• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Cheesus

Jen Brea is very supportive of this campaign - she has featured our website and the campaign itself on the Canary Facebook page and will be taking her camera team into Columbia to interview Dr Lipkin later in the Spring (exact dates to be confirmed).

I have been trying to arrange a conference call between myself and a couple of members from the team, and Jen, but she's one busy lady - though hopefully something can be sorted out this next week. As you say, she has a strong following and many terrific ideas that she's willing to share with us.

We are in the process of producing posters and material that can be downloaded and printed off, so people can help promote the campaign locally. A case of 'watch this space' but hopefully we can provide you with something neat fairly soon.

My fingers are crossed for you and Euromillions :)
 
Violeta

Violeta

Senior Member
Messages
2,945
I just found this here:http://cii.columbia.edu/blog.aspx?cid=GMjPiJ



W. Ian Lipkin, Director of the Center for Infection and Immunity and John Snow Professor of Epidemiology at the Mailman School of Public Health, has received an award of up to $31 million over a five-year period by the National Institutes of Health (NIH) to establish the Center for Research in Diagnostics and Discovery (CRDD) under the auspices of a new National Institute of Allergy and Infectious Diseases (NIAID) program entitled Centers of Excellence for Translational Research. The CRDD brings together leading investigators in microbial and human genetics, engineering, microbial ecology and public health to develop insights into mechanisms of disease and methods for detecting infectious agents, characterizing microflora and identifying biomarkers that can be used to guide clinical management.

Does anyone have any information on this?
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Violeta said:
I just found this here:http://cii.columbia.edu/blog.aspx?cid=GMjPiJ

W. Ian Lipkin, Director of the Center for Infection and Immunity and John Snow Professor of Epidemiology at the Mailman School of Public Health, has received an award of up to $31 million over a five-year period by the National Institutes of Health (NIH) to establish the Center for Research in Diagnostics and Discovery (CRDD) under the auspices of a new National Institute of Allergy and Infectious Diseases (NIAID) program entitled Centers of Excellence for Translational Research. The CRDD brings together leading investigators in microbial and human genetics, engineering, microbial ecology and public health to develop insights into mechanisms of disease and methods for detecting infectious agents, characterizing microflora and identifying biomarkers that can be used to guide clinical management.

Does anyone have any information on this?
Click to expand...
This has been mentioned on the forum:
http://forums.phoenixrising.me/index.php?threads/ian-lipkin-receives-a-31-million-nih-grant.28859/

Unfortunately, none of the money is allocated by the NIH for ME/CFS research.
The NIH turned down Dr Lipkin's grant application for ME/CFS research.
 
Violeta

Violeta

Senior Member
Messages
2,945
Bob said:
This has been mentioned on the forum:
http://forums.phoenixrising.me/index.php?threads/ian-lipkin-receives-a-31-million-nih-grant.28859/

Unfortunately, none of the money is allocated by the NIH for ME/CFS research.
The NIH turned down Dr Lipkin's grant application for ME/CFS research.
Click to expand...

Yes, I read about NIH turning down Dr. Lipkin's grant application for ME/CFS. Someone had been contacting Dr. Lipkin about that to find out which group reviewed and turned down his application. Do you know if he ever did reply to that?
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Violeta said:
Yes, I read about NIH turning down Dr. Lipkin's grant application for ME/CFS. Someone had been contacting Dr. Lipkin about that to find out which group reviewed and turned down his application. Do you know if he ever did reply to that?
Click to expand...
I haven't seen anyone saying they'd written to Dr Lipkin about this. I emailed the NIH to ask why such an important ME/CFS research grant application had been turned down (since Dr Maier had promised that they were interested in helping ME/CFS research applications), but I got a meaningless bog-standard official reply.

This is an relevant extract from the Occupy CFS blog:
Occupy CFS said:
Dr. Nancy Klimas said at the April FDA meeting that only 1 in 8 of her applications to NIH for ME/CFS research are approved – a 12.5% success rate. In contrast, Dr. Susan Maier (NIH) reported to the CFS Advisory Committee that the 2012 acceptance rate was 18%. To my knowledge, she has not presented data on the historical acceptance rates, but she said at the May 2013 CFSAC meeting that she does have those numbers. Dr. Maier literally begged the CFSAC audience to increase the numbers of applications. Dr. Mary Ann Fletcher repeated the complaint that grants are reviewed by the wrong people. Back and forth. Back and forth.

http://www.occupycfs.com/2013/06/06/no-facts-for-you/
Click to expand...
 
Violeta

Violeta

Senior Member
Messages
2,945
Bob said:
I haven't seen anyone saying they'd written to Dr Lipkin about this. I emailed the NIH to ask why such an important ME/CFS research grant application had been turned down (since Dr Maier had promised that they were interested in helping ME/CFS research applications), but I got a meaningless bog-standard official reply.
:
Click to expand...

I saw it just today in one of the threads. I'll go see if I can find it.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just made another donation! :)

It's free listings on Ebay for the Easter weekend in the UK - I'm going to try to sell a load of unwanted stuff and I'll donate some of the profits. What I tend to do is donate a cut of what I'd have sold anyway, but also sell stuff I wouldn't have bothered with if it wasn't for charity and donate all of the proceeds from that. Knowing that it's going to ME research is very motivating!

I very highly recommend going through your cupboards and seeing what's sellable. Even a few quid/bucks is worth donating - there are loads of us and it all adds up. :)
 
G

geraldt52

Senior Member
Messages
602
Has trying to make contact with Gulf War Syndrome and Autism organizations been considered?

I believe that most of the sufferers involved believe there is substantial crossover in these conditions, and while the research says "CFS" it may be just as likely to provide answers for the other conditions. I recall that the autism community was particularly helpful back when there was fundraising for the WPI.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Microbe Discovery Project said:
To read about the background of the crowdfunding project for Dr Lipkin's study of the gut microbiome in ME/CFS patients, please see our articles:

Lipkin finds biomarkers not bugs
September 12th 2013
http://phoenixrising.me/archives/19083

Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study
Feb 10th 2014
http://phoenixrising.me/archives/21929

The Lipkin Microbiome Crowdfunding Campaign Launches!
March 27th 2014
http://phoenixrising.me/archives/24385

The Chronic Fatigue Initiative and Interview with Mady Hornig
April 22nd, 2014
http://phoenixrising.me/archives/24733
Click to expand...
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Last Word On Nothing

A Guest Blog by Julie Rehmeyer.

(Part 2 mentions the crowdfunding campaign.)

Guest Post, pt. 1:
Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?
By: Julie Rehmeyer | April 23, 2014
http://www.lastwordonnothing.com/20...cal-unhelpful-about-chronic-fatigue-syndrome/

Guest Post, pt. 2:
Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?
By: Julie Rehmeyer | April 24, 2014
http://www.lastwordonnothing.com/20...cal-unhelpful-about-chronic-fatigue-syndrome/
 
Last edited:
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Microbe Discovery Project said:
News of our crowdfunding campaign reaches the Czech Republic
April 27, 2014
We aim for this crowdfunding campaign to be truly global – as ME/CFS is an illness that can affect anyone anywhere in the world. The Czech website for ME/CFS patients (www.me-cfs.cz) published an article about our campaign which includes the video appeal by Dr. Ian Lipkin, subtitled in Czech by volunteers and a detailed step-by-step guide how to donate, also translated by volunteers. You can read the full article by clicking here – you can use e.g. Google Translate if your browser does not translate the article automatically.

Here is an excerpt:

Everyone can decide individually how much they would like to donate, but if for example ‘only’ 10,000 patients (out of the estimated 40,000 ME/CFS patients in our country) donated 10 dollars, gifts from the Czech Republic alone would raise an incredible one hundred thousand dollars!

Yes, patients around the world, together with their friends, families and their supporters can donate 1.27 million dollars and they can do it very fast. This is our chance for top notch research to start as soon as possible.

TOGETHER, WE CAN DO IT!

Please visit our website for futher information about the crowdfuding project:
http://www.microbediscovery.org/
Click to expand...
 
Last edited:
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Microbe Discovery Project said:
Some related information that folk might find interesting...
Click to expand...

The Microbe Discovery Project said:
Check out this 2011 blog by Vincent Racaniello that describes an association between gut bacteria and the activation of parts of the immune system including some cytokine responses.

The association is not understood, but "one idea is that bacterial products stimulate white blood cells in the intestine to produce compounds" that activate some immune defences.

The blog suggests that changes in the gut microbiome can result in adverse changes to the immune system and increase vulnerability to some infections.

"In antibiotic treated mice, lung dendritic cells fail to migrate to local lymph nodes. Hence T cells are not informed of the infection, leading to poor antibody and cellular responses."

In short, the gut microbiome interacts with the immune system and the composition of the gut can either increase or reduce immunity to certain infections.

https://www.facebook.com/microbediscovery/posts/648216211914083?stream_ref=10
Click to expand...

The Microbe Discovery Project said:
Check out this 2011 article by Ed Yong which discusses how the polio virus (an enterovirus), and the mammary tumour virus (a retrovirus), can utilise bacteria in the gut microbiome in mice in order to more effectively infect the host:

Note: these viruses utilise ordinary healthy gut bacteria, so it is not a case of "bad" gut bacteria encouraging infections.

The article discusses some implications: "The polio vaccine contains living but weakened viruses. Most people easily develop immunity to these feeble viruses and clear them within a week. But a very small proportion of people cannot. They fail to make the right antibodies and the viruses continue to reproduce inside them for years or decades, risking paralysis. These very rare people might benefit from an intense treatment of antibiotics that would stop the virus from reproducing in their intestines."

However, using strong antibiotics to indiscriminately kill the microbiome could lead to serious health problems, so it could only be done under exceptional and controlled circumstances.

https://www.facebook.com/microbediscovery/posts/648286451907059?stream_ref=10
Click to expand...

The Microbe Discovery Project said:
Please support the crowdfunding project for Dr Lipkin to study the gut microbiome of ME/CFS patients:
http://www.microbediscovery.org/
Click to expand...
 
Last edited:
You must log in or register to reply here.