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

Discussion in 'Recruitment into current ME/CFS research studies' started by Hoopoe, Nov 11, 2017.

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    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
     
    Ash, healthforall, Inara and 17 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Target appears to be $29,900 but I'm not sure what that gets, in terms of numbers of patients in which projects.

    Edit: I'd like a bit more information about this, in terms of study design.
     
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  4. Jan

    Jan Senior Member (Voting Rights)

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  5. Hutan

    Hutan Moderator Staff Member

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    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.
     
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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Contributed, Facebooked, Tweeted. :)
     
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Inara, Barry and Esther12 like this.
  8. Simon M

    Simon M Senior Member (Voting Rights)

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    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
     
    Last edited: Nov 12, 2017
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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  10. Barry

    Barry Senior Member (Voting Rights)

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    [My bold]

    He gets my vote.
     
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  11. JaimeS

    JaimeS Senior Member (Voting Rights)

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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.

    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.
     
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  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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  13. Alvin

    Alvin Senior Member (Voting Rights)

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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)?
     
  14. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It was probably an MRI, which is not the right kind of scan for this.
     
  15. Sasha

    Sasha Senior Member (Voting Rights)

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  16. Alvin

    Alvin Senior Member (Voting Rights)

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    That too but i also had a spect scan.
     
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  17. Andy

    Andy Committee Member

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    :)
     
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  18. Sasha

    Sasha Senior Member (Voting Rights)

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    24 people have given 2,640 so far - 9% of the way there. :)
     
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  19. Sasha

    Sasha Senior Member (Voting Rights)

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  20. Simon M

    Simon M Senior Member (Voting Rights)

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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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