Here's a story about a controversial means to access full length papers

https://americanlibrariesmagaz...why-sci-hub-matters/

Here's a URL that currently works to access the service
http://sci-hub.bz/

The website above is being sued for copyright violation and may be shut down. If it is an alternate way to access it is the TOR browser.
https://www.torproject.org/pro...s/torbrowser.html.en

and using the deep web url
scihub22266oqcxt.onion

I am not endorsing the use of this website. If you use it to access copyrighted material without paying the very high fees charged for such access you will be engaging in activity possibly subject to legal penalty.

Note "controversial" equates to "illegal."

There are plenty of ways to access stolen work product on the web. Let your conscience be your guide.

The controversy has nothing to do with the legality of this website. What they are doing is blatantly illegal without apology. The site was created by a researcher and has been grown with the support of countless other researchers sick about the way the current system locks the fruits of their labor behind paywalls and the devastating impact this has on the research commmunity.

The controversy is about the evilness of the system, a business model that originally served to expand access to research through hard copy publishing but now is the primary impediment restricting access in pursuit of outlandish profiteering.

Note, the publishers are not the researchers nor are they funding the research. You are funding research by your contributions to the KDA and by paying taxes, research to which you are denied legal access without paying outrageous fees that bear zero relation to the cost of providing that access.

I can't agree more heartily with your statement, "Let your conscience be your guide."

This message has been edited. Last edited by: ToddAllen,

quote:

I am not endorsing the use of this website.

Perhaps true, but you are aiding and abetting the theft of work product (the journal articles.) I suggest you remove the links to access the stolen property.

Let YOUR conscience be the guide.

Bob, here's a story in the Washington Post with a clickable link to sci-hub. I suggest you contact them immediately to suggest they unpublish their story because they have aided and abetted criminal behavior.

https://www.washingtonpost.com...sci-hub-now-we-know/

And a story in the New York Times also with a clickable link - though outdated, but still you might be able to contact them and prevent them from providing links to access stolen property in the future.

http://www.nytimes.com/2016/03...rs-be-free.html?_r=0

This message has been edited. Last edited by: ToddAllen,

You may have noticed that the Washington Post's moral compass has been broken for a while. That said, the WP article was pretty clear on the stolen property issue.

This thread should be deleted IMO, I don't see that it has any value to KD folks.

Bob, your opinion seems to be shared by a small minority as indicated by this poll in science magazine.

http://www.sciencemag.org/news...humbs-pirated-papers

If we lived in a democracy where laws reflected the will of the public things would be different and sci-hub would be unneeded or legal. But fortunately not all of the rest of the world is under the thumb of US law which is why sci-hub is doing fine despite legal challenges. And since US law often conflicts with international law most expect sci-hub will win. Even if it doesn't until the broken system is fixed new sci-hubs will keep popping up as many sci-hub clones are being built world wide.

One reason sci-hub and its offspring are so important is that there are so many "untreatable" diseases such as ours from which so many suffer and die. Yet there is scientific knowledge to help.

Except that knowledge was tucked away in isolated systems held behind layers of paywalls and security making access hard even for those at the most prestigious institutions. Note, even Harvard the best funded academic library in the world was cutting back on subsciptions to scientific journals as the prices rapidly became unaffordable for them.

Before sci-hub my condition was untreatable. At least according to my neurologist and all the other physicians I've seen. But due to sci-hub I'm no longer worried about whether I'm going to be done in by stroke or pneumonia. I no longer fear choking when I eat. I'm no longer worried about serious injury from my next fall. I no longer have trouble getting dressed. I no longer need my mobility scooters or the elevator we bought 4 years ago.

Unfortunately I didn't get the info quite soon enough so it appears a couple nerves are completely gone and my left hand will probably never regain full normal function again, but I got to the needed information in time to save the rest of my body and probably very soon I'll resume a productive working life again considering the pace at which I'm recovering.

If other people with KD quit waiting around for the "treatment" and began doing their own reading and acting on what is already known and shared the knowledge gained we could all be getting better even faster.

My conscience prevents me from doing nothing while there is so much need, hopefully your conscience remains untroubled by your decision to passively deteriorate helping neither yourself or others.

This message has been edited. Last edited by: ToddAllen,

I'm glad you found a cure for whatever ails you - are you talking about a cure for KD? Please share.

It's not a cure Bob, I've still got the bad gene. It's treatment based on anything I can find shown to be beneficial in the myriad research papers.

When researchers do science they try to isolate factors to test individually to better see their impact. And in isolation they have found many things help but nothing yet where the benefits outweigh the risks sufficiently that they recommend it as treatment. I'm not doing science, all I have for feedback are crude indicators of strength and endurance and the way I feel along with basic biometrics of blood pressure, pulse, blood glucose testing, etc. I've been applying anything I can which seems relatively benign for which there are indications it might be beneficial. In the research papers on SBMA they are testing drugs to stimulate processes in the body. But if you read enough other papers you find that there are multiple ways to trigger many of these processes and some don't involve drugs. All I have are mere hunches of the relative benefits of each thing I'm doing. But in combination the results keep exceeding my ever greater expectations. And I keep discovering new things to add to my regimen.

I've been sharing it in the other thread titled "After decades of decline I'm making rapid gains". I need to follow up with another post there as in the past couple weeks I've added new elements and tweaked some previous ones and had a significant upturn in my rate of recovery. And I'm no where near through yet as I have yet to introduce any factors that involve prescription medication.

At the beginning of May I could barely walk 50 feet without falling and it was awkward and painful even when I didn't fall. Last night I walked 1.085 miles in 41 minutes 42 seconds and I felt pretty good. The rate I've been able to increase speed and distance has been increasing. And I'm gaining confidence that the gains will continue to multiply for a long time to come.

quote:

Originally posted by Bob Heitzman:
You may have noticed that the Washington Post's moral compass has been broken for a while. That said, the WP article was pretty clear on the stolen property issue.

This thread should be deleted IMO, I don't see that it has any value to KD folks.

Bob, you are completely wrong in several different levels.

First, if you would refer to the NY Times article which doesn't agree with you, instead of the Washington Post article which does, you'd realize there are many aspects to this issue. The title of the NY Times article is "Should All Research Be Free?" and it explores that angle.

The fact is, people like us with SBMA are in vital need of access to these articles. Consider for a moment that the professors almost never get paid for writing them, then the queston is, who is making the money? Answer: the publishers only. As a private person, I can't afford to pay for several multi-thousand dollar subscriptions to get access. In my area, even the small colleges can't afford it. Only the largest research universities and pharmaceutical companies can afford it, and they don't welcome guest users.

Further consider that much of the research is paid for by government grants, which means your tax dollars at work, and you'll see that the unethical thing is not gaining access, but rather denying access to those who need the information.

quote:

Originally posted by Bob Heitzman:

quote:

I am not endorsing the use of this website.

Perhaps true, but you are aiding and abetting the theft of work product (the journal articles.) I suggest you remove the links to access the stolen property.

Let YOUR conscience be the guide.

Bob, this is not a product like a manufactured item. It is scientific information that is easy to copy and can be shared with thousands of users at no additional cost.

What's more, much of the research is paid for by government funds or grants that come from your tax dollars. The unethical thing is hiding this information from the public, not reading the information.

Sorry Todd and Dan - theft is theft regardless of what you would like to happen. Downloading stuff other people have stolen is illegal as well. Sorry to make you feel bad about your illegal behavior. Your desires will not be a defense if you are caught.

I agree the system should change, but it hasn't so far.

Academics probably should change first as the research itself is probably funded with public money. All future gov't funding should demand the results are placed in the public domain before/as they are published via journals.

Privately funded research can do what it wants - even private funding of academic research (a bit gray, maybe force release after a time period since most academic institutions are publicly funded in some way.)

At a minimum I'd like to see the journals go digital and charge a reasonable fee for the papers after exposing enough info to see if the paper is really useful. The do provide a valuable curating role to bring the best work to the fore. My guess is there is a huge number of papers that never make it to the journals, probably for good reason.

I'd guess the barriers to entry are very high for new competition to the established journals.

Try Google Scholar as a legit on-line source. At a minimum you should be able to get abstracts. I'd guess full articles will be available when they are in the public domain.

This looks up Todd's alley, search (923 hits for SBMA) with Since 2016 selected:
Rocchi, Anna, et al. "Glycolytic-to-oxidative fiber-type switch and mTOR signaling activation are early-onset features of SBMA muscle modified by high-fat diet." Acta neuropathologica (2016): 1-18. link

Bob, thanks for the link to that paper! It's new and I had not seen it yet. I've only skimmed it so far but it appears to reinforce some of my hunches and after a more thorough reading should give ideas to better tweak my approach.

Bob, after a somewhat more thorough reading of the paper it looks like I may have been deriving more benefit from the reduction in carbohydrates than from the reduction in calories.

I think it has been beneficial to lose weight but it might be harmful to continue much longer. I'm down to 155 from 173 and was planning to continue losing a pound a week to roughly 130 and then very slowly continue to lose weight until my pinchable body fat was gone. But now I think 130 might be going too far. Tentatively I think I will stop at 145 until I see something that makes me feel safe going lower.

I believe autophagy may be enhanced while losing weight but there is more than one way to skin a cat which I'll discuss in my next post.

wow, good give and take
when I subscribe to a research provider it is expected that information found will be shared and discussed within what ever closed group I belong to with credit given to the source. Subscription services only benefit from new customers who have heard of the links. So when I take a university course, I have access to all of the publications available to the university and I am free to discuss their content with anyone who may aid in my studies, such as this closed group (and others) NIH has a policy that public money (US) spent in research publications is in the public domain and freely accessible.
Many research publishers skirt this issue by only publishing abstracts freely and NIH does not take the time to follow-up as the research is often freely available to students and professional organizations.
If you always cite your sources, you cannot be prosecuted for republishing information which has been previously published, however , you may find your privilege to access un published material denied if you have not followed the rules of your original access, or have just lifted chunks of someone else's research without giving credit. Subscription services that cannot provide anything but previously published research or do not have advanced search capabilities lose customers and authors fast.
In many cases as Todd has alluded to, organizations such as NIH have used their seemingly transparent research guidelines to in fact limit the information available to the public by refusing to include research not funded by them in their database. This requires foreign companies to beg for NIH funding in order to have their research made more widely available but comes at the cost of NIH patents on funded research.
Todd is also right that there are many legitimate studies of diseases (including KD) done in other countries which do not see the light of day in the US, especially it seems if the NIH has chosen to tackle the problem from a different angle.
While there is no cure Bob, the rest of the world has been working on a new definition of what SBMA is (and has been) and yes this definition is slowly leaking out in America as new discoveries are made by foreign researchers (or their students) now adding American Universities to their CV and bringing along fresh approaches.
It is a touchy subject which is unlikely to go away as long as drug companies and publishers clearing houses wield the economic clout. Gifting monies for research does not always mean that money will be used to benefit those suffering the disease so much as to maintain the health of the research institute.
The US does not have the reporting structure or screening tools in place to validate trials with a large number of subjects but still attempts to restrict (or does not facilitate) research from abroad.
A good example of this is Clinical Trials in Spinal and Bulbar Muscular Atrophy-Past, Present, and Future. first epublished in Nov 2015, it is still by subscription only US$39.95 but all of its references are listed and cross referenced and all but one of them free access if you go to the author or institution. When you do access the complete text, you find that it only lists 9 trials. All of those support anti androgen treatment as their basis (but not in their conclusions) and must be accessed separately. Further, the entire paper is only a few paragraphs long (less the free citations) and can easily be pieced together from the press releases and abstract. Does anyone outside of the US believe that there has only been 9 SBMA studies in the last two decades. No. The word study being the difference. Effective treatment has many barriers that are incompatible with the Trial protocol.
Do we as sufferers have the right to the latest research? Yes and no.
At the 210th ENMC International Workshop: Research and clinical management of patients with spinal and bulbar muscular atrophy, 27–29 March, 2015, Naarden, The Netherlands, there were three patients and a family member who were able to attend and provide information and interact with scientists. If you were there you would know just about everything up to Jan. 2015
Otherwise, buy the article..October 2015Volume 25, Issue 10, Pages 802–812 Neuromuscular Disorders.
If you can get your doctor to read it, and propose one of the treatments listed, they would have to tell you why; but if you don't know and he/she doesn't bother then you are SOL
Better yet, get some organization that has a vested interest in KD research to buy a copy and share it with its members or maybe even make enrollment in a data sharing network a condition of Grant dispersal.