Discussion in 'ME/CFS research news' started by Sunshine3, Dec 28, 2018.
Yay thank you so much! Will definitely try to Watch the video conferences
Hi lunaraindows, thank you for your support!
You can see Mike's presentation at the NIH April conference starting at 4:32:00 here ----> https://videocast.nih.gov/summary.asp?Live=31640&bhcp=1
As someone others have noted, he will presenting at IiME and the upcoming Harvard ME/CFS launch.
He's on the schedule for Day 2 for IiME 5/30. I'm not sure if there is going to be a webcast? His research assistant, Sydney, presented some preliminary data today at the Thinking the Future young researcher part of the conference. I will try to link a tweet hope this works...
As far as I know Mike will be speaking at the Harvard Symposium on 6/8 which is going to be recorded and made available.
Thanks again for your interest! The last time I chatted with Mike he was very excited to be working on his research program. He's always reaching out to othler scientists to collaborate, like his work with Ken Kwong and David Systrom. He is a guy with a lot of ideas and enthusiasm!
IiME will be releasing video, on YouTube I think, of the presentations from the Friday, which is when he is speaking again.
I figured there would be more chances of a response here than on Twitter. More specifically he's looking at who already went to the trouble of storing samples. Does the UK biobank go there?
I watched Michael's presentation at the Harvard symposium yesterday. I think he's looking in a very promising direction. One thing that really struck is when he mentioned how most of neurology is focused on the neocortex and the more primitive parts of the brain are boring stuff. I think he's right that things are overlooked there. It's where everything plugs into and modulates nervous response.
Jonas Bergquist, maybe?
Uppsala University's new research centre around ME will be the third in the world after the universities in Stanford and Harvard. All projects are funded by the Open Medicine Foundation, a research foundation in the United States based on private donations. In Uppsala, the funds will initially be used for a doctoral student in analytical chemistry, the first in Sweden that has a focus on biomarker research within ME. The centre therefore starts on a small scale and develops from the existing research solution.
“In addition, other research groups and the already existing specialist clinics for ME in Sweden will be associated with us, says Jonas Bergquist. “The focus will be on care, diagnostics, sampling, collection of samples and biochemical analyses.”
ETA: Bergquist had already been suggested on twitter... Apparently he doesn't have the right kind of samples.
Pretty sure Peterson had the samples Lipkin used.
If anyone hasn’t watched it yet, OMF have the Harvard conference presentations up and I agree Michaels is very good and very watchable from a lay perspective. His research is partly on microglia activation (yay) and interesting from a severe perspective he gave some possible explanations of our often severe problems with normal mental function and sensory sensitivities (drawing on what is already known in concussion) so I’m very excited by this brain research.
I don’t think uk does CSF ME research, just CFS!
James Baraniuk over at Georgetown University has done CSF sampling of ME/CFS.
I agree that it looks promising that an area of the brain not normally bothered with might turn out to be important for us and it’s a fundamental part and we are fundamentally struggling
Amy Proal interviews Mike VanElzakker about his work, mainly about how neuroimaging works, what it can and cannot do. Also some discussion about their respective views on how ME should be studied and how the brain stem and vagal nerve could be playing a role, and how very different triggers could conceivably all lead to a syndrome that gets diagnosed as ME. Interesting even though no new research results were mentioned - but Amy suggests at the end they should have a follow-up interview to discuss preliminary findings so watch this space.
I only listened rather than watched, but occasionally half opened an eye and there didn't seem to be any slides or anything, just talking heads.
Video posted July 18, 2020
There will be a part two to this video
@Jonathan Edwards I’ve seen many tweets like this from VanElzakker. Does it make sense to you in a rheumatologist perspective? It’s not like one keep looking for “a deeper cause” in rheumatology patients, any effect from immunosuppressant is a win in your field, isn’t it?
Seems like feeling good or feeling better would be a reasonable goal for any treatment.
Only reason I can see is if it is masking symptoms/giving a false feeling of effect and/or making one ignore symptom -> use more energy than one actually have => crash/getting worse in the long run. Unless we are talking about placebo, I have never heard of anyone experiencing that with immunosuppressant.
There are lots of anecdotal reports where people with ME/CFS describe how they start to feel much better when starting treatment with an immunosuppressant like hydrocortisone only to regress back later or even end up worse than baseline. On the other hand, other types of treatments also often end up having diminishing effects over time. Anyway, I think it's a valid concern that immunosuppressants may end up doing more harm than good for us if we don't understand what the deeper cause of the problem is.
Good point, but I think hydrocortisone is special there. That is also the case for non-ME-patients. Should have specified Immunosuppressants other than Steroids.
I personally do not use the term immunosuppression because it has no very useful meaning. The treatments we use in rheumatology are designed to target specific steps in immune pathways and yes, we do want to know a deeper cause in order to predict which pathways we want to address.
The general concept of immunosuppression was popular in the 1980s when all we had were cell toxins like cyclophosphamide, a azathioprine and methotrexate. Things moved on in the mid 1990s.
So to answer your question, I don't know what Dr van Elzakker means other than that throwing drugs that affect the immune system at an illness without knowing why is hard to justify. Having said that, if you have preliminary evidence by a chance finding that it might help - as Fluge and Mella did, it is entirely reasonable to try.
The problem that I see is that both Amy Proal and MvE seem to invest in ideas of ongoing infection - for which we have no basis either.
Jes, you are spot on. If the core problem is not known, then these various treatments like hydrocortisone do eventually result in frightful crashes, which are very long, months, and years. We have gone through this on many occasions where a doctor prescribes something and there is a bit of an improvement, and then bang, a horrific crash. I am utterly devastated that folks go to Mars and there is sophisticated technology and the cause of this 'exertion intolerance' is not located. Is it because people are not dying en masse, so it's not viewed as urgent? We keep going from conference to conference and everyone has his hobby horse, and the cause is not found. I am very discouraged. How much longer are we to wait while the young sweat on beds in darkened rooms living like prisoners, watching their lives destroyed.
The ME doctor I saw in 1992 told me that we won't return to our previous baseline everytime we relapse from unproven treatments. This was my experience years ago.
Seems like you were right - the immunosuppression skepticism is all about an ongoing virus theory.
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