Multiple Sclerosis Research Repository

March 31, 2025

Dear Dr. Bebo,

I am submitting this feedback to your remarks about Dr. Amit Bar-Or’s being awarded the 2025 John Dystel prize for multiple sclerosis research.

Per the press release (https://www.eurekalert.org/news-releases/1077660), you are quoted as stating:

1. “‘Dr. Bar-Or has been a key player in shaping the evolving conceptual framework of MS, including how the field thinks about early diagnosis, disease mechanisms, effective treatment, and stopping disease progression’”
2. “‘His contributions to neuroimmunology, precision medicine and, and biomarker studies have a direct impact on the treatment of people with MS, and I am excited to see his research continue to inform how to stop disease progression and ultimately end MS”

Commentary regarding “a)”: 

1. The b-cell depleting MS “therapies” (I refuse to use this term myself because these “therapies” do NOT treat the underlying pathology of MS!  Rather, they mitigate certain manifestations of MS such as relapses and conventional MRI activity; some show a very minimal effect on reducing the relative and absolute risk of confirmed disability progression, but the Numbers Needed to Treat (NNTs) for the CDP findings in the clinical trials are so high that they are not meaningful in any way) are FAR from “effective treatment.”  I will offer the example of Ocrevus in regards to confirmed disability progression (CDP) below:

1. From the OPERA I and II clinical trials using pooled data from both trials: The Number Needed to Treat would be 18.5, meaning that 18.5 patients would need to be treated with Ocrevus for 1 patient to receive the benefit of a 40% relative risk reduction (or a 5.4% absolute risk reduction) of 12-week confirmed disability progression
2. From the ORATORIO clinical trial for PPMS: The Number Needed to Treat would be 15.6, meaning that 15.6 patients would need to be treated with Ocrevus for 1 patient to receive the benefit of a 24% relative risk reduction (or a 6.4% absolute risk reduction) of 12-week confirmed disability progression

-There is nothing “effective” about an alleged “treatment” with NNT numbers so high and absolute risk reduction numbers that are so low.  

b) Regarding: “disease mechanisms”: The b-cell depleting “therapies” do not show any 

efficacious evidence against progression/disability accumulation in MS, which is 

evidence that they are not addressing the actual disease mechanisms/underlying 

pathology.  If they were, they would show far more efficacy against progression and 

disability accumulation.

c) Regarding “early diagnosis”: Early diagnosis is not significant, as there is research 

which I will be happy to provide upon request showing that earlier DMT “treatment” does

not result in better outcomes.  Additionally, the natural history studies of MS show that the average time to progress from RRMS to SPMS is around 18-21 years (happy to provide these citations upon request as well), so we need to run studies to see if people who use the DMTs have a delayed time to SPMS versus the natural history studies as one example.  

d) Regarding “stopping progression”:  There are no DMTs that have any evidence of 

stopping progression.  Some don’t even have any evidence of slowing progression.  The 

evidence for the DMTs regarding progression is that of relative risk reductions with very 

small absolute risk reductions and very high NNTs for reducing the RISK of CDP.  

e) Regarding “effective treatment”:

1. Dr. Bar-Or was one of the ORATORIO Clinical Investigators.  I have reviewed the ORATORIO clinical trial documentation as well as the FDA approval document of Ocrevus for PPMS and was sufficiently disturbed and alarmed by my findings that I submitted a Citizen Petition to the FDA last month requesting that they withdraw their approval of Ocrevus for PPMS because this approval appears to have violated the statutory regulations, as the evidence from the ORATORIO clinical trial did not meet the statutory regulatory standard of “substantial evidence of effectiveness,” as the single clinical trial (ORATORIO) which served as the sole evidence/basis for the FDA’s approval of Ocrevus for PPMS was not an “adequate and well-controlled trial.”  Here is the link to this Citizen Petition currently published on the docket at Regulations.gov: https://www.regulations.gov/docket/FDA-2025-P-0547

The FDA approval documentation of Ocrevus for PPMS evidences that the 

ORATORIO trial was riddled with such serious, severe and egregious issues that 

the clinical reviewer team leader, Dr. John Marler, wrote that this trial was not an adequate and well-controlled trial. 

Commentary regarding “b)”:

1. It seems disingenuous, misrepresentative, unethical and quite frankly, ludicrous to be talking about “ultimately end[ing] MS,” when, as I have discussed and proved above, there are not even any current available treatments (and I mean actual treatments, not the current “DMTs,” which are NOT MS treatments!) that have shown any meaningful efficacy against progression (they haven’t even come close to showing any meaningful efficacy against progression!  To say otherwise would again be disingenuous, misrepresentative, unethical and untrue).  
2. Regarding “to stop disease progression”: This is also disingenuous, misrepresentative, unethical and ludicrous when again, as I discussed above, there are NO available actual MS treatments (most definitely NOT the DMTs!) that have shown any meaningful efficacy against slowing or reducing disability progression in MS, let alone “stop[ping]” it.  This language is so infuriating to me because it gives false information and false hope, in addition to serving as non-evidence-based propaganda about the DMTs while never mentioning the serious, significant and severe risks and side effects of said DMTs.  Your organization consistently puts forth information that misrepresents and overstates the alleged “benefits” of these DMTs while simultaneously downplaying their risks and side effects.  This is so upsetting to me, as it is wrong, harmful, and unethical on so many levels.  

I will NEVER consider making any donations or offering support to the NMSS in light of my above-stated issues and concerns.  I find it so troubling that an organization that claims that their mission is to help and support those with MS is actually doing the opposite in the regard that they refuse to present transparent and truthful information/evidence/data about the actual benefits and risks of the MS DMTs.  I have so much more I could and would like to say about this topic, but for the sake of time, I need to stop at this point for now.  

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