Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

Mij said:
That is interesting. My mental PEM comes on quickly after exertion, and resolves much quicker than physical PEM, which is always delayed by at least 14-16 hours and takes a minimum of 48hrs to get back to baseline.
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BioBank appt #3 is due this week.

I have previously noted during the ‘standing Blood Pressure tests’ that my Brainfog comes on from just standing still (one of my worse things, I cannot manage queuing....I rock from foot to foot).

It was noticeable even at the first appointment, that I completely lost my words, as I was speaking to the nurse, between the 5 and 10 minute test.
 
@It's M.E. Linda I can relate to what you are describing. I experienced this for many many years, but it has improved (for whatever reason) in the last 8 yrs. I am able to stand without shifting around as much, but I still can't concentrate or speak for very long while standing. Some days are better than others. I need to lie down often to recover.
 
I live alone so I can control my mental and physical exertion, but when my sister visits for a couple of weeks is when I realize how disabled I am when interacting/speaking for too long. My equilibrium is totally off because I can't lie down or rest when I need to.
 
Michiel Tack said:
One interesting bit was at the very end when Van Elzakker said he would like to see more fundamental research into possible mechanisms rather than research into ME/CFS per se.
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hmm....that is surprising since we all know that the amount of funding for this disease per patient, is much less than MS, HIV-AIDS, etc. In the states, it's the least funded disease of any known. If we are talking about "fundamental" research mechanisms that need more funding, do you (or Dr. V) mean basic research on pathogens, the immune system, or glial cells for instance? The basic research budget (annual) for neuroscience is huge in the states. How is it helpful to do less research into ME/CFS than is already being done?
I didn't understand that part of the talk.

I don't agree that the problem is primarily with poor grant applications. Scientists have either never heard of this disease, or, they have heard of it, but they know that the chances of getting funded are very low because they've never seen a mechanism or institute to support it. Breaking into a new area of research is a major undertaking. You must have lots of preliminary data to get any federal funding. The cost of preliminary data for a scientist with excellent standing to be competitive for federal funding is very large (it's more than $50K).
 
Susan K said:
If we are talking about "fundamental" research mechanisms that need more funding, do you (or Dr. V) mean basic research on pathogens, the immune system, or glial cells for instance?
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I can't speak for him but I got the impression from watching the video that he meant fundamental research into mechanisms that could account for symptoms and disability as seen in ME/CFS.

So instead of starting with ME/CFS patients and trying to figure out what mechanisms are defunct, one would work the other way around and start by researching a mechanism that, if defunct, could result in similar symptoms as seen in ME/CFS. To be clear: Van Elzakker didn't say it like that, that's my impression of what he said: that perhaps he expects more of such research than of ME/CFS itself (I.e. comparing patients to controls to check for known biomarkers x,y,z etc.). Even if he didn't mean it like that, I find it an interesting thought.
 
He was definitely talking about the NIH budget being inadequate for basic research, a complaint that is common among researchers since only a small percentage of grant proposals submitted to NIH in any field are funded. It’s a solid scientific perspective, but as a person living with this disease, I would like to see some efforts funded that could yield results sooner.
 
Michiel Tack said:
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So instead of starting with ME/CFS patients and trying to figure out what mechanisms are defunct, one would work the other way around and start by researching a mechanism that, if defunct, could result in similar symptoms as seen in ME/CFS. To be clear: Van Elzakker didn't say it like that, that's my impression of what he said: that perhaps he expects more of such research than of ME/CFS itself (I.e. comparing patients to controls to check for known biomarkers x,y,z etc.). Even if he didn't mean it like that, I find it an interesting thought.
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Yes, this is how most scientists are trained (in contrast to MD's): that if you know the underlying biology of a particular cell type or tissue type, then you are better equipped to figure out what is amiss during disease. Most of us would like to see a smaller defense budget and bigger biomedical research budget. Still, billions are are spent on basic science every year even tho the paylines are still low. And some of these findings may eventually, 50 yrs from now, help understand ME/CFS. But the funding for studying ME/CFS is so low, and is still not recognized as a disease by over half of practicing doctors, so I was surprised that this point was made in this type of forum.

Nevertheless, Dr Van Elzakker certainly gives his time, expertise, and advocacy to pwme, so we are grateful.
 
I don't think he was suggesting money shouldn't be spent on testing treatments and searching for biomarkers in the blood, if there are good leads to follow.

But if we are really to get to the bottom of what is going on in ME we also need a lot of money spent delving into what is going on biologically, whether in the brain stem, as he is doing or with multi -omics studies not only of readily accessible blood, but of CFS and tissues.

I thought that was what he meant by basic science. It seems to me to be likely that only by doing that basic science will there be a real answer to ME that leads to better treatment and even prevention.
 
I think that he’ll keep doing good work and encourage others to join in. But he also said that we should stop operating from a position of scarcity - we shouldn’t be trying for a bigger piece of the NIH funding pie, but push for a bigger pie. Considering that the slice of the NIH pie that we get is so thin, I think that pushing for a bigger slice is essential right now. There are lots of well funded disease groups who can push for a bigger pie.

Dr Collins is very good at working with Congress at increasing NIH funding across the board. At a time in the US when scientific funding is being cut left and right, he has been able to get increased funding for NIH year after year. I believe that there are lots of things that NIH can do to move research for this disease forward. That’s where I am willing to put my energy.
 
How medicine deals with patients that have unexplainable symptoms needs to change.

Currently the answer is ignore, downplay and psychologize. Not just with ME/CFS but with many other health problems.

What they should be doing is acknowledge, admit that nobody has answers, and send patients to scientists that are working on solving the problem.
 
With all the work that people did to send in questions and to @Andy for setting up this video discussion with Dr. V, a huge thanks to everyone on the forum - you helped save my life. 23 years with this disease, the last 5 have really not been living, certainly not contributing, but this community gets it.
 
Susan K said:
With all the work that people did to send in questions and to @Andy for setting up this video discussion with Dr. V, a huge thanks to everyone on the forum - you helped save my life. 23 years with this disease, the last 5 have really not been living, certainly not contributing, but this community gets it.
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It's seriously tragic that the people who have monopolized and sabotaged this disease for decades strongly advise against support groups, which this forum kinda works as. I was seriously demoralized a few years ago until research started to ramp up and the community started growing online. Hope matters.

One of the most absurd moments I will remember from all this is following the publication of the nanoneedle paper, one of the medical quacks pushing the lightning process, a literal false pseudoscience snake oil selling expensive false hope to desperate people, said that it is the research that is giving false hope to patients who don't need anything but the will to get better. Completely delusional and malicious.

It's depressing how slowly things are going but it's a massive community effort, all independently working towards the same goal. We're all helping each other by simply hanging on and doing every small bit we can. It all adds up with time.
 
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