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@Phaedrus So agree about the sparrows, sun and cold beer/wine!...

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    @Phaedrus So agree about the sparrows, sun and cold beer/wine! I’d add good health and good company to that. It was great to meet you and we'll look forward to seeing you at the next AGM.


    I’ve been a bit distracted lately because I had to go to the UK to deal with my mother's third medical “coincidence ''. I've prepared a letter I hope will put pressure on the system to get her the care she needs but it’s a long-shot.


    (She’s also given her permission for me to write about the literal insanity of the “diagnosis”, one more example of wilful blindness to add to the many I’ve come across.)


    I’ve been catching up on the discussions with interest and appreciation. Your posts are among those that resonate with me, particularly the link you provided to the BMJ “study” concluding parachutes provided no mortality benefit over empty backpacks when jumping out of a plane!


    Interesting that the authors chose that example, which foreshadowed the row that’s gone on these past 4 years over a certain drug (highlighting FDA overreach).


    My take was that in using a metaphor the authors are indicating this is the norm, rather than the exception, and I might borrow that strategy for a post on another row that’s blown up (can be followed on Dr. Marvin Rapaport MD’s FB page) over Red Skin Syndrome, which IMO is highly relevant to us and what’s going on in the world.


    Medical insurers are wising up that they’re paying out huge sums for drugs which maintain (or worsen) conditions that can be cured. They’re also picking up the tab for off-target AEs of those same drugs.


    I thought your comment about Ryoncil potentially being “a stealth prophylactic for cGvHD” was interesting and I wonder if it’s the case that MSCs are able to harness the benefits of acute inflammation?


    Dr. Rapaport’s posts and many of the comments express anger at the suffering of patients at the hands of “a cabal”, which IMO is global. NHS doctors in the city near where my mother lives (SW England) are openly warning about a group pushing a treatment for back pain they told a family friend would have been disastrous. “Cabal” was the word my mother quoted just after she got off the phone with them.)


    If I recall right, SI said in the group at the end of the AGM that before the 2nd CRL they were seated around the table with the FDA who all wanted Ryoncil to be approved.) I believe him.


    I suspect Ryoncil was held back for reasons beyond the control of MSB and FDA who have to be diplomatic, mainly because of a phenomenon I know is real - pledge appears to be aware of it and I suspect the FDA and MSB are too.


    IMO the relationship between MSB and the FDA is collegiate and they’re working together very cleverly and making constructive use of the delay.


    While I’m cautiously optimistic, I”ll celebrate properly when I know for sure the cabal (I referred to here years ago as “the monumental scumbag”) has gone, which I think it has, but we’ll see.

 
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