angst about diets. Mainly because I am not convinced enough to have the willpower to stick to them and then I feel guilty. However, if it was proven that a restricted diet could definitely help I might finally summon up enough willpower to follow one
No reason at all to feel guilty for not sticking to diets that do not have good evidence of benefit! There are so many things that could be helpful, but could be unhelpful or worthless than PWCs could drive themselves crazy if they felt pressured to do them all!
 
My philosophy is to regard everything I try - supplements, prescribed drugs, diet changes like a lottery ticket. Give it a go.

Nowadays I'm careful not to put too much investment in (ie more belief, money, or effort than I can afford) , see what happens, sometimes I get lucky sometimes I don't. I have been fairly lucky and got some really good results. It works for me because its good to have a supply of low-grade hope.

I donated to Maria's Norwegian Rituximab thing (and maybe the UK one too, can't remember) and I'll be donating to this one too. More lottery tickets.
OTH
 
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.
How refreshing, after the interview with Dr. Unger!
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.
Dr. Lipkin may lose out to this kind of thing...
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.
I believe that Dr. Lipkin used the CCC in defining his cohort. Would he be willing to elaborate?
 
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Overthehills, my problem is food is one of my only pleasures left and it would take a lot of will power for me to keep to diet strictly. I managed one ten years ago for three months and it was so hard. I did feel a bit better for a short time. However, to cut out all my favourite foods ans really tackle my cravings I would have to b convinced it would work

Other treatments I do have the philosophy of let's give it a go with no great expectations but diet is different for me

@esther, thanks for your absolution, it is appreciated. Would you only go down the restricted diet route if Lipkin showed good evidence it would benefit? I think if I. Am honest to myself I would only manage it if I was presented with good evidence for the Benefits of denying myself foods I enjoy. I don't eat much gluten as causes upset tummy but apart from that I don't cut anything else out at the mo
 
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:

This project, the interview, the many discussions, the sharing of concerns with Columbia, and the final article itself, have taken more time to put together than I think anything else I have worked on since joining Phoenix.

It is well worth supporting this effort I think. I was skeptical at first - as is my want - but I do think this is a very necessary area to investigate - along with the continuing cytokine work.

ME Science is turning the corner and I have started to feel more positive that something will come of all these high-powered and significant studies.

It's been a 14 year sentence for me thus far, it's great to finally be seeing scientists of caliber appear so confident about my disease. Hell, even my father was convinced - and that takes some doing, believe me :)

N.B. Don't forget when donating, to specify that you would like your money to go to the Microbiome Study. Just to be doubly sure it gets to the right one :thumbsup:
 
Overthehills, my problem is food is one of my only pleasures left and it would take a lot of will power for me to keep to diet strictly. I managed one ten years ago for three months and it was so hard. I did feel a bit better for a short time. However, to cut out all my favourite foods ans really tackle my cravings I would have to b convinced it would work

Other treatments I do have the philosophy of let's give it a go with no great expectations but diet is different for me
I know exactly what you mean. I saw Dr Myhill and she is completely dogmatic about a Paleo diet. It was really hard to get the mental energy together for something like that, and at the time I was so sick that food was one of the very few pleasures left. The paleo diet made me feel worse by the way! anyway I'll stop going OT now - hope those who can will support this appeal..
 
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,

At the time invest in Me said they wanted to set up the first research centre and clinic for pwme in the UK at East Anglia university which would offer research then translational (is that the right word?) treatments to patients. So there was a target so to speak which is why I think people got behind it. As it happens the money is going towards the gut study at the. University. Am not sure where they are at at getting a doctor to see patients. I think they are having problems with the university to agree to it. I think it took about 18 months to raise the money, but perhaps it was 2 years, sorry can't remember
 
I know exactly what you mean. I saw Dr Myhill and she is completely dogmatic about a Paleo diet. It was really hard to get the mental energy together for something like that, and at the time I was so sick that food was one of the very few pleasures left. The paleo diet made me feel worse by the way! anyway I'll stop going OT now - hope those who can will support this appeal..
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
 
@esther, thanks for your absolution, it is appreciated. Would you only go down the restricted diet route if Lipkin showed good evidence it would benefit? I think if I. Am honest to myself I would only manage it if I was presented with good evidence for the Benefits of denying myself foods I enjoy. I don't eat much gluten as causes upset tummy but apart from that I don't cut anything else out at the mo
lol - happy to help! I'm really not keen on trying anything unless there's good evidence it will actually be helpful. I think that living with a health problem is hard enough already, and I don't want to waste time and energy on needlessly medicalising extra parts of my life. I prefer to just play about and do what I feel like, and tbh, I think this is probably marginally better health-wise too.

I understand why other people want to try different things just in case the happen to find something that works, but I don't think that this approach should be seen as 'better' or more noble than mine. It is easy to slip into thinking that if you're ill you have a responsibility to recover (and this is sometimes laid out as an explicit part of the biopsychosocial model of disability), but I really don't think that's reasonable if there's no good evidence for how to recover - it just becomes an unfair pressure.

Anyway, best of luck to all, however we decide to manage things. Hopefully researchers like Lipkin will progress in a way which means that we no longer need to work out how to best live with on-going health problems!
 
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This project, the interview, the many discussions, the sharing of concerns with Columbia, and the final article itself, have taken more time to put together than I think anything else I have worked on since joining Phoenix.
Thanks and congrats to all those involved.

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'm in. We are fortunate to have a researcher of Dr. Lipkin's caliber focusing on ME/CFS. Let's get behind this research in a big way!
Looking at the past history of ME/CFS funding you'd have to say that nobody is going to do it for us.
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. ;)
How refreshing, after the interview with Dr. Unger!
Dr. Lipkin may lose out to this kind of thing...
I believe that Dr. Lipkin used the CCC in defining his cohort. Would he be willing to elaborate?
It occurred to me that the more we can raise a patients for this study, the more it would help put pressure on those in authority with the money - just as MEandYou helped persuade the Norwegian government and research boards to fund the Rituximab trial.

I'm strongly in favour of advocacy (thanks @Wally for all you do) and wonder if the money we give, as well as our voices, can help pile on the pressure.

(@Ember Dr Lipkin said he's planning to use a NIH cohort - pretty sure that was the one recruited for the XMRV study but made available for other studies too and I thought that used CCC - but presume you would know.)