Sunday, May 1, 2011

9 Administrivia: FAQ updated

The Camp Other FAQ was updated recently with a few questions and answers.

More administrivia is scheduled to be reported later today if all goes to plan.

9 comments:

  1. Congratulations, I think (grin), on your debut at the Daily Kos.

    I do have one comment, after I say that your faq's were interesting and tells us a bit more about you.

    The suggestions for people to read Tom Grier and Wild Condor's personal stories on the link you provided have always been favorites of mine.

    The problem I have with W.C.'s story is that anyone who clicks on her web site, listed at the bottom will see two sponsors on her site that do not, in my opinion, follow the precepts of everything I've read here on your site about evidence or science.

    One is for Nutramedix and the other is for Public Health Alert (W.C. has been a writer for them occasionally).

    ReplyDelete
  2. Hey cave76,

    Thanks for the congratulations. We'll see how it goes. I'm looking forward to seeing people's comments and I'm enjoying reading other people's posts over there right now. You might want to check it out some time, and at least see what's going on.

    Her personal story and how she wasted money on useless treatment is important to share. And yet I don't support those sponsors either and can see them as part of the problem with promoting treatments which have not been studied or supported by research. Can you recommend other stories to link to which are free of such advertising?

    It is problematic and representational of what is going on in the Lyme community: No one wants to be taken advantage of by people pushing products on them, and at the same time, people are looking for something else to try when they've blown through everything else. More research for reliable and effective treatment is definitely needed here.

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  3. ****Can you recommend other stories to link to which are free of such advertising? ****

    I've tried to come up with such stories off and on through the day. I've read many (hundreds or more) and then there is mine too. (grin)

    How about Jordan Fisher?
    http://www.facebook.com/note.php?note_id=68321963548

    His 'story' there is a bit 'heavy' on thanks to UOS and Turn the Corner (so there IS some advertising) but the bones of it are there.

    Amy Tan. Her story is widely known, of course. Her story is found here:
    http://www.lymeneteurope.org/forum/viewtopic.php?f=10&t=1412

    But there are so many people's stories that I've read over the years---- no advertising but plenty of descriptive narrative, enough to break your heart and make a person raging mad!

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  4. After mulling and mulling this over-----I realize that for years I've been slightly disturbed that the rich or the famous get the most play as 'poster person' for Lyme. Before anyone gets their panties in a twist---- I understand the reasons why and I don't disagree ---- BUT
    I want to say that my heroes are the hundreds/thousands of just plain ol' folks who endure---endure some more and continue to endure but are never known.

    There are often news media pieces by a home town paper that give their stories. Over in a day as soon as the next edition comes out. But their suffering and the negative impact on their lives aren't over in a day.

    I want to bring these people up for everyone's attention.
    I want to let people know that the people who are given Courage Awards or some such are not your average Lymie! They're often rich, rich and famous, famous or people who have donated to foundations that present yearly 'galas' or 'events'.

    I want to applaud the poor, very sick and financially ruined people for enduring. NOT a Courage Awards recipient.

    ReplyDelete
  5. cave76,

    I think having the money to access treatment earlier is critical. It increases the odds of recovery, and leads to better long term outcomes. This is one of a number of complaints I have about the existing health care system: early preventative care is not universal. I think in terms of infectious disease it should be - that's a public health issue.

    Those who have had struggle to get care, those who have had to choose between food and rent versus medication are in the worst situation possible. And many of us are on the edge of that - if we haven't already gone over.

    I think that all of us suffer, whether we are on treatment or not. All of us going through this are living it, and a movie often does better to show the passage of time than an article in a newspaper... but once the screen goes dark, then what? Other people go home. We can't leave.

    I think that we all deserve more recognition for the struggles we face on a daily basis (if not minute to minute at times) and that none of us are average human beings - we are stronger than average to have made it this far.

    I applaud the poor, very sick, and financially ruined people suffering with Lyme disease - and applaud the loved ones and friends doing their best to support them.

    What can we do to give them more recognition? What can we do to give this tickborne disease complex more recognition? I imagine we can do more. I'm past that, though. We need to move from recognition to acknowledgment and action.

    If I were richer than I am, I would start my own research facility. I don't want an award for it telling me I'm courageous for starting one if offered one. I just want my researchers to learn more about tickborne illnesses and find better treatment for all of us - rich, poor, and everything inbetween.

    ReplyDelete
  6. cave76,

    Regarding posting links to Tom's and WC's stories in my FAQ, I was specifically picking up stories that contained experiences with alternative unproven treatments that had not worked and cost the patients a lot of money.

    I appreciate alternative medicine when it works - then it's simply 'medicine' - and at the very least expect it to be safe and not too expensive.

    In the case of Tom's and WC's stories, they reported on how specific treatments were not worth it, and what they decided to try instead. Which is the kind of reporting I'm looking to see more from patients - along with some rationale as to how they concluded what to do next.

    So many people will try anything in a desperate move to relieve their pain. I understand this, after having been to the ER with severe pain and having long nights of pain where sleep just wasn't to be had.

    But usually if I talked to my LLMD, we'd find something that would take the edge off pain at the very least - that and working with some body workers and heat or hydrotherapy has helped some of it for me (and sounds less expensive and not so questionable as treatments Tom and WC mentioned).

    ReplyDelete
  7. *****If I were richer than I am, I would start my own research facility*****

    Who would you hire, assuming you wouldn't work alone in the laboratory?

    What journals would print your finding?

    How would you deflect the almost certain refutations by the IDSA on your research?

    What media sources would you use to print your findings?

    (Yeah, all devils advocate questions)

    ReplyDelete
  8. cave76,

    All good questions.

    I'd start with looking at a list of people who are already doing research on Borrelia burgdorferi pathogenesis and who know a lot about different reservoir hosts and strains. I'd hire molecular microbiologists and immunologists. I'd hire from the US, and I'd find some researchers from eastern Europe, maybe, and I'd also bring in some young new grads and postdocs to learn as they go along.

    Barthold, David Younger's clinical neuroborreliosis program and staff, Ben Luft, for a start - maybe some of these guys who did research on bacteria evading antibiotics...I'd also have students of Preac-Mursic who would be interested. Not going to go with the more controversial figures like Mikovits and Margulis - not unless they produce research of their own in a particular direction.

    This is off the top of my head... I'd have to give it more thought. Fun to answer, though.

    What journals would print the team's findings? I'd assume whoever is printing their findings now. All of those which I've listed have had no trouble being published for the work they've been doing - why should that change? Perhaps the question you want to consider asking is why certain studies under the auspices of ILADS haven't been published in the same journals... that's a good question, and one which many have raised.

    How would I deflect the refutations by the IDSA? I'd challenge other research teams in the US and abroad to use the same methods, materials, and process the team did and replicate results. Make statements to the press about how other teams should be able to find the same result. I'd also have the team re-run the experiment, maybe adding an additional step - or say, pushing out the length of time a host animal was chronically infected before treating and have longer follow up retests in a larger population.

    I'd probably ask that more experiments be done on larger mammals than mice, because as Barthold has pointed out, mice really aren't a good study for neuroborreliosis because they don't have as much collagenous tissue around their brains, which is what Bb likes. We need better neuroborreliosis hosts and modeling... thus a big part of why I'd throw in Younger's team.

    Media sources? The AAAS, ASM web sites to start... and popular science interpretations such as Science Daily and Discover. And if it was big enough a result, I'd think everyone would be picking it up, anyway. Otherwise, it's back to the drawing board - as it often is in science.

    To be honest, the more I read research, the more I can see that there already is useful research out there on Borrelia's pathogenesis. One of the big stalling points for the patient community and medical community has been that not all this research is getting out there and pushed to the top of the stack where its acknowledgment and application could help more patients.

    Also, designing more research to see if Borrelia burgdorferi does what other bacteria does can be useful - folks in the patient community keep poking at the "cyst" forms of Lyme, but what if that's unnecessary for their long-term survival or only one aspect of it? What if what's happening is the few spirochetes left behind after treatment are metabolically slowed down to the point they appear dead but are not (like my most recent Friday Four article mentioned) dead?

    So there are things to consider and look at here in terms of research... maybe it's already something someone is looking at right now, but we don't know it yet. Not everything hits the university microbio and molecular research pages - and at least not right away.

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  9. I might add here that someone has to know where to look for some of the research which may be important to the patient community. Some of it isn't immediately "obvious" because the publications are written in a language many/most people will not understand and students of molecular biology and genetics are most likely to understand. This is not intended as a slight to anyone in the community doing research - it's a sincere note of acknowledgment that in order to understand it, anyone reading it would have to achieve a certain knowledge base before following it...

    It's not just a matter of looking up definitions in Wikipedia - doing that is incredibly useful for learning certain basic concepts and knowledge.

    Knowing how things all fit together and interact is something where you have to study and acquire facts under your belt before really digging into the bulk of the research.

    With understanding Borrelia burgdorferi, a multidisciplinary background is best - something most people do not possess as it takes years to master any one subject. So teams usually have to be responsible for figuring out the relevance (and irrelevance) of certain findings. Sometimes - a lot of the time - a finding adds to what we know but doesn't point the way to better treatment. Not yet, anyway.

    ReplyDelete

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