• 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.

Your $1 is worth $40 in Simmaron’s biomarker funding challenge

View the Post on the Blog

by Sasha


I saw 10 pence on the pavement yesterday. It was lying in some mud so I didn’t pick it up. I wish I had now: I’d forgotten it was really worth four quid.

How come? Because if the Simmaron Research Foundation can get $225,000 for a pilot study, it will bag them a guaranteed $800,000 from an Australian charitable foundation for the large-scale follow-up. Simmaron call this multiplying your donation by five. However, they’ve already raised most of the money for the pilot and only need $20,000 more, so at this point, every dollar you give is worth forty!

The study is a collaboration of Australian and US research heavy-hitters and will investigate natural killer (NK) cell and immune/autoimmune activity in the spinal fluid of people with ME/CFS. Low NK cell function has been long recognized as a hallmark finding in ME/CFS, but until now there have been no studies that identify why and how NK cells function differently in people with this illness.

Also, recent studies point toward characteristics of autoimmunity in patients, a new direction for ME/CFS and one which the Australian team has been investigating. Researching these immune characteristics in spinal fluid is pioneering.

Alex 3619 on the Phoenix Rising forums said, ‘It’s the best study we have going aside from Rituximab. It could lead to not only a diagnostic biomarker, but a treatment biomarker that could guide doctors on how various treatment protocols are working.’

The collaborators are impressive. The Australian team is led by Dr Sonya Marshall-Gradisnuk of the Population Health and Neuroimmunology Research Unit (PHANU) at Griffiths University. PHANU conducts immunological research with a specialty in Natural Killer Cell function and a focus on development of a suite of biomarkers for ME/CFS. In the States, Dr Daniel L. Peterson is a well-recognised medical expert on the disease and has devoted 25 years of his clinical career to research collaboration and care of patients; Dr Konstance Knox has a special interest in HHV-6 and is co-founder of Wisconsin Viral Research Group, which has a long history of collaboration on studying immune system abnormalities in ME/CFS patients.

Bob Miller, ill with ME/CFS for over 20 years, and his wife Courtney – famous for extracting a promise from President Obama to chase up the NIH to improve their research funding for the disease – recently put out a call to boost donations for the study, which they describe as ‘groundbreaking’. They wrote, ‘Magnifying our research funding is paramount. Studying biomarkers is pivotal.’

I agree. I’m pretty tight-fisted but I have donated a fair whack of my cash because I think this is such an important study. But even if you can only give a few bucks/quid/euros it’s worth it because, well, it’s being multiplied by FORTY...

Follow this link to give, which is an easy process:

http://simmaronresearch.com/donate/

Let’s get that biomarker!
View the Post on the Blog
 
Great news from Courtney Miller on Simmaron's Facebook page a few hours ago, for which I've started a separate thread:

Great news! We have completed raising all the funds for our Australian spinal fluid study! The last quarter of 2012 brought donations large and small that finalized the funding for this groundbreaking pilot study and will unlock follow-on funding for our Australian collaborators. Thank you to all our friends for your generous support! ~ Courtney


Thanks to everyone here who gave - fantastic that it's been possible to fund such an important study. :balloons:

Thanks great news :) ..another step forward.

is that just the funding for one of their studies sorted out now? or are they doing other studies which still need more funding?