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What is the MP future?
 Moderated by: Dr Trevor Marshall  

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Over-Heated in PHX
Member in Phase 2


Joined: Sun Oct 22nd, 2006
Location: Arizona USA
Posts: 93
Status:  Online
 Posted: Sat Aug 16th, 2008 11:40

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:)
Dr Trevor Marshall wrote: No, the currently held concept of toxins is not well-founded in science. What is thought to be "detoxification" is just changing around the body's enzymes a little so the patient gets palliation. I am more interested in understanding the key pathways, such as the NuclearFactor-kappaB mediated cytokine pathway, and stopping the cytokines from being released in the first place.
 


 
Wow!  Unfortunately I only understand some of the more complicated science at a very limited level, but this sounds like yet more relief for subjects/MP patients as such discovery will further limit those cytokine cascades?!?  This is wonderful!  I hope when some of my relatives decide in future years that this will be their best option,:):), that they will find it so much easier to cope (with work/etc).

I am astonished by the growth of I have seen here on the MP studycite just in the approximate 2 years I have been reading and participating. Prior to discovering the MP, I felt so absolutely hopeless day upon day, finding absolutely no real help available in the hands of modern medicine.  I felt my future was a total loss waiting to happen.  Now, I still have my moments while going around an IP bend, but when it lifts.. I know I am getting well and I am filled with hope.  Not only for myself, but for the future of mankind.  What greater gift I can't imagine.

As for myself, I have found that my ability to communicate effectively about the value of the MP grows with my first-hand experience and allows me to open the minds of many who have never heard yet word one about the MP until I started to explain.  I wasn't capable to do this in the early stages.  If people were disparaging or "polite", I'd just offer the webaddress, and then, move on.  Now, I'm very able to convince others by my own answers to their questions, I can see they are thirsty to know more.  I feel as people continue to recover and spread the word, there will just be a tidal wave, as in, "tides will turn"  and The Science will take hold.

Then, I visit the MP site, and I see such proof in the progress of those who are in the 3+ year category - doing so much! For instance, Amy and Paul now with their own websites featuring the MP and globetrotting to all the conferences!!  Just small beginnings existed two years ago in this respect.  So much growth and accomplishment so far!    I am constantly reassured by those who have blazed this trail, and eager to see each new development, recovery :), or discovery!  

Each contribution, each step, no matter what the size, is a victory, and a sign of what is to come.

Frankly, I can't wait each day to check on the sites and see if something new has evolved while I was laying around with my immunopatholgy going full force!  Seeing all that's been done, makes me feel like a bum!:( I know though, each recovering case is living proof,:D and still a contribution, for now.  We need to keep in mind, there's time yet.  Who said it?  "TTT.. Things Take Time"...  I found this here at the MP:


Put up in a place where it's easy to see
The cryptic admonishment "TTT."
When you feel how depressingly slowly you climb,
It's well to remember that
 Things Take Time.
    -- Piet Hein


 

As Paul mentioned above, (an excellent post/statement I must say!):
In an ideal world, we would count on Trevor to talk to the journalists, to speak with fellow researchers, to explain all the nuances of the MP. Let's be honest: the guy is obscenely productive, but this is not sustainable. All of us have to contribute to success of this movement. Without being too dramatic, people's lives hang in the balance.

Those of you who are interested in how movements gain power should read Nicholas Lemman's latest essay in the New Yorker. Citing the thinking of a long gone political theorist by the name of Arthur Fisher Bentley, Lemman writes, "All politics and all government are the result of the activities of groups."


Thanks for the link to that essay, Paul, and,if I may paraphrase, it will be,  the ongoing work of the recovering cohort to help push this program ahead.  Now, don't you youngsters who have the vision and leadership to "change the world"  go  off and turn into yuppies! ;) (ugg, Nothing  has ever disappointed me more!) You are doing the most valuable work there is!:):)


Thanks for reading, I just wanted to express my appreciation for all the incredible endeavors of this team and focus, for a moment, on all the progress that has been seen thus far.

 Still, :Pver-Heated in PHX..just one of the vast, and forever grateful, cohort.




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Dr Trevor Marshall
Research Team


Joined: Sat Jul 10th, 2004
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 Posted: Sat Aug 16th, 2008 12:54

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findinganswers wrote: a proteolytic enzyme that doesn't hinder the immune response might help.
Enzymes are ubiquitous beasties. Each performs many tasks, as proteins are so much alike, and it is not possible for a proteolytic enzyme to break down an individual protein without affecting many other proteins.

If you read up about the PXR receptor (the Pregnane Xenobiotic Receptor) for example, you will find it responds to big molecules (Rifampin) as well as smaller molecules (steroids). It is at the heart of the Vitamin D metabolism, yet it also is apparently responsible for dealing with bile acids, and a host of other Xenobiotics.

The one thing I have learnt from dealing with individual proteins and receptors is the sheer complexity of the human body, and how dominant is the law of unintended consequences. Homo sapiens works as the result of an intricate tapestry of interactions, the complexity of which Science is only now beginning to comprehend. It is tough to intervene in any of the pathways of that tapestry without unintended consequences, a fact to which any drug designer will attest:)
 

geirf
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Joined: Mon Nov 17th, 2008
Location: Ulvik, Norway
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 Posted: Sun Dec 21st, 2008 19:46

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Fascinating indeed,

do you tell us that grey / white hair  is or can be a Th1 disease ,

at least prematurely ...

I have thought  that grey hair could be an autoimmune reaction against melanocytes producing color to the hair... ?

 



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Geir Flatabø
Liopluridon
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Joined: Fri May 9th, 2008
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 Posted: Tue Dec 23rd, 2008 09:56

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I don't know for sure however I am 52, have white hair and diagnosed with sarcoid 5 years ago. My hair started slowly getting white at about age 19. But I still have a full head of it :)



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eClaire
Member in Phase 2


Joined: Mon Sep 25th, 2006
Location: Virginia USA
Posts: 580
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 Posted: Fri Dec 26th, 2008 23:09

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I must have missed how this topic turned to hair color.  However, not long ago I read that being is significantly grey by 30 is correlated to later thyroid disease.  Sounds like Th1 to me.  Claire



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NickBowler
Member in Phase 3


Joined: Thu Dec 21st, 2006
Location: Stirling, United Kingdom
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 Posted: Wed Jan 7th, 2009 12:54

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I thought this was an excellent New Year's message - we all have a part to play in in getting the message out there, and this is saying that it really does make a difference even if just improving your own health on the MP!

http://www.newscientist.com/article/mg20126881.600-how-your-friends-friends-can-affect-your-mood.html?full=true



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Sarcoirodis CIDP, MP start 11/07, NoIRs, 02/08 25D-8, Ph3 since 07/08|
Joyful
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Joined: Sat Jun 9th, 2007
Location: USA
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 Posted: Thu Jan 8th, 2009 04:42

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Hi Nick,

Thanks for that great article link... very interesting!

Amy discussed the alternative hypothesis for obesity in her article here:
     Bacteria implicated in obesity.



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