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Webinar: Massachusetts ME/CFS & FM research update - 23 October 2021

Discussion in 'BioMedical ME/CFS News' started by Jaybee00, Oct 22, 2021.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Last edited by a moderator: Oct 25, 2021
    DokaGirl likes this.
  2. Samuel

    Samuel Senior Member (Voting Rights)

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    appreciate seminars existing but e.g. specific times are not possible for me. i have never been able to attend a seminar since before y2k. i hope there will be a youtube and i hope that they will say so next time.
     
  3. Solstice

    Solstice Senior Member (Voting Rights)

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    That's quite the line-up.
     
    DokaGirl, Forbin and Hutan like this.
  4. Hutan

    Hutan Moderator Staff Member

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    It's on in 40 minutes.
     
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  5. Solstice

    Solstice Senior Member (Voting Rights)

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    I doubt I'd last long(that's what she said), but is there a way to watch this? I can't find a way on the site in the opening-post.
     
    DokaGirl, cfsandmore and alktipping like this.
  6. Solstice

    Solstice Senior Member (Voting Rights)

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    Sorry Registration for this event ended on October 23rd, 2021 12:00 PM

    Registration is closed for this event

    This is an on-line webinar brought to you by the Massachusetts ME/CFS and FM Association in Partnership With the National Institutes of Health. This event is a part of the Association's 2021 Annual Meeting of the Membership.

    Nevermind :) . Hope someone with a bit more energy does a write-up.
     
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Oops looks like we are shut out…..if it can’t be done last minute it usually doesn’t get done by me…..
     
    Last edited: Oct 23, 2021
    Samuel, DokaGirl, alktipping and 2 others like this.
  8. strategist

    strategist Senior Member (Voting Rights)

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    Dr Nath's talk.

    My interpretation of what he said initially is that a significant portion of patients enrolled in the intramural study were misdiagnosed. If true this means ME/CFS clinicians need to do a much better job at ruling out difficult to diagnose diseases.

    Handgrip strength in patients is normal, but time to fatigue in the handgrip test is abnormally low.

    Pain is increased. Nerve fibers in skin are normal.

    Patients perform poorly on a number of cognitive tests.

    Patients have mild anxiety and depression.

    They've done very extensive immunology. The data shows big differences between men and women. NK cell function was normal.

    The gut microbiome results align with those previously published.

    Bioenergetics show metabolic inefficiency. There is a drop in mitochondrial function after exercise compared to controls.

    Not all data has been analyzed yet.

    (I think I missed a few because I was distracted twice)

    The impression from the body language is that they did not solve ME/CFS. I think if they did, they would find it difficult to contain excitement. But they did seem to have found a few things.
     
    Last edited: Oct 23, 2021
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  9. strategist

    strategist Senior Member (Voting Rights)

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    Lipkin's gut microbiome findings: total bacterial mass in feces increased, but butyrate producing bacteria and butyrate are decreased. Butyrate is important for a number of processes in the body.

    There is an expansion of specific B cells in the illness, now confirmed by a second group.

    Patients have higher inflammatory responses to candida yeast and gut bacteria.

    Mitochondria in patients recover from exercise only slowly. Accumulation of citric acid indicates that the TCA cycle is blocked.
     
    Last edited: Oct 23, 2021
    lunarainbows, Ash, MEMarge and 19 others like this.
  10. strategist

    strategist Senior Member (Voting Rights)

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    I'm getting very tired now can't follow Unutmaz' presentation well but he is also finding microbiome abnormalities (more marked early in illness), along with MAIT cell abnormalities which regulate the microbiome.
     
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  11. Solstice

    Solstice Senior Member (Voting Rights)

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    Don't wear yourself out on our account, much appreciated the parts you shared.
     
    MEMarge, DokaGirl, janice and 9 others like this.
  12. strategist

    strategist Senior Member (Voting Rights)

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    I missed a good part of the Hanson talk. She believes she has very important data obtained by sorting immune cells according to type and examining gene expression of each type. This showed some cell types don't respond much to an exercise stressor but others do.

    Also she thinks that long covid has made clear that you can have a postviral illness without realizing it because the onset of symptoms can be delayed. I thought the same: this could explain the apparently non-infectious onset ME/CFS cases.
     
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  13. Hutan

    Hutan Moderator Staff Member

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    The webinar is being recorded and will be posted on You tube in a few weeks.
     
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  14. Braganca

    Braganca Established Member (Voting Rights)

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    Interesting, have seen that mentioned multiple times in the press, that long covid onsets often 3 months after infection. Correlates to my own illness which onset 3 months after a bad virus which itself was 2 months after flu.
     
    Ash, MEMarge, Channa and 10 others like this.
  15. alktipping

    alktipping Senior Member (Voting Rights)

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    the excepted fact that people can have an infection that is asymptomatic should have cleared up this particular fallacy .
     
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  16. strategist

    strategist Senior Member (Voting Rights)

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    The delay in appearance of symptoms could not be unique to SARs-2 postinfectious illness. That could mean that the true number of postinfectious illness cases are far higher than currently assumed.

    Before the pandemic, most patients with an infectious illness that triggers such a syndrome did not have any testing done to identify the pathogen. If this data isn't collected systematically the causal link to a later chronic illness remains invisible.
     
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  17. Hutan

    Hutan Moderator Staff Member

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    Location:
    New Zealand
    The US Massachusetts ME/CFS & FM Association hosted a 3.5 hour webinar on 23 October 2021

    Speakers included
    Phil Chernin (President Mass ME/CFS and FM)
    Leah Williams (Past-President Mass ME/CFS and FM)
    Vicky Whittemore - NIH, has responsibility for the ME/CFS research programme
    Avi Nath - NIH -

    And participants in the ME/CFS CRCs
    Ian Lipkin - Columbia
    Derya Unutmaz - JAX Centre
    Maureen Hansen - Cornell
    Lucinda Bateman - Bateman Horne Centre


    More background on the group is on this thread:
    USA: Massachusetts ME/CFS & FM Association news - next event 23 Oct 2021 webinar

    The webinar was recorded, and will be loaded up in the group's YouTube channel in a few weeks.
     
    Last edited: Oct 25, 2021
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  18. Hutan

    Hutan Moderator Staff Member

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    Here's some of the points that I thought were key, or interesting:

    NIH funding for ME/CFS
    Vicky Whittemore noted that 10% of NIH/ funds is used for intramural studies and more than 80% is used for work done extramurally i.e. by contracted researchers. She showed a chart showing that NIH funding for ME/CFS was $5 million per year, and jumped to around $14 million in 2017, and it has been flat since then.

    She made the point a number of times that not many diseases or health conditions have dedicated funding. Mostly, funding depends on NIH receiving good quality research proposals. So, if the NIH received a whole lot of very good proposals for ME/CFS research next year, they could potentially all be funded. She really stressed that more good proposals are needed.

    The process of re-funding the CRCs is just getting underway (the 5 years of funding is nearly up). It sounds as though there will be further funding of CRCs although the process is competitive, and so it's not necessarily the case that the organisations that are currently CRCs will be re-funded. (Although nothing was said that suggested dissatisfaction with the performance of the CRCs.). Whittemore noted how disruptive the pandemic has been for research.
     
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  19. Hutan

    Hutan Moderator Staff Member

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    Location:
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    Map ME/CFS and Search ME/CFS (on ME/CFS net)
    Map ME/CFS is a repository for ME/CFS data (e.g. genomics, cytokines, protein expression). Researchers around the world can access the data and use it for hypothesis generation and research.
    Search ME/CFS records what biospecimens are available. ME/CFs researchers can request access to them.

    NIH Intramural study
    Phase 1 has almost been completed - 'conducting a cross-sectional study for deep phenotyping of infectious onset ME/CFS to identify pathophysiology'. Data analysis is mostly complete, with publications coming soon. There were 17 patients with well-matched controls.

    The selection of patients was very restrictive - they needed to fit CCC, Fukuda and IOM criteria. The requirements including being sick less than 5 years, aged less than 60, and to have an infectious cause documented in medical notes were restrictive. 484 patients expressed an interest. Of the 27 patients who completed visit 1, only 17 were found to have ME/CFS. Of the 10 excluded after one visit, causes of their illness included cancer, Parkinsons, MS and an inflammatory condition.

    The function of the 17 ME/CFS patient was markedly lower than those of the healthy controls (SF-36 60 for healthy controls and 22 for ME/CFS. This is despite the fact that they actually excluded candidates who were too inactive, as they didn't want to confound the results with the impact of inactivity.

    Handgrip strength was pretty much the same wrt maximum force. However, the time to fatigue was generally considerably shorter in ME/CFS.

    There were some charts presented on pain and the suggestion that there is increased pain sensation in ME/CFS, but it wasn't clear exactly what that means. Skin biopsies found that nerve fibre density was normal.

    In the cognitive testing, the average was poorer in ME/CFS, but there was a lot of overlap. In such a small sample, there is a lot of scope for biased selection in cognitive performance. Anxiety and depression wasn't really different between ME/CFS and healthy controls. It should be noted that patients with major depression were excluded, and patients on anti-depressants had to have a stable condition. So, Im not sure that finding tells us much, other than it is possible to have ME/CFS without being anxious or depressed. Lucinda Bateman later commented that people are generally depressed and anxious in the early stages of the illness as there are a lot of losses, but, as they adapt, they return to their set point.

    Physiology working group - few details. At anaerobic threshold (in a single CPET) there is a decreased work rate and rate of oxygen consumption and decreased heart reserve. These appear to be solid findings.

    Immunology working group - Nath noted that it is hard to come up with a cohesive story - 'some of these things are hard to reconcile'. He was initially clear that there was no difference in NK cell function. The method used to assess NK cell function was a 'chromium release assay'. In response to a question, Nath did note that there was variation and the sample size was small and that he couldn't rule out there being subsets.

    Following exercise, lymphocytes showed decreased maximal respiration and decreased spare respiratory capacity in a Seahorse study.

    Asked if there was any evidence of neuroinflammation, Nath said that immune abnormalities were found (that is as specific as he got).

    When asked if there was anything that was surprising or something that needs further investigation, Nath replied that there was a big difference between the pathways in men and women, and that it is important to separate out the two populations. Which might be true, but is a disappointing answer, suggesting that data in this very small sample has to be sliced into even smaller groups in order to find trends.

    Walitt was singled out for special thanks for his role in running the study.
     
  20. 5vforest

    5vforest Senior Member (Voting Rights)

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    Thank you so much @Hutan for providing these summaries.

    Some random comments:

    Frustrating that this is at odds with messaging from OMF and others, who say that NIH won't fund promising research on e.g. the nanoneedle. I guess it all comes down to a different definition of "good quality"? Incredibly frustrating to keep seeing this though.

    I still can't quite believe the misdiagnosis rate. Also, wonder what the "inflammatory condition" is?

    Very interesting, considering that "Decreased NK cell activity is considered the most consistent immunological observation in ME/CFS patients" (cf https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-019-1202-6)
     

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