Interview: Ian Lipkin's Million Dollar Appeal for Microbiome Study
February 10, 2014
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
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.
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
The same could be true of other ME/CFS symptoms including disturbed
sleep and brain dysfunction which again are typical symptoms of immune
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.
... 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.
... The potential to treat disease by restoring the microbiome is one
reason this area of research is attracting so much attention.
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
1. Sample collection: $150,000
2. Faecal Microbiome sequencing and Analysis: $317,000
3. Development of highly-accurate real-time PCR assays to confirm
findings and levels of microbes: $328,000
4. Cytokine analysis: $86,000
5. Development of antibody tests for important bugs identified by the
microbiome work: $249,000
... 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.
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
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
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!"
"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."