Gingergrrl
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@Cort I looked to see if this was already posted and did not see it. If I missed it, I apologize and hoping my post can be linked to the existing thread if there is one.
Excellent article re: Dr. Carmen Scheibenbogen in Germany and what she has found to be an autoimmune subset in ME/CFS (or possibly it's own disease, I don't think we know yet for sure)?
I find Dr. Schiebenbogen's research extremely fascinating and think she is really onto discovering a distinct sub-group or mis-diagnosed group. I match with virtually everything in her research from (initially) mounting a feeble response to EBV, having all of the autoantibodies in her study, having elevated ANA and TPO (thyroid) autoantibodies, and having symptoms like POTS, blood flow abnormalities, lung functioning, muscle weakness, etc.
I never had the opportunity to try immuno-adsorption (IA) but strongly suspect I would be a responder (and then relapse) like the subjects in her study. And I know I cannot be alone in this sub-group!
Here is the link and I will quote a few parts of the article below:
http://simmaronresearch.com/2018/04/hope-mecfs-autoimmune-subset-german-researcher-steps-forward/
Excellent article re: Dr. Carmen Scheibenbogen in Germany and what she has found to be an autoimmune subset in ME/CFS (or possibly it's own disease, I don't think we know yet for sure)?
I find Dr. Schiebenbogen's research extremely fascinating and think she is really onto discovering a distinct sub-group or mis-diagnosed group. I match with virtually everything in her research from (initially) mounting a feeble response to EBV, having all of the autoantibodies in her study, having elevated ANA and TPO (thyroid) autoantibodies, and having symptoms like POTS, blood flow abnormalities, lung functioning, muscle weakness, etc.
I never had the opportunity to try immuno-adsorption (IA) but strongly suspect I would be a responder (and then relapse) like the subjects in her study. And I know I cannot be alone in this sub-group!
Here is the link and I will quote a few parts of the article below:
http://simmaronresearch.com/2018/04/hope-mecfs-autoimmune-subset-german-researcher-steps-forward/
Scheibenbogen is relatively new to this field, but she’s not new to medical research. A trained oncologist and hematologist as well as a physician and Professor of Immunology in Berlin, her research resume includes over 150 publications dating back 25 years.
Yet she’s very quickly become one of our most prolific researchers. Over the past four years her team has published no less than seven papers, has won two Ramsay Awards, and played a central role in the development of the new European Research collaboration, EUROMENE.
Scheibenbogen’s first ME/CFS publication In 2014 found ME/CFS patients mounting a feeble response to Epstein-Barr virus (EBV).
In 2016, figuring that when Rituximab worked in ME/CFS it probably did so by whacking antibody producing B-cells, her group examined antibodies against a variety of receptors that affect blood flow, the autonomic nervous system, etc. They found that about 30% of ME/CFS patients in a large study (n=293) had increased levels of antibodies to adrenergic (B2) and/or muscarinic M3/M4 acetylcholine receptors (M3/M4).
That suggested that the immune systems of a significant subset of ME/CFS patients might be attacking the receptors on cells which regulate blood flow, lung functioning, muscle contractions and attention. Furthermore, the finding (a “remarkable” one they said) that the antibody levels of two receptors correlated with a host of immune factors (immunoglobulin levels, T cell activation, elevated ANA, TPO antibodies) suggested that this subset of ME/CFS patients are suffering from an autoimmune disease. Scheibenbogen has suggested that the kind of ME/CFS you have may be dependent on the kind of autoantibodies present in your system.
Similar antibody findings have been found in a range of diseases (postural tachycardia, regional pain syndrome, Alzheimer’s, Sjogren’s syndrome, asthma) some of which have been associated with ME/CFS. They also noted that immunoadsorption factors that are able to mop up these antibodies had proven to be helpful in some diseases. Two years later they put that idea to the test.
They used a blood purification technique called immunoadsorption to eliminate the B2 antibodies from people with ME/CFS who’d had a post-infectious onset and high B2 antibody levels.
Significant improvement eventually followed by a relapse was the order of the day.
The levels of all four antibodies (B1, B2, M3 and M4) declined after the treatment in all 9 participants. These are good results which are hampered by the small sample size and lack of a placebo control. Through our experiences with Rituximab, Synergy and Mirogabalin we’ve learned how little to trust early results. Still, research has to start somewhere and the results thus far present hope for a significant subset of ME/CFS patients.
The Solve ME/CFS Initiative (SMCI) provides funding to five or so researchers every year in its Ramsay Awards. The Awards are quite competitive with SMCI receiving far more applications than it can fund, but over the past two years the Scheibenbogen group has won two – the only group to do so.
Citing “ample evidence of an autoimmune pathomechanism” the Scheibenbogen team will be digging into the genetics of their “autoimmune subset”.
This is one of the first times that I’m aware of that a research group has targeted a subset and dug deeper into it. Scheibenbogen’s focus is clearly good news for people in that subset but it’s also good news for people outside of it. If she’s found a robust subset then it needs to be peeled off from other ME/CFS patients because it’s undoubtedly confounding study results for those patients.
The Simmaron Research Foundation is also working with Dr. Scheibenbogen to identify the subset of Dr. Peterson’s patients who fit the autoimmune profile, and to further characterize the subset from a clinical perspective.
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