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

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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!

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Can't argue with that can you and it is a very promising study. I'm going to make a donation,

 

I have most certainly donated Sasha - I think when alex mentioned and the importance of this research.

 

I will donate, this is deserve our donation

 

I've donated about a month ago, I agree it's an exciting study.

 

Thanks PR for highlighting this to help get the money for this important research.

 

Thanks, guys!

There is a finding from experimental psychology that people are more likely to do what they see as the norm. However, it's in British culture (and maybe many others) to keep quiet about your donations to charity. I must admit I felt a bit of stiff-upper-lip conflict when I said that I had donated fairly big-time (for me) to this project but I think it's helpful that if you have donated, you let others know, to set the norm. I really do think it encourages other donations. And nobody wants to think that their 10c is going to sit all alone in the collection bucket!

 

Thanks, Sasha. Have donated before and will donate again now, and spread the word. We need to get those missing $20,000!

 

Thanks, Sasha. Have donated before and will donate again now, and spread the word. We need to get those missing $20,000!

Thanks, Anne - and spreading the word is a great idea.

 

Please do not construe this as saying this should not be funded, but there are already biomarkers - researchers just have to start using them. At the CFSAC meeting the comment was made by I believe Nancy that biomarkers must be accepted by the entire medical community. This is a catch-22. Most of the medical community doesn't even believe in ME or CFS much less biomarkers. In order for biomarkers to become accepted, they have to be used in research.

And instead of a biomarker that includes everyone, biomarkers for subgroups are the most likely to be unique. In other words not also found in other conditions and disorders that are confused with ME and CFS. Bit of a Gordian knot.

 

The problems with biomarkers are why this research is important. Its an international collaboration with a diversity of talent that is already looking at biomarkers. Its hard to get drug companies interested if we don't have biomarkers. We also need them for diagnosis and establishing claims to insurance or disability. With good biomarkers we may be able to monitor treatments and more effectively determine what is working and what isn't. In short biomarkers are an essential step toward solving the ME and CFS mysteries. In particular by using biomarkers a doctor may be able to monitor and individualize treatment based on how a patient is responding. A breakthrough in this area may change the game forever.

 

Absolutely, good solid bio markers would change the game and this is research by a good group that have already done well to get good funding commitments. It's important to shout about it and encourage others to donate. We all want research like this to go ahead so the more we support it and tell others about it the more chance there is of that happening.

 

I just donated (again) to this study to find a biomarker. Good luck to the researchers!

 

We have spread the word widely in the Swedish ME/CFS community and quite a few people have made donations. Sasha, do you think Simmaron could report back on progress, for example on their Facebook page? I think if people get feed-back and feel their donations are being counted towards the goal, that makes them motivated to donate next time too.

 

Sorted!

Good luck to them although I hope they don't expect to find a biomarker that's specific to ME/CFS.

 

We have spread the word widely in the Swedish ME/CFS community and quite a few people have made donations. Sasha, do you think Simmaron could report back on progress, for example on their Facebook page? I think if people get feed-back and feel their donations are being counted towards the goal, that makes them motivated to donate next time too.

That's great, Anne! I agree it would be great if Simmaron could update on progress - I'll suggest that to them.

 

That's great, Anne! I agree it would be great if Simmaron could update on progress - I'll suggest that to them.

Yes, we donated a month ago and I am surprised to see that the figure needed is still $20,000. That is not encouraging. Surely they must be close now. If we knew they just needed a little more we might look to donate more.

LFH

 

Yes, we donated a month ago and I am surprised to see that the figure needed is still $20,000. That is not encouraging. Surely they must be close now. If we knew they just needed a little more we might look to donate more.

LFH

There's a message on their Facebook page that they're firing on all cylinders on the research front but run ragged and short on staff to do other things - I suspect that updating that figure is one of the jobs that's slipped down the list.

 

Yes, we donated a month ago and I am surprised to see that the figure needed is still $20,000. That is not encouraging. Surely they must be close now. If we knew they just needed a little more we might look to donate more.

I put that forward to them and they've just provided an update - it will take them a while to update on the website itself but they've posted a Facebook message here:

http://www.facebook.com/SimmaronResearch/posts/505760552789439

that says:

Our deepest gratitude to generous patients and their loved ones who have donated more than $7,000 online since October 1! We are closing in on the last $$ for the Australian study, and we have very exciting possibilities for next studies too! Thank you to Phoenix Rising, ProHealth and all our fans for spreading the excitement.​

So, $13k to go, to get $800,000! Let's keep on giving!

 

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.