Reply To: SCT

An update on HSCT: In January 2017, the European Society for Blood and Marrow Transplantation (EBMT) conference was held, in part, to review progress in the area of Hematopoietic Stem Cell Transplantation. Dr Snarski (a Polish Hematologist who attended) said he found Dr Burt’s presentation to symbolize ”… amazing results of the CIDP HSCT trial from Chicago. The publication (of results) is pending…” The link to his statement, courtesy of forum member Minihub67, follows: https://tinyurl.com/lhzsmqb

Dr Richard Burt’s latest SCT video and other news can be found on the following website where he participates:
http://www.stemcellresearchfacts.org

It seems there is a lot of positive information being given out surrounding the possible success of this treatment approach. The skeptic in me asks why is this ‘evidence of success’ not listed as part of the FDA administered Clinical trial covering the 80 participants? That section of the trial is still blank and the estimated completion of the trial has now moved to December 2018!

I know there are people who have had amazing success with HSCT. I corresponded with two of them in 2013 when I was considering enrolling in the HSCT program. On the other hand, I know that some prominent Neurologists don’t feel there has been sufficient long-term repeatable success to warrant releasing the treatment for general use.

Could it be that favorable statements and presentations made outside the Clinical Trial are geared more toward recognition, research support, and possibly funding? If favorable outcomes existed to a large degree, wouldn’t the FDA allow such statements to be posted based on factual evidence?

I really don’t know the true status of this treatment approach. Dr Burt’s trial has now closed to new participants. Dr Georges is still open. Neither of the trials that are running has officially documented results. I still feel HSCT offers hope of a cure for CIDP sufferers who can afford it and are willing to undergo serious sickness in the process.

What factual information do others have about HSCT for the treatment of CIDP?