Resource B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II S

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Good stuff - looking forward to this Jenny - thanks for posting it. Definitely going to be doing a blog on this.

Maybe Rituximab will end up being a drug for ME/CFS. That would be really something...For one thing - it's not a drug anyone plays around with. It's a serious drug for a serious condition. Just that fact that works for some people with ME/CFS (fingers crossed) would really open up some eyes.
 

JennyJenny

Well-Known Member
I hope they get the money to do a really big double blind and another lab replicate at the same time instead of having to wait for a replication of 2 years. 500 in one study and another lab doing another 500 using all the same diagnostic criteria (CCC and CDC) and have it double blind. That should give an answer. And if it is not working for some, then it may be a causation issue or someone who has been ill too long. Just like Dr. Hornig mentioned that she found stages and we certainly know we seem to all have different causation.

I'm tired. Ugh...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
More on this exciting study


"Eleven of the 18 responders were still in remission three years after beginning the treatment, and some have now had no symptoms for five years," says Fluge. "Suddenly, their limbs started to work again and their hands were no longer cold or sweaty."

"I am very intrigued by the rituximab story," says Nancy Klimas, an authority on CFS at Nova Southeastern University in Fort Lauderdale, Florida. "It's particularly exciting when people seem to have experienced very long periods of remission, and even speak of recovery," she says.

How about this!

The researchers think the body's own antibodies are to blame in at least a proportion of people with CFS. Relief started four to six months after the first dose of rituximab, approximately the time it would take for existing antibodies to be cleared from the body. Participants relapsed after about a year - roughly how long B-cells take to regrow and start making new antibodies.

"We think the pattern of responses and relapses involves some mechanism with these antibodies," says Fluge.
An infection may trigger the body to produce antibodies that then turn against a person's own tissues, he says. His team suspect that these antibodies may stop blood from circulating properly, preventing people from getting enough oxygen, explaining their extreme fatigue.

The researchers caution that their theory is just speculation for now, but they do have some very preliminary evidence. "We think the antibodies target the blood vessel system, because patients have very low anaerobic pressure, and produce waste lactate earlier, which stops muscles working," says Mella.

If this theory turns out to be true, it would explain why people with CFS suffer muscle fatigue but show no signs of muscular abnormalities.

I hope they get the money to do a really big double blind and another lab replicate at the same time instead of having to wait for a replication of 2 years. 500 in one study and another lab doing another 500 using all the same diagnostic criteria (CCC and CDC) and have it double blind. That should give an answer. And if it is not working for some, then it may be a causation issue or someone who has been ill too long. Just like Dr. Hornig mentioned that she found stages and we certainly know we seem to all have different causation.

I'm tired. Ugh...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I hope they get the money to do a really big double blind and another lab replicate at the same time instead of having to wait for a replication of 2 years. 500 in one study and another lab doing another 500 using all the same diagnostic criteria (CCC and CDC) and have it double blind. That should give an answer. And if it is not working for some, then it may be a causation issue or someone who has been ill too long. Just like Dr. Hornig mentioned that she found stages and we certainly know we seem to all have different causation.

I'm tired. Ugh...
yes...it may take the 150 person study going now to take that to happen but when you have Simon Wessely saying this

"There is now a strong case to be made for a larger trial," says Simon Wesselyof King's College London, who has treated people using cognitive behavioural therapy. "The belief that [CFS] is all in the mind has been around since the beginning," he says. "It's tragic that it might take a study like this to take sufferers seriously."

who knows what could happen?
 

JennyJenny

Well-Known Member
Cort, I don't understand his angle. He seems to be claiming a win for us but in a round about way. Because if he is using CBT on ME patients that tells me he believes CBT works on an organic illness, a physical one and not just psychiatric.

What is he doing sticking his nose into this. Is he afraid if he doesn't his work will be discredited and he has to spin the results in his direction?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, I don't understand his angle. He seems to be claiming a win for us but in a round about way. Because if he is using CBT on ME patients that tells me he believes CBT works on an organic illness, a physical one and not just psychiatric.

What is he doing sticking his nose into this. Is he afraid if he doesn't his work will be discredited and he has to spin the results in his direction?
My guess is that he's' seeing the future coming at him fast and he's trying to jump on the winning side...
It's not going to be easy for him to do...
 

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