Enrolling: Stanford Neuroinflammation Study

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This study is interested in ME/CFS patients who would classify themselves in the severe category (mostly bedbound, could be housebound). Dr. Montoya and Dr. Michelle James, a neuroradiologist at Stanford University, aim to investigate the inflammatory process in the brain of ME/CFS patients. They believe that this study could lead to improvements in our understanding of the disease and help with targeting treatment.
Who:
Dr. Montoya at Stanford University looking for individuals who are severely affected by ME/CFS

When:

Ongoing


What:

An investigation regarding neuroinflammation in those severely impacted by ME/CFS.
Please note that it would be ideal if you live in the San Francisco Bay area. It can be arranged for the team to go to your house for some testing before a brain scan (that would need to occur on Stanford’s campus).


Where:

Stanford University, Palo Alto, California


How to Participate:

Click this link and complete the short questionnaire: (https://redcap.stanford.edu/surveys/index.php?s=PHRYFC4RM7)
or email: [email protected] for more information

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13 thoughts on “Enrolling: Stanford Neuroinflammation Study”

  1. Marcia E. Barber

    I’ve been following the progressive work at Stanford for years, and am encouraged for younger patients. At age 72 I am housebound and spend more time in bed than out — would say that ME/CFS is now severe. But there is no way I could participate in your studies. Living in Michigan, financially and physically unable to travel, it’s not possible. Have you considered local partnerships?

    1. I think that if this study gets reasonable data, they would consider doing the study at multiple sites. They might also consider this if they are unable to get enough subjects to reach their goals. Studies often have to start small, gather data, and then — with that evidence — apply for a larger grant to do more work. I hope they receive a lot of interest!
      I know Jarred Younger is also doing neuroinflammatory studies, but unfortunately, he is not near Michigan, either. Keep your eye out for studies near you as we post more, Marcia!

  2. To whom it may concern , I’m severely sick with me/cfs , bed bound . I’d like to participate in your investigation regarding neuroinflammation . I’v been sick for 29 years and I think the history of my illness would be interesting for the investigation , I’m 70 years old , and was wondering , if there is age limit . I live in San Francisco . Thank you for work you are doing .

    1. Sofia, definitely contact the people running the study to answer this question. Sometimes there are age limits. I hope you are able to participate!
      Jaime

  3. So disappointed that you have to live in the San Francisco Bay Area to be in this clinical trial I live in Oklahoma where there are no clinical trials no experimental treatments. I would so be thankful to be included in such a study with this being my 10th year Milestone was CFS/ME. I haven’t I have experienced a 10-day steroid treatment of prednisone which took my cognitive levels back to normal for 7 days. The inflammation that went down in my brain with the steroids worked, I know this needs documented I know that there are clinical trials to try everything possible and I am willing and able to do this

    1. Keep your eye our for additional studies as we post more, Jacki — there may be other studies in your area in the future. It’s very interesting that prednisone helped so much! Were you unable to get more, or did your dr think it was unwise?
      Other pwME have real issues with corticoids, myself included. I wonder if Dr Montoya might be interested in this info. I’ll pass it along.
      Jaime

    1. You would have to get in contact with those who are running the study, Andrea ([email protected]). But I do know that Mike VanElzakker is doing neuroimaging and recruiting for his studies. He’s around Boston.

  4. I can’t get the link to copy & when manually input it directs me to a page that informs me I am not a participant of the survey. Any chance the link posted could be faulty?

  5. Spain, Monika enferma desde hace 12 años, ahora tengo 41 y voy empeorando.
    Diagnosticada desde 2016 sólo EM / SFC y FM

  6. Anyone know if the Hunter Hopkins ME/CFS/FM clinic is involved in similar studies here in Charlotte, NC? The former owner, Dr. Charles Lapp, was a key player in the Ampligen study, and wondered if the new clinic director will participate similarly. I’m about to turn 79 and been sick since 1984 so I’m likely to be over any age limits but I know there are many in this area with FM and/or ME/CFS/FM. I have ME and FM. Age disorders muddy the ME waters. My “new” clinician reduced my tramadol without telling me. Dr. Lapp would never do that. I can’t afford to go to the clinic any longer. My resources are very limited to just covering rent, food, meds, and necessities. Savings are gone.

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