The Awful Disease Washington Forgot

urbantravels

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http://whchronicle.com/2010/09/the-awful-disease-washington-forgot/

In the end, as with so much else, the fight against disease leads to Washington. There are big diseases with big lobbies, like AIDS, Alzheimers, cancer, diabetes and heart. Their millions of sufferers have associations and lobbies to push for federal research money and to shape its expenditure. Most have their celebrity backers, like Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and Mary Tyler Moore for diabetes.

Big lobbies mean big federal dollars, the attention of the National Institutes of Health in Bethesda, Md., and the Centers for Disease Control in Atlanta. If the disease is the kind for which a single or series of silver bullets can produce a cure, Big Pharma comes in with big funding, in the hope that it can develop a lucrative line of medicines, patentable for long-term profits.

Yet there is a vast archipelago of diseases as cruel in their impact, horrible to bear and crying out for research that is not sporadic, underfunded or, through ignorance, misdirected.

One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government, abetted by other governments, of choosing this name over the older and more commanding name, myalgic encephalomyelitis.

CFS is not about a name game. It is about debilitation lasting decades, essentially from inception to death. It is about years of lost living, terrible joint pain and total collapse, as the immune system more or less shuts down. It is like some great constricting snake that denies its victims the final convulsion.
 

urbantravels

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It was rather good. But I'm not sure why the punchline was ozone therapy, of all things. You'd think the author would have noticed the screaming for clinical trials in the patient community - clinical trials of real treatments.
 

Dreambirdie

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It was rather good. But I'm not sure why the punchline was ozone therapy, of all things. You'd think the author would have noticed the screaming for clinical trials in the patient community - clinical trials of real treatments.
Yes, the ozone therapy part was very weird, but the rest was good. I'd like to see something like it on the nightly news.
 

leela

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It's another one of those articles making GREAT points, much-needed ones, and then, as if some second person had a hand in it, adds a completely disjointed sentence or two as if out of nowhere. Still, it is a powerful message and I love that it points to the politics and the responsibility of govt agencies to act now.
 

urbantravels

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I would suggest some people here could post comments to the article. It's a link I'd like to share more widely, but that last graf about ozone therapy just makes the whole thing weird.
 

ixchelkali

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"It is like some great constricting snake that denies its victims the final convulsion."
I love this imagery.

Even though the ozone thing is kinda odd, I think it's a really good article; just the sort of thing we need. I hope lots of people will respond with thanks and positive remarks. Show media editors that we aren't cranky when the articles are informed and supportive.



 

Kati

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I would strongly encourage prospective scientists NOT TO study the validity of OZONE therapy but find medical mainstream treatment for the ME/cfs population. After all AIDS patients do not get cured with OZONE therapy.

Drugs would be really good- you know? Ampligen, ART, and whatever they deem to have potential to get us back on our feet.

Kati
 

leela

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ME is not AIDS

I would strongly encourage prospective scientists NOT TO study the validity of OZONE therapy but find medical mainstream treatment for the ME/cfs population. After all AIDS patients do not get cured with OZONE therapy.

Drugs would be really good- you know? Ampligen, ART, and whatever they deem to have potential to get us back on our feet.
I would just like to add that mainstream or complementary, I would be most overjoyed to use whatever therapy worked effectively without dreadful side-effects.
Ozone therapy actually has some wonderful applications, just perhaps not here; though that it seems to have worked for the person in the article is wonderful!!

Let's not throw the baby out with the bath water, though, and decide that only mainstream medicine can help us. Personally I am guessing it's going to be a combo of anti-virals to control the actual litlle buggers, and complementary practices to encourage our systems to recreate balance after years of compensating for chronic infection.

Ampligen and many of the ART drugs apparently have some serious side effects or damaging effects to the system, for many people, as yet. And while HIV and XMRV belong to the same overarching family of human retrovirus that exert an effect on the immune system, and they share some similarities in their replication process, AIDS and ME/CFS are very different diseases. In my view this is an important distinction.

Comparing treatment effectiveness between HIV and XMRV makes sense--comparing the same for AIDS and ME/CFS won't serve us at all.

But welcome to the board! May we all find the magic that will get us back on our feet, dancing, laughing, and waving buh-bye to life in Couchland!!
:victory: