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What is the evidence for collagen degradation in ME/CFS?

Discussion in 'Other Symptoms' started by vsou, Oct 13, 2021.

  1. vsou

    vsou Established Member (Voting Rights)

    Moved from the OMF news thread.

    I just watched this talk:

    Progress and challenges for a ME/CFS diagnosis -
    By Prof Ron Davis and Janet Dafoe to
    Sheffield ME & Fibromyalgia Group on
    Oct 12, 2021

    At the end of it Ron Davis made the following statement in reference to spinal issues in ME/CFS patients:

    “There appears to be a fair amount of degradation of collagen in the patients. We see the degradation products of collagen in the metabolomic analysis —-that it’s higher—much higher than in healthy people but it might just depend on how much degradation occurs before you get this problem. So we don’t know what triggers it— it’s probably related to the immune system triggering that as a part of the degradation pathway. Also Ehlers Danlos Syndrome is a contributing—-possibly a contributing factor, which we don’t know what causes that. So we’re constantly in the dark about everything it seems like with this disease. Just got to keep peeling away at the unknowns.”

    Has there been anything published about collagen degradation in ME/CFS patients?

    This is something that I have seen PwME say in online posts but this is the first time I have read or heard a researcher or doctor state that there are documented differences in the collagen of PwME.

    edited to correct errors in transcription
    Last edited by a moderator: Oct 13, 2021
    alktipping, Kitty, Ariel and 16 others like this.
  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    North-West England
    I think a lot of this has come from the discussions on structural issues and co-morbidities (particularly EDS, MCAS, and mold issues) that we've seen over the past few years. MEPedia has a page on collagen, including some clinical findings, which is unsuprising given it is run by MEAction and MEAction volunteers who have a keen interest in these (potential) overlaps.

    Louie41, alktipping, Kitty and 6 others like this.
  3. hinterland

    hinterland Senior Member (Voting Rights)

    Fluoroquinolone antibiotics might cause increased degradation of collagen. Could there be a higher past exposure to fluoroquinolones in this patient population compared with normal healthy people? Or perhaps it could be incidental to reduced activity and lower levels of fitness?
    Louie41, alktipping, Kitty and 5 others like this.
  4. Hubris

    Hubris Established Member (Voting Rights)

    I remember he said a couple years ago severe patients have increased hydroxyproline and that it was a sign of collagen degradation. I measured it and mine was high too.
    merylg, Louie41, alktipping and 3 others like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    I am fairly certain there is nothing to this. And it does not add up in any way. EDS is not particularly associated with collagen breakdown. That is a confusion. It is a disorder of connective tissue construction. Immunological processes can sometimes lead to collagen breakdown but most do not and I am not aware of anything to suggest this is relevant to ME.

    If collagen metabolites are higher in patients why have we not seen a paper on that?
    We do know what causes EDS - the documented gene defects.

    I am sorry to say the cited text looks like ramblings, and pretty unhelpful ramblings.
    Biomedical science for ME has to get its act together just as much as biopsychological science (if such a thing exists).
    TrixieStix, CRG, merylg and 15 others like this.
  6. Ariel

    Ariel Senior Member (Voting Rights)

    Is this plausible though? :/

    Edit: Cross posted with post above; answered.
    I don't know where this idea of collagen "breakdown" comes from. I used to find it plausible before I realized it probably doesn't make that much sense.
  7. Trish

    Trish Moderator Staff Member

  8. Wyva

    Wyva Senior Member (Voting Rights)

    I think the proponents of craniocervical instability (as a reason for ME/CFS symptoms) say that infections can break down collagen (I think there is a study about this somewhere). That's another "connection". However, @Jonathan Edwards said earlier that there is no reason why that breakdown would happen only in the neck and thus cause CCI.

    And to be honest, I'm quite fed up with this CCI stuff: recently there have been a few long haulers in my group who are semi-convinced that this is what happened to them and are already looking for doctors who diagnose this and are thinking about surgery (even if it's just a distant thought at this point). I really hate that I have to spend my time trying to discourage people from this unsupported BS and it is quite a difficult job because this topic is EVERYWHERE (at least in the English-speaking community). So Ron Davis is really not helping with saying things like this without an actual paper published. He is someone even long haulers know.

    (Btw, that consensus statement about these spinal issues on the ME Association website last year was a great idea, that is one of the things I use to discourage people.)
    TrixieStix, Perrier, Louie41 and 13 others like this.
  9. Mij

    Mij Senior Member (Voting Rights)

    This doesn't help either.

    TrixieStix, Louie41, Milo and 5 others like this.
  10. Wonko

    Wonko Senior Member (Voting Rights)

    I'm not entirely sure on what basis those entirely fictional numbers are used?

    I am a pwME but I have not had whatever testing would be needed to establish if I have hEDS, or MCAS, or if I have craniocervical obstructions.

    This is partly because such testing largely does not exist here, or in most of the world.
    Last edited: Oct 14, 2021
    TrixieStix, Ash, Perrier and 7 others like this.
  11. Kitty

    Kitty Senior Member (Voting Rights)

    Or that we need more research on connective tissue diseases, for that matter; there seems to be really quite a lot of research about them. Why can't we just have more research on something we've all actually got?
    chrisb, Perrier, JemPD and 5 others like this.
  12. Andy

    Andy Committee Member (& Outreach when energy allows)

    Hampshire, UK

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