FAQs

Image courtesy of  Steve Gschmeissner

Microbiome image courtesy of Steve Gschmeissner

How long will it take to do the study?
Dr. Lipkin’s lab specialises in the rapid identification of pathogens and he has already committed a huge amount of his 60-strong team’s time to ME/CFS research. He aims to finish the study within 12 months of it being fully funded.

Can I take part in the study?
No. Patients and controls have already been chosen from a carefully selected group from a previous study.

What diagnostic criteria were used to select patients?
All patients had to fulfil both the Canadian Consensus Criteria and the Fukuda Criteria.

There’ve been gut pathogen studies before. What’s new about this one?
For any study to conclusively establish a link between ME/CFS and any particular microbe or microbes so that the medical world will take the results seriously, the study needs to be large; to look at patients from a wide geographical area; to have patients carefully selected so that we can be sure they have ME/CFS; to have appropriate control subjects; and to use the latest, most sensitive and accurate methods to detect microbes. Dr. Lipkin’s study has all of these features and will build upon previous, smaller studies of gut microbes in ME/CFS. Dr. Lipkin’s laboratory has world-leading expertise in this area.

What kind of treatments might come out of the study?
If gut microbiome problems are identified, treatment will need to be tailored to each patient according to which kind of microbe or microbes are involved. Possible treatments include probiotics (possibly preceded by antibiotics), restriction diets and fecal transplants.

What if we don’t reach the $1.27 million target?
Dr. Lipkin has agreed that if, by 31 December 2014, $1.27m has not been raised, he will use the money raised to develop pilot data that will allow him to be competitive for funds needed to complete the work. He is fully committed to the project.

Is $1.27 million expensive for this kind of study?
No. There are several steps to the study: obtaining the samples from the 200 study participants ($150,000); identifying both the types ($317,000) and quantities ($328,000) of the microbes in the guts of the study subjects; examining those data in relation to cytokine levels in the blood ($86,000); and, crucially, developing antibody tests for important microbes identified in that first stage ($249,000). These stages together will make it a definitive study and one that has the potential to produce diagnostic tests for key microbes. The total cost comes from the sum of those crucial steps.

Won’t the government fund the study? Or a private donor?
The study investigators have already sought funding elsewhere but have been unsuccessful in raising the funds needed for the entire study. They will keep trying, but it’s time for patients to vote with their money and inspire others to give, just as the success of the MEandYou campaign shamed the Norwegian government into fully funding the Haukeland Rituximab trial. Once patients and our supporters start raising substantial amounts and we generate more publicity, we can expect larger donors to be attracted by the momentum. Such a donor came forward and donated $300,000 to the UK Rituximab trial after its supporters had raised $90,000.

I don’t have gut problems. Why should I donate to this study?
It may be possible to have problems with your gut microbiome without clearcut digestive symptoms, so even if you don’t have gut problems, you may well benefit from the results of the study. Also, if gut microbiome problems are identified in the study but you don’t have them, you’ll benefit by having that group of patients identified so that your subset can be studied separately. It is likely that ME/CFS is several diseases and progress will depend on subsets being defined and researched individually.

Does this study involve animal testing?
No. This study consists solely of testing fecal samples and blood from human subjects.

Can I donate via PayPal?
Unfortunately not at this time. We are aware that a PayPal facility would be an added convenience for donors. However, our team is not directly collecting any funds ourselves. All donations go direct to Dr. Lipkin’s team at Columbia University. And the University do not have a PayPal facility. It doesn’t look like this situation will change, but if it does then we’ll be sure to let everyone know. Donations can currently be made by credit or debit card, electronic/wire transfer, and by check/cheque.

Why aren’t you using a crowdfunding website like KickStarter or JustGiving?
For various technical reasons we have not been able to set up a third-party crowdfunding website. At the moment, our crowdfunding team is not directly collecting any funds ourselves, and all donations go direct to Dr. Lipkin’s team at Columbia University. Most crowdfunding websites charge a fee as a percentage of donations made, but all of your donations made via the Columbia University giving website will go directly to Dr. Lipkin’s office to support research. We might decide to use a third-party crowdfunding site at some point during the campaign, if it makes sense to do so, and we’ll be sure to let everyone know if we do.