Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Efficacy of Repeat Immunoadsorption - Published: 30 July 2020

raghav

Senior Member
Messages
809
Likes
1,869
Location
India
https://www.mdpi.com/2077-0383/9/8/2443/htm

Abstract
(1) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex neuroimmunological disease. There is evidence for an autoimmune mechanism for ME/CFS with an infection-triggered onset and dysfunction of ß2-adrenoreceptor antibodies (ß2AR-AB). In a first proof-of-concept study, we could show that IA was effective to reduce ß2AR-AB and led to improvement of various symptoms. (2) Five of the ME/CFS patients who had clinical improvement following treatment with a five-day IA were retreated in the current study about two years later with a modified IA protocol. The severity of symptoms was assessed by disease specific scores during a follow-up period of 12 months. The antibodies were determined by ELISA. (3) The modified IA treatment protocol resulted in a remarkable similar clinical response. The treatment was well tolerated and 80–90% decline of total IgG and ß2AR-AB was achieved. Four patients showed a rapid improvement in several clinical symptoms during IA therapy, lasting for six to 12 months. One patient had no improvement. (4) We could provide further evidence that IA has clinical efficacy in patients with ME/CFS. Data from our pilot trial warrant further controlled studies in ME/CFS.


Conclusions
In summary, the current study provides further evidence that IA is effective in ME/CFS. This result warrants further studies of repeat IA therapy to maintain clinical remission, as shown for other autoimmune diseases [20]. Another option is to include IA in a therapy algorithm as initial therapy for autoantibody-positive ME/CFS patients in order to achieve rapid symptom relief and, therefore, shorten the known time latency of four months or longer until the onset of efficacy of B cell-targeting therapies.
 

bread.

Senior Member
Messages
494
Likes
720
To take 90% of Igg oit sounds like a really bad idea when you do not know which subset of me/cfs you are in.
 

MonkeyMan

Senior Member
Messages
322
Likes
920
This is very interesting. What I admire so much about Dr. Scheibenbogen and her team is that they are relentlessly focused on finding a therapy that will help patients to feel better; this is just one example. So many other ME/CFS researchers are spending years, and even decades, focused purely on teasing out the underlying mechanism of the disease, while we patients suffer day in and day out. To me, the underlying biological mechanism ultimately doesn't matter; just please find something that gives me symptomatic relief in the precious time I have left!
 
Last edited:

pattismith

Senior Member
Messages
3,489
Likes
6,863
I got the impression, that dr Scheibenbogen wants! it to be an autoimmune disease. This therapy is for a small subset only, maybe 15-20%. And from what I’ve read, those antibodies are just a side product and not the cause of ME.
according to the this small study, the responding subset could be at best 50% of the patients with increased beta2 AB and infection triggered disease. So it's not a big subset, but it's good to know for those falling in this one.

"For the conformational trial, we adjusted the treatment protocol (IA2, see Figure 1). Five of the ten participants of our first study in 2016 were included in the current study. These patients had a transient or long-lasting improvement of clinical symptoms after the first IA therapy. Detailed inclusion criteria were described before [23]. In short, all of the patients fulfilled the Canadian Consensus Criteria [1], had increased ß2AR-AB levels, and an infection-triggered disease onset."
 

raghav

Senior Member
Messages
809
Likes
1,869
Location
India
Is it possible to do a thorough metabolic, proteomic and whatever oics testing are possible pre and post Immunoadsorption (immediately after and at regular time intervals of two weeks )and see what those changes are compared to other non treated patients ? wont that give a pattern at least as to why those treated with IA are getting symptom relief ? Can OMF do that ?
 

Pearshaped

Senior Member
Messages
546
Likes
1,188
@MonkeyMan and @andyguitar
a doctor I know wanted to do an (informal?) study provided he finds 10 patients or more that qualify for the treatment,since the clinic where he works has the equipment.I didn‘t qualify since I was only positive for one Antibody.IDK more about it.its very expensive though.
www.sgk.swiss/de it pops up in german but you can change the language to english
 

MonkeyMan

Senior Member
Messages
322
Likes
920
@MonkeyMan and @andyguitar
a doctor I know wanted to do an (informal?) study provided he finds 10 patients or more that qualify for the treatment,since the clinic where he works has the equipment.I didn‘t qualify since I was only positive for one Antibody.IDK more about it.its very expensive though.
www.sgk.swiss/de it pops up in german but you can change the language to english
Very helpful, thanks Pearshaped.

Alas, even if I happened to qualify, unfortunately as an American I can't travel to Switzerland. :(
 
Messages
6,003
Likes
14,131
Location
South east England
Alas, even if I happened to qualify, unfortunately as an American I can't travel to Switzerland.
But if it looks like this treatment will help then someone in America is going to start offering it. And it might be available through medical insurance. In fact I would be suprised if clinics in the US dont start offering it. So hang on in there @MonkeyMan
 

perrier

Senior Member
Messages
1,250
Likes
2,937
@MonkeyMan and @andyguitar
a doctor I know wanted to do an (informal?) study provided he finds 10 patients or more that qualify for the treatment,since the clinic where he works has the equipment.I didn‘t qualify since I was only positive for one Antibody.IDK more about it.its very expensive though.
www.sgk.swiss/de it pops up in german but you can change the language to english
Do you know if he has the equipment? Apparently, the sophistication of the machine is important. I had heard one american doctor had an old machine and was using it. This clinic reminds me of dr Rau's Paracelsus clinic, also in Switzerland.
 

Pearshaped

Senior Member
Messages
546
Likes
1,188
TBH i dont know exactly but I undestood they have the equipment or were going to have it. but if its accurate IDK.
Yes I guess this clinic is a bit of a mix between the paracelsus clinic and a posh private clinic.I have never been there.But the medical adviser of my swiss ME/CFS Orgs. works there.Im sorry idk more about it.
 

hunter1899

Senior Member
Messages
152
Likes
121
I’m new to this world and while the study sounds promising I also don’t really understand a thing about it. Would this help EBV related CFS? What are the risks? What does it cost? How many treatments are needed? What do they do exactly?
 

bread.

Senior Member
Messages
494
Likes
720