Three for One: Family Foundation Steps Up for ME/CFS Research

November 30, 2011

Posted by Cort Johnson

It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not innovative. They are determining

  • if ME/CFS patients brains are functioning as anerobically as their bodies seem to be
  • if standing up causes a flare of free radicals that causing you to tip over, grow dizzy or at the very least ditch several points of IQ
  • if exercise causes CFS patients gut microflora to go bananas – spiking an immune response – and causing post-exertional fatigue
  • if exercise causes sensory, immune and endocrine genes involved in pain, fatigue and blood vessel functioning to spike resulting in pain, fatigue and you know the rest
  • if immune and other gene expression networks hold the key to subsetting CFS
  • a computer program that develops novel theories for CFS using existing research

That’s not all. The CAA submitted a grant to explore auto-antibodies in CFS BEFORE the Rituximab finding came out. That could be the first study to verify the presence of an auto-immune disorder in ME/CFS.

10/15: 1? - Three for one is good odds, indeed, but it’s actually much better than that. The $650,000 the CFIDS Association three years ago pumped into CFS research has turned into over 15 published papers and almost $5,000,000 in hard to get NIH grants. So instead of 3:1 think 10 or 15:1..Your $20 or $50 may actually be worth $200 or $500 or more.

That’s big money in the CFS research world.

Think biomarkers (Broderick, Light). Think treatments and interest from a pharmaceutical company (Light). Think recognition and legitimacy (everybody). That’s what you’re investing in in this program.

Building a Research Community – Under Suzanne Vernon’s leadership the CAA’s teams have been almost uniquely collaborative -sharing and incorporating their findings with each other early in the process, and even in some cases, merging their studies. Suzanne Vernon is effectively building a diverse research community devoted to understanding CFS that has also got each other’s back in a rough research world.

Simply getting researchers to take on CFS is a an accomplishment and Suzanne Vernon has been very good at getting other researchers interested in the field. One her big ‘catches’, Dr.Gordon Broderick, said this about the Research1st program:

Through the Association and its supporters, we are slowly becoming one much larger and much better coordinated virtual research laboratory, one with clear goals and where our roles and interactions as scientists, clinicians and educators are beginning to crystallize. This sense of community has been a vital motivator and has kept our group engaged and focused, enabling us to weather the criticism of more traditional academia and the comparatively barren funding landscape.

Make your dollars count. Support the Research1st program here.

5 comments

{ 5 comments… read them below or add one }

BobM December 8, 2011 at 3:24 pm

There is much happening in the world of Research:

Mason award landmark grant for CFS research
Researchers at Bond University have received a landmark grant of over $800,000 to continue their ground-breaking research into identifying the cause and possible treatment of Chronic Fatigue Syndrome (CFS).

In what is the largest-ever collaborative international CFS project, Bond’s Public Health and Neuroimmunology Unit (PHANU), in partnership with Queensland Health, Stanford University and Incline Village Medical Centre in Nevada( Dr. Peterson and Simmaron Research), will receive a total of $831,037 over the next four years from the Judith Jane Mason & Harold Stannett Williams Memorial Foundation (the Mason Foundation).

http://www.bond.edu.au/​about-bond/news-and-events/​news/BD3_019855

News | News & Events | Bond University | Gold Coast, Australia
http://www.bond.edu.au
Researchers at Bond University have received a landmark grant of over $800,000 to continue their ground-breaking research into identifying the cause and possible treatment of Chronic Fatigue Syndrome (CFS).

This is an exciting time for Bond University and Simmaron Research with Dr. Daniel Peterson, the pilot study that Simmaron and Bond are currently doing has lead to this Funding access. The Pilot study must be completed first and still requires $150,000 in funding. So patients wishing to be a part of this ground breaking research can contribute on the Simmaron home page to complete the Pilot study.

Donations can be sent here:
http://​simmaronresearch.org/​donate.html

Reply

Cort December 8, 2011 at 6:50 pm

More good news! Thanks Bob

Reply

BobM December 8, 2011 at 7:40 pm

Lets hope we can get on a roll Cort.

Reply

CFSBOSTON December 19, 2011 at 4:50 pm

While millions of ailing, immunodeficient CFS/ME patients are mindfully belittled & neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money for research and services. How does that make any sense to anyone?

It is so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. Why can’t people see that AIDS patients are just more CFS patients, which as CFS patients’ we already know is not caused by HIV. I want a revolution.

If CFS/ME patients truly wanted billions of dollars of funding to be allocated to study their illness, all they need to do is demand of their government officials’ that the medical establishment (e.g., NIH/NIAID) conduct a ‘ReAppraisal of AIDS.’

7 Step Plan to resolving our World’s catastrophic public health disaster:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like Amfar) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

I stopped fighting for myself a long time ago.

I fight for humanity.

U.S. representatives can be found here: http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/

Reply

BobM December 20, 2011 at 9:49 pm

Dear CFSBoston,
While many ME/CFS patients are suffering and HIV patients are living and having a close to normal life, we are not in competition with HIV patients nor are we in competition with those suffering from other illnesses such as cancer. We are competing with the Ignorance and lack of Urgency of the DHHS, NIH and CDC. I like your outline and train of thought, but lets not make this ME/CFS vs HIV. Lets continue to make it ME/CFS Patients and loved ones vs Federal Health Agencies Neglect and Ignorance. Together we will make them change.

Thank you for this posting,
Bob Miller

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