Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients – Part 1 of 9

Part 1 of 9

Background to the Gut Microbiome Study of ME/CFS Patients

Dr Ian Lipkin. Photo courtesy of the Columbia University Center for Infection and Immunity

Dr Ian Lipkin.
Photo courtesy of the Columbia University Center for Infection and Immunity

Dr. W. Ian Lipkin is director of the Centre for Infection and Immunity at Columbia University, New York, and is a world leader in terms of discovering pathogens. He has been described as “The World’s Most Celebrated Virus Hunter”, and as “A Man From Whom Viruses Can’t Hide.”

Columbia University’s website explains that Dr Lipkin & his team “have discovered or characterized more than 500 infectious agents including Borna disease virus, West Nile virus, LuJo virus, human rhinovirus C, piscine reovirus and canine hepacivirus.”

The Chronic Fatigue Initiative (CFI) is a non-profit organisation funded by the Hutchins Family Foundation, and has worked in collaboration with Dr Lipkin and his colleague, Dr Mady Hornig, and other researchers, designing and implementing a large biomedical investigation into chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), looking for pathogens and immune system dysregulation in blood plasma, white blood cells and spinal fluid.

Drs Lipkin and Hornig have now completed a study of blood plasma, and spinal fluid. Their team have not yet found any pathogens clearly related to the disease, but they did discover some intriguing immune biomarkers in the blood plasma and spinal fluid studies, suggesting immune dysregulation in ME/CFS patients.

Dr Mady Hornig. Photo courtesy of the Columbia University Center for Infection and Immunity

Dr Mady Hornig.
Photo courtesy of the Columbia University Center for Infection and Immunity

The results have not yet been published, but Dr Lipkin is excited by them. They relate to changes in levels of cytokines, which are immune-system messenger proteins. He says “I think the cytokine data, that we are putting out are going to clearly demonstrate there is an organic problem here.”

Dr Lipkin believes that this apparent immune system dysregulation must be caused or triggered by an infectious agent, or microbial agents, and he wants to find the agent responsible.

His team is now studying white blood cells from ME/CFS patients and he plans to study the gut microbiome as the next step in a comprehensive research program, with his colleague, Dr Mady Hornig, who is taking the role of principal investigator for the gut microbiome study.

Dr Hornig is the director of Translational Research, at the Center for Infection and Immunity, and Associate Professor of Epidemiology. She is internationally recognized for her clinical research on the role of microbes, immunity, and xenobiotics in relation to disorders such as autism, schizophrenia, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection), attention-deficit/hyperactivity disorder, and chronic fatigue syndrome.

Dr Lipkin and Dr Hornig intend to study the gut microbiome of ME/CFS patients in a wide ranging and rigorous hunt for viruses, bacteria and fungal agents, seeking the cause of the immune dysregulation that they have detected in ME/CFS.

The gut microbiome is the collection of microorganisms that live within the gastrointestinal tract, consisting of bacteria, viruses and fungi.

Columbia University Medical Center campus. Image: http://en.wikipedia.org/wiki/File:ColumbiaMedicalCenter.jpeg

Columbia University Medical Center campus.
New York.
Image: http://en.wikipedia.org/wiki/File:ColumbiaMedicalCenter.jpeg

 


This is a series of blogs based partly on an interview with Dr Ian Lipkin by Simon McGrath in January 2014, in relation to the intended study of the gut microbiome of ME/CFS patients. (To see Simon’s article please click here.)

Please feel free to repost this blog on your own website or Facebook page, etc., but please include a link to the original blog:
http://www.microbediscovery.org/blog/2014/05/19/dr-ian-lipkin-blog-part-1-of-9/
and the donation link:
www.bit.ly/DonateToDrLipkin

 


 

Please join us.

Please join us and spread the word to your family, friends, fellow patients and anyone in your network via your group mailing list, Facebook page, Twitter, or however you can.

Together, we can make a difference!​.

To find out more, please visit the website:
www.microbediscovery.org

To donate, please click here:
www.bit.ly/DonateToDrLipkin

Please join us on Facebook:
www.facebook.com/microbediscovery

And on Twitter:
https://twitter.com/MicrobeProject

Contact us:
info@microbediscovery.org

 


 

Posted in The Microbe Discovery Project blog series

Brooke and Belinda raised $400 by selling books

BrookeAndBelindaThis is Brooke and Belinda (who has been diagnosed with ME/CFS and fibromyalgia since 2001).

They have recently set a book stall at their local community’s annual ‘Booktown’ event in Australia and raised $400 by selling books for Dr. Ian Lipkin’s microbiome study.

Thank you very much – what an inspiration you are!

You can  read more on our Facebook page here - and why not follow the crowdfunding developments on our Facebook page? – www.facebook.com/microbediscovery

Have you done a similar community fundraiser? Or are you planning to do one?  Please get in touch and let us know.

TOGETHER, WE CAN DO IT

Posted in Australia, Crowdfunding, Dr Ian Lipkin, Global effort

Cort Johnson backs the microbiome crowdfunding appeal

Top ME/CFS blogger Cort Johnson has just endorsed the microbiome appeal on his Health Rising website:

The Kitei-Lipkin Interview: Missing Pathogens, Psychosomatic Directors and Serving the Chronic Fatigue Syndrome Community

Writing about the barnstormming interview Dr Ian Lipkin gave to Mindy Kitei, Cort covers Dr Lipkin’s belief that pathogens play a critical role in the illness, and their potential role in the microbiome:

Whether it was a pathogen or toxin or antibiotic or a hormone or whatever – something, Lipkin believes, has likely pummeled the guts of ME./CFS patients into producing substances that are causing them fatigue, cognitive problems, etc. In an upcoming blog we’re going to review a gut altering therapy that caused one ME/CFS patients orthostatic intolerance to virtually disappear in a week.

Once Lipkin finds microbiome abnormalities he’ll correlate them with immune factors and then begin the process of finding treatments. It’s a multi-step project that ends, he believes, in effective treatments for ME/CFS. That’s an exciting vision.

Please support the Crowdfunding effort here and check out the superb website ME/CFS patients have put together to launch it.

Thanks so much for that endorsement, Cort.

The blog then moves on to discuss Lipkin’s strong views on the politics of ME/CFS – that patients should focus their attention on their representatives in Congress if they want to see serious government funds flow into ME/CFS. Cort points out how others have said the most important thing is to have a champion in Washington, including, most recently, Llewelyn King who has urged patients to unite to fund a lobbying effort.

Cort finishes up urging patient not to lose Ian Lipkin:

The Ian Lipkins of the world don’t come around very often for ME/CFS. He’s an opportunity we don’t want to miss… a resource we can’t afford to waste. We had him for a time 20 years ago and then lost him and now he’s back again – for now. He’s a busy man. He’s in demand. Something is always popping up. crowdsourcing Support the crowdfunding project! We want to get as firmly embedded with Dr. Lipkin as we can. We don’t want this to be our year or two with Ian Lipkin before he moves onto something else because he can’t get funding. Let’s support his, or as he said, our microbiome project. (It”s probably worth a million dollars just to keep Lipkin and 60 person Center for Immunity engaged.)Read more: The Kitei-Lipkin Interview: Missing Pathogens, Psychosomatic Directors and Serving the Chronic Fatigue Syndrome Community http://www.cortjohnson.org/blog/2014/05/14/kitei-lipkin-interview-missing-pathogens-psychosomatic-directors-serving-chronic-fatigue-syndrome/

The Ian Lipkins of the world don’t come around very often for ME/CFS. He’s an opportunity we don’t want to miss… a resource we can’t afford to waste. We had him for a time 20 years ago and then lost him and now he’s back again – for now. He’s a busy man. He’s in demand. Something is always popping up.

Support the crowdfunding project!

We want to get as firmly embedded with Dr. Lipkin as we can. We don’t want this to be our year or two with Ian Lipkin before he moves onto something else because he can’t get funding. Let’s support his, or as he said, our microbiome project. (It”s probably worth a million dollars just to keep Lipkin and 60 person Center for Immunity engaged.)

That’s a huge endorsement from Cort Johnson, who is probably the most influential – and certainly the most widely-read – blogger in the ME/CFS world.

Thank you, Cort, from the whole Microbe Discovery Project team.

Read Cort’s blog in full

Read more: The Kitei-Lipkin Interview: Missing Pathogens, Psychosomatic Directors and Serving the Chronic Fatigue Syndrome Community http://www.cortjohnson.org/blog/2014/05/14/kitei-lipkin-interview-missing-pathogens-psychosomatic-directors-serving-chronic-fatigue-syndrome/

Posted in Crowdfunding, Dr Ian Lipkin

More than a Gut feeling – Columbia Uni feature on the crowdfunding appeal

Thanks to Columbia University (home to Ian Lipkin’s Center for Infection and Immunity) for this feature on its website.

More Than a Gut Feeling | News from Columbia Uni’s Mailman School of Public Health

Chronic fatigue patients raise funds for microbiome study by Ian Lipkin

May 12, 2014—Sarah*, an MIT computer science grad, first got sick while working on a software project for an international NGO. Severe cognitive and gastrointestinal symptoms were the first sign of what would eventually be diagnosed as chronic fatigue syndrome. “I went from running a triathlon to being unable to sit up for more than 15 minutes,” she remembers. “I had a promising career working and volunteering in areas that I was passionate about, and now my life has primarily become about survival.”

Sarah is one of more than 17 million people, including one million Americans with the disease, which is also known as myalgic encephalomyelitis, or ME/CFS. On May 12, patients and their families mark International ME/CFS Day, but sadly there is almost nothing known except that the disease involves the immune system and comes on with flu-like symptoms or collapse following exercise. The medical community remains baffled, and some even deny it exists or pigeonhole as a psychological disorder.


Donors from 20 countries have given to the patient-driven campaign at MicrobeDiscovery.org

Patients want answers. Battling through debilitating exhaustion and “brain fog,” Sarah and a group of patients around the world are rallying to raise funds for an ambitious new study led by Ian Lipkin, MD, director of the Center for Infection and Immunity at the Mailman School. So far, they have brought in more than $55,000 from nearly 400 donors in 33 states and 20 countries through the website MicrobeDiscovery.org.

Read the full article

Posted in Crowdfunding, Dr Ian Lipkin, Microbiome

It’s ME Awareness day – & Dr Ian Lipkin speaks out

Today, as you probably know, is International ME Awareness Day. By a happy coincidence*, Dr W Ian Lipkin has given a barnstorming interview to Mindy Keitei at CFS Central: Candid Conversation with Dr. Ian Lipkin

Mindy Kitei: Where can people donate to your research?

Dr. Ian Lipkin: Donate to our research. We’re all in the same boat. We’re trying to find solutions to an important problem, so I want to be very clear to your readers that it is their project. It was organically developed in response to their needs, and their wishes, and we’re eager to serve.

In a wide-ranging and frank conversation, Ian Lipkin also covers

  • why we need to take a broad, unbiased approach to finding a solution
  • how he’s frustrated by those – including reviewers who rejected his funding proposals – who state this is a pyschosomatic illness
  • why he thinks patients need to focus their energies on their representatives in Congress to get more funding from the NIH

Please consider marking ME Awareness Day with a gift to Dr Lipkin’s Microbiome appeal. As he said, it is ‘our’ project, and can only go ahead if patients back it. www.bit.ly/DonateToLipkin

*Actually, the interview went up on Sunday, but I think that’s close enough to count.

Posted in Crowdfunding, Dr Ian Lipkin, Microbiome

We have reached $50,000!

50000totalThank you so very, very much to all our enthusiastic supporters and generous donors for helping us get to this point. Please continue spreading the word to your friends and family and be standing examples of how, united behind one cause, we can make major inroads into the appalling state of biomedical research for ME/CFS today.

Find us on Facebook and share posts from our Facebook page to your Facebook friends, find us on Twitter and retweet our campaign news to your followers.  If you are able do, please consider donating to this important study here.

If you speak Dutch, parts of our website have been translated into Dutch here and Dr. Lipkin’s video appeal in Dutch can be found here.

TOGETHER WE CAN DO IT!

Posted in Crowdfunding, Dr Ian Lipkin, Global effort, Microbiome, Total update

UPCOMING EVENTS

1-2 September, 2014: Dr. Lipkin will be a keynote speaker at the conference of the UK ME/CFS Research Collaborative, which will be held in Bristol.