posted
I think the lyme disease awareness needs a new marketing campaign that clearly communicates the current problem with lyme disease.
Lyme Disease: Reopen The Investigation
The words may need to be worked on, but the central point is that essentially the case has been closed on lyme disease, when we still need to things 1. The test. 2. The Cure.
Unlike other diseases we are advocating for something very different that people don't understand. We are dealing with a challenge that starts with re-opening the case on lyme disease so to speak. There is enough evidence to suggest the case on lyme disease was close too soon and people don't realize that that is the essense of our strugle.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Yes. This is a huge issue/challenge.
How do we raise awareness?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I suggest that when introducing the subject you stick to the point that the investigation was closed prematurely and the test and cure don't work in all circumstances. It is a disease of closed investigation, which we need re-opened.
You could then explain what the disease does to people if they need an idea.
Use "Lyme Disease: Re-Open the Investigation"
Posts: 136 | From arlington, VA | Registered: Jun 2010
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Camp Other
Unregistered
posted
Here are my thoughts, and they don't sit easy with me. momlyme is right - this is a huge issue and challenge.
I think that there has been plenty of advocacy geared towards prevention - which is great, since none of us would wish Lyme disease on their worst enemy - and plenty of advocacy towards explaining the human cost of Lyme disease in terms of suffering, financial hardship, loss of careers, and loss of a life.
That has all been put out there, and it has been really great in some cases and in other cases - unfortunately - has made the Lyme patient community a target (re Chicago Tribune's article on chronic Lyme) for doubt and ridicule.
It is a sad but unfortunate truth that those who are intent on focusing on their "expert opinion" seem to not explain their basis for why their opinion about Lyme disease is, in fact, what it is. (At least, not directly to Lyme disease patients - many of whom won't listen at this point - but oh, they do in journals and elsewhere, as I've been finding out - more on this later.)
And one Philip Baker of the ALDF said this past summer that he will put his opinion against chronic Lyme to rest if the following can be proved:
1) Develop a precise definition of what is meant by ``chronic Lyme disease'' so that it can be distinguished unequivocally from other medical conditions with similar symptoms.
2) Provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy.
3) Demonstrate, from the results of published, peer reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease.
I think that it shouldn't take that much to come up with a definition for #1. Seriously, the definition the IDSA came up with for chronic Lyme disease was laughably broad and not suitable for scientific terminology. They also came up with Post Lyme Disease Syndrome, which does have a definition, but it doesn't map to what the Lyme patient community considers chronic Lyme. Somehow, we will have to come up with a suitable definition that applies and that shouldn't be too hard.
The second one is a little bit harder. I think this is one of the reasons that researchers initiated that NIH study on xenodiagnosis - possibly in hopes of settling the issue by proving Koch's postulates. CALDA has been asking for a boycott of the xenodiagnosis study, though, and I would have wanted more information about the reasoning behind this decision.
At any rate, you need to be aware that Wormser and Schwartz have already spent some time tearing apart Hodzic/Barthold et al's research on the mouse infectivity xenodiagnosis test here: http://cmr.asm.org/cgi/content/full/22/3/387
Haven't yet seen comments on the Finnish research. When I do, I'll be sure to share.
But if there's this level of criticism aimed at this research and we've been holding it up as evidence - then more work needs to be done in this area.
One has to be able to systematically refute and argue against the content in the above paper, even if the process is tedious and somewhat distasteful. Science is what turns this sort of thing around. Refutation could be either evidence already directly held in terms of the existing study - or it can be evidence from reproducing or improving upon the study.
The third is probably going to be the most difficult, but I suggest looking at trials for treating RA with antibiotics long-term and at least see how they hold up? This is off the top of my head - I'd need to research these myself.
I'd also be looking at actually trying to find more effective antibiotic treatments - including maybe seeing if a beta-lactamase inhibitor combined with antibiotics would help... probably more for early stages as it's been used for relapsing fever. And I keep wondering about how patients can get more reliable early diagnosis - early diagnosis *is* a sticking point - the fact is even Steere has said some patients are initially asymptomatic and later develop late stage Lyme. By then, it's a much harder a problem to fix.
Anyway, I didn't say it was easy, but I do suspect that presenting the proof to the world that fulfills these three items may in fact get them all to STFU. More so than my story of suffering... because even if my suffering is acknowledged, it's apparently not actionable. Something else has to be presented to tip the balance - and that's probably science.
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