Need someone who is or was in the medical field.

Michael Ellenbogen

I need to connect with someone privately who is or was in the medical field. I have information that I believe can help many here if I put it in the right hands but I need the person needs to be able to share bits and piece of what I have learned. I would prefer JoeC. But she always turns me down so anyone who really wants to help those here. The information I have is gold to those with issues living with dementia. Sadly I can not share it publicly but it would also take a medical person to totally understand it and apply it.

Crushed

Any secrecy in medical treatment  is unethical .  It is the stuff of Quacks

Michael Ellenbogen

Crushed - I have no idea what you are talking about as I only deal with the smartest folks in the world.

Crushed

I have information that I believe can help many here if I put it in the right hands but I need the person needs to be able to share bits and piece of what I have learned.

There is no "medical information"  that can only be in the right hands.  Medical knowledge is published for everyone. 

I work routinely with incredibly smart people .  those in medical scienece  work like crazy to publish their work  for the world

  

Lane Simonian

I don't find this unusual or suspicious.  The information could be going through a rewiew process or there may be an embargo period or a dozen of other reasons why it cannot be shared publicly at this point.  I hope that you find someone here who can provide feedback on this, Michael, and that when the time is appropriate you can share it here.

Michael Ellenbogen

I have a chapter from a book that is not published yet. The information tells a person what they need to do for a person living with dementia including medications. I am unable to apply it as it is over my head. It needs to be read and applied by someone who is medical field. I don’t want to place it to someone who is not as that would be dangerous.   For the right person here if I share it with them, they would be able to help may people here. And no I can not share it publicly as it is not to be shared.  The book cost about 80.00 if you were to buy it.

Marta

Michael:  do you mean that the information is copyrighted?

Michael Ellenbogen

I would think it is but I don’t know for sure. Is in all information in a book copyrighted? This one is not even published yet.

Crushed

Copyright does not apply to an underlying idea. You can't control a medical therapy by publishing it in a book Copyright act section 102 b  

In no case does copyright protection for an original work of authorship extend to any idea, procedure, process, system, method of operation, concept, principle, or discovery, regardless of the form in which it is described, explained, illustrated, or embodied in such work.

 

Michael  you write " For the right person here if I share it with them, they would be able to help may people here. And no I can not share it publicly as it is not to be shared." 

That screams QUACK  as loud as it can.  Anyone anywhere with a medical breakthrough needs to have it confirmed by independent researchers   or they are 100% QUACK

 

 Medical ethics have prohibited "secret remedies" for a century

Crushed

Copyright does not apply to an underlying idea. You can't control a medical therapy by publishing it in a book Copyright act section 102 b  

In no case does copyright protection for an original work of authorship extend to any idea, procedure, process, system, method of operation, concept, principle, or discovery, regardless of the form in which it is described, explained, illustrated, or embodied in such work.

 

Michael  you write " For the right person here if I share it with them, they would be able to help may people here. And no I can not share it publicly as it is not to be shared." 

That screams QUACK  as loud as it can.  Anyone anywhere with a medical breakthrough needs to have it confirmed by independent researchers   or they are 100% QUACK

 

 Medical ethics have prohibited "secret remedies" for a century

Iris L.

I don't think what Michael is trying to do is unethical.  From what I understand, he wants a person with a medical background to review an unpublished manuscript.  The medical person can review and take it from there. I don't see a problem.  

Iris

Michael Ellenbogen

I have a lot of respect for you  CrushedBut i think you are losing it. This is but and author who has written many may boogs for medical staff used all over the world. Why is it that every time I try to do good there is someone who always try to make me out as the bad person when they are clueless?  

 

Lane I can let you see this if you promise to not share and maybe you could explain it better. I would as crushed but he has refused so many times that it make no sense to ask him. 

Donr

Michael, I understand what you are looking for. In this case Crushed needs to step back. Crushed has great information but not in your post.

Crushed

Michael wrote "It needs to be read and applied by someone who is medical field. I don’t want to place it to someone who is not as that would be dangerous.   For the right person here if I share it with them, they would be able to help may people here."

This is promoting a secret medical therapy   

 It is not reviewing a manuscript  or anything similar.  Someone is afraid of public release of some information but they want to promote it as a treatment 

He also wrote The information I have is gold to those with issues living with dementia. Sadly I can not share it publicly but it would also take a medical person to totally understand it and apply it.

 QUACK QUACK QUACK

  

jfkoc

Let's not say quack until we know quack is being served. That is why Michael is asking for some help here.

Lane Simonian

I would be happy to look at it, Michael, and I promise not to share it. 

If I can, I will try to explain it to you.  As I keep having to explain to others I am not a medical professional but after seventeen years of reading hundreds of articles on Alzheimer's disease I am usually able to understand them and evaluate them.

This is far from the place for this, but I just wanted to add what constitutes fair use of a copyrighted piece of work (whether published or unpublished) is often quite complicated and open to interpretation.  You can usually copy some pages from a copyrighted work, but even then if you copy and share a graph or photograph you often have to get the author's permission (or whoever is the copyright holder).

Michael Ellenbogen

I just sent it to you and I know you will need some time as it is a lot of pages. Thanks Lane.

Lane Simonian

Thank you very much, Michael.

Michael Ellenbogen

Sometimes I get the feeling that some people just don’t want to help others or will try to sabotage others for various reasons. I just don’t get it. While I hope that is not true but that is how I feel some time. I go so much out of my way to try to help with the best resource available and some folks just amaze me with their replies. I sometimes wonders on who really has the dementia.  

Crushed

I  have spent my entire career in consumer protection and science based safety regulation . I have been an ethics advisor in medical research. I have taught the evaluation of medical evidence to physicians.  My work on Medical evidence went to the Supreme Court in the Daubert/Bendectin case.    I wrote the evaluation of the first FDA "science court"  in 1983.  

Alzheimer's is a fertile field for Quacks.   We have poor diagnostic tools and the variations  between the underlying disease and the disease presentation gives rise to both epistemic and aleatory uncertainty in research.    Observational research must be very very carefully designed to give any useful knowledge. Research designs are normally discussed in the community prior to the research to avoid errors. The output is carefully refereed and published in the medical literature for comment by the qualified community. 

Copyrighted privately published books are not part of the medical literature

 They are the domain of quacks

I have demonstrated expertise in the quality of medical evidence.  That is what I have taught physicians.  My first PhD student was a physician in public health whose thesis involved  debunking false narratives about  public health  by showing the evidence was inadequate.

Lane Simonian

I  have read through the approximately 50 page chapter from this manuscript twice now, and the one thing I can say for sure is that it is good science (which does not necessarily mean it is perfect science).

The author provides a very detailed account of the biochemistry behind dementia (much of the focus is on Alzheimer's disease but he or she also covers other major forms of dementia).  Some of it is more or less standard interpretations (although not necessarily correct) and some of it is more speculative.  But none of it is out on the fringes.

The most difficult part for me to comprehend is why some people develop neuropyschological problems in dementia while others do not.  There are all sorts of theories about which neurotransmitters and receptors are involved in these various problems, but no real good answers at this point (although the author tries to provide some answers or ideas).  

The need for alternatives to anti-psychotic drugs is great as they may cause severe negative reactions and increase the rate of death in dementia patients.  The author mentions a number of alternatives (including trying to determine if pain or some other treatable condition is causing agitation, for instance).  The two drugs that seem to have some promise are pimavenserin and dextromethorphan (sometimes in combination with quinidine or bupropion), but there is some ways to go to determine the efficacy and safety of each for the treatment of neuropyschological problems in dementia.  

LadyTexan

Thank you Michael and Lane for your actions in this matter. Your efforts are much appreciated by others and me. Blessings to you both.

-LT

Crushed

the claim was The information I have is gold to those with issues living with dementia.

What is the gold? 

urr Alzheimer Res. 2015 Oct; 12(8): 712–722.

Published online 2015 Oct. doi: 10.2174/1567205012666150701103107

PMCID: PMC5384474

PMID: 26412218   

 Neurobiology of Alzheimer’s Disease: Integrated Molecular, Physiological, Anatomical, Biomarker, and Cognitive Dimensions

  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5384474/

  Here is a current highly qualified opinion on where we stand
  https://www.medpagetoday.com/neurology/alzheimersdisease/91927

Possible progress in symptomatic treatment

  https://molecularneurodegeneration.biomedcentral.com/articles/10.1186/s13024-021-00424-9

June45

Ditto to what LadyTexan said.

Crushed

People are desperate to hear any claim of good news on the Alzheimer's front.  It is so much easier and more popular to say  "we are making fabulous progress"

than to report the painful reality.  Add in "it's a secret known only to the enlightened few"   

And you can sell books or stuff or consultations or whatever.  Or just promote your pet cure. 

Who wants to listen to cautious downbeat advice from the Mayo Clinic when someone promises GOLD

Alzheimer's treatments: What's on the horizon?

Despite many promising leads, new treatments for Alzheimer's are slow to emerge. By Mayo Clinic Staff

 

Current Alzheimer's treatments temporarily improve symptoms of memory loss and problems with thinking and reasoning.  These Alzheimer's treatments boost performance of chemicals in the brain that carry information from one brain cell to another. However, these treatments don't stop the underlying decline and death of brain cells. As more cells die, Alzheimer's disease continues to progress.  Experts are cautiously hopeful about developing Alzheimer's treatments that can stop or significantly delay the progression of Alzheimer's. A growing understanding of how the disease disrupts the brain has led to potential Alzheimer's treatments that short-circuit basic disease processes

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-treatments/art-20047780

Perhaps reading the JAMA Article on Aducanumab shows the risk of regulatory approval of snake oil 

  However, considering that these efficacy trials were stopped for futility, there is no reason to favor the trial with the positive signal in 1 of 2 treatment groups over the trial with the negative outcome in both treatment groups, and there is no persuasive evidence to support approval of aducanumab at this time. Randomized trials should remain the primary means that regulators use to assess product efficacy, and that patients, physicians, and policy makers rely on, to have confidence in the safety and effectiveness of new therapeutics.

https://jamanetwork.com/journals/jama/fullarticle/2778191

 Of course we can hope for the future. but the CURRENT level of useful therapeutic knowledge has not changed.  All claims for current breakthroughs NOW are Fool's gold

 Prospects for Future Advances in Alzheimer’s Disease

https://healthpolicy.usc.edu/research/prospects-for-future-advances-in-alzheimers-disease/

Marta

Hey, Crushed. Could you reserve judgment until we know what Michael has to offer?  I don’t know what it is you find so personally threatening.

Michael Ellenbogen

Instead of adding all of this crap and not knowing what you are talking about why dont you just connect with me and share your email and you look at what I have. I just don’t get you.

jfkoc

The need for alternatives to anti-psychotic drugs is great as they may cause severe negative reactions and increase the rate of death in dementia patients.  The author mentions a number of alternatives (including trying to determine if pain or some other treatable condition is causing agitation, for instance).

I don't get the idea that the information in question has to do with curing any dementia. It has to do with the treatment of symptoms and that is what we talk about daily on these forums.

As a caregiver I know that the above is true. I will also add that there are studies showing that non-medical treatment can be as beneficial as the use of drugs....some say that the non-medical can be more beneficial.

We already know what an UTI can do. We know what stress can do. We know about Teepa Snow, Naomi Feil, and Allen Power. We know about the Hearthstone and Abe's Garden. 

The problem becomes sharing what we know until the knowledge becomes common to caregivers whether in the home or in placement as well as to the Drs we go to for help. At the same time we  need to look at new ideas

Information is always at one time "new".  We will never "do better" if we do not keep an open mind.

I am very interested in what else the author of the above has to say.  

Thanks Michael and Lane.

Crushed

Since I have been here I have responded EXACTLY  the same way to everyone who claims that their roommate, bartender, pastor  best friend, famous doctor  etc has a cure for Alzheimer's  but that Martians or lawyers or Big pharma or the FDA or anyone else does not want you to hear about it.  

There are literally thousands of high grade researchers all over the world working on a vast range of Alzheimer's hypotheses.  There is a NOBEL prize and lasting fame for anyone anywhere who can scientifically demonstrate any meaningful advance in Alzheimer's detection or treatment. It is a Holy Grail for  researchers. For these folks demonstrated scientific priority is EVERYTHING.  They publish quickly and aggressively in the scientific literature. They are combative and and assertive but not quiet. 

So when anyone , no matter how well intentioned (like Michael)  suggests super secret, super information that cannot be just publicly released  my "bullsheet" goes off scale.  take the recent debate over the supposedly revolutionary Alzheimers symptomatic treatment .

March 30, 2021  Evaluation of Aducanumab for Alzheimer Disease  Scientific Evidence and Regulatory Review Involving Efficacy, Safety, and FutilityJAMA. Published online March 30, 2021

This article is part of a public aggressive scientific debate over the newest pharmaceutical for Alzheimers. The promoters of the drug "massaged " the data until they got a sub group in one study that showed a modest effect.  The authors of this article say it's nonsense.

Any treatment will appear to be more effective if individuals in whom it works least are removed from the analysis. In short, while post hoc analyses are useful for generating interesting hypotheses to be tested in future trials, the post hoc analyses regarding aducanumab provided limited information useful in deciding the benefit of this new drug and these post hoc analyses should not be the basis for FDA approval.

My point is not whether this drug is worthless or not. My point is that science advances through the public debate on the public evidence by qualified experts, not by manuscripts pumped by interested parties to caretaker news groups.   

Lane Simonian

You make a wonderful point about non-pharmacological interventions for helping people with dementia jfkoc.  I wish everyone knew about the resources you mentioned.

Being supported in what you are trying to accomplish is always appreciated.  Michael has painstakingly reached out to and communicated with so many dementia researchers throughout the world.  And he has freely shared his time and resources with many.

To try to somewhat allay Crushed's fears, the author examines some of the current treatments for Alzheimer's disease and tries to explain the reasons for their limitations  He or she looks at some possible future treatments for dementia especially in regards to neuropsychological problems (beginning with determing if these problems have a non-drug solution).  There are lots of tables, graphs, and charts that were quite visually helpful.  I can understand why the author does not want to share information until the book comes out.

Much or all of it has been discussed before although not exactly in the same way.  He or she is not promising miracle cures, although some of the information may be useful to those with dementia or their caregivers.  

I have tired of the breakthrough drugs over the years.  Most CEO's like to tout results as never being achieved before.  So,  I kind of see where Crushed is coming from and perhaps Michael's wording got his dander up.  We sometimes promise more there than is actually there, but putting that aside this chapter did contain some valuable information.

Michael Ellenbogen

If I knew sharing this with the FDA could change your mind I would share it with them for feedback.  By the way did I mention I am part of the “Alliance for a Stronger FDA”. I am also friends with Janet Woodcock who has helped me with other issues in the passed going back to her original term in the FDA not just now.