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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

SB_1108

Senior Member
Messages
315
I didn't know it was possible for me to feel more vested in the microbe research (because I already felt like it would lead us to determine the cause/treatment of our disease) yet I sit here thinking... We can't let all of Vanessa's efforts go in vain!!!

I did not know Vanessa but I understand her decision. I can't blame her at all. I was so disappointed that Dr. Lipkin's study did not obtain the funding it needed. Checking the total each and everyday, watching the total raise so slowly, trying to mentally prepare myself that it may not meet the goal - it was devastating. And for her to work so hard to help raise the funds... I just imagine that was extremely difficult for her! With no research funding and no chance for a cure, I understand and it breaks my heart!

I'd love to hear more from Dr. Lipkin about this and any additional plans to obtain the remaining funds!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Microbe Discovery Project said:
Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness

Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment


NEW YORK (Feb. 27, 2015)—Researchers at theCenter for Infection and Immunityat Columbia University’s Mailman School of Public Health identified distinct immune changes in patients diagnosed with chronic fatigue syndrome, known medically as myalgic encephalomyelitis (ME/CFS) or systemic exertion intolerance disease. The findings could help improve diagnosis and identify treatment options for the disabling disorder, in which symptoms range from extreme fatigue and difficulty concentrating to headaches and muscle pain.

These immune signatures represent the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder, and the first evidence that the disease has distinct stages. Results appear online in the new American Association for the Advancement of Science journal,Science Advances.


With funding to support studies of immune and infectious mechanisms of disease from the Chronic Fatigue Initiative of the Hutchins Family Foundation, the researchers used immunoassay testing methods to determine the levels of 51 immune biomarkers in blood plasma samples collected through two multicenter studies that represented a total of 298 ME/CFS patients and 348 healthy controls. They found specific patterns in patients who had the disease three years or less that were not present in controls or in patients who had the disease for more than three years. Short duration patients had increased amounts of many different types of immune molecules called cytokines. The association was unusually strong with a cytokine called interferon gamma that has been linked to the fatigue that follows many viral infections, including Epstein-Barr virus (the cause of infectious mononucleosis). Cytokine levels were not explained by symptom severity.

“We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead authorMady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School. “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers.”

There are already human monoclonal antibodies on the market that can dampen levels of a cytokine called interleukin-17A that is among those the study shows were elevated in early-stage patients. Before any drugs can be tested in a clinical trial, Dr. Hornig and colleagues hope to replicate the current, cross-sectional results in a longitudinal study that follows patients for a year to see how cytokine levels, including interleukin-17A, differ within individual patients over time, depending on how long they have had the disease.


Stuck in High Gear
The study supports the idea that ME/CFS may reflect an infectious “hit-and-run” event. Patients often report getting sick, sometimes from something as common as infectious mononucleosis (Epstein-Barr virus), and never fully recover. The new research suggests that these infections throw a wrench in the immune system’s ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear. “It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,” says Dr. Hornig. “Early diagnosis may provide unique opportunities for treatment that likely differ from those that would be appropriate in later phases of the illness.”

The investigators went to great lengths to carefully screen participants to make sure they had the disease. The researchers also recruited greater numbers of patients whose diagnosis was of relatively recent onset. Patients’ stress levels were standardized; before each blood draw, patients were asked to complete standardized paperwork, in part to engender fatigue. The scientists also controlled for factors known to affect the immune system, including the time of day, season and geographic location where the samples were taken, as well as age, sex and ethnicity/race.

In 2012, W. Ian Lipkin, MD, director of the Center for Infection and Immunity, and colleagues reported the results of a multicenter study that definitively ruled out two viruses thought to be implicated in ME/CFS: XMRV (xenotropic murine leukemia virus [MLV]-related virus) and murine retrovirus-like sequences (designated pMLV: polytropic MLV). In the coming weeks, Drs. Hornig and Lipkin expect to report the results of a second study of cerebrospinal fluid from ME/CFS patients. In separate ongoing studies, they are looking for “molecular footprints” of the specific agents behind the disease—be they viral, bacterial, or fungal—as well as the longitudinal look at how plasma cytokine patterns change within ME/CFS patients and controls across a one-year period, as noted above.

“This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior authorW. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction.”

Co-authors include Andrew F. Schultz, Xiaoyu Che, and Meredith L. Eddy at the Center for Infection and Immunity; Jose G. Montoya at Stanford University; Anthony L. Komaroff at Harvard Medical School; Nancy G. Klimas at Nova Southeastern University; Susan Levine at Levine Clinic; Donna Felsenstein at Massachusetts General Hospital; Lucinda Bateman at Fatigue Consultation Clinic; and Daniel L. Peterson and Gunnar Gottschalk at Sierra Internal Medicine. The authors report no competing interests.

Discuss the news on the main thread here *** [to be inserted]

If you want to help leverage this to call for donations, NIH funding and congressional support, see this thread.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Dr Mady Hornig will be answering questions re ME/CFS on Reddit Science.
Friday 6th March, 1pm Eastern Time:
http://www.reddit.com/r/science/

People should be able to post questions and comments starting in the late morning, Friday, and Dr Hornig will start answering questions at 1pm Eastern Time.

I think we should get a specific weblink for the discussion nearer the time.

Note that, as far as my understanding goes, reddit users get to vote on the questions that Dr Hornig will eventually answer. Users can ask questions and also vote questions up and down on a list. I believe that the top questions on the list will be answered. So, getting involved will help get decent questions asked and answered.

New forum thread:
http://forums.phoenixrising.me/inde...ma-with-dr-mady-hornig-march-6th-at-1pm.35986
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
The reddit Q&A session with Dr Mady Hornig was a great success today. We made it onto the reddit homepage, which means that the discussion will be seen by many reddit users, which will give ME/CFS a good deal of publicity.

The full discussion thread on reddit is here:
http://www.reddit.com/r/science/comments/2y4ph4/science_ama_series_im_professor_mady_hornig_at/

Mady Hornig's answers are listed here:
http://www.reddit.com/user/Prof_Mady_Hornig

And these are links to each of Mady's answers, in case helpful:
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6g774
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6gm0e
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6gvbz
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6h8tg
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6hmj6
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6hsst
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6i241
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ia1x
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ih6c
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ite6

And a dedicated Phoenix Rising discussion thread, for the reddit session, is here:
http://forums.phoenixrising.me/inde...ma-with-dr-mady-hornig-march-6th-at-1pm.35986
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Reading Mady Hornig's answers on reddit, makes me think that we definitely "backed the right horse", as the saying goes, supporting this crowdfund. A number of other researchers are equally worthy of support, but this makes me really pleased that we've supported & encouraged Drs Lipkin and Hornig. Demonstrating our support to them is a massive win for our community. I'm totally impressed with their plans. I wasn't aware of a lot of the stuff that Mady has mentioned in her answers - Their research plans keep on growing and growing, and they add something new each time they discuss it. e.g. They now have plans to look at NK cells, with a new technology. And autoimmunity is a central theme of their research plans. It seems so promising to have these world-class researchers on board, exploring so many research avenues.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Reddit's "Ask Me Anything" session with Dr Mady Hornig.

To make them easier to read and print, we've collated all the Questions and Answers from the Reddit session, and created an easy-to-view format.

There are two links below. One takes you to a simple webpage where the Q&As can be viewed/printed, and the other link takes you to a google doc that can be viewed/printed or downloaded in various formats (e.g. word or PDF).

Webpage:
https://docs.google.com/document/d/1GzZn9MjBWnt9TQqNy0lYZBvU_XWgWMg7DYZAypeDm_A/pub

Google document:
https://docs.google.com/document/d/1GzZn9MjBWnt9TQqNy0lYZBvU_XWgWMg7DYZAypeDm_A/edit?usp=sharing
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is not directly related to the Microbe Discovery Project but we think it's important...

There's a dedicated forum thread for this project, here:
http://forums.phoenixrising.me/inde...tality-survey-can-you-help.36320/#post-574337

Microbe Discovery Project said:
Research - Please Help - Global Mortality Survey

This is very important research being done at De Paul University. Professor Leonard Jason, Abigail Brown and Billie Moore have an online mortality research survey and really need your help getting it to appropriate people. Professor Jason was one of the most cited researchers in the recent Institute of Medicine report on ME/CFS, and their research work is very respected. It is very hard to reach the appropriate people, most are not tuned in to the various social media or blogs.

We know this is a sensitive subject , so please read the information in the link provided below. ME/CFS mortality and people's losses with respect to this illness can be invisible - this research can help change that.

The researchers are trying to find more family members, friends and/or caregivers of people who had ME or CFS and who have passed on for any reason. You can help by sharing this survey around our global community and by alerting organisations to use their networks to get this survey to appropriate people who may be willing to participate. Please alert support groups as well. Residents of any country are welcome to participate in the survey. We can all help and make this research strong with a large number of participants!

Feel free to share this text and the linked survey information. It isn't often we have a chance to help research, please do so, research into this illness is desperately needed.

http://bit.ly/MECFSstudy
 

aimossy

Senior Member
Messages
1,106
Fundraising update

A further $9,327 has been raised for Columbia CII and donations keep coming. This is great news!
Together we funded a study and the community is continuing to support Columbia CII ME/CFS research by making donations! Thank you all so much! Go research! Please donate if you can, every dollar counts for ME/CFS.
www.bit.ly/DonateToDrLipkin

936696_774835145918855_8152872269275983357_n.jpg
 
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aimossy

Senior Member
Messages
1,106
A Microbe Discovery Post from Facebook:

WOW! It could not be held back any longer for May 12 and it is Kicking off! You may have heard about the Chilli M.E Challenge! People are already choosing to take up the Challenge. You couldn't hold back these four wonderful woman from doing something fun, that could make a difference! Check out this article.
http://connachttribune.ie/all-fired-up-for-latest-awarenes…/

Thank you so much Lindsey (L.A.), Nicola ( Ireland), Brenda (Texas) and Catherine (UK). They have asked people to make their donations to ME/CFS research.... They would like the donations to go to Invest in ME in the UK and Columbia University CII in the USA. We are so grateful! GO GIRLS!

Are you brave enough to do this challenge, post to your FB page, donate and nominate? Can we get friends and family to take the challenge? Let's do it for May 12 and awareness. Tip: Choose the type of Chilli wisely! :)

Check out their donation page on their blog here!
https://chillimechallenge.wordpress.com/donate-here/

If you take up the challenge in the UK and donate to Invest in ME you can do so through the following text option: CMEC73 to 70070 for £4 donation. Online donation link provided on their donation page above.
Quick link online donation to Columbia CII ME/CFS is here: www.bit.ly/DonateToDrLipkin

Yes, you can do this challenge and donate from any country :)

More ME/CFS research causes are being added.
 
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aimossy

Senior Member
Messages
1,106
The Microbe Discovery Project Team

Many thanks to ME CFS Alert - Deborah Waroff, Llewellyn King and of course Dr Hornig!
Here is the Part 2 interview regarding their recent landmark paper on cytokines in blood plasma is now available to watch!

"Dr. Mady Hornig sits down with cohost Deborah Waroff to discuss the implications of her groundbreaking research into M.E., or myalgic encephalomyelitis."