Julie's letter to Dr. Hellmuth (& all who've lost scientific curiosity & support status quo in AD research)

[TheresaB]

An Open Letter to Dr. Hellmuth
By Julie Gregory, Chief Health Liaison for Apollo Health

Dear Dr. Hellmuth,

As an Alzheimer’s activist representing a large community of people genetically at risk for Alzheimer’s disease, I’ve been following your career with fascination. From what I’ve been able to glean, you’re a young neurologist and assistant professor at UCSF with a primary focus on HIV, yet you’ve positioned yourself as a “champion of the people” and authority on Alzheimer’s disease with numerous publications critiquing the Bredesen Protocol®. Some are thinly veiled, such as The Rise of Pseudomedicine for Dementia and Brain Health, whereas others are outright attacks full of misinformation, such as Pricey Protocol Not Proven to Prevent or Reverse Alzheimer’s Disease. My hope is that you have a sincere interest in protecting our patient population, but I worry that your primary motivation may be a bit different.

You may not be aware that your areas of interest bridge two seemingly diverse patient groups that share many things in common. You were probably very young in the early 1980s when healthy, young men inexplicably began to die — slow, painful deaths — from what would eventually be recognized as AIDS (Acquired Immune Deficiency Syndrome). It was a very frightening time for everyone. We didn’t understand how the virus (HIV) that resulted in AIDS was transmitted, and everyone was afraid. By 1985, over 6,000 patients had succumbed, but the medical community had nothing — no effective treatment, and only one private pharmaceutical company was even pursuing a drug candidate. By early 1987, the death toll topped 40,000 victims in the US alone, while the worldwide infection rate was estimated to be close to 10 million. And yet, the medical community still had nothing to offer. Business as usual was not addressing this international health crisis. Sound familiar?

It wasn’t until patient activists began to demand that medical research be conducted in a fundamentally different way that things began to change. By forging an authentic partnership with the decision-makers (physicians, researchers, pharmaceutical corporations, the FDA, NIH, etc.) who were essentially blocking progress, they ultimately paved the way for a treatment that is keeping millions of HIV-infected people alive today.

There are almost five times as many people living with Alzheimer’s in the US than are living with HIV, and we have waited a really long time for an effective treatment … and we are beyond outraged. We may not have the youthful enthusiasm and energy that the early AIDS activists used to bring attention to their plight, but our anger and will to live are fueling us to work just as diligently to find our own cure. And, yes, we are facing the same roadblocks that the early HIV pioneers encountered.

Yet, you and your colleagues have worked very hard to maintain the 100% ineffective status quo that has not found a treatment for Alzheimer’s in 116 years. You’ve additionally kept up a steady stream of criticism of the one approach that is yielding success for our population without expressing even a little bit of scientific curiosity, all in the guise of “protecting” us.

You don’t have to school us on how the scientific method is supposed to work; we already understand, and we have seen time after time that this process has not worked with this disease. Trialing one intervention at a time against a multifactorial disease is unlikely ever to prove effective. Through our own self-experimentation, we’ve seen repeatedly that this protocol works, and our own observations have been confirmed by repeated publications and a recent proof-of-concept clinical trial, with plans underway for a larger randomized controlled trial.

When members of our community identify and address the actual contributors to our disease process (insulin resistance, sleep apnea, inflammation, etc.) while using dietary and lifestyle strategies to provide optimal support for our brains, our cognition improves. When we stray, it worsens. It’s not a cure, but it’s far and away the most effective treatment we have for now, and it has been documented to reverse decline sustainably in many.

I’m stunned at the lack of attention our successful approach has garnered. I don’t want to believe that the Alzheimer’s research community is more wed to a failed hypothesis, profiteering through Big Pharma, securing grants and tenure than it is to truly helping an enormous community of people suffering from Alzheimer’s (and pre-Alzheimer’s), yet that is exactly what I see. We won’t find an effective treatment until practicing physicians, researchers, and policy-makers stop protecting their turf and start protecting their patients.

I want to believe that you sincerely care and are trying to be helpful, but your repeated attempted takedowns of the Bredesen Protocol belie that motivation. It must be very frustrating to treat patients with cognitive decline who repeatedly ask for your help with the Bredesen Protocol. How dare they ask for an experimental treatment for a progressive, fatal disease! They should be content with your patronage and prescription for an ineffective pill that makes you feel better, but that will ultimately hasten their decline. [1]

Those of us at risk for and living with this disease don’t have time for business as usual. We’re caring for our affected loved ones while fighting for our own lives. We’re grateful for Dr. Bredesen’s pioneering science, his constant search for answers, his ability to persevere despite your attacks, and most of all, his willingness to authentically partner with us to find a cure.

Instead of practicing obsolete medicine and issuing a constant stream of demerits against your beleaguered colleague who represents a grassroots movement, join us and become a part of the solution. We warmly invite you to a seat at the table.

Sincerely,

Julie Gregory
___
Julie is the founder and president of the ApoE4.Info non-profit, a grassroots organization of ApoE4 carriers working to prevent and reverse Alzheimer’s disease and among the many who have recovered their cognitive health using the Bredesen Protocol. Sharing the knowledge she gained from reversing her cognitive decline, she’s collaborated with Dr. Bredesen and his integrative physician wife, Dr. Aida Lasheen Bredesen, to write the handbook portion of the New York Times bestseller “The End of Alzheimer’s Program.” Julie integrates her background in journalism, public relations, and counseling with her passion for cognitive health to serve as a protocol educator in a consulting role with Apollo Health. You can read her story in “The First Survivors of Alzheimer’s.”
___
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542289/

[JulieAnnie]

Excellent Julie. Thank you and Bravo!!!

[Quantifier]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542289/

Theresa, I think you have the wrong link - it sent me to a 2019 paper on cholinesterase inhibitors.

Good letter, I'd like to know where it got published.

[TheresaB]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542289/

Theresa, I think you have the wrong link - it sent me to a 2019 paper on cholinesterase inhibitors.

Good letter, I'd like to know where it got published.

Thank you for pointing that out. That is not the wrong link, that is a link to a footnote in the letter. The odd thing is when I cut and pasted the text, the footnote notation was evident,

footnote.jpg

but after hitting the submit button it went away. Thanks to you I fixed it.

The letter was published in the most recent Apollo Health newsletter that is sent out to those on their mailing list. It has since been copied/pasted and shared on the web, especially certain facebook pages. Julie has encouraged this sharing in order to spread the word.

[Gail]

An Open Letter to Dr. Hellmuth
By Julie Gregory, Chief Health Liaison for Apollo Health




I want to believe that you sincerely care and are trying to be helpful, but your repeated attempted takedowns of the Bredesen Protocol belie that motivation. It must be very frustrating to treat patients with cognitive decline who repeatedly ask for your help with the Bredesen Protocol. How dare they ask for an experimental treatment for a progressive, fatal disease! They should be content with your patronage and prescription for an ineffective pill that makes you feel better, but that will ultimately hasten their decline. [1]

Those of us at risk for and living with this disease don’t have time for business as usual. We’re caring for our affected loved ones while fighting for our own lives. We’re grateful for Dr. Bredesen’s pioneering science, his constant search for answers, his ability to persevere despite your attacks, and most of all, his willingness to authentically partner with us to find a cure.

Instead of practicing obsolete medicine and issuing a constant stream of demerits against your beleaguered colleague who represents a grassroots movement, join us and become a part of the solution. We warmly invite you to a seat at the table.

ThereaB and JulieG Bravo!! Please see this following article from Science Magazine detailing the fraud involved in Alzheimers research and the millions of dollars misspent by NIH as a result of scientist Lesne research on AB plaque published in 2006 which was falsified by fraudulent MRI!! Why isn't Dr. Hellmuth going after Lesne? Everyone should be outraged with neurologist Lesne's work. This AB plaque work produced for the Alzheimer's community by the established scientific community?? This has wasted millions dollars and gotten Alzheimer patients nothing. Hellmuth is not criticizing this work. It is outrageous.
A quote from the article "Schrag’s work, done independently of Vanderbilt and its medical center, implies millions of federal dollars may have been misspent on the research—and much more on related efforts. Some Alzheimer’s experts now suspect Lesné’s studies have misdirected Alzheimer’s research for 16 years."

https://www.sciencemagazinedigital.org/ ... o=07504829

[ApropoE4]

I think Hellmuth is basically saying he doesn't believe a non peer reviewed analysis of data from a study funded by sweat lodge hippies and designed to just barely be able to claim no conflict of interest.

I have no opinion on whether he's right or not but I did want to point out there were only four 4/4 patients in the study, which likely means many participants had MCI for non AD reasons. We're also not told (that I could see from skimming the paper) whether the 4/4s were responding.

[JD2020]

That is an amazing letter. No wasted words, very powerful.

[Tincup]

I think Hellmuth is basically saying he doesn't believe a non peer reviewed analysis of data from a study funded by sweat lodge hippies and designed to just barely be able to claim no conflict of interest.

I have no opinion on whether he's right or not but I did want to point out there were only four 4/4 patients in the study, which likely means many participants had MCI for non AD reasons. We're also not told (that I could see from skimming the paper) whether the 4/4s were responding.

This is a violation of our community guidelines.

"Respect. All posts and private messages should be courteous. Disagree with ideas, not people. You may not attack, insult, undermine, or belittle anyone. This broad prohibition extends beyond other members and this community to the world at large"

If you do not reword your post to conform, I will delete it. You have been warned previously.

[TheresaB]

I think Hellmuth is basically saying he doesn't believe a non peer reviewed analysis of data from a study funded by sweat lodge hippies and designed to just barely be able to claim no conflict of interest.

Not only have you violated our Community Guidelines as pointed out by Tincup, you are factually incorrect.

Dr Hellmuth is a female.

Dr Bredesen's paper was peer reviewed. https://content.iospress.com/articles/j ... /jad215707

[ApropoE4]

I think Hellmuth is basically saying he doesn't believe a non peer reviewed analysis of data from a study funded by sweat lodge hippies and designed to just barely be able to claim no conflict of interest.

I have no opinion on whether he's right or not but I did want to point out there were only four 4/4 patients in the study, which likely means many participants had MCI for non AD reasons. We're also not told (that I could see from skimming the paper) whether the 4/4s were responding.

This is a violation of our community guidelines.

"Respect. All posts and private messages should be courteous. Disagree with ideas, not people. You may not attack, insult, undermine, or belittle anyone. This broad prohibition extends beyond other members and this community to the world at large"

If you do not reword your post to conform, I will delete it. You have been warned previously.

Which person am I disagreeing with or belittling? I summarized Hellmuth's claims. I did not make any claims of my own with regards to them. I additionally pointed out the unlikely distribution of 4/4 and 3/4 among study participants.

Please clarify your issue with my post.

eta: if the issue is with sweat lodge hippies then I will both acknowledge that I don't know for a fact that they're hippies, and that I have plenty of love and appreciation for hippies.