At the Charite (Berlin) there is currently underway a study on plasmapheresis in patients with CFS at the immonology group of Prof. Scheibenbogen.
I am a participant in this study and want to share my experiences.
The study is based on the observation that they found in a subgroup of patients elevated autoantibodies. They are in constant exchange with the group in norway studying rituximab.
See also:
http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/
http://linkinghub.elsevier.com/retrieve/pii/S0889159115300209?via=sd
The study is conducted in collaboration with Fresenius Medical Care who contribute the filters and have experience in plasmapheresis in autoimmune conditions. 7 to 10 patients will be finally included based on the outcome of the first patients. They have chosen the candidates based on autoantibody and symptom level. As far as I understood the goal is to radically deplete the level of antibodies to ß adrenergic and muscarinic cholinergic receptors, see whether there is symptom relief and therby exploring whether these antibodies play a causative role in pathogenesis. Plasmaphersis was applied on 3 consecutive days, then 2 day break (weekend) followed by 2 more days of therapy, and finally IgG substitution. The latter is due to the fact that
all IgG antibodies were depletd ("good" and "bad" ones) and they wanted to restore some level of immunity.
At the end of day 5 my IgG level was below detection threshold.
Additionally, in my layman words, there is the speculation that by depleting the antibodies radically, a evolutionary stress is applied to the B cell generations thereby causing sort of "reset" similarly to rituximab. Probably I will be in an addtional 5 day course of plasmapheresis with the goal to further apply a reset. But this will depend on testing in 4 weeks.
I was told that they found so far a response in 3 out of 4 persons, mostly a rather transient one, which fits to the fact that antibodies will be replaced. My personal experience was a significant improvement in vision, less dizziness, and two weeks beeing less fatigued, less lymph node pain. It was quite difficult to assess, because I had a convalscense of a flu which always causes a worsening of my CFS symptoms...
Altogether I would say I had moderate response (at very least the moderate effectiveness the PACE trial claims!) But, we don't rely on subjective outcomes, I wear an actimeter one week each month, results pending.
Finally, even if the result comes out as only a transient one, this study could help to establish or falsify a causal link of symptoms and autoantibodies in a group of us. This conclusion would not be limited to the specific autoantibodies mentioned above but to autoantibodies in a more general sense, as long they are sensitive to the filter (i.e. IgG).
I'm grateful to be part of this endeavour. Hope to see the results published, but my guess is not before mid 2017.
Many thanks to the group of Prof. Scheibenbogen!
. It is more out of curiosity for future reference and at this point I am not planning to pursue PP.