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

[aimossy]

The $10 Challenge for Columbia University CII ME/CFS research!

Small donations when donated by many people make a serious difference!
You can donate here: www.bit.ly/DonateToDrLipkin

Drs Hornig and Lipkin’s recent landmark study showed that the cytokine profile of ME/CFS patients is abnormal and changes markedly after three years. This study provides robust evidence of the biological basis of ME/CFS, and made international headlines.

The researchers at CII have a program of research into ME/CFS underway and exciting plans, they are collaborative and creative problem-solvers. They are keen to start working on biomarker validation studies and they continue to leave no stone unturned for funding.

We highly recommend you read these two articles by Simon McGrath. 'Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London' http://phoenixrising.me/archives/26166 and 'New era for ME/CFS research as top cytokine study attracts media headlines' http://phoenixrising.me/archives/26509

The Microbe Discovery Project has become synonymous in the patient community with Columbia CII research efforts. Our global community can help them move us forward, which will lead to bigger findings and more government funding and grants. We need research to find diagnostic tests and treatments.


Take the Challenge and get others to for May 12th Awareness day. Share, Share, Share. Feel free to use the images, copy and paste any text. Don't forget to copy the donation link

Thank you for your support!
The MDP team.

 

[aimossy]

From The Microbe Discovery team

Our sincere apologies folks for any inconvenience. We have had to change our $5 Dollar Challenge to a $10 Dollar Challenge! It's the policy for the University. Somehow we got away with this last time and our team at Columbia didn't know about this policy minimum donation of $10. The $5 challenge worked well the first time we ran this and the policy must have not been enforced through their donation site at the time. We are more than up to a $10 Dollar Challenge!

We will also - again - be working very hard to see if we can sort out a Text donation option in the USA.

Thanks so much for your support.
The MDP team.

 

[aimossy]

Dr Lucinda Bateman takes the Chilli ME Challenge.
And nominated Dr Lipkin for the Challenge........

Watch video on the Chilli FB page here:

https://www.facebook.com/ChilliMEChallenge/posts/1443114835984416

 

[aimossy]

New hope for those with chronic fatigue syndrome
From Columbia University's Magazine - Spring Issue

http://magazine.columbia.edu/explorations/spring-2015/new-hope-those-chronic-fatigue-syndrome

 

[waiting]

New hope for those with chronic fatigue syndrome
From Columbia University's Magazine - Spring Issue

http://magazine.columbia.edu/explorations/spring-2015/new-hope-those-chronic-fatigue-syndrome

I wonder what Dr. Hornig meant when she said it's important to get diagnosed early in order to think about treatment strategies. At present, other than the need to pace (and treatment for common comorbidities like Thyroid issues, etc.), I don't know of any treatments for the disease itself -- unless she's referring to Ampligen or off-label Rituximab (and I don't think it is yet known which subsets of us would be responders to those 2.)

 

[Bob]

I wonder what Dr. Hornig meant when she said it's important to get diagnosed early in order to think about treatment strategies. At present, other than the need to pace (and treatment for common comorbidities like Thyroid issues, etc.), I don't know of any treatments for the disease itself -- unless she's referring to Ampligen or off-label Rituximab (and I don't think it is yet known which subsets of us would be responders to those 2.)

In terms of saying that treatment needs to be given early, I think she is referring to the difference in cytokine levels before/after three years. I think she sees the first three years as a window during which raised cytokine levels can be suppressed with drugs, before "immune exhaustion" (her words) occurs. I think she's thinking along the lines of targeting specific cytokines with drugs that aren't currently used to treat ME. She has talked about this, but I can't remember where exactly. Probably the recent interview with Llewellyn King:
http://forums.phoenixrising.me/inde...gn-news-and-updates.29430/page-24#post-574416

 

[aimossy]

You mean here @waiting

Hornig says that the discovery, which appeared February 27 in Science Advances, could form the basis of a new diagnostic test. Physicians currently diagnose chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS, by checking off a list of symptoms that are judged subjectively; physicians can struggle, she says, to distinguish it from depression, bipolar disorder, and other neuropsychiatric conditions that have similar symptoms. She also says that physicians have a difficult time determining when an infectious disease like mononucleosis, Q fever, or Lyme disease — all suspected preludes to chronic fatigue syndrome — has evolved into the full-blown syndrome, thus necessitating a new treatment strategy.

“We’d love to be able to tell if a person has ME/CFS rather than, say, a persistent case of Lyme disease, simply by looking at their cytokine levels,” says Hornig, who is director of translational research at the Mailman School’s Center for Infection and Immunity. “Today, up to 70 percent of people with chronic fatigue have a delay in their diagnosis of at least a year — and sometimes of ten years or more. It’s really important to get the diagnosis as soon as possible, so that you can begin to think about appropriate treatment strategies.”

I think this statement is a bit ambiguous and the key words are "appropriate treatment strategies". That could be taken to mean anything - for example it might be more appropriate to Pace rather than pushing too hard or doing an exercise programme.

 

[waiting]

@Bob, yes, perhaps she is referring to *future* treatment possibilities -- although I did not read it that way. This, I get, and will be a phenomenal advance -- for those patients up to three years post-onset.

@aimossy Yes, I agree it's ambiguous -- Other than the crucial pacing, I don't see that it makes any difference to outcome whether the diagnosis is early or late -- because *currently* there is no treatment.

(Of course, an early diagnosis can also help with financial health if it's needed for LTD, and this, in turn, can help reduce stress which would otherwise worsen the illness severity.)

 

[aimossy]

Article: 'Hey, Irish celebs: Will you brave the new ice bucket challenge?'

http://www.evoke.ie/extra/irish-celebs-wanted-chilli-eating-contest-for-charity/

 

[SOC]

@Bob, yes, perhaps she is referring to *future* treatment possibilities -- although I did not read it that way. This, I get, and will be a phenomenal advance -- for those patients up to three years post-onset.

@aimossy Yes, I agree it's ambiguous -- Other than the crucial pacing, I don't see that it makes any difference to outcome whether the diagnosis is early or late -- because *currently* there is no treatment.

(Of course, an early diagnosis can also help with financial health if it's needed for LTD, and this, in turn, can help reduce stress which would otherwise worsen the illness severity.)

It's not true there's no treatment. There are many treatments improving the condition of PWME. It is true that there is no cure.

I believe Dr H understands that people treated early have a better outcome -- not a cure, but higher function, than those who don't get prompt treatment.

 

[waiting]

It's not true there's no treatment. There are many treatments improving the condition of PWME. It is true that there is no cure.

I believe Dr H understands that people treated early have a better outcome -- not a cure, but higher function, than those who don't get prompt treatment.

@SOC, what treatments, specifically, are you referring to?

In my first post, above, I refer to the existence of treatments for common comorbidities/dysregulations (which work, or not, to varying degrees), or symptomatic treatment (which work, or not, to varying degrees)-- but not for the disease itself i.e. PEM -- significantly worsened flu-like symptoms after exertion, resulting in low functional capacity.

 

[SOC]

@SOC, what treatments, specifically, are you referring to?

In my first post, above, I refer to the existence of treatments for common comorbidities/dysregulations (which work, or not, to varying degrees), or symptomatic treatment (which work, or not, to varying degrees)-- but not for the disease itself i.e. PEM -- significantly worsened flu-like symptoms after exertion, resulting in low functional capacity.

Many treatments have improved functional capacity in patients. None, as far as I know, have completely cured PEM. It doesn't take much reading at PR to find people who have improved functional capacity through various treatments, but there hasn't been one single treatment that worked for everyone.

Quite a few people have reported improved functional capacity with antivirals. The reason is debated, but the result is clear enough that most of the top ME/CFS specialists use some antiviral in most (not all) patients.

Various medications for OI or dysautonomia can significantly improve functional capacity. That has also been reported extensively at PR. Again, most of the top ME/CFS specialists use some dysautonomia treatment in many patients because they see significant improvement in functional capacity of patients with it.

There are quite a few other treatments that are working to greater or lesser degrees for some patients to improve functionality. PR members are reporting about this, so it's not unknown. Top specialists are making significant improvements in functionality and quality of life of patients. None of them claim to have a cure for ME, afaik. That's not the same thing as not having treatments that improve functionality.

From a strictly personal perspective, I have a much greater functional capacity through aggressive treatment. Before I got treatment from a top ME/CFS specialist I was bedbound. I could not walk across a room without causing PEM. I couldn't shower without causing PEM. Now I can work full-time from home, standing most of the time, shower standing, and walk around a grocery store -- all in the same day without causing PEM. I can walk through a large airport without causing PEM. I can still PEM -- worst than most, it appears. However, I can do a lot more now before I PEM. That is huge.

My daughter got treatment early and got much more improvement than I did. We also made sure she understood her illness and didn't repeatedly PEM herself early in the illness. We, and her specialists, feel that knowing about her ME and treating it appropriately with pacing and medical interventions before she got very, very ill is a large part of the reason she is nearly fully functional today.

So I reject the notion that there are no treatments and the early intervention makes no difference.

 

[waiting]

Many treatments have improved functional capacity in patients. None, as far as I know, have completely cured PEM. It doesn't take much reading at PR to find people who have improved functional capacity through various treatments, but there hasn't been one single treatment that worked for everyone.

Quite a few people have reported improved functional capacity with antivirals. The reason is debated, but the result is clear enough that most of the top ME/CFS specialists use some antiviral in most (not all) patients.

Various medications for OI or dysautonomia can significantly improve functional capacity. That has also been reported extensively at PR. Again, most of the top ME/CFS specialists use some dysautonomia treatment in many patients because they see significant improvement in functional capacity of patients with it.

There are quite a few other treatments that are working to greater or lesser degrees for some patients to improve functionality. PR members are reporting about this, so it's not unknown. Top specialists are making significant improvements in functionality and quality of life of patients. None of them claim to have a cure for ME, afaik. That's not the same thing as not having treatments that improve functionality.

From a strictly personal perspective, I have a much greater functional capacity through aggressive treatment. Before I got treatment from a top ME/CFS specialist I was bedbound. I could not walk across a room without causing PEM. I couldn't shower without causing PEM. Now I can work full-time from home, standing most of the time, shower standing, and walk around a grocery store -- all in the same day without causing PEM. I can walk through a large airport without causing PEM. I can still PEM -- worst than most, it appears. However, I can do a lot more now before I PEM. That is huge.

My daughter got treatment early and got much more improvement than I did. We also made sure she understood her illness and didn't repeatedly PEM herself early in the illness. We, and her specialists, feel that knowing about her ME and treating it appropriately with pacing and medical interventions before she got very, very ill is a large part of the reason she is nearly fully functional today.

So I reject the notion that there are no treatments and the early intervention makes no difference.

@SOC I am glad for you & your daughter that you found treatments that helped your functional capacity. Many of us have not been so lucky.

 

[SOC]

@SOC I am glad for you & your daughter that you found treatments that helped your functional capacity. Many of us have not been so lucky.

It's not just us. There are quite a few people here at PR reporting improvements in functional capacity.

Have you been able to see a top ME/CFS specialist? Have you tried OI treatments?

I realize that many people have not been able to access top ME/CFS specialists and the treatments they give. That does not mean treatments to improve functional capacity do not exist. The patient population needs to understand that these treatments DO exist and are improving both functional capacity and quality of life of patients. Patients need to know there IS hope for improvement; that ME/CFS does not have to be a living-death sentence. The reason many of us continue the living-death is not that treatment does not exist, but that they can't get access to it.

We need to start demanding that these treatments be made available to all of us.

 

[waiting]

It's not just us. There are quite a few people here at PR reporting improvements in functional capacity.

Have you been able to see a top ME/CFS specialist? Have you tried OI treatments?

I realize that many people have not been able to access top ME/CFS specialists and the treatments they give. That does not mean treatments to improve functional capacity do not exist. The patient population needs to understand that these treatments DO exist and are improving both functional capacity and quality of life of patients. Patients need to know there IS hope for improvement; that ME/CFS does not have to be a living-death sentence. The reason many of us continue the living-death is not that treatment does not exist, but that they can't get access to it.

We need to start demanding that these treatments be made available to all of us.

Yes -- and yes. However, as is the case with many others, nothing improves functional capacity, nor PEM (other than reducing it by pacing, when possible).

I agree that medical options (ME specialists & drugs) should be available to everyone to try, but even when they are, there are a significant number of non-responders -- this will continue to be the case until ME/SEID subsets are identified.

I am well aware of the success stories, including yours -- they provide hope. Thank you for providing info here on PR on what you've tried & what has worked. Hopefully others will be able to enjoy the same improvements as you.

 

[aimossy]

From the Microbe Discovery Team Facebook page!

Ian Lipkin and Mady Hornig respond to the Chilli ME Challenge on July 1st

WOAH - talk about getting behind the ME/CFS community! The researchers at Columbia CII accepted the Chilli ME Challenge and made it spicier!

"On July 1, renowned researchers Ian Lipkin and Mady Hornig at the Center for Infection & Immunity (CII) at Columbia University’s Mailman School of Public Health will take the Chili ME Challenge via LIVE WEBCAST.
CII challenges you to support this research to help... unlock the mysteries of ME/CFS."

Check out their brilliantly neat promo video and chilli donation funds Spice-O-Meter!
The more donations the higher the Spice-o-Meter becomes the hotter the chilli the researchers will tackle!

The funds raised will support comprehensive studies into the role of the bacteria, fungi and viruses in CFS. Research into the human microbiome is an exciting new pathway to advance understanding of the role more than a trillion microorganisms in our body play in health and in the development of disease. As one of the world’s largest and most advanced centers in microbe discovery, identification and diagnosis, CII is optimally positioned to embark upon the challenge to determine how bacteria, fungi, viruses and toxins (and the immune response to them) contribute to ME/CFS.

With every gift, the Spice-O-Meter will climb. The more you give, the hotter it gets. Challenge your friends and family to join in on Facebook and Twitter.

Simply include the tag ‪#‎ChiliMEchallenge‬ and link to the page.

Donate now and put the heat on ME/CFS!

See all this on their Columbia CII site here!
http://www.mailman.columbia.edu/chiliME

This is all up on a general news thread here: http://forums.phoenixrising.me/inde...to-the-chilli-me-challenge-on-july-1st.38124/

 

[Bob]

For anyone interested, there's a separate thread for the chilli-challenge:
http://forums.phoenixrising.me/inde...to-the-chilli-me-challenge-on-july-1st.38124/

 

[Sasha]

There's a blogpost here about the upshot of all this for the Lipkin/Hornig microbiome work.

 

[Simon]

There's a blogpost here about the upshot of all this for the Lipkin/Hornig microbiome work.

The new study is bigger and better
Kickstart for Lipkin & Hornig’s BIG Microbiome Study

The team applied for five years of funding, but only got one, so they are starting work but have a huge funding hole.

The original crowdfund was for a single set of samples from 100 patients and 100 matched controls. The new study will collect poop, blood and saliva from 125 patients and the same number of matched controls. And they will collect four sets of samples across a year to address the NIH concern that the microbiome can fluctuate over time, which might confuse the results. To save you the maths, that's three thousand samples in total. This is now a huge study

The NIH grant of just under $0.5m (after overhead deductions) won't even cover the cost of recruiting samples.

Columbia staff are donating their time free to this project to help get it done:

Recruiting the patients and controls, and collecting all the samples from them will cost up to a million dollars. The NIH grant won’t even come close to covering all of that. Luckily, an anonymous donor generously donated $0.5 million to CII’s work, which will go toward sample collection. On top of that, generous CII staff will donate their efforts in-kind for the duration of the study. Many thanks to CII personnel – this is truly humbling. This is all helping to enable this work to happen faster.

 

[Scarecrow]

The team applied for five years of funding, but only got one, so they are starting work but have a huge funding hole.

All may not be lost.

Leokitten pointed out here that an R56 NIH grant was awarded (rather than the usual R01).

http://grants.nih.gov/grants/funding/r56.htm

The R56 award will help early career stage scientists trying to establish research careers as well as experienced scientists who can benefit from interim funding while they revise their applications.