ME/CFS Reseach--Resources

[Christopher]

Journalism


The Blue Ribbon: ME/CFS And the Future of Medicine

• A documentary by Ryan Prior

Canary in a Coal Mine

• A documentary led by Jen Brea

Plague

• A book authored by Judy Mikovits and Kent Heckenlively

Llewellyn King

• Getting the word out through the White House Chronicle

Miriam Tucker

David Tuller

Research

Healclick.com

• A web application led by Joey Tuan
• Goal is to collect patient data and provide anonymously to researchers

MAR Consulting

• A company led by Judy Mikovits and Frank Ruscetti

Dr. Ian Lipkin

• A sympathetic government researcher
• Associated with several organizations where we can direct funding

Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative

• A treatment and research program under the Stanford School of Medicine

Enterovirus Foundation

• Led by John Chia to research enterovirus involvement

Andrew Mason

• Dr. Mason is affiliated with the University of Alberta, and is pursuing antiviral therapy for PBC, an autoimmune disease of the liver

Martin Lerner

• Treats with antivirals and has conducted studies

Norwegian Team (Rituximab) Phase 3 Trial



UK Rituximab Trial

• Sponsored by IiME (UK-based)

Simmaron Research

• Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders.

Open Medicine Institute

• The Institute’s immediate research efforts focus on poorly understood diseases such as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Autism, Lyme, Multiple Sclerosis, and other neuro-immune conditions. OMI will apply our unique translational model to a wide range of diseases such as blood cancers and cardiovascular disease.

CFI (Glen Hutchins)

• Chronic Fatigue Initiative is a science-based 501(c)(3) nonprofit organization fostering and supporting collaboration among the world’s leading medical research, treatment and public health organizations in understanding the causes, therapies and epidemiology of Chronic Fatigue Syndrome (CFS). Headquartered in New York City and funded by the Hutchins Family Foundation, CFI seeks to accelerate the medical community’s knowledge of CFS through research grants and collaborative processes across institutions.

NIDA (Neuro-Immune Disease Alliance)

• has funded OMI and Simmaron

National Centre for Neuroimmunology and Emerging Diseases - NCNED, Australia

• Our mission is to perform world class biomedical research that will contribute to the understanding of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) through the identification of physiological mechanisms and biomarkers.

Lenny Jason


Whittemore Peterson Institute

• The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong disease and disability.

Professor Kenny De Meirleir

• Affiliated with WPI

Multiple Sclerosis Charcot Project

• Antiviral trials for MS

Michael Pender at the University of Queensland

• anti-EBV measures for MS

Information Resource

Dr. Jamie Deckoff Jones

• Doctor who blogs about treatment and politics

Academy of ME & CFS Physicians

• "composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance."

Chris Cairns


Cort Johnson


CFS Remission Blog

• Blog by Ken Lassesen mainly discussing how attempting to shape the gut microbiome can help with CFS symptoms

Bifido Thread on PR

• Thread with helpful information from @Vegas about the beneficial effects of consuming bifido strains and how to culture yogurt with them.

RS Thread on PR

• Thread with helpful information from @Ripley about how consuming foods high in RS (Resistant Starch) increases bifido bacteria in the gut.

Patient Advocacy

National ME/FM Action Network of Canada

• The NATIONAL ME/FM ACTION NETWORK became a Canadian charitable organization on June 18, 1993 dedicated to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research.

European ME Alliance

• The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME.

Invest in ME

• We are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
  We have links nationwide and also internationally.

Lipkin's $1 million dollar appeal

• Discussion on how to raise funds for Lipkin's proposed gut study with Columbia

Fundraising

Wally-World

• A group effort to push for federal funding into ME/CFS

MEandYou

• Maria Gjerpe, to crowdfund Rituximab trials in Norway at Haukeland Hospital

 

[August59]

Hopefully, someone can answer this as I can't remember definitively. Wasn't Dr. Alan and Kathy Light working on trying to come up with a preliminary set of "criteria" for at least 3 to 4 subsets of ME/CFS?

 

[alex3619]

National Centre for Neuroimmunology and Emerging Diseases - NCNED, Australia

 

[justy]

Lenny Jason
Professor Kenny De Meirleir
Invest in ME

 

[Wally]

My plan is to create a portal site with up-to-date information about these groups - their current projects and goals. Would something like this be useful?

@Christopher - I think this is a great idea. If the patient community is going to get involved in a fund raising campaign, it will be important to evaluate what research projects such a fundraising effort should be focused toward. Also, it may not be easy to get people to agree on which projects should be supported, so the project that is proposed must be marketed in such a way that people will want to support it. After identifying each potential research project, they need to be evaluated by people with a science background to determine if they will give the patient community the most bang for their buck. Also, people/patients will not want to contribute to something unless they are convinced it is well organized and it can fund what it is asking patients to contribute their precious dollars and cents to.

 

[Firestormm]

OK thanks guys - I've added these:
Drs. Alan and Kathy Light
National Centre for Neuroimmunology and Emerging Diseases - NCNED, Australia
Lenny Jason
Professor Kenny De Meirleir
Invest in ME

My plan is to create a portal site with up-to-date information about these groups - their current projects and goals. Would something like this be useful?

Christopher,

I think something like this would be very useful as a feature somewhere on our home page and in the forums - maybe even an article/blog can be made out of it? I would be happy to consider any draft if once you felt this call was complete.

As you know, we have an article coming out very very soon from Ian Lipkin so stay tuned for that and the information it will carry. Just trying to finalise the details with Columbia at this minute...

Have a look at our Home Page and see if you can think of somewhere prominent where we might slot your efforts in as perhaps a permanent home to which we can direct people.

Let me know if you want to take this initiative further or have any other ideas.

Russ

 

[Firestormm]

I look forward to the article. Is it authored by Dr. Lipkin himself, or was it an interview?

Oh I should have said that it was an interview - sorry I thought the cat was already out the bag on this one

@Christopher I wonder if you might not like to change the title of this thread - only I just stumbled across it and perhaps others would find it more easily if it reflected the content and your call for nominations? Or had an introduction so as peeps would know what it was all about.

 

[Seven7]

Do we know of anything to attract / support new reaersechers in USA?

 

[Wally]

Do we know of anything to attract / support new reaersechers in USA?

Money $$$$$$$

 

[Seven7]

@WaIly I meant an organization that helps set up. I am trying to help out somebody to start on CFS (researcher) and it has been SOOOOO hard. If this is an example of how it is, we have no much hope!! `It has been very educational to see the challenges to start up in a new field (for established researcher in other fields).

 

[Wally]

@Inester7 - in all seriousness it does relate back to money. If a researcher, who is established in another field, wants to do research related to CFS, they will probably need to have a plan on how they will be able to tap into existing or new sources of money to fund their research. There are already so many proposed research studies in the pipeline, it would probably take something pretty remarkable to get anyone's attention to switch to a new proposal from someone unknown to this field. Perhaps, the researcher that you are speaking about might approach the Open Medicine Foundation, which formed the OMNI-Merit group to look at a broad spectrum of research projects, to discuss their ideas. See, http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

 

[Sushi]

Oh I should have said that it was an interview - sorry I thought the cat was already out the bag on this one

@Christopher I wonder if you might not like to change the title of this thread - only I just stumbled across it and perhaps others would find it more easily if it reflected the content and your call for nominations? Or had an introduction so as peeps would know what it was all about.

Yes please, @Christopher, I just stumbled on the thread too, but wouldn't have guessed from the title what it was about.

Something like "ME/CFS Reseach--Resources" ? or something better that you could come up with?

Thanks,
Sushi

 

[Seven7]

This is kinda what I was looking for, But the issue with researchers is (if it is a serious one) you cannot use money from a grant (which is how they are up and running to pay their way) to apply time and resources to another field.

So where is this start up money will come from for new people.
@Wally "they will probably need to have a plan on how they will be able to tap into existing or new sources of money to fund their research."

I am just saying as a community maybe we should think about this question so we can attract new researchers. Just a thought. Now if somebody has the answer let me know please.

 

[Sushi]

Well it's too late for me to change it.

I can change it for you. Tell me what you would like.

Sushi

 

[Christopher]

2/9/2014

Added:
CFS Remission Blog

• Blog by Ken Lassesen mainly discussing how attempting to shape the gut microbiome can help with CFS symptoms

Bifido Thread on PR

• Thread with helpful information from @Vegas about the beneficial effects of consuming bifido strains and how to culture yogurt with them.

RS Thread on PR

• Thread with helpful information from @Ripley about how consuming foods high in RS (Resistant Starch) increases bifido bacteria in the gut.

 

[deboruth]

Christopher, I appreciate your Journalism and other listings on your contacts page. Could you please make a small correction? I am Llewellyn King's co-founder and co-worker on MECFS Alert. I myself have been anywhere from partially to wholly disabled by the disease since late July, 1989. MECFS Alert could be said to have been birthed by White House Chronicle, (which did several shows on the topic before MECFS Alert was started) just as Athena was spawned from Zeus' thigh. However, we are now up to more than 65 episodes on Youtube, and MECFS Alert should be mentioned ion your listing n its own name, though it can be accessed via the White House Chronicle website, which is perhaps the easiest way to find it.