An opportunity to participate in an E4 trial

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Julie G
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Re: An opportunity to participate in an E4 trial

Post by Julie G »

Mark, from my understanding, it is currently limited to US citizens...but they hope to spread outside of the U.S. very soon. Please still sign up if you are interested. They will expand, based upon demand.

Circ, you DO reveal your current supplement regimen and then do baseline serum testing. They come up with a protocol based upon that combined information. You do baseline and periodic neuropsych testing. Some participants are referred for additional imaging. (You could always decline if it were cost prohibitive.)

We can expect a long awaited update from Vik shortly. Huge thanks to all for your patience.
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Teezer
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Re: An opportunity to participate in an E4 trial

Post by Teezer »

I got a call today from someone associated with the MEND study, and she left a message on my answering machine. I listened to the message twice, but I could only understand one word in ten. Something about a half-hour presentation, and an unintelligible email address, or perhaps a URL.

Anyone else get this call?
It's weird how I'm constantly surprised by the passage of time when it's literally the most predictable thing in the universe. -- xkcd
circular
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Re: An opportunity to participate in an E4 trial

Post by circular »

Hi Teezer, I got the call today too. I will PM the email address and phone number I got.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: An opportunity to participate in an E4 trial

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MEND__Process_need to personalize 7_22_15.pdf
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Re: An opportunity to participate in an E4 trial

Post by tesslo »

I am interested in the toxicity or heavy metal testing for I already follow the protocol. There is no escaping your environment and genetics but there are certain cluster groups...http://www.worldlifeexpectancy.com/caus ... y-country/

From the above map it seems like the industrialized countries are the worst for Alzheimer's or maybe we are just better at diagnosing...I sometimes wonder if there is no escaping the effects of lead and diesel gasoline.

I was born in Los Angeles and remember the "smog" alerts (along with those awesome air raid drills) where we spent our PE class laying down on the ground in the gym! Moved to the beach next to a powerplant, moved to the mountains where they sprayed heavily with pesticides so the tourists would not have to experience bugs. Then to a coastal AG area where they overgrow grapes and spray heavily with pesticides. If one has had their DNA done they know not all metabolize the toxins the same...

I have found that Surfriders.org has a environmental check link on their site and I was shocked to find just how polluted the area I live in is because it looks so harmless! another bad sign is when they start opening Autism and Alzheimer's centers in your area even though it is not densley populated!
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Julie G
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Re: An opportunity to participate in an E4 trial

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Here is a long awaited updated from Muses Labs. Vik and I continue to speak about lowering the price for our members. I'll keep you all posted as to the outcome of our discussions. In the meantime, bear in mind that the cost of this service will decline over time as this becomes more standard care:
About Muses Labs
Muses Labs is a medical information services company that enables personalized and practical application of the MENDTM Protocol. The MEND Protocol was designed by Dr. Dale Bredesen. Results achieved with pilot patients were published in Reversal of cognitive decline: A novel therapeutic program http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4221920/ in September 2014 in the journal Aging. The paper described a small subset of the Protocol. The protocol is very data driven (genome, blood tests, medical history etc) and applies pharmaceuticals, nutraceuticals and life style changes in a personalized manner with a goal to halt and reverse progression of cognitive decline associated with MCI and Alzheimer’s disease. MEND Protocol is also applicable to those interested in preventing or delaying onset of symptoms. MEND Protocol is emerging and is in the early stages of development.

Muses Labs is currently conducting a structured study of the MEND Protocol among patients with MCI and early stage Alzheimer’s disease. To be considered for the study, visit https://museslabs.com/individuals/ and click on “I’d like to be considered for the study” at the bottom of the page.

About Muses Labs’ study
The study of MEND Protocol is a 6 month study with an 18 month enrollment period. The study is designed to assess efficacy of the MEND Protocol.

Enrollment is currently open and individuals can enroll as described above. Most MEND Protocol related expenses (genome, blood tests, supplements, neuro psych testing, online cognitive stimulation, coaching etc) of study participants are paid for by the study sponsor Muses Labs. The study does have a strict acceptance criteria that is kept confidential to help avoid bias in responses in the study acceptance questionnaire.

Each individual in the study will need a collaborating physician. Muses Labs will work with the individual to engage a supporting physician. In addition a study partner is required. The individual will follow a process that includes genome testing through 23andMe, panel of blood tests that are repeated, neuro-psych tests and multiple personalized MEND Protocols for 6 months.

What if you are not accepted into the study?
Most individuals interested in the study are not going to meet the study acceptance criteria. Unlike typical trials and studies where the treatment is not available to those outside the study, Muses Labs is able to offer the MEND Protocol to individuals that are interested even if they don’t meet the study criteria. This is possible because the MEND Protocol relies entirely upon existing FDA approved medications and well-studied nutraceuticals. Each individual that signed up and did not meet the study acceptance criteria will be given an option to start the Protocol outside of the study structure.

Individuals on the MEND Protocol outside the study receive the same care and attention, however they are responsible for the costs of MEND Protocol. Total costs including testing, supplements and payments to Muses Labs are approximately $7,800 for the first year and vary from one individual to another. The above estimate does not include cost of doctor visits and cost of prescriptions as those vary widely based on the health insurance coverage of the individual. The projected costs are lower for future years (approximately $6,300 / year) as less frequent testing is necessary after the first year. Note that the cost of Muses Labs’ service is only $250/month. This cost is included in the annual expenses described above. We continue to work to establish relationships with additional vendors and make our operations more efficient to help lower the costs.

Muses Labs does not make any claims about the effectiveness of the Protocol and any individual that decides to follow the Protocol has to do so under the care of their physician.

I signed up but have not heard anything from Muses Labs
If you signed up on the Muses Labs website, you are on our lists and we will get to you as quickly as possible. We have several hundred individuals awaiting their turn and we are grateful for your patience. You do not need to sign up again.

Thank you for your interest, support and patience. We look forward to working with you.

Vik Chandra
vc@museslabs.com
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Re: An opportunity to participate in an E4 trial

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My 4/4 wife & I had our intro call with our coach. My wife and I are each others study partners so that is convenient. I'd previously emailed the coach explaining we are under Dr. Gundry's care and asking if a) his "Matrix" diet with E4 mods https://www.apoe4.info/forums/viewtopic ... +e4#p16563 would be acceptable under the MEND protocol and b) tossing out the possible conflict with Gundry prescribed niacinimide impacting our ability to get to our Bredesen homocysteine target of <6. The coach said she'd emailed Bredesen and would get back to me with his answer. I also emphasized we were in the program for prevention and that I would like all the "back up" information they give the docs. She said she'd verify I could have access. She brought up it would be great if Gundry could be our doc to follow us in the study. I asked for the information they send the doctors so I could write him a letter and ask. I think it would be wonderful to have the cross pollination of Gundry and Bredesen. Gundry is so busy, I don't give it a high probability he'll accept, but "if you don't ask you don't get." If Gundry does not accept, then they said they'd give us a list of integrative docs in our area, or we can use an internist we know. If Gundry does accept, we'll have to get a local doc to do the neurological testing.

We went through the presentation in tramey's post https://www.apoe4.info/forums/posting.p ... 87#pr16971

As non-study participants, we'll be tested 4x/year the first year and 2x/year the second (as opposed to every 6 weeks for those in the study).
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circular
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Re: An opportunity to participate in an E4 trial

Post by circular »

My call is in less than an hour. I want to hear what they have to say but I doubt I can move forward due to cost. I also want to cement my interest in case cost becomes less of an issue and I might be able to start later. I plan to work with Dr. Gundry though, and if I can use mostly the same labs for both that *might* help, so please keep us posted on what you learn. Gundy *may* have three such double-duty patients, but again, I'm doubtful at the moment for myself. I will work with Gundry either way.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: An opportunity to participate in an E4 trial

Post by luannKay »

I am hoping there is still an opportunity to participate in an E4 trial. Please let me know
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Re: An opportunity to participate in an E4 trial

Post by Stavia »

luannKay wrote:I am hoping there is still an opportunity to participate in an E4 trial. Please let me know
luannK
Hi Luann, unfortunately there is no longer a trial of this programme accepting new patients free, as far as I am aware. I believe the programme is available commercially ie at a fee. Julie might know more.
However, welcome to our forum!
Would you like to post an intro on the intro section? It would be lovely to get to know you.
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