Michael VanElzakker

Does anyone know who is funding Michael's work on ME at Massachusettes General Hospital? Or who is funding Systrum...is it the NIH as I doubt it.

Also, has anyone link on how to donate to Michael's work? There was a link before at some point somewhere!

 

I think it's being funded privately, Systrom and Elzakker. Read it somewhere but can't remember where.

 

@Sunshine3 Donate here

 

I believe that they may also be linked with OMF. He is listed as part of their ME/CFS Collaborative Research Center at Harvard Team: https://www.omf.ngo/scientists-working-on-mecfs-research-with-dr-ronald-w-davis-phd/

 

More info on Systrom here in an August 2017 blog
https://www.healthrising.org/blog/2...ts-chronic-fatigue-fibromyalgia-autoimmunity/

 

In August 2018 Michael on twitter said he was using free weekend fMRI scan time in addition to any private funding plus volunteer time.
https://twitter.com/user/status/1014213897581146112

 

It would be great to see Michael apply for an NIH RO1

 

He could certainly do with some donations...only 13 people have donated.

 

Have they asked for donations? Haven’t seen anything from them. Maybe they’re holding off on asking until they really need the money.

 

I donated ages ago when they were asking for money, just a small amount. So I got a lovely letter from Michael today thanking me. He is very enthusiastic about helping us. I was delighted with my letter of course!! The simple things. So that's why I said I'd make a small donation again. I'd forgotten all about original donation but that's nothing new with the brain I have!

 

Couple of previous threads on his work
https://s4me.info/threads/brain-imaging-study-request-for-crowdfunding.964/
https://s4me.info/threads/interview...-nerve-me-cfs-latent-infection-and-more.1425/ - Dr VanElzakker interviewed by @Amy Proal
https://s4me.info/threads/me-cfs-alert-interview-with-michael-vanelzakker.3273/

 

Hi! I think Mike has said that his current work is pilot research because so it's not eligible for NIH funding. But he will apply for grants in the future once he has sufficient data.

But if anyone can afford it please donate. Ultimately the work he's doing can lead to an affordable diagnostic.

https://because.massgeneral.org/cam...gue-syndrome-exercise-challenge-study/c168141

 

I hope this is OK to post here! I know Mike personally and was confused about his research and funding situation so I asked him to clarify and thought I would share. Also, his experience as a young researcher was interesting to me as a patient, and thought maybe some other people would be curious.

Currently, Mike is spearheading two studies on ME.

1) The first is a dual PET/MRI brain scan. This study is already fully funded. He is looking for evidence of neuroinflammation, which presents in the form of active microglia. These tiny cells work as the "immune system" of the central nervous system, and if they are active it means inflammation is present. The MRI part of the scan shows the brain’s structure, which allows for a targeted analysis of the PET part of the scan. PET is a kind of scan that uses nuclear tracers to measure activity and it can pick up on inflammation. Doing these two scans together shows the neuroscientist exactly where any inflammatory activity is located. This is a replication of sorts of Nakatomi 2014 which showed evidence of neuroinflammation, but using updated methods. (Read Mike’s recent paper on research methods here.) Mike has been able to secure a donation of weekend scan time from Massachusetts General Hospital (MGH), and a generous family has donated the rest of the money needed.

2) The second study involves PEM provocation. This study still needs funds to complete. Patients are given an MRI/fMRI brain scan and then sent to fellow researcher David Systrom for an invasive CPET. After they are rife with PEM exhaustion, they are scanned again. (I am grateful to the patients who agree to this torture!)

The two studies may give more information when analyzed together. Mike is targeting the brainstem which is the brain’s seat of autonomic function. He feels it is a likely culprit of neuroinflammation, and that optimal techniques have not yet been used to study this area of the brain. While PET may be useful in identifying neuroinflammation in a research setting, the radioligands (radioactive dyes) Mike is using with PET aren’t available widely in community hospitals for clinical tests. MRIs, on the other hand, are widely available. While you can’t see neuroinflammation on an MRI, an analysis such as fMRI can infer inflammation. So by correlating these two studies, it may be possible to develop a widely available test that physicians could use to support an ME diagnosis.

Mike is working on funding for the MRI/fMRI study. When possible, he works with patients and their doctors to have the iCPET clinically ordered so their insurance will pay for it. This is helpful because the test costs roughly $16,000. But not every patient or control can have the cost covered this way. MGH is donating “developmental” scan time for this study as well, and his collaborator Ken Kwong is donating time. (Ken Kwong invented the fMRI!) He is hoping for more private donations, and to use pilot data to apply for grants.

He is part of the Harvard Research Collaborative run by the OMF. I think that is Pineapple funding? Money has not been disbursed yet and Mike isn't sure if he will receive any, but he's hoping some of the bloodwork in his fMRI/MRI/iCPET study will be funded.

Mike hasn’t been eligible so far for NIH funding because he was starting out from scratch and they don't give grants for pilot work. Since he has accrued some scans at this point, he can use that data to apply for a grant for his MRI/fMRI study. Mike says NIH grant applications are labor intensive. The NIH will fund only 20% of applications received. So it can be inefficient to commit the necessary time and rigor to apply with little hope of receiving funding. Mike doesn't have a large staff with a grant writer or anything like that so he would be doing a lot of the work himself. As we know, the NIH has said that they are unwilling to increase funding for ME/CFS until they receive more grant applications. Mike feels it’s worth applying as an act of advocacy for the community, even if he has little chance of receiving funds.

I know in the past he’s been hesitant to ask patients for money because so many of us are not working, on disability, or trying to get on disability. He’s very aware of how strained the community is regarding donations. He has a donor page but doesn’t promote it much for this reason and prefers to find other ways to get funding. But I feel any little bit helps!

Hearing Mike’s side of things has been interesting for me as a patient, but in many ways disheartening. A career in ME is not a path you take as a researcher if you want a lot of accolades or a lucrative path. It’s not prestigious. Funding is a huge challenge. If your assigned peer reviewer is from the UK and thinks ME is psychological, it’s an obstacle to publishing. You have to be passionate about helping patients like us. Mike lives on a shoestring in Boston which is one of the most expensive cities in the US. He rents a room which is only marginally bigger than my bathroom, and works a second job teaching classes at Tufts year round to make the rent. Research is not just about the science work -- time must be spent reading journals to stay current, working on funding, networking to find quality collaborators, recruiting patients. Ushering data to publication involves many steps and takes years.

It’s frustrating to me that the NIH has a stance of sitting back and waiting for applications before they’ll commit to the funding this disease deserves. Koroshetz has said it’s difficult for young researchers to get started because of uncertainty in the field, and yet the NIH is doing so little to support young people starting out, like Mike. A lot of our researchers are friends and family who happen to have medical or research training. While it’s wonderful that they have the compassion to help, we need a larger pool of people willing to work on ME in order to move the field forward. And that takes money.

A lot of us are burned out on advocacy but we need to keep at it!

 

Thank you for posting this explanation. It's encouraging to hear of such dedication.

 

The real bummer for ME research is how much time and energy (which equal money) are needed for each grant application. When you consider the nasty and cavalier way in which ME researchers have been systematically persecuted over the past 30 years (even before the overall grant application success ratio descended to 17% or 20%) it is revolting to hear (as at a CFSAC meeting) a low-level NIH staffer snarl arrogantly, "we aren't getting good enough applications." That Dr. Lipkin, for one, could have had a grant application refused because an ignorant committee member thought the disease to be psychosomatic, is absolutely outrageous. Why would NIH put an ignorant booby on a grant committee? Well, by gosh and by golly, they must have wanted to!
Certainly the fact that Dr. Chia was once told "don't come back with anything on enteroviruses" signals clearly that NIH bureaucrats are not on mankind's side. Now we read the consequent headlines; more than 200 youngsters have died from what is apparently a neuromuscular disease which, like poliomyelitis and sometimes ME, stems from enteroviral infections.
And no, don't blame President Trump for this mess. The gangsters in charge are holdovers from both Republican and Democratic regimes.
Really it's a wonder any scientists ever put in a grant applications for bio-medical research on ME.
Let's face it, NIH's call for better grant applications amounts to a very sadistic sick joke. Odds for obtaining funding might be better from entering "Strictly Come Dancing."

 

Hello Robin Durham, I was wondering if you there is an update on how Michael Van Elzakker is doing / if there’s any updates to how the study is? Since reading his two papers I’ve been so excited (not good for M.E, I know! ). I’ve read a lot of research papers but reading his papers on the hypothesis and the brainstem.. I was so excited and thought “he’s onto something and this is so important”. It’s been really frustrating that even though ME is known to be a neurological illness and neuroimmune illness AND that severe autonomic problems, pain, arousal and so on (problems that are SO predominant in severe M.E especially, on a scale that are not found in other illnesses at all.. for example take Whitney who cannot even tolerate movement or even people coming into the room) are known to be processed through the vagus nerve and brainstem.. why is it that most organisations/studies are looking everywhere, but at the actual brain and brainstem and vagus nerve?! To me, I always keep thinking that would have been an important place to look at. I understand the blood too but.. this is so important. Anyway. I have been thinking about this a lot and am so keen to know what’s happening or to get regular updates.

 

Michael VanElzakker is on twitter. He posted this just yesterday:

Code:

https://twitter.com/MBVanElzakker/status/1126663767587262467

https://twitter.com/user/status/1126663767587262467


PS. His twitter account has a lot of other posts, not just for ME/cfs research. Just wanted to provide some info for anyont who might follow that account.

 

Thank you. I hadn’t read that latest twitter post, I don’t go on twitter as I find it too overwhelming but occasionally go to check his posts.
But I also meant whether they had managed to find anything yet, any preliminary results, or are they still in the imaging only stage? And when they think they’ll finish the study and be able to report on it - a timeline of sorts. I’m just too excited

 

He may be presenting an update in June as part of the Harvard ME/CFS Research Group update. Session will be videoed for later sharing.
https://twitter.com/user/status/1125795207629418496

 

He's speaking @InvestinME2019