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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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CellTrend test for ME/CFS (Prof. Dr. Carmen Scheibenbogen, University Hospital Charite Berlin, etc.)

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Dolphin, Nov 13, 2015.

  1. Dolphin

    Dolphin Senior Member

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    I thought I'd draw this to people's attention. I would guess in many situations the test might not be accepted but that doesn't mean it doesn't have a value.

    http://www.celltrend.de/newsreader/...yndrome-myalgic-encephalomyelitis-cfs-me.html

    It links to these files:

     
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  2. Valentijn

    Valentijn Senior Member

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    Not sure how that's even remotely diagnostic of ME/CFS, but could still be useful, especially for ME/CFS patients with autonomic dysfunction.
     
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  3. charles shepherd

    charles shepherd Senior Member

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    I am obviously aware of this autoimmune research but I do not see how this interesting finding, which I don't think has been replicated elsewhere:

    Auto-Antibodies against the b2-adrenergic receptor, auto-Antibodies against the muscarinic cholinergic Receptor 3 (M3) and auto-Antibodies against the muscarinic cholinergic Receptor 4 (M4) are elevated in a subset of 20-30% of all patients suffering from Chronic fatigue syndrome / myalgic encephalomyelitis (CFS / ME).

    can be extrapolated into claiming that a commercial blood test based on this finding can be diagnostic for ME/CFS

    Perhaps the small print - which I have not read - provides some more justification for this claim….

    And does anyone know how much this is going to cost?
     
  4. John Mac

    John Mac Senior Member

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  5. deleder2k

    deleder2k Senior Member

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    That is if you want the kit to do blood tests on your own.

    The price for patients sending a vial of blood to Germany is:

     
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  6. deleder2k

    deleder2k Senior Member

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    Can't this be a biomarker for Rituximab response in PWME? Many patients are considering off-label Rituximab treatment in either the U.S and Norway. If what the study proposed is right, then the information could be vital to a patient deciding whether to spend 15k pounds on private treatment.

    [​IMG]
     
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  7. Sidereal

    Sidereal Senior Member

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    Disappointing to see this. The paper on which this is based is extremely preliminary.
     
  8. deleder2k

    deleder2k Senior Member

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    It is, but it is better than nothing, isn't it? The alternative was to choose to not share this with the medical community.
     
  9. Sidereal

    Sidereal Senior Member

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    I liked the paper. What I'm against is this unvalidated "diagnostic test" being sold to patients.
     
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  10. deleder2k

    deleder2k Senior Member

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    Oh. I see. I think it is alright to have a choice. If it gives patients a small chance of predicting RTX response I would assume quite a few patients to take it. Not sure whether a negative result (which is very likely) should impact the decision whether to how with RTX or not though. The good thing is that it only costs 81 euros. Think of what some of us spend on MTHFR tests, detox, supplements that do not work, and other babble.

    However, I don't think it is fair to label it as a "diagnostic test for ME/CFS". That is misleading.
     
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  11. SOC

    SOC Senior Member

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    Could this be more of a test for autoimmune-mediated OI than for ME/CFS, strictly speaking? Did they compare to OI patients without ME/CFS to see if there's a distinction? OI is a big factor in many ME patients, but not in all as far as we know right now. Could the 20-30% of patients with these elevated auto-antibodies be either primary OI (not actually ME patients) or more likely, ME patients with OI as the primary symptom, ie a particular subset of ME?
     
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  12. John Mac

    John Mac Senior Member

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    If anybody is going to take Rituximab privately I hope they will consider taking this test on a before and after basis. It may or may not be of great value to them personally but it would certainly add to the body of evidence.
     
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  13. deleder2k

    deleder2k Senior Member

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    From the study:
    I think this is what the study may show. To my knowledge OI isn't mentioned at all in the study.
     
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  14. Gijs

    Gijs Senior Member

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    This is more valide for POTS rather than ME/CFS. In POTS patiënts they find also auto-immune respons against different receptors. There will never be a specific test for ME/CFS . As we know from the study of Julia Newton 30% of the ME/CFS patiënts have POTS. I think this will be the first subgroup who can get out of the CFS box.
    @ Charles do patiënts with POTS have CFS/ME?
     
  15. charles shepherd

    charles shepherd Senior Member

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    The simple answer is yes - some people with POTS also meet diagnostic criteria for CFS

    Just as some people with CFS also have POTS

    So there is an interesting and rather complex inter-relationship here

    One of the best papers which covers this two way overlap between ME/CFS and POTS comes from Julia Newton's group in Newcastle:

    http://bmjopen.bmj.com/content/4/6/e004127.full

    We already have a fairly tight clinical definition of POTS. This means that, along with examination findings, the diagnosis is much easier to confirm. And while this type of immune system abnormality may turn out to be a marker that supports a POTS diagnosis I would not put any money on it turning into a diagnostic test for POTS
     
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  16. Sea

    Sea Senior Member

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    I don't see a problem with them using the word diagnostic given that they make it clear that positive results are found only in a subset of 20-30%. Wouldn't a positive result on an antibody test would give someone a direction to pursue?
     
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  17. BurnA

    BurnA Senior Member

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    I don't see the benefit of this test.

    We know that some of the patients who responded had elevated autoantibodies and that these decreased during response.

    We also know that some of the patients with elevated autoantibodies didn't respond and their autoantibodies didn't decrease.

    We know that other patients responded who didn't have elevated autoantibodies.

    There was no link to POTS established in this paper.

    Please tell me what conclusions anyone could draw from this test ?

    We demand the highest form of statistical evidence from our research scientists, therefore we should apply the same statistical rigour here. I can't see how a positive or negative result in these tests could help a decision making process.


    ( I think that there were also elevated autoantibodies in some of the healthy controls but can't remember this exactly so please correct me if I am wrong )
     
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  18. Valentijn

    Valentijn Senior Member

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    The elevated autoantibodies found in the ME/CFS patients are the same ones found in some patients with orthostatic intolerance (OI). The receptors involved are known to regulate heart rate, blood pressure, etc, so are a logical culprit for the OI symptoms in some ME/CFS patients
    Since it might be a while before we can get Ritiximub based entirely on an ME/CFS diagnosis, the results of these tests could aid in diagnosis of OI in the mean time. It's also vaguely possible that those results might be basis for treatment sooner than ME/CFS diagnosis will be.

    It also might help direct treatment. For example, my pulse pressure is a lot stabler and closer to normal if I take Yohimbe, which is a potent and specific adrenergic Alpha 2a, 2b, and 2c antagonist. Does that drug help me because I have an autoimmune condition involving those receptors, or closely related receptors? And perhaps the results could suggest similar drugs to help cope with the effects of the autoimmune response.
     
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  19. deleder2k

    deleder2k Senior Member

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    @BurnA: I may be mistaken, but if one test positive for these antibodies, it may predict a positive response to RTX. Some respond with RTX with elevated antiautobodies. Some does not. If one does not have the autoantibodies, it may be less likely that they outfall after RTX will be a positive response. Does this make any sense? :nerd:

    This is very premature, so we would have to wait, but it looks interesting to me.
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think we probably already know that there are too many false positives and false negatives for this test to be useful as a way to decide whether or not to use rituximab. There may be some statistical correlation with response but that is not going to give you a clinical decision - that would need a pretty black and white difference.

    I have to say I am very disappointed that this is being advertised as a diagnostic test for ME/CFS at this stage. This is bad science driven by money. We have already had enough of this and we do not want any more. Patients will clutch at straws and as far as I can see this will be of no use to them or their physicians at this stage. The original paper on the antibodies was interesting but it was a statistical relation, not the basis of a diagnosis.
     
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