B-Lymphocyte Depletion in Patients With ME/cfs: A Randomized, Double-Blind, Placebo-Controlled Trial (2019) Fluge et al

[Jonathan Edwards]

@Jonathan Edwards

Do you have a thoughts on VanElzakkers Twitter-comments on immunosuppression and ME? The theories behind both Rituximab and Cyclophosphamide was “switch off, switch on”, not permanent suppression, was it not?

Presumably Dr van Elszakker is not familiar with the reason why we use rituximab in autoimmunity. It is to remove clones making the autoantibodies that cause symptoms. If a subset of people with ME had hidden autoantibodies - and that was quite plausible - then rituximab makes as much sense as it does in the dozen or so illnesses where it works beautifully. He is probably not very familiar with clinical immunology.

 

[Jonathan Edwards]

I am not sure that 'comorbid autoimmunity ' or mast cell activation makes much sense though!

I agree with Dr v E that feeling bad is often part of the immune response - which is precisely why getting rid of immune cells, i.e. B cells, works when it does. I think he is assuming that immune responses are always good, which clearly in autoimmunity they are not.

 

[Rain]

@Jonathan Edwards thank you! Very helpful.

(I was not the one discussing with him on Twitter, should have made that clear.)

 

[Utsikt]

Was searching for something else, and I found this quote by Fluge that struck a cord with me due to how many times we see people clinging to their theories or manipulating trial designs to get their results:

Fluge says the results of the study show how important it is to do double-blind and randomized placebo-controlled studies.

– The purpose of the study was to either strengthen or weaken the hypothesis that B cells were important for symptom maintenance in ME.

– When the result is negative, it is good that it is unambiguous and clear. We should be happy about that. The purpose is not to go for one or the other – but to know what is actually true, says Fluge.

– Then it is the case that some patients say that they have experienced an effect from this medicine. For an individual patient, it is of course difficult to know what has caused improvement – but at a group level we can say with great confidence that rituximab has no effect.

The quote is auto translated from this article.

 

[V.R.T.]

Was searching for something else, and I found this quote by Fluge that struck a cord with me due to how many times we see people clinging to their theories or manipulating trial designs to get their results:

The quote is auto translated from this article.

It's interesting to read that as Mella seemed to question why Ritux phase 3 failed in his charite talk this year.

He was talking about the fact they had to give a lower maintaince dose.