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ngmwcg
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confused Inquiry on Neuromuscular Diseases other than Dystrophy

I noticed the description of Neuromuscular disease on the description page to include the following phrase and would like to question whether it is entirely accurate:
These chronic diseases lead to a decrease in muscle strength, causing serious disabilities in motor functions (moving, breathing etc.).


While I agree this is true of Muscular Dystrophy, which is among the most debilitating spectrum of Neuromuscular diseases, I believe there are neuromuscular diseases that are characterized by excessive involuntary muscle movement as opposed to atrophic or dystrophic muscle activity.

Take Parkinsons or Dystonia for instance; diseases that are characterized by spasticity or in some cases hypertonacity. Botulin toxin (Botox) can be used to temporarily induce paralysis or in more successful cases help permanently break the cycle of spasm, but it is not a sure fire cure nor does it attack the root problems directly.

In any case, I was looking for some validation from the scientific community as to whether a tweak to the description page is warranted to address these other neuromuscular diseases and am curious whether this research project is expected to be of benefit neuromuscular diseases characterized by spasticity in addition to those characterized by dystrophy?

Thanks
[Jan 31, 2011 12:16:23 AM]   Link   Report threatening or abusive post: please login first  Go to top 
Mysteron347
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

I believe that you are probably right in what you say.

I'm sure that the scientists' time would be better spent in their research than trying to put together a lawyer-proof definition. Don't you get tired as I do, of the requirement to replace simple phrases with a complex all-inclusive yet perpetually debated and re-debated definition - beloved of our evil triumvirate, the lawyers, judiciary and politicians?

You can't refer to any group of people nowadays without having to mention each individual self-declared-victim-of-discrimination subgroup. You can't refer to a power company without some eager interjector debating the difference between power and energy. You can't even have "jam" (in the British sense) without some definition-freak insisting on calling it "conserve."

Even the humble traditional mince pie, which hasn't contained meat for over 600 years, now must be described as "FRUIT mince pie" so as not to "confuse" people.

This phenomenon, I'm sure, is what the Python crew was pointing out in "Life of Brian" when Reg's endless ineffectual resolutions were interrupted time and again by amendments to make the meaning more and more precise - reducing minor points to great masses of waffle.

Personally, I believe it's better to get the point across simply than to distract from it with the exceptions.
[Jan 31, 2011 4:03:59 PM]   Link   Report threatening or abusive post: please login first  Go to top 
ngmwcg
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Well Mysteron347, I have to agree with you to some degree on how annoying it has gotten to have to word everything perfectly to account for all contingencies. But with that said, there is a lot of opportunistic fraud out there these days, so at least when it comes to writing some things, take regulations for instance, one has be be as thorough as possible.

Now getting back to my post, the real motivation for asking the question was that I'm curious whether this project will support research into some of these other neuromuscular conditions or whether it is limited to solely to conditions of muscle loss. It's a question I am generally interested in knowing the answer to.
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[Edit 1 times, last edit by ngmwcg at Jan 31, 2011 7:56:47 PM]
[Jan 31, 2011 7:55:14 PM]   Link   Report threatening or abusive post: please login first  Go to top 
sk..
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

While it is important that scientists are clear and well understood, there is little point dissecting a research project intro.

This sentence says a lot, "Despite advances in therapeutic techniques, there is currently no curative treatment available for persons affected by neuromuscular diseases". It's why we are here.
[Jan 31, 2011 11:37:37 PM]   Link   Report threatening or abusive post: please login first  Go to top 
Mysteron347
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Hmm - I believe that the kings of the scamsters - the lawyers, judiciary and politicians - are in sore need of being put back in their place as the servants of society, not its masters. To that end, this deliberate campaign of obfuscation that they insist upon should be disallowed.

As for the science, I'd suggest that any scientist worthy of his lab-coat would be curious about any unexpected results. The response to "that would cause the opposite of what I'm seeking" would more likely be "can I make it act in reverse" than "so I'll disregard it." In any case, a worthy scientist would publish such matters as an observation.

Even Albert himself wasn't immune to excessive focus. AIUI, all WCG results must be published into the public domain, so if the scientists miss an application of a result then it should be available to others with a different emphasis.
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sk..
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Totally agree that it's very important to publish what was researched, what was not and what resulted in erroneous results, in order to enable other researchers to carry out missed research or further research.
[Feb 1, 2011 1:50:33 AM]   Link   Report threatening or abusive post: please login first  Go to top 
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Hi to all,

the HCMD project considers 2200 proteins and a bit more than 200 of them are known to be involved in muscular dystrophy. all remaining 2000 proteins exist in the cells but are unknown to interact (yet) with the 200 and/or to be involved in muscular dystrophy. The project will end up to point out all possible interactions of the 2200 proteins, even those that do not have something to do with MD. Hopefully the results will be of biological and medical interest to many researchers and will help the understanding of several forms of neuromuscular diseases.

With best regards,

Alessandra
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

rose Thank you, Alessandra Carbone!

That is very interesting to learn.

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nasher
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Thank you, Alessandra

it is good to know the scientists like to speek to us about the projects and keep us informed
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[Feb 3, 2011 5:41:46 PM]   Link   Report threatening or abusive post: please login first  Go to top 
ngmwcg
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Re: Inquiry on Neuromuscular Diseases other than Dystrophy

Thank you Alessandra, that was the insight I was looking for!

-NGM
[Feb 4, 2011 6:36:09 AM]   Link   Report threatening or abusive post: please login first  Go to top 
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