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I have had ME for five years and POIS for about five months. POIS started with an acute flareup of chronic bacterial prostatitis after stopping antibiotics. My urologist (who is a semi-specialist in persistent UTIs) says it is likely an inflammatory reaction to prolonged immune activation in the...

Evidence to date suggests it has far better safety and tolerability.

Experimental drug iberdomide improves dara efficiency by this mechanism as well as by increasing CD38 expression. At the moment this is combination is just used for MM, but the safety profile of iberdomide is good enough that it is being trialed as a monotherapy (in lower doses) for lupus. It...

I meant widespread use after a randomised trial has been conducted. I thought I made that clear by quoting the part in which they advocate a randomised trial, but maybe I should have quoted the other part. @Trish I stated my experience with cyclophosphamide earlier in the thread. I am happy to...

In the original study they stated. “This study shows that cyclophosphamide intervention is feasible for ME/CFS patients. The growing evidence for immune alterations in ME/CFS and the high symptom burden with very low quality of life, we believe can justify use of an immune modulating drug with...

If Siobhan was the only case I would also be skeptical, but her case needs to be viewed within the larger body of evidence. 22/40 trial participants reported some degree of improvement (some temporary) and cyclophosphamide significantly outperformed rituximab and placebo at six years. This is...

A placebo response is much less plausible in a patient who has tried and completely failed multiple strong (and in some cases expensive) treatments like daratumumab, bortezomib and several others. A coincidence is also less plausible when after over two years of stable or worsening disease you...

Siobhan has kept me updated on her treatment journey. This is my summary which I wrote for another group and she has checked and approved. I hope a few additional details help. She was of moderate severity with typically 4000 steps per day. Brainfog and PEM were the symptoms that caused her the...

Thanks for clarifying. As you said, your patients had much more than six doses. It is also likely they had a history of other immunosuppressive treatments. I accept that suppression of adverse events does happen, but the second and third cancer studies that I posted used data from Danish and...

I don’t know. We will find out soon when they publish the full paper.

Please could you clarify your first point. If the natural history of ME is too unpredictable for researchers to use ME patients as controls, then who should they use? Trials are conducted on many other conditions with randomly fluctuating symptoms. I agree that trial participants are in general...

Another common argument against cyclophosphamide is the risk of infertility and early menopause. Male fertility risk is significant, but can be easily be preserved by sperm freezing. A systematic review and meta-analysis of the gonadotoxic effects of cyclophosphamide and benefits of...

There are many reasons why a phase three trial of cyclophosphamide should be pursued despite the risks and unpleasant side effects of this drug. The original study found that cyclophosphamide responders can be predicted using HLA type 83% vs 43%. There is a 1/36 chance this is coincidence. The...

These are the six year rituximab and cyclophosphamide follow up slides from Fluge’s talk at the 2023 Charite conference. I am posting them because the data has now been made public. Cyc is impossible to blind, so trials for autoimmune diseases use alternative treatment or historical control...