The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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HSCT Treatment for a Subset of ME/CFS?

Discussion in 'General Treatment' started by Jesse2233, Apr 5, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Saw this from Cort in the comments section of a new Simmaron article:

    The article itself deserves discussion, but I found this comment interesting...

    HSCT has been discusssd before on here in regards to cancer and autoimmune disease, but this is the first time I've seen it used on someone with ME/CFS (she also had MS).

    This is an extreme and dangerous treatment (beyond Rituximab or even Cyclophosphamide) that essentially destroys the immune system and rebuilds it using stem cells in a carefully controlled hospital setting. I'm not sure I'd ever consider it, but the anecdotal evidence is interesting nonetheless
     
    Last edited: Apr 5, 2017
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  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Hypothetically HSCT-trials would answer a lot of questions with regards to pathology, but it`s hard to see that happening in the near future. Trials are usually reserved for fatal conditions (yeah i know ME can be fatal, but it`s not the norm)
     
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  3. Murph

    Murph :)

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    A passing thought on such case reports. As ME/CFS becomes more widely recognised and understood, more people will know they have it and more doctors will acknowledge it. That includes people with serious comorbid conditions like MS, lymphoma, etc.

    As those people get treatment with various immune therapies (itself a burgeoning trend) we should get an uptick in case reports like the above, where ME/CFS has been cured (or, I suppose, cases where it has worsened) incidentally to treatment. That could hint to possible future paths for research and hopefully identify more effective drugs that are already approved.
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    @Jonathan Edwards - Professor, any thoughts on non-myeloablative HSCT as a future treatment for severe ME? I know that in some places Rituximab is used as an adjunct to the procedure
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As I have said on various threads, there is no treatment that is HSCT. HSCT is a way of rescuing a patient from the effects of high dose cytotoxic therapy. I have no idea what people think extra stem cells will do if one already has plenty of them. The treatment is the high dose cytotoxic therapy - which still has a small percentage mortality. As far as I am concerned it is obsolete for autoimmune disease because it only produces temporary benefit and is far more toxic than the alternatives.

    Rituximab is not used as an adjunct to stencil transplant. It is used as part of the ablative therapy. In the days when we did not know whichcells to kill, throwing drugs that kill various types of cell at the patient made some sort of sense. Now we can see that specific cell types seem to be crucial to specific illnesses this does not seem very relevant. If you need rituximab the presumably what you need is B cells being killed. There is no need to give stem cells after that.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    Given that some of Fluge/Mella's RTX non-respondants improved with Cytoxin, might this imply a wider range of chemo drugs could have even greater benefit? Assuming of course the root cause is immunological.

    And if the immune system was totally gone, wouldn't stem cells be needed to regrow it quickly before opportunist infection set in?

    Forgive me if these are simplistic questions, or if you've covered this before
     
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  7. bspg

    bspg Plant Queen

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    In Allie's comment she says she was diagnosed with "chronic EBV", which sounds likely to be chronic active EBV or CAEBV. CAEBV is rare, often fatal, and HSCT is the only known cure.

    From what I understand, CAEBV is not the same as re-activated EBV or ME/CFS.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    Hmm missed that part. FWIW I've seen her comment other places that she considers her diagnosis ME
     
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  9. bspg

    bspg Plant Queen

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    I don't want to speak for anyone. I'm just guessing it was CAEBV since she stated having HSCT.
     
  10. Jesse2233

    Jesse2233 Senior Member

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    I think it was for MS. I'm going to read more about CAEBV and HSCT, I assume it has to do with targeting the EBV in B cells
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As far as I can see she had severe EBV with hepatitis as a teenager. She then developed ME which a doctor thought might be a follow on from the EBV but I see no indication that she had persistent active EBV replication as a problem. She developed MS and was treated with high dose chemotherapy with rescue for MS. Active EBV is not treated with that, although it can be treated with rituximab alone.

    Essentially she had her MS treated with immunoablation. This is no longer a sensible option because you get just as good results with rituximab on its own.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As I indicated above, now that we know more about which cells are involved in autoimmune diseases the argument for high dose immunoablation has gone. We tried high dose immunoablation for a dozen or so autoimmune diseases around 1995-2000 and although patients responded they did not respond any better or any longer than with rituximab. Since about 5% of them died of the treatment it was abandoned. I am surprised anyone was still using high dose immunoablation in 2012 for MS but the benefit of specific B cell depletion took some time to be made known because the drug company involved was slow to get its act together.
     
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  13. bspg

    bspg Plant Queen

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    @Jonathan Edwards Thank you for the clarification. Do you think the EBV and MS were connected?
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I doubt it.
     
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