Old 04-01-2011, 04:38 PM #1 (permalink)
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Default Why so little research interest from forum users?

Dr. Googlitta posted the following quoted material on another thread in response to a suggestion made by me to him that explaining things in layman's terms was a better approach to getting his points across to the members of this forum than the scientific jargon he usually uses to make his informative points. I made that suggestion in response to a post in which Dr. G expressed the opinion that he was "surprised that fiber types and VEGF doesn't ring a bell in an ALS crowd."

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Originally Posted by Dr. Googlittle View Post
We should find a different thread for discussing this.But in stark contrast to proposals that people that knows more should lower themselves to the level who know less, I am actually in arguing that people who know less should learn more and preferably surpass those who currently are regarded as experts regarding neurolgical diseases like ALS. The basis for my argument is that the SOD1 mouse was discovered about 20 years ago but there are still no effective treatments. I would therefore encourage more people to join me and to do what I have done, and preferably surpass me, rather than the opposite.

It's actually very easy, just read 5-10 scientific papers per day during a couple of years and check up every word you don't understand through g o o g l e (s c h o l a r) or W i k i p e d i a. Before you kow it, it will become much clearer. In this particular case the search term; +VEGF +"amyotrophic lateral sclerosis" may be a starting point, or alternatively +"amyotrophic lateral sclerosis" +fast-twitch

My current stats for full length scientific papers in PDF-format that I've read read is; 1*527 Files, 103 Folders. With all due respect, if more ordinary people did what I have done and established an effective way to collaborate in a Web forum format, there would not have to be another 20 years before an effective treatment to ALS is defined.
The question in the title of this post, in my opinion, encapsulates the issue that Dr. G raised on the other thread and something that has been pointed out by others in the past who had an interest in this sort of thing. I have my own ideas about responses to some of the issues Dr. G has raised but I'll reserve them for now and let others offer their own responses.
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Old 04-01-2011, 07:35 PM #2 (permalink)
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Default Re: Why so little research interest from forum users?

""It's actually very easy, just read 5-10 scientific papers per day during a couple of years"

Dr Googlittle has to be on drugs, first off how does the ordinary Joe get access to these 5-10 scientific papers per day and secondly who's got a couple of years? Many PALS don't live a couple of years and I'm sure that most can think of better ways to spend their remaining days than trying to understand medical journals. This isn't a chronic disease, maybe Googlittle has the time and energy but I don't.
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Old 04-02-2011, 11:20 AM #3 (permalink)
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Default Re: Why so little research interest from forum users?

I applaud anyone trying to solve the mysteries of als. When first diagnosed my instincts were to read everything about als and attempt to figure it out. I quickly found that although I'm very versed in physics and chemistry, without any biology or genetics background I didn't really appreciate much of what I read. I guess I gave up, but anyone who thinks they may develop new insight, have at it.

I'll follow the thread with interest. Elsewise I'll be watching Matt Dillon kill people on Gunsmoke, playing chess against the computer, surfing this and other sites, watching my beloved Yankees, watching "B" quality Lifetime movies, and making my wife miserable meeting all my needs.
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Old 04-02-2011, 11:57 AM #4 (permalink)
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Default Re: Why so little research interest from forum users?

I agree with Barry and rmstudier. I have done my best to read the basic literature on ALS and to verse myself with what is known about this disease. That being said I am not a Scientist and when the jargon becomes too technical it is over my head. I have plenty I want to do with my time and researching 5 - 10 scientific studies a day is not on my agenda. I will let the PHD's and MD's do the research and identify a cause and hopefully come up with a cure and be more then happy to read their findings translated into laymen terms.
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Old 04-03-2011, 01:00 PM #5 (permalink)
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Default Re: Why so little research interest from forum users?

Interesting topic. I think for me the difference is between practical, everyday knowledge of the disease that I can use to implement positive changes for my husband. I am a teacher and have credentials to teach History and am a librarian. If there is one thing I know how to do it is research. I can research the medical jargon until I am blue in the face. However, that doesn't do me any good when it comes to caring for my husband and providing what is best for him everyday.

In my opinion, a lot of the medical trials that I have seen relative to ALS have been by drug companies and others simply hoping that their product may help and they can market it to a different group. I have not been impressed with the studies that I have researched so far.

Just my two cents.
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Old 04-03-2011, 01:52 PM #6 (permalink)
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Default Re: Why so little research interest from forum users?

Meg I think you're going to find as you do more research that it is every bit as frustrating for the researchers as it is for the patients and caregivers. Ask Dr North. He used to do MND research before switching to patient care. We've talked about this on the forum before... if you're a cancer researcher you have a huge patient base to look at, and can fairly readily subdivide by type, location, etc. Lump all ALS patients in the country together and you have, by research standards, a small base. There are no apparent progression trends. There are few constants. Then you divide by limb onset, bulbar onset, with cognitive involvement or FTD, without cognitive involvement at all... and you have terribly small subsets to try to do research on.

And while I tend to shy away from overstating financial goals for the medical companies (I don't have the same feeling that they are evil incarnate that some of my friends do) it is an economic fact that the potential customer base just isn't that large.

And as far as involvement from PALS and CALS is concerned... eachn make their own decisions but basically the day to day realities of living with the disease can make one shy away from adding one more thing to complicate life. I know Glen was offered a trial that would have required weekly trips to San Francisco, and daily care from me. He really didn't want it, and his FTD would have made compliance difficult at best so we declined the offer.

So... I guess my answer is while your question sounds very basic and down to earth I feel the realities of the disease make the answer much more complicated.
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Old 04-08-2011, 04:47 AM #7 (permalink)
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Default Re: Why so little research interest from forum users?

Data can be easily found but you have a first work to do to get information out of those data. I think we all can do that with enough dedication and it is useful for PALS and CALS because it helps us understand the disease and better adjust to it.

The next step is to digest that information into a proper knowledge. On such difficult matter, this is a lifetime work. If this is not your everyday work, the work you have been trained to do almost since you were in college, you can not compete.

It is like building a tower. You put in place the foundations, then one floor after an other. If you do not have the proper foundations, you won’t be able to raise your tower more than 3 or 4 floors for example. This is not just putting one stone after an other. You are at the 5th floor, you realise you did not understood properly the 4th, you destroy your 5th and 4th floors and you rebuild. At the 6th floor, you realise you did not understood something in the foundations, you will destroy your entire tower and rebuild… To raise a 10 floors tower does not takes twice the time to raise a 5 floors tower but maybe 10 or 50 (just to illustrate)…

With enough time, dedication, intelligence, passion, you will build something, maybe something useful (If that makes you tick, go for it), but if your goal is to
Quote:
Originally Posted by Dr. Googlittle View Post
surpass those who currently are regarded as experts regarding neurolgical diseases like ALS
You really are kidding yourself. Those people have dedicated their lives studying diseases like ALS. However, it is not because you can not be the best that you should not try to improve.

With all the data (not information) we are able to get from Internet, we have a tendency to think that we all can be experts in everything. This is dangerously wrong: there is no shortcut to knowledge.
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Old 04-08-2011, 09:08 AM #8 (permalink)
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Default Re: Why so little research interest from forum users?

Good analogy.
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Old 04-21-2011, 09:38 AM #9 (permalink)
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Default Re: Why so little research interest from forum users?

My Mom died with ALS about 4 years ago, she had symptoms in November, ALS was diagnosed one month later by December and died 5 months later.

My uncle ( moms brother ) died with ALS two years earlier about 15 months after he was diagnosed.

We don't know if this is family related, but I guess there is a chance.

My siblings and I are very interested in any research.

Thank you
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Old 04-28-2011, 01:21 AM #10 (permalink)
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Default Re: Why so little research interest from forum users?

I'm not sure, even if there was time, that reading the research data--assuming you understood it--would help find a 'cure' as he seems to believe. The majority of those with any disease are not the ones that research.

Every member of this forum could read every study (hypothetically) but that isn't going to make Emory say "Oh Look-all those well-read ALS folks on that forum have figured out the cure, let's implement it."

Where CALS, PALS and those of us in limbo and browsing CAN help is in the area of awareness. Just my 2 cents.

DrG isn't realizing that he can read til he's blue in the face--it's not going to make him understand how to actually DO what he's reading was done--even if he does figure out the terms.

My issue with the trials I've researched is the short time frame allowed of symptoms for people to participate. It seems that many of you with ALS/MND had symptoms long before diagnosis. How many really ARE under 2 years of onset of symptoms? I'd venture to say not that many--and in the US 5k people per year are diagnosed--elsewhere outside the forums are being diagnosed any quicker.

Does anyone wonder if the absurd length of time it takes to make a diagnosis might be hindering the availability of 'viable' candidates for trials?

I read something earlier on muscle biopsy (because my neuro wants to do one) and it said something about a specific finding in a muscle biopsy that is ONLY found in MND. Doesn't it make sense to ALS diagnosis quicker so people CAN partake of promising trials earlier rather than later?

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Old 04-28-2011, 10:43 AM #11 (permalink)
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Post Re: Why so little research interest from forum users?

I wanted to offer a few thoughts on the discussions in this thread . . .

Once upon a time, not so very long ago, one could easily keep up with all the mediation that developed on the ALS disorder . . . this is no longer true - and I feel it is actually impossible for one person to read every article that is published each day that at least mentions ALS. Often these days though, an article is actually only mentioning ALS and is not really contributing to any understanding of the disease process(es) - so a type of screening might be valuable to separate news that helps individuals deal with ALS in general from news that actually makes a contribution to the research that needs to be done. Ethically, I think at least in principle, people who suffer from a particular disease should not have to do the work to find and implement its cure . . . however, almost everyone who knows anything about ALS does so because they are or are close to someone who has had or has ALS. The number of altruistic entries into this field is not very large - the field itself is not very large and although there is more now there has not been much money in it. Even researchers need money to live. Another concern is that often research findings make contributions to fields that are not the ones in which the research was done thus, one may be making a great mistake if they go 'ALS only.' Much of the ALS press is 'hard' to read - even ALS researchers probably feel this way.

Many of the research papers are available through the internet, maybe almost all of them but they can require a subscription fee for access. Some of these fees are very expensive.

It appears widely found that individuals with ALS seem to be significantly less interested in participating in medical trials than expected.

Raw data on ALS is not actually easy to access: there are confidentiality and many other concerns. People are much less likely to have the skills that are needed to properly and meaningfully process raw data.

[mirage]: That does not sound right, ALS usually requires at least a year to complete the medical review process BECAUSE ALS is not really a diagnosis . . . when every other possibility is ruled out for a particular patient and it still 'looks' like ALS then a 'diagnosis' could be issued. Your concern that there may be a familial connection in your ALS encounters can be addressed by researchers who are interested in familial ALS. Some of these researchers work in the neighborhood of the Massachusetts ALSA office. You might e-mail or call them as I am sure they can help you get connected to interested researchers. There are probably others, you might also try the main ALSA office although I don't know where that is now. The ALS Association Massachusetts Chapter: The ALS Association Massachusetts Chapter

Reading the research papers may help one understand the characteristics of the disease(s) but may not help at all in finding a cure. Innovation is needed on that point . . . certainly, reading the papers may advance one's ability to be innovative.

People concerned about ALS may be well advised build relationships with well known expert organizations.
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Old 04-28-2011, 02:49 PM #12 (permalink)
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Default Re: Why so little research interest from forum users?

Hi, My father donated his body for ALS research. It is now running in the family. I would use stem cell research. It can hurt. I am hoping my dad helped in some weird way. Please find a cure. To many young and old dying before they have lived. I am interested in it.
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Old 05-06-2011, 01:58 PM #13 (permalink)
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Default Re: ALS Awareness Month

From what I have read and heard from my own participation in clinical trials, often not enough patients are willing (or able) to participate. This is one of the reasons some of the studies have been going on for years. For example, the clinical study for the drug, Ceftrixone, has shown tremendous promise, but the data cannot be effectively analyzed until they have 600 participants. Right now they are at about 400, but the study began in 2006. I am currently participating in this study and have no idea whether I'm receiving the drug or the placebo. What I do know is that the scientists learn just as much from the patients on the placebo as they do from those on the drug. This can only speed things up, allowing them to figure out if this drug works. If it does, it will.be available to everyone. My point is, if able, we all have a responsibility to help find a cure by participating in the research. Please consider participation.
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Old 05-27-2011, 12:25 PM #14 (permalink)
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Default Re: Why so little research interest from forum users?

HI, I am a writer for MDA's ALS Magazine working on a story about the use of social media in ALS research. I am interested in contacting someone who participated in the PLM lithium trial. Please e-mail me at mdavidson@mdausa.org if you are willing to answer a few questions about your experience. Thanks much, Miriam Davidson
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Old 06-02-2011, 04:16 PM #15 (permalink)
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Default Re: Why so little research interest from forum users?

I dont know if anyone is even actively watching this thread anymore but I find it curious that 2 diffrent posts say that people with ALS are not willing to particioate in trials. The people on this site seem more than eager to do whatever it takes to find a cure. Many are not eligible because of the 2 year cut or some other requirment of the tial. I recently applied for the dex trail but can not pass the breathing requirments, as yet (rib injury) Because I live over 4 hours from any major city I was not eligible for the ceftixone trail. Maybe requirements need to be loosened instead of looking for the perfect set of trial subjects.? Are reserchers looking for slam dunk evedence? There didnt seem to be with rulezole, for example. My nuero said evidence showed it may extend life by 3 months in some patients. lol
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