Open (MA, USA) “Brain Scan Study [PET-MR] of ME/CFS, 2023, VanElzakker

More detail from this link (broken up for ease of reading):


About the Campaign

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) represents a challenging intersection of immunology, neurology, endocrinology, and other fields. Investigating such a broad and complex condition requires access to technology, instrumentation, and methods that are not available at the average doctor’s office.

The Martinos Center for Biomedical Imaging in Boston is one of the world’s premier research centers. This unique facility consistently produces high-impact research largely due to a highly collaborative organization and culture.

Clinical researchers such as neuroscientists, neurologists, and immunologists are able to push the envelope in their respective fields because they work alongside bioengineers, radiologists, and physicists with expertise in imaging technology.

Thus we have the ability to answer challenging research questions due to the advances in the technology that are happening on our own campus.

Dr. Michael VanElzakker is a Martinos Center research fellow affiliated with Massachusetts General Hospital, Harvard Medical School, and Tufts University.

He has a background in neuroendocrinology and clinical neuroscience and is known for an influential hypothesis of ME (CFS) that centers on the intersection between the nervous and immune systems.

Our ongoing research program includes three projects:

1. Neuroinflammation scanning

2. Scanning before and after exercise challenge

3. Targeting cellular activity in the Nucleus of the Solitary Tract

Your contribution will fund these studies. Each answers novel questions in novel ways, elucidating the mechanisms of ME (CFS) pathology.​

Whole thing here: https://because.massgeneral.org/cam...onic-fatigue-syndrome-research-at-mgh/c153689
 
I wonder if Michael VanElzakker has considered partnering with an overseas collaborator e.g. a New Zealand researcher using this New Zealand lab.

http://nzbri.org/Labs/mri/

In addition to MRI, we have recently begun to image the brain using Posititron Emission Tomography (PET). PET imaging allows us to image glucose metabolism as well as the accumulation of amyloid (a protein associated with Alzheimer’s disease).

For more details, or to discuss proposed research areas, please contact: Tracy Melzer
MRI Research Manager, New Zealand Brain Research Institute
​

The cost of scans is likely to be much less. It might be something that NZ people could find funding for, to increase the sample size and robustness of the study.
 
This thread Suggests that the planned pilot study might be redundant because a much bigger study is in the pipeline: https://www.s4me.info/index.php?thr...myelitis-chronic-fatigue-syndrome-me-cfs.965/

It says that Watanabe, senior author of the original PET neuroinflammatiom study, has funding for a new 120-case study. Wish I could work out how to add links to text with an iPad but as I can’t, hers the one to my blog about that study. I’ve heard a small UK study on this is also planned/under way but don’t think it’s for me to say any more than that.
http://phoenixrising.me/archives/24936?preview_id=24936
 
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Dolphin said:
http://me-pedia.org/wiki/Michael_VanElzakker
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On the topic of CBT: "I understand that this is a really charged topic among CFS advocates, and there is a lot of misinformation out there. Just to be clear, cognitive-behavioral therapy (CBT) does not get at the root cause of CFS. CBT offers coping strategies and is not a cure. But I can’t think of a single medical condition that isn’t exacerbated by stress. CFS is no different. Having a chronic illness is stressful and it makes one’s life complicated and there’s a grieving process. CBT is for those parts of the illness. It’s intended to help people solve problems and to challenge dysfunctional patterns. If you’re seeing a CBT practitioner who views CFS as a psychologically-based illness and is approaching your CBT that way, fire them. Find someone else."
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[My bold]

He gets my vote.
 
Sasha said:
Can anyone put this work in some sort of context for non-expert patients? What is its significance?

@JaimeS, @Jonathan Edwards, @Simon M, for instance? :)
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Watanabe did a very small study ages ago that hasn't been replicated.

Nakatomi et al. (2014) performed a small PET imaging study using 11C-(R)PK11195, a protein used to visualize brain inflammation, since it is a marker for neuronal damage.

The BPND values of 11C-(R)-PK11195 in the cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pons were between 1.5 and 3 times as high as that of healthy controls.

upload_2017-11-12_16-27-13.png

(Nakatomi et al., 2014 -- Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study : BPND of ME/CFS patients versus healthy controls)

So last time they were looking at neuroinflammation. 'Neuroinflammation' is on the list of things M V-E will be looking at, but I'm not sure if he'll be scanning in the same way.

I'm also far from an expert on PET or anything, so as always, check stuff out on your own as well, and I'd be happy to hear if anyone else has more insight.

Barry said:
[My bold]

He gets my vote.
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That's from when I interviewed him. :) So far as I can tell, he's got the right idea about the disease. Already over $2,000 of the way in. Don't just donate, please help promote by discussing it on Facebook and other social media sites.
 
JaimeS said:
The BPND values of 11C-(R)-PK11195 in the cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pons were between 1.5 and 3 times as high as that of healthy controls.
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I had a brain spect done a couple years back and have a copy of the images, the staff radiologist said it was normal but i wonder if my images may be of value to this research (is it the right kind of scan)?
 
Alvin said:
I had a brain spect done a couple years back and have a copy of the images, the staff radiologist said it was normal but i wonder if my images may be of value to this research (is it the right kind of scan)?
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It was probably an MRI, which is not the right kind of scan for this.
 
Simon M said:
I’ve heard a small UK study on this is also planned/under way but don’t think it’s for me to say any more than that.
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i’ve checked and that UK study didn’t go ahead (at least not with a funding source I’d heard of) so the only other study around is the Watanabe one.

There’s always a lot to be said for replication by a completely independent group as in this case. However the other study is vast (120 subjects) and it would be good to know more about that one first.

@JaimeS do you know if Michael V has contacted Watanabe to find out any more about that planned study?
 
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