Multiple Sclerosis Chronicles by Cassandra Ashby

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Cofounder, MSforTruth.org | 40+ yrs healthcare & MS landscape, Nurse Consultant for government healthcare programs
Advocate pushing for better data & transparency in DC with leadership
Real-world outcomes often don’t match institutional data
MS !s Me$$y

A very Complex rare seat is open in the FDA to speak for the Patient voice not just another drug company speaking for th...
10/07/2026

A very Complex rare seat is open in the FDA to speak for the Patient voice not just another drug company speaking for the patient voice. MS United for Truth & Transparency is a Consumer Organization. We Have asked the FDA to be recognized to vote who gets that seat in the FDA, YOU CAN TOO! Please help drive the change needed for better drug development to meet the needs of the patient not just for the drug industry.

Consumer groups: the FDA is taking names until November 16, 2026, for the consumer representative on the Peripheral and ...
10/07/2026

Consumer groups: the FDA is taking names until November 16, 2026, for the consumer representative on the Peripheral and Central Nervous System (PCNS) Drugs Advisory Committee.
-That committee advises the FDA on neurologic drugs.

* The consumer seat is open.
-This is a vote for the consumer seat only. (It does not choose the scientists on the panel.)
This is a chance to join forces around a specific ask: that future or the “consumer representative”
——-The PCNS Drugs Advisory Committee reviews safety and effectiveness data on marketed and investigational drugs used to treat neurologic diseases, then recommends a course to the FDA Commissioner.

* Be non-biased and balanced, with no ties to drug companies and no ties to institutions or organizations funded or influenced by them.
Multiple sclerosis (MS) is part of that work. In MS, the influence around those decisions is not small. Drug companies fund research, education, and many of the largest organizations in the field, including the National MS Society. That funding shapes which outcomes get emphasized and whose voice sounds established.
* People living with MS and neurological diseases need a counterweight: a consumer representative with no ties to drug companies and no ties to institutions or organizations those companies fund.
The committee advises.
The FDA decides. One seat is the consumer representative.
That person is supposed to speak for patients and the public, not for the companies that make the drugs.

Consumer organizations and other interested people can recommend who fills it. The FDA still makes the appointment. There is no public ballot. A clear, independent recommendation is still a real chance to be counted.

If your organization wants a ballot,
email [email protected] by November 16, 2026.

What to Say: *Say that your organization wants to participate in selecting the consumer representative for the Peripheral and Central Nervous System Drugs Advisory Committee.
Include: your organization name, a contact person, email, and phone.

The FDA then lists the organizations that asked to take part, screens nominees, and sends those organizations a ballot with at least two qualified names.

* Questions & Collective Collaborations: [email protected]

* Please share this with patient, caregiver, and consumer groups that follow MS, Alzheimer’s, Parkinson’s, and other neurologic diseases. The window closes November 16.

*Official notice: https://www.federalregister.gov/documents/2026/10/01/2026-20065/request-for-nominations-for-individuals-and-consumer-organizations-for-advisory-committees

Please forward to Consumer Organizations such as Multiple Sclerosis, Alzheimer’s disease, Parkinson’s disease, ALS, epilepsy, and migraines.

Respectfully,
Cassandra Ashby
Cofounder
MS United for Truth and Transparency
MSforTruth.org
Multiple Sclerosis Support Group!
Dying for a cure , MS and Pandora's box
The MS GYM
Ashby Cassandra

We must learn to ask better questions







MS United for Truth & Transparency promotes MS awareness and transparency in healthcare, supporting the MS community with evidence-based resources.

I will Keep Showing Up!Your Voice Matters: Help Bring Independent Consumer Representation to the FDA PCNS Advisory Commi...
10/06/2026

I will Keep Showing Up!
Your Voice Matters: Help Bring Independent Consumer Representation to the FDA PCNS Advisory Committee

The FDA’s Peripheral and Central Nervous System Drugs Advisory Committee (PCNS) currently lists its consumer representative seat as vacant. This voting position can help ensure that patient priorities are heard when the FDA evaluates the safety and effectiveness of neurological drugs.

The FDA is accepting nominations for consumer representatives through its advisory committee nomination process. Consumer representatives should be able to evaluate scientific information, discuss benefits and risks, and represent the public perspective. Nominations submitted by November 15, 2026, will receive first consideration for current and near-term vacancies.

This is an important opportunity for individuals and consumer organizations to help bring forward independent, transparent, and patient-centered voices—especially for people affected by multiple sclerosis. MS treatment discussions must address more than relapse reduction and focal inflammation seen on conventional brain MRI. People living with MS also need meaningful attention to long-term disability, progression, neurodegeneration, cognitive changes, quality of life, and the unmet needs of the whole disease.

The FDA’s PCNS charter allows for a technically qualified voting member identified with consumer interests and recommended by a consortium of consumer organizations or other interested persons.

If your organization believes patients deserve stronger, independent representation in FDA decision-making, please consider participating in this process, supporting a qualified nominee, or connecting with other consumer groups to ensure that the patient voice is not overlooked.

This is not about opposing treatments that help individuals. It is about demanding honest evaluation of both benefits and limitations, without industry influence, financial conflicts, or predetermined narratives. People affected by MS deserve representatives who can speak openly, examine all relevant evidence, and advocate for outcomes that matter over the long term.

Time matters. Lives matter. If you would like more information or want to discuss coordinated consumer participation, please contact:

Cassandra Ashby
MS United for Truth and Transparency
mailto:[email protected]

Please share this message with patient organizations, consumer advocates, and individuals who believe that meaningful change requires independent voices at the table.

FDA resources:

•FDA Launches Nationwide Effort to Expand Scientific Expertise and Consumer Voices to Advisory Committees

https://www.fda.gov/news-events/press-announcements/fda-launches-nationwide-effort-expand-scientific-expertise-and-consumer-voices-advisory-committees

• Request for Nominations for Individuals and Consumer Organizations for Advisory Committees
PCNS Adcom opening

https://www.fda.gov/advisory-committees/human-drug-advisory-committees/peripheral-and-central-nervous-system-drugs-advisory-committee

https://www.federalregister.gov/documents/2026/10/01/2026-20065/request-for-nominations-for-individuals-and-consumer-organizations-for-advisory-committees

https://www.fda.gov/media/79242/download?utm_source=chatgpt.com

Dying for a cure , MS and Pandora's box
MS Hope
MS with Moxie
The MS GYM
MS Canada
Todd and Mel’s MSadventures
Multiple sclerosis Daily
Multiple Sclerosis Support Group!
MultipleSclerosis.net

We must learn to ask better questions







Yes!!!
10/03/2026

Yes!!!

On September 30, NCL's Lisa Bercu spoke on a panel hosted by the Alliance for a Stronger FDA about the future of FDA. She emphasized the importance of ensuring that FDA has sufficient staffing not only for medical review, but also for critical policy, communications, and operational functions. She also highlighted the importance of communicating public health information in clear, plain language that consumers can understand and use.

10/01/2026

The Scale and the Brain MRI Scan

I sat in the MS specialist, neurologist’s office alongside my daughter Kara who lives with MS, the fluorescent lights humming like a low warning. On the screen glowed her latest brain MRI: a scatter of white spots, the lesions the doctor called “active.” He leaned forward, voice measured but heavy with urgency.

“These are signs the disease is advancing. and she is about to lose her right eye sight.
Without a disease-modifying therapy, something strong, one of the heavy hitters, we can’t predict the trajectory. Disability could accelerate. We need to act now.”
Kara nodded, as she always had.
For many, the prescriptions come for years: infusions, pills, injections, each promising to quiet the invisible storm. The language never changes—activity, progression, risk. Fear, dressed as science.

That evening I stepped onto her bathroom scale. The number stared back: the same as last month, last year. I laughed. The scale told me what I weighed right now. It said nothing about whether I would gain five pounds or lose ten by winter. Diet, movement, stress, sleep, chance—those decide the future. The number was a snapshot, not a prophecy.
And then the epiphany landed, clean and cold.

A brain MRI was the same kind of scale. It showed lesions that existed today—scars, inflammation, whatever the machine could catch. But those white spots did not map the road ahead any more than the scale predicted the next decade of her body. The disease remained elusive, slippery, full of paradoxes the textbooks still struggled to explain. Some people with heavy lesion loads walked freely for decades; others with quieter scans declined. The “clinico-radiological paradox” had a name for a reason.

I thought of the old days of multiple sclerosis diagnosis: vague symptoms, clinical judgment, sometimes autopsy confirmation only after the fact. The methods had always carried doubt. Scanners got sharper, drugs got more expensive, the language grew more confident. Yet the core uncertainty lingered. What had truly changed was the money—billions flowing through the pipeline of “heavy hitter” therapies, each new molecule accompanied by the same urgent pitch: the lesions are speaking, and they say you need the drug.

I closed the laptop. The scan was information, not fate. The scale was information, not destiny. Both measured the present. Neither owned the future. The disease was still elusive. The fear was manufactured. And the only thing that had clearly progressed was the price of the prescription.​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​
Today, Kara is managing her MS drug free, she is symptom free, never lost her vision however that World Renowned MS prescriber also Lost her Optic Never Testing.
Is MS science still as dubious as it was in the past history of MS as bunch of “Whale Tales”?
Our story~ is also the story of many who face brain disease, MS~ Cassandra Ashby
Co founder MSforTruth.org

To add to this follow up, Kara quickly went to her eye doctor and did the same optic nerve testing and it was completely negative and showed she never has had any optic nerve issues or damages.

09/30/2026
09/30/2026

Still OPEN
The founder of On a MiSsion for Multiple Sclerosis LLC, filed two related FDA citizen petitions in early 2025 about Ocrevus (ocrelizumab). Both target the primary progressive MS (PPMS) indication, not the relapsing-MS approvals. As of the latest public records, FDA has issued only interim “still under review” letters, not a final decision. bmj.com
Petition 1 — withdraw the PPMS approval
• Docket: FDA-2025-P-0547
• Filed: received March 1, 2025; posted March 5, 2025
• Ask: FDA should withdraw the 2017 approval of Ocrevus for PPMS for lack of substantial evidence of benefit and evidence of harm, alleging the approval violated the FD&C Act’s “adequate and well-controlled studies” standard and FDA’s own guidance. downloads.regulations.gov
Bower’s main arguments, drawn from the 2017 FDA review memos:
• The single pivotal PPMS trial (ORATORIO / WA25046 / “Study 3”) was statistically fragile; some FDA reviewers called the result “not statistically persuasive,” sensitive to missing-data methods, and of small absolute benefit.
• Subgroup analyses raised questions about efficacy in women and in patients without MRI inflammatory activity.
• Reviewers noted an imbalance in breast-cancer cases and other safety/manufacturing concerns.
• She argues the trial as conducted does not meet the legal standard for “substantial evidence.”
FDA’s August 2025 interim reply said the petition raises complex issues and a decision has not been reached. downloads.regulations.gov
Redacted and unredacted petition PDFs are on Regulations.gov (the original filing is marked as containing PII).
Petition 2 — change the label
• Docket: FDA-2025-P-0833
• Ask: Remove the description of Study 3 from Section 14.2 of the Ocrevus label because, she argues, that study does not “constitute or contribute to substantial evidence” under 21 CFR 201.57(c)(15)(i). downloads.regulations.gov
FDA posted an acknowledgment and later an interim response; comments on that docket are closed.
Public coverage
The BMJ (April 2026) reported on the petitions and the original 2017 internal reviews, including reviewer language about limited efficacy in some subgroups and breast-cancer imbalance. The article notes that then-division director Billy Dunn approved the PPMS indication for both sexes, declined an advisory-committee meeting, and required post-marketing evaluation of malignancy. Roche/Genentech and some clinicians have argued that later data (including ORATORIO-HAND and real-world use) support continued use in selected PPMS patients. Those are competing interpretations; FDA has not withdrawn the indication. bmj.com
Status as of now
Ocrevus remains FDA-approved for:
• Relapsing forms of MS in adults
• PPMS in adults
• RRMS in pediatric patients ≥10 years weighing ≥25 kg
The PPMS indication is what Bower is challenging. Check the two Regulations.gov dockets for any later FDA response; citizen-petition decisions often take many months.

When people ask me will they ever find the cure for MS? My answer is NO. The 33 MS Disease Modifying Therapy drugs mainl...
09/28/2026

When people ask me will they ever find the cure for MS?
My answer is NO.

The 33 MS Disease Modifying Therapy drugs mainly treat relapses—the lowest-hanging fruit.
They have not stopped long-term disability.
Relapses are only one piece of the disease.
The real fight is neurodegeneration and progression that happens without a relapse.
That is the part patients are still waiting on a cure for.
Meanwhile we have gone to the 🌖 moon, mapped Mars, and built tools precise enough to navigate space.
We can give lab animals MS disease and we already know Epstein-Barr virus is tightly linked to human MS.
🛎️ Still there is no cure.
🛎️ Still there is no prevention.
Do we ever ask why?
Do we ever demand answers from the people responsible for the official story of this disease?

Let’s return to the natural history of MS research: the main driver of permanent disability is not simply relapses or MR...
09/22/2026

Let’s return to the natural history of MS research: the main driver of permanent disability is not simply relapses or MRI findings.

Relapses can be inconvenient, but can be recoverable. Yet these more visible and treatable aspects of MS have become the focus of a highly profitable system. one that sells expensive, life altering drugs, and repeated MRIs while potentially overlooking the long-term disability and harms that remain often unseen.

That’s MS, folks: a cash-cow disease funded partly by our taxes, even though current approaches are not stopping permanent disability for patients.

I have witnessed patients being told they “need” these drugs using misleading information. When harms occur or disability continues, patients often are told it is merely the natural course of the disease. I have also seen concerns about whether information provided to insurers accurately reflects a treatment’s benefits and risks through my personal experience and my advocacy work.

Unfortunately, meaningful help can be difficult to find. But the system continues to show up to sell more drugs and order more MRIs without improving the long term disability outcomes.
Is this all a wash in the end?
We should be asking is this criminal?
The truth is slowly coming out but I do believe it’s only for the pivot to get patients to the “new” treatment access to high risk procedures that also do not work on the long term disability.
Thankful I woke up and saved my daughter from this Frankenstein model of care that did harm her liver.
Thankful she is showing healing progress from her injuries.

We must learn to ask better questions









https://www.facebook.com/share/p/1GYNEvBDn9/?mibextid=wwXIfr

B cell-depleting therapies (BCDTs) might lead to fewer relapses and lower brain lesion volume than oral therapies in people newly diagnosed with multiple sclerosis (MS), a new prospective study showed.

In the analysis of more than 500 adults with no history of disease-modifying therapy (DMT), BCDTs were associated with a 62% lower relapse rate and lower T2 brain lesion volume vs oral platform therapies over 2 years. Treatment adherence was also higher with BCDTs, with 94% of patients staying on their initial therapy at 2 years.

Despite these differences in inflammatory disease activity, treatment strategies did not differ significantly in disability and serum neurofilament light chain (sNfL), a blood biomarker of nerve cell injury. https://mdsc.pe/4iw6mGj

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