Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Lipkin at the NIH: NIH Telebriefing Transcript Available

Discussion in 'General ME/CFS News' started by Cort, Mar 26, 2018.

  1. Cort

    Cort Phoenix Rising Founder

    I always love listening to Ian Lipkin. He's very clear and very organized. You can find the transcript and call here - https://www.nih.gov/research-traini...ves/mecfs/nih-me/cfs-advocacy-call-march-2018

    Some highlights for me - Lipkin emphasized subsets

    ...........................

    Metabolomics - It was good to hear about the metabolomics work Lipkin is doing with the same people I believe Ron Davis and Bob Naviaux are working with. This is good because the machines are so "touchy". Really looking to the spinal fluid work with Simmaron

    Nevada Center - nice to see that Lipkin is pleased with the work done by Lombardi at the former WPI

     
    Neunistiva, Darla, Sushi and 13 others like this.
  2. AdamS

    AdamS Senior Member

    Messages:
    301
    Likes:
    882
    Lipkin talks a lot of sense.
     
    Murph likes this.
  3. maple

    maple

    Messages:
    80
    Likes:
    157
    But nothing new here. He is just saying what many others have said before.
     
  4. alex3619

    alex3619 Senior Member

    Messages:
    12,756
    Likes:
    36,108
    Logan, Queensland, Australia
    I agree.
     
    CFSTheBear and arboretum like this.
  5. fingers

    fingers Senior Member

    Messages:
    398
    Likes:
    271
    SW Endland
    I disagree.
    This is Metabollocks.
    There are many subsets of fatigue...of course there are.
    However, there is a disease which is generally known as ME, and this is of infectious agent origin, typically sudden onset with viral-like symptoms...indeed probably caused by a virus with ongoing viral symptoms. It needs to be treated as such
    Big data is fine, but how about talking to sufferers? Talk to those gaining improvement on antiviral/antiretroviral drugs for example.
    Lipkin selling us down the river people.
     
  6. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,100
    Likes:
    3,550
    Pacific Northwest
    It sounds like he is looking to solve the puzzle of ME/CFS, in all of its variations, and to get the work published, which will help get it taken seriously by medical institutions and insurance companies in the long run.

    Doesn't sound like anything with immediate applicability to treatment today is imminent, so we likely have to keep going with our own n=1 experiments.
     
  7. Cort

    Cort Phoenix Rising Founder

    True - nothing new. In fact he said he couldn't share anything new he had. Still I like it when researchers emphasize subsets :) I love it that he's working with Fiehn...
     
  8. Cort

    Cort Phoenix Rising Founder

    Well hopefully we'll get the studies which identify that subset. I would think it would pop out in the molecular work at some point.
     
    Mel9 likes this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    12,756
    Likes:
    36,108
    Logan, Queensland, Australia
    The problem is nobody can identify A single virus. Indeed huge numbers with viral onset and viral-like symptoms also have no identifiable continuing viral infection. Now it might be hard to find, but with decades looking we should have found it. It might be enteroviruses, for example, but the finding is inconsistent. I suspect a double hit in my case, measles encephalitis as a child, then Coxsackie 3B as a young adult.

    Quite a lot of data also suggests that ME is two or more illnesses, though it may be one with two different manifestations, that is not uncommon in viral infections for example.

    New data is supposedly coming out of Stanford soon, we are waiting for publication, that might have identified the genetic risk factor, and its in the immune system as has long been suspected. If confirmed, then the issue is not just about a virus, but a virus and an uncommon immune reaction to it. Understanding what that response is might give us a better grasp of what ME really is.

    Stanford is also changing its story on antivirals, with the position that we might need up to five years on antivirals, not all antivirals will work, and those that do have other properties aside from stopping a specific type of virus replicating. More is expected on this, but I do not know when.

    ME is also associated with non-viral severe infections, and also a range of toxins. These are just less common. Then there is the question about how to study those with EDS who get ME, what is it about the genetic issues in EDS that increase ME incidence? My guess is its about a weakened blood-brain barrier.

    Then there is the subgroup that includes encephalitis survivors, who fit the definitions but have a slightly different cytokine profile. Is that important, or just a different manifestation of the same underlying issue? Does this also apply to meningitis? We don't know.

    Also of interest from Stanford is they are replicating the Japanese brain inflammation study, and have a possible brain scan to diagnose ME right now ... which is currently being tested though I am unaware of the details of the testing. It may or may not be validated.

    Lipkin's work does need to be examined very closely, but then all the research needs to be examined. You never just accept a scientific finding. The more important it is, the more it needs scrutiny. A high percentage of findings, especially on small cohorts with limited testing and analysis, fail replication. That is a huge problem in ME research. As many of us are too well aware this also applies to treatments. (Actually its a huge problem in all of medicine, but badly funded research like for ME makes this worse.)

    I like how Lipkin reasons, analyzes and communicates. It does not mean I think he is right. The science will show that, or not, as it comes out and becomes understood.
     
    FMMM1, neweimear, Rooney and 4 others like this.
  10. Gemini

    Gemini Senior Member

    Messages:
    701
    Likes:
    1,278
    East Coast USA
    Very nice overview of the research to determine what ME is @alex3619. Agree with all your points.

    Would add one more thing coming out of Stanford sometime in the future, the results of Mark Davis' work that might trace back to an original trigger, infectious or autoimmune.

    This was cited by NIH about six months ago as being a potential "major breakthrough" in the field of immunology but haven't heard anything more about when we might see publication of it?

    Identifying the trigger and then determining if it is still present is Step 1 of Naviaux's 3-step treatment plan which he presented at the OMF Community Symposium.

    Interestingly, Step 2 "Refilling the Metabolic Tank" includes addressing the gut microbiome which Lipkin has been studying for quite some time now.
     
    Rooney likes this.
  11. alex3619

    alex3619 Senior Member

    Messages:
    12,756
    Likes:
    36,108
    Logan, Queensland, Australia
    Yes, its going to be an interesting year or two ahead. I am hoping for major revelations. There are quite a lot of breakthrough studies right now, but I listed the issues that first came to mind.
     
  12. FMMM1

    FMMM1 Senior Member

    Messages:
    142
    Likes:
    215
    A few quick comments.

    Baraniuk appears to be working on the line of problems re blood/csf barrier in ME/cfs. He's also recently started recruiting for a MRI study.

    Here are a few extracts from Baraniuk's 2017 paper*; there's probably more on the Georgetown University website.

    *Extract from paper titled: "Exercise – induced changes in cerebrospinal fluid miRNAs in Gulf War Illness, Chronic Fatigue Syndrome and sedentary control subjects".

    "Choroid plexus is dysfunctional in Alzheimer’s disease68. This provides the rationale to consider the role of the blood – cerebrospinal fluid barrier in the cognitive dysfunction of CFS and GWI. There are numerous reports of elevated and diminished miRNAs in cerebrospinal fluid in Alzheimer’s disease36,69,70,71,72,73,74, but none matched the patterns of our groups. miR-let-7i-5p36 was elevated in Alzheimer’s, but levels were equivalent in nonexercise groups (Fig. 8)."

    To me it's interesting that the research into Alzheimer’s disease seems to have progressed understanding of the blood – cerebrospinal fluid barrier and ways to examine the functioning/non-functioning of same. Also, brings to mind the name myalgic encephalitis and the MRI studies showing same.
     
    ljimbo423 and alex3619 like this.
  13. neweimear

    neweimear Senior Member

    Messages:
    200
    Likes:
    574
    Is there something off about Ian Lipkin...I just can't fully trust him....can't put my finger on it. I hope I'm wrong, I hope he is doing his genuine best to help us.
     
    fingers likes this.
  14. fingers

    fingers Senior Member

    Messages:
    398
    Likes:
    271
    SW Endland
    Pop out? Only if Lipkin wants it to, mate.
     
  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,193
    Likes:
    5,491
    USA
    Good for you for spotting something a bit off....allegedly: http://forums.phoenixrising.me/index.php?threads/hornig-sues-lipkin.51620. Topic is closed for replies, so best not to add anything more here other than a :wide-eyed:
     
  16. Alesh

    Alesh Senior Member

    Messages:
    180
    Likes:
    12
    Czech Republic, EU
    It is good that Lipkin is in such a close contact with ME sufferers and he also feels obliged to those whom he wasn't able to help and who commited suicide. It is also great that he distinguishes subsets of patients, some are better on probiotics, some on antiherpes antivirals and some on SSRI even when they don't suffer from a psychiatric disease. If I understand it well he will confirm and elaborate on the results of Navieux by studying the cerebrospinal fluid.
     
    FMMM1 likes this.

See more popular forum discussions.

Share This Page