HSCT Treatment for a Subset of ME/CFS?

Jesse2233

Jesse2233

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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...

Cort Johnson
April 5, 2017 at 5:58 pm - Reply

Allie sent this over in an email. She had trouble posting it on the site. (I believe that HSCT refers to hematopoietic stem cell transplantation)

"I was Dx with chronic EBV after a near fatal bout of autoimmune EBV hepatitis when I was in my teens. Struggled with ME/CFS for 30 some odd years. In 2012 Dx with MS with active brain lesions.

After the MS meds failed me and still having active brain lesions I had HSCT. A reboot of the faulty immune Sx with chemo followed by my own stem cells to regrow a new immune Sx that defaults to tolerance.

Praise the Good Lord I got my life back. My prayer is this procedure will be available to all who need it. I’m truly blessed."
Click to expand...

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
 
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Marky90

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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)
 
Murph

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Jesse2233 said:
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
Click to expand...

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.
 
Jonathan Edwards

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Jesse2233 said:
@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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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.
 
Jesse2233

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Jonathan Edwards said:
The treatment is the high dose cytotoxic therapy -
Click to expand...

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
 
bspg

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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.
 
Jesse2233

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bspg said:
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.
Click to expand...

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

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bspg said:
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.
Click to expand...

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.
 
Jonathan Edwards

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Jesse2233 said:
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
Click to expand...

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.
 
kyzcreig

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Jonathan Edwards said:
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.
Click to expand...

HSCT cures autoimmune diseases by resetting T Cell Receptor and B Cell Receptor diversity. Rituximab does not do that and is not a cure for many (most?) patients. HSCT cures most autoimmune diseases in most patients.
 
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