Best bets for donations

[neweimear]

Where is best to direct our funds when fundraising
My list are OMF, Simmaron, Solve Iniative and Naviaux's lab.

I get the feeling that OMF aren't as popular as they used to be, people are starting to spread their monies

 

[Diwi9]

All good groups you've listed. My favorite is Solve ME/CFS because they strategically fund research (and try to bring "new" researchers into the fold), and they are pummeling at U.S. government agencies advocating for increased funding and awareness. They make every dollar work, unlike many of the big-name disease non-profits in the U.S.

I'd add Millions Missing to your list too. PR is also a non-profit and accepts donations.

 

[neweimear]

All good groups you've listed. My favorite is Solve ME/CFS because they strategically fund research (and try to bring "new" researchers into the fold), and they are pummeling at U.S. government agencies advocating for increased funding and awareness. They make every dollar work, unlike many of the big-name disease non-profits in the U.S.

I'd add Millions Missing to your list too. PR is also a non-profit and accepts donations.

Yes, I think Solve do great work. Carol Head is a fantastic lady with such integrity.

 

[Badpack]

I have the feeling if you want a fast answer without waiting for a 3 year medical trail with 2 year follow up and all in secret, OMF seems pretty nice. Also having a family member with CFS/ME shows you every day again how important and urgent a therapy for many of us is needed. Also Maureen Hanson has a sick son. So i put a lot of trust in her doing all she can to find a solution. Dont underestimate the power of a mother who wants to help her son to get well again haha

 

[Jesse2233]

OMF gets my vote

 

[Nickster]

OMF gets my vote!

 

[RL_sparky]

Columbia will get my next donation.

They have 125 ME/CFS patients and 125 healthy matched controls samples.
They already collected stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.

 

[neweimear]

Columbia will get my next donation.

They have 125 ME/CFS patients and 125 healthy matched controls samples.
They already collected stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.

If you want to donate to Lipkin, is it through Simmaron. I can't find anything for Columbia....well I did but could not find where to donate to me/cfs.

 

[shannah]

@neweimear

Columbia suspended their donations for CFS a little while ago. Although I don't remember seeing an announcement that it was reinstated, it seems you can follow a link on this page to donate to the ME microbiome project.

https://www.mailman.columbia.edu/re...-and-immunity/chronic-diseases-microbiome#cfs

Edit: I don't see the "Lipkin ME/CFS/Microbiome Study” appearing in the drop down menu so perhaps it still hasn't been reinstated.

 

[MEPatient345]

https://web.giving.columbia.edu/giveonline/index.jsp?schoolstyle=588&alloc=12118
Choose ME/CFS research in dropdown.

 

[Ember]

Columbia will get my next donation.

They have 125 ME/CFS patients and 125 healthy matched controls samples.

They already collected stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.

The Microbe Discovery Project provides good transparency concerning their cohort:

All ME/CFS cases have been carefully diagnosed and meet both Fukuda criteria and the stricter Canadian criteria. The study will have 125 ME/CFS patients and 125 healthy matched controls.

Patients come from five expert centers for ME/CFS research and treatment across the United States. These include Dr. Lucinda Bateman, Bateman Horne Center, Salt Lake City; Dr. Nancy Klimas, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami; Dr. Susan Levine, Private Practice, New York; Dr. Jose Montoya, Infectious Disease Clinic, Stanford and Dr. Daniel Peterson, Sierra Internal Medicine, Incline Village. The team has now recruited all the patients and controls they need, and enrollment is closed (http://microbediscovery.org/microbial-discovery-immunity-study/).

Notice too Dr. Hanson's encouraging preliminary announcement:

The Clinical Core will recruit and screen subjects with ME/CFS and healthy sedentary controls.

Recruitment of Subjects

An application for human subjects participation has been submitted to the Institutional Review Board and is under review.

There will be three locations where subjects will be able to participate in the study:

• New York City
  
  
• Los Angeles
  
  
• Ithaca, NY

Information concerning how to volunteer for participation as a subject in our studies will be provided on this site after our protocols are approved.

Follow @DrMaureenHanson on Twitter to be notified when more information is available.

The Clinical Core is co-directed by Dr. Betsy Keller, Ph.D., who has extensive experience in cardiopulmonary exercise testing (CPET) of ME/CFS patients and Dr. Geoff Moore, an internist with a special interest in the effect of exercise in health and chronic disease. ME/CFS expert physicians Susan Levine and John Chia will participate in evaluation of subjects and interpretation of medical tests. CPET will occur at Weill Cornell Medicine (with the assistance of Evelyn Horn, M.D., Cardiology), at the Ithaca College Wellness Clinic, and in Los Angeles (by the Workwell Foundation) (http://neuroimmune.cornell.edu/clinical-core/).

The 2-day CPET protocol inspired the ICC:

It was the accumulation of research and clinical knowledge that influenced the decision to develop new criteria, however, a few studies come to mind….The 2005 Snell et al study, the first test-retest exercise study, reported that some patients had a dramatic drop in their ability to produce energy following the second test. More exciting post-exertional studies followed – the Pacific Fatigue Lab, Drs. Light, White, Van Oosterwijck, de Meirleir, etc. The test-retest studies not only confirmed that ME patients had pathological responses to exertion, but the abnormalities were greater than expected in many cases. Genetic, neurological, immune, mitochondria and ion transport studies brought greater clarity. (Kerr, Broderick, Klimas, Myhill, etc.)
(htttp://phoenixrising.me/archives/5996 ).

Stricter recruitment of more homogeneous cohorts has been so long-overdue!

 

[Mel9]

OMF gets my vote!

Me too

 

[Ember]

Where is best to direct our funds when fundraising
My list are OMF, Simmaron, Solve Iniative and Naviaux's lab.

In this video, Dr. Klimas discusses the connections between Gulf War Illness and ME/CFS, as well as the need for funding:

In honor of Veterans’ Day 2017, the Solve ME/CFS Initiative presents highlights from Discovery Forum 2017 addressing the connections between Gulf War Illness and ME/CFS. Featuring the presentations of Dr. Nancy Klimas of Nova Southeastern University. Dr. Klimas has more than 30 years of professional experience and has achieved international recognition for her research and clinical efforts in Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Gulf War Illness (GWI).

 

[neweimear]

How are we supposed to fund them all....imagine Nancy Klimas could have us nearly sorted if she had received adequate funding

 

[Ember]

How are we supposed to fund them all....imagine Nancy Klimas could have us nearly sorted if she had received adequate funding

Support advocacy:

Our advocacy efforts should focus on demanding the use of proper criteria for diagnostic and research purposes ( ME-ICC criteria and ME-ICC Questionnaire), and for appropriate NIH funding ($250mil a year in the US) to effectuate impactful studies leading to an acceptable biomarker as well as FDA approved treatments for #pwME (https://relatingtome.net/2017/11/01/resisting-attempts-to-silence-pwme/).

 

[neweimear]

250 million per year!!! I think that is a tad unrealistic. We got 13.3 million from NIH in fy17. If we pushed up to 20 million fy18, that might be more likely, everything crossed.

 

[Ember]

250 million per year!!! I think that is a tad unrealistic. We got 13.3 million from NIH in fy17. If we pushed up to 20 million fy18, that might be more likely, everything crossed.

Consider the arguments in “Estimating disease-burden in the US”— that multiple sclerosis, an illness with many similarities to ME, receives over $200 per patient per year and that funding for ME research should be equivalent to $188 per patient per year:"

Why is funding so low?

Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year. Compare this to multiple sclerosis, an illness with many similarities to ME, but which receives over $200 per patient per year.

How much should ME/CFS receive in funding per year?

While it may seem abhorrent in one way to quantify and compare suffering, it’s a necessity to determine whether or not the amount of funding allocated to ME/CFS research, treatment, and oversight is fair and reasonable.

The final DALY for ME patients was 0.714M or 714,000. In comparison to other illnesses, this projects that the funding for ME research should be equivalent to $188,000,000/year, or $188 per patient per year. That would be more than 25 times the funding allocated for research in the last calendar year in the US.

Consider too Resisting Attempts to Silence #PwME: “Finally, you co-opt the realists (the pragmatics willing to work within the system) into compromise” (https://relatingtome.net/2017/11/01/resisting-attempts-to-silence-pwme/).

 

[neweimear]

I agree totally that we should be getting so much more but how do we make them give it...I just hope it keeps increasing

 

[Ember]

My favorite is Solve ME/CFS because they strategically fund research (and try to bring "new" researchers into the fold), and they are pummeling at U.S. government agencies advocating for increased funding and awareness. They make every dollar work, unlike many of the big-name disease non-profits in the U.S.

Dr. Lipkin also applauds the advocacy of Solve ME/CFS Initiative: