Hello,

My father was just diagnosed with Dementia so I have been scouring everywhere for new treatments that are available. I came across an article in the Lowell Sun about a company out of Boston called Memory XL. The article said that Memory XL was clinically proven effective against MCI, Dementia, and helped with some symptoms of Alzheimer's. My father has been taking it(non-prescription) for 2 months now and already we are seeing some of his old self come back. He less anxious, eats like he used to(my mom is so thankful for that!), and remembers when trash day is. His memory isn't all the way back yet, but we are hopeful. I am so thankful and wanted to tell people about it. I hope it works as well for everyone else,

Sincerely,

Alan

Hello Alan, my name is Tom and I want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your problems. It is very important to keep a positive attitude! There are many claims of "wonder drugs" out there. Some might even work a little. Every time, it is always best to use the medication that your Neurologist prescribes!

My story,
I’m not a professional in this area. I’m a person with AD that serves as a volunteer on the message board. In June of 2008 (age 58) I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you.

I will attach a link to a site that will lead you to your local Alzheimer’s Association
Chapter. Those people will be able to assist you with local resources and thoughts to improve your life:
http://www.alz.org/apps/findus.asp

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

A durable POA is advised
Power of Attorney info
http://www.alznyc.org/caregivers/legalplanning.asp

The Alzheimer’s library
http://alzheimers.boomja.com/C...rst-Steps-61311.html

Caregiving
https://www.carerunner.com/welcome
http://www.alzstore.com/

You might find more support in the Cargivers forum. I hope this information helps you to resolve your issues. Best of luck to you. Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

Hi Alan and thank you for the reference to Memory XL. I'm excited that there is a clinical trial associated with this, and it seems that it has a lot of promise and potential. How long did it take for you to notice improvement? What stage was your Dad at when he started taking this, and what changes did you notice?

JAB, our research Guru, what do you think about this???

Thanks, Moonie

Could this be an advertizement?

they said ginko root would help. I hope that this medication is the answer but dont put all your hope into it .Dissapointment is very stressful and as caregiver myself your mom doesnt need do be let down again. Love and personal care for our love ones is sometimes better then all the medication in the world. Try some on your dad a hug anda I love you go a long way even if they forget right afterwards.

Swarfmaker,

I was skeptical too, which is why I looked up the Clinical Trial on Clinicaltrials.gov. It's really there, and they really had good results.
It has also been published in Scientific Journals so I think it's real.

Please check it out and let me know what you think.

Moonie

I wondered about the ingredients in Memory XL and this is what I found:

"Each white pill contains folic acid, vitamins B12 and E, and three nutritional supplements, S-adenosyl methionine (SAMe), N-acetyl cysteine (NAC), and Aceytl-L-carnitine. (ACLR).

SAMe boosts neurotransmitters, which are chemicals that allow brain cells to communicate, while NAC is a building block for antioxidants, Shea said. Acetyl-L-carnitine provides energy to brain cells, Shea said.

While all of these vitamins and natural compounds can be found over the counter at drugstores and vitamin stores, it's the specialized proprietary blend in Memory XL, that enables the vitamins and supplements to be highly effective.

"You can assemble the right ingredients, but it's how we've put it together that make it work," Shea said."

http://www.uml.edu/Media/News%..._Lowell_Markets.html

Hi, Moonie.

We've talked about this particular product before, on another thread, and I have the same suspicion that swarfmaker voiced.

MemoryXL contains 400 mcg Folic Acid, 6 mcg Vitamin B12, 30 IU Vitamin E, 400 mg S-adenosyl methionine, 600 mg N-acetyl cysteine, 500 mg Acetyl-L-carnitine, and "Peppermint Oil for a fresh minty taste". Haven't ever been able to find out anything about fillers, etc.

There is little (very, very, very little) evidence that this product has any benefit.

Most of the "evidence" that is cited in the papers published by these researchers is pre-clinical -- done with rats, genetically altered mice, or cell cultures (mostly rodent, one human neuroblastoma) -- and done with individual components in the formulation, not with the formulation itself.

There have been a couple of clinical trials done with individual components of the formulation, but this evidence is not relevant to MemoryXL. For example, Vitamin E has been studied in clinical trials ... but at levels far, far higher than what is in the formulation. Memory XL doesn't even have nearly as much Vitamin E as I take, just for general health -- it has 30 IU, I take 400 IU, and if I recall correctly, the trials involved something like 2000 IU. You'd get a lot more vitamin E just in your diet. Memory XL wouldn't cause a ripple. (When asked about that, the response was that many people take a multivitamin, which already contains the "recommended daily allowance" of the first three constituents in the list above. They didn't want the patient going over the recommended daily allowance if already taking a multivitamin, so they added just a trace of each. Well, then, why put any in there at all? You don't suppose it was so they could claim constituents had been studied in a clinical trial...)

There have been two so-called clinical trials of the MemoryXL formulation itself. The first was very small, short-term, open label, and had no placebo group. It was in patients with mild AD. I gather that the researchers never bothered to confirm the diagnosis (they accepted whatever the PCP said) or establish a baseline. Cognitive function tests were very simplistic and apparently not administered by trained/qualified evaluators.

The second had 10 patients total, 5 placebo and 5 treatment. These patients had moderate to severe AD, so the results cannot be compared to the open-label study. As above, the PCP diagnoses were accepted without a full workup to confirm; and patients were evaluated with a very simple set of tests every three months. By six months, 5 subjects had withdrawn, leaving no one in the placebo group. By 9 months, the remaining 5 subjects were gone, for one reason or another, and the study was halted. So they ended up with one data point, at 3 months, with 5 patients per group. It's impossible to draw valid conclusions under these circumstances, even if the data points are tightly grouped, but they're not -- the standard deviations at each data point are HUGE.

There was supposed to be a "real" clinical trial involving a larger group of patients, to develop valid data, but as far as I can tell, this has been delayed. clinicaltrial.gov still shows it as not yet recruiting. I did note that they have decided Shea should not run the trial himself, since he has patented the product, and when and if it is run, it will be at a different university altogether.

It is unclear why they decided to go ahead and start selling the product before ever conducting the trial. And in my opinion, the sales pitch that they give is very misleading, and therefore very unethical.

Thanks (again) JAB

Wow JAB, you are good at this!

Thank you very very much. I can't believe they are preying on people here, do they think this is a game?

Moonie

It's all about money.

Sadly, we have had several people come here to hawk "treatments" solely for their own profit. I imagine we will see others.

We've also had people show up on the Caregiver forum with "testimonials" for other types of products, and some have tried hawking services (e.g., lawyers offering to file lawsuits against nursing homes, etc.) The ones that really honk me off are those who post on the "I have AD" forum. Admin is kept pretty busy, trying to keep these boards safe for our members.

Remember, it's against the law to advertise an over-the-counter nuticeutical or supplement formulation as a treatment for a given disease. If the product actually has been shown -- in properly designed clinical trials -- to be of benefit in treating a disease, and is sold or advertised as such, then it must be sold by prescription only.

So a pretty good rule of thumb: if it's over-the-counter and being advertised as a treatment for AD, it probably isn't.

Wow, powerful responses and thank you to the people that offered kind words, your energy helps me. I did not come on here to "hawk" any products whatsoever, I just came across something that actually has been working for my father and wanted to share it with others. All I know is that I have gotten a piece of my father back that I thought we had lost.
Upon reading comments on here I became skeptical myself and so I looked at the clinical trials. I didn't understand much of it but I did notice the journals that had published the 3 trials ( American Journal on Alzheimer's Disease and other Dementias and the Journal of Nutrition, Health, and Aging.) They don't sound like journals that would publish anything that the science wasn't completely supported.
I also saw that the Alzheimer's Association gave a $240,000 grant to Dr. Shea for further research.
My father still has many issues with his mental health and cognition but Memory Xl is helping.

Sincerely,

Alan

I have spent a lot of time on the internet lately taking a hard look at the supplements that I have been giving my wife, Ann. After careful scrutiny, I ditched a lot of them. I also added a few. I would recommend two exclusion criteria for articles about supplements.

1. If they are not studies involving human beings, ignore them.

2. If there are ads for supplements on the margins of the articles, ignore them.

Just my two cents.

John

Hi Alan,

Thanks for coming back. I'm still skeptical of the product, but I appreciate you explaining who you are and that it really helped your Father. We can't help but wonder about some things, and have "healthy" skepticism and curiosity.

I hope you're right about the product, and I find it interesting that the Alz Assoc is backing Dr. Shea.

JAB is very good at her research, and she had some very valid points. It helps to know the ins and outs of these studies and she helps keep caregivers like me from jumping onto every "miracle" drug that gets publicized. That said, even though all the research hasn't been done, it may be what we're hoping for...then again it's awful to get our hopes up for nothing. Like the Enbrel...it seems to work for a lot of people, but most of us can't get it...very frustrating.

Please, if you are real, keep us updated on your Dad.

Moonie

quote:

Originally posted by SeekingHelp21: All I know is that I have gotten a piece of my father back that I thought we had lost.

I also saw that the Alzheimer's Association gave a $240,000 grant to Dr. Shea for further research.
My father still has many issues with his mental health and cognition but Memory Xl is helping.

Sincerely,

Alan

Great news, Alan. I hope your father continues to improve. Please keep us updated.

quote:

Like the Enbrel...it seems to work for a lot of people, but most of us can't get it...very frustrating.

Enbrel works by blocking the effects of the protein TNF-alpha. Instead of blocking TNF-alpha, what if you could prevent it from being produced in the first place? It may be far easier and much less frustrating to do this than to obtain the Enbrel treatments.

First, let me reiterate: it is illegal -- against FDA regulations -- to market over-the-counter nutriceuticals as treatments for a disease such as AD. That these people are ignoring FDA regs says a lot about their ethics.

Second: There are literally thousands of journals published around the world. The majority are small, obscure, and will publish just about anything they can get their hands on, because they don't get very many submissions and won't be able to sell their publications without articles to fill them.

Third: Even the better journals can contain papers on poorly-designed research projects.

We should always read the original paper and evaluate the caliber of the experimental design and the logic used in developing the conclusions -- we should never simply accept the conclusions as stated by the authors. And we should really, really, really never believe what is said in a news article -- always check out everything in the article, including reading the original research publications.

I had read the two AJADD papers SeekingHelp mentions, which were the basis for my earlier comments. As I said, these are extremely small, very short studies that simply cannot be used for predicting whether the product will be beneficial in AD patients. The placebo-controlled study, for example, involved only 10 participants total, for 3 months, and did not show statistically significant differences between placebo and treatment groups on any of the tests. They lost all five of their placebo group before the next assessment, so there is no further useful data. The other study was open-label, which automatically brings any data into question, and the results were skewed by excluding patients who had not responded positively to prescription AD meds. One-third of the participants withdrew before the end of the first part of the open-label study, leaving only 14 who completed that part of the study, and fewer (but no absolute numbers are given) who completed the second part.

Despite having done loads of literature searches into all sorts of research on AD, I hadn't heard of AJADD before. I had not previously bothered to look up the journal itself. Last night, I did. It turns out that it's not surprising I never heard of it -- AJADD is targeted at nursing home staff, not scientists. It's a tiny journal, published 6 times a year, and they state that their editorial board is not qualified to review any article that is "unusual or highly technical", e.g., is about laboratory-based research, unusual treatment/management strategies, or rare dementias (they don't define what they mean by "rare"). Authors submitting such papers are asked to provide the names of "at least two reviewers". Mind you, lots of people who are asked to review a manuscript won't agree to do so, even for a top-tier journal; so there's no guarantee either of the articles Shea published in this journal actually underwent peer review -- or that he gave the editors the names of qualified reviewers, for that matter.

I had not seen any more recent publications. However, SeekingHelp mentioned one in the Journal of Nutrition, Health, and Aging, so I looked for it. It has not been published. However, what appears to be an editor's proof is available from the website of the company selling Memory XL. I can't decide whether this is one of the most poorly-written manuscripts I have ever seen, or was carefully crafted to make sure that no one can ever possibly figure out exactly what was done where, or by whom, or when, or how many participants were involved in any of the studies, or what data is actually used in reaching their conclusions.

However, several things are clear.

(1) This study did not involve AD patients. "Inclusion criteria included ≥ 18 years of age with no known or suspected dementia or clinical memory difficulties."

(2) Parts of the California Verbal Learning Test II (short form) and the Trail-making test were used as the "primary outcomes." I have never, in all of the many clinical trials for dementia treatment or prevention that I've looked at, seen these tests used as the only primary outcomes for studies on cognitive function. They are sometimes used as part of a large battery of secondary outcomes.

(3) The data did not show any statistically significant differences between placebo and treatment groups in the 3-month study.

(4) The authors noticed that older participants were doing very poorly in comparison with the younger ones, so they threw out the data from the older participants. It appears, from the very limited information that is given on the actual numbers of participants involved, that they threw out 1/3 of the data. Even so, there is still little difference between placebo and treatment groups.

(5) The participants admitted that they had memorized the CVLT answers, so the authors threw out much of that data, as well.

(6) By the time they got to the end of the study, they were down to 17 participants -- 10 in the treatment group and 7 in the placebo group. Hundreds of participants would be needed -- age-, gender-, education-, health-, and diet-matched controls -- subjected to a full battery of neuropsych tests over the course of several years to draw any half-way reliable conclusions.


There are numerous editorial problems with the paper, including what appear to be comments from the authors to themselves about things that need to be fixed in the paper. This struck me as quite strange -- by the time a paper in any decent journal gets to the editor's proof stage, the only errors are usually differences in opinion between author and editor over punctuation or the formatting for citations.

So I looked for the website of the journal -- it's another one that I've never heard of -- and found that this is a tiny, obscure journal, published overseas. They do not provide any information on their readership, nor do they give any examples of the types of papers and/or subject matter that are of interest. It is "the journal of the European Union Geriatric Medicine Society", so I looked that up. Their mission is to "develop geriatric medicine in the member states of the European Union as an independent specialty caring for all older people with age-related disease", and develop clinical guidelines for diseases and conditions frequently found in the elderly. So far, they've developed guidelines for type 2 diabetes and for syncope in older people, and plan to develop guidelines for vaccination of adults over 60 years of age. I see no signs of the EUGMS conducting any research, or having researchers among its membership -- these are practicing physicians.


With regard to the money awarded by the local chapter of the Alz Assoc: that was supposed to be used to conduct a three-year study to study whether the product may delay the onset of AD in patients with MCI . This is the trial I mentioned that has yet to start recruiting, despite the award having been made a year ago -- and which now will be conducted by another university altogether. I.e., the money was taken away from Dr Shea.


It would be unusual to start a newly-diagnosed ADLO on Memory XL but not on any of the conventional AD meds, such as cholinesterase inhibitors (aricept, exelon, or razadyne/galantamine) and/or Namenda. I'm wondering what rationale was used to select Memory XL, rather than the prescription meds that have been tested in large clinical trials and approved by the FDA?