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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
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a great opportunity (help!)

Discussion in 'Action Alerts and Advocacy' started by Cort, Aug 10, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    ProPublica Health Survey

    this is obviously a critical time for the future of healthcare in the US. ProPublica (Journalism in the Public Interest) is asking for your experiences with the healthcare system. They state that they'll use these to guide their assessment of whether the healthcare proposals are adequate.

    http://www.propublica.org/special/health-care-survey
     
  2. sarahg

    sarahg Admin Assistant

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    Tomorrow I am being interviewed over the phone by a journalist for propublica news service. We are going to talk about my healthcare "journey" thus far, especially insurance issues and access to care. I'm sort of nervous, it's exciting, but probably not that big of a deal in the grand scheme of things.

    I have some thoughts about what I want to talk about based on how she told me it would go, one important thought I have had is that comparative effectiveness is a useless concept when dealing with any sort of disease where there are no FDA approved treatments, the government remains uninterested in finding or approving any, and there are many conflicting views on treatment. I am also going to talk about how absolutely impossible (due to lack of interest and training) it is to find a doctor knowledgeable about or capable of treating this disease that will take ANY insurance, let alone medicaid.

    Most of what I think we are talking about is my personal insurance situation,and how that impacts my ability to obtain treatment. but I want to be standing ready to say when you are done with this article you need to start doing investigative reporting on ME/CFS and its history with the government and medical system.

    What I need help with from all of you is some really great sources. I want to be able to give her a list of reliable, succinct information that will sum up the situation of this disease. Especially if you can find primary documents or sources. I have some things bookmarked like that, but I want to see what the consensus is here. If I can hand this all over, we may be able to get yet another news organization pulling for us.

    I will ask her tomorrow if it is ok to reprint the emails we have had back and forth if anyone is curious.
     
  3. Kati

    Kati Patient in training

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    SArah, the first thing I have in mind is the NY times- they have done a fabulous work with recent articles. I am not sure if they are competition with your interviewers though. The other ressource would be Hillary Johnson and her book Osler's Web. It's definitly not a reader's digest, but on her website she has an article called The Why, which explains what happened, in about a 20 minute read.
    http://www.oslersweb.com/work1.htm

    I am not totally sure if it's what you have requested but it's my contribution.

    Oh and also one website that I really like, but it's a bit complicated, http://www.ahummingbirdsguide.com/
    Good luck with the interview- this is a fantastic opportunity to get a voice.


    Kati
     
  4. Samuel

    Samuel Bedbound with NO DOCTOR

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    Every once in a while I search for myalgic and fatigue and the like on propublica or indymedia or other, similar sites, and so far there has been no results.

    So you have a great opportunity.

    How about saying, "I'll answer all of your questions, but first, what would you think if I told you about a disease that [striking fact that any investigative reporter will want to know]"?
     
  5. Koan

    Koan Be the change.

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    I'm sure you'll be terrific, Sarah! I have nothing off the top of my head and my brain has shut down for the day.

    You'll be great!

    Go Sarah!
     
  6. markmc20001

    markmc20001 Guest

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    insurance

    Hey Sarah,

    good luck with the intereview.

    Couple of things come to mind when dealing with insurance. First is when one drops out of the work force due to disability, there is no insurance coverage until one is bankrupt I guess. So one's income gets chopped way back by like 35% or more of previous levels, if one has LTD insurance and can get them to pay. Then Cobra is available, but after one's income is reduced, having to pay $600 a month for insruance sucks, after one has been dealt a 35% or more blow to his income already. then my cobra went up 50% after the first year to $920 a month! Kind of an impossible situation after alrady running sick with a greatly reduced income. Hard to deal with after getting ones health flipped upside down, then getting ones finances flipped too.

    Then there is dealing with the LTD companies.....they do all kind of dishonest stuff to try to kick one off. If that reporter wants to talk about LTD, have them get a hold of me....I'll give them a story. I have people beating on my side doors, following me in cars, straight lying in interviews, distorting all kinds of facts from docotrs, loosing paperwork, not making checks on time, it goes on and on.
     
  7. blackbird

    blackbird caged.

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    It's been moving recently. Looks like it may be finished soon.
    New home:

    http://www.hfme.org/
     
  8. sarahg

    sarahg Admin Assistant

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    Mark, this is what I filled out that motivated them to contact me, they may not have anyone yet with LTD insurance info so you should definitly fill it out!

    http://www.propublica.org/special/health-care-survey

    Samuel, That is pretty much my plan exactly! when you get down to it, we should be a dream come true to any investigative reporter!

    Thanks everybody for the well-wishes and sources, keep that info coming!
     
  9. sarahg

    sarahg Admin Assistant

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    These are the sources I have so far. I wil probably add and subtract some before I hand them over, feedback would be great.




    http://www.hhs.gov/advcomcfs/index.html

    Federal HHS advisory committee, the entire meeting can be viewed, there are archived transcripts of all past meetings. (only the last 2 have been taped)

    Look especially at this testimony:

    http://www.hhs.gov/advcomcfs/meetings/presentations/fredfriedberg.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/marlysilverman.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/kennethfriedman.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/stevens1009.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/cfsacmeisel10302009.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/goodwin_1009.pdf
    this is my written testimony that I sent!


    An assessment of CFS science as of last year, reprint from journal “current rhematology reports” http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0801C&L=CO-CURE&P=R3325

    Health reform report to Obama-Biden transition team for the state of Delaware: http://healthreform.gov/communityreports/delaware/delaware_19711.html

    A speech by investigative reporter and patient Hilary Johnson about the history of this disease http://www.oslersweb.com/work1.htm

    Despite all contrary evidence this is how CFS is often portrayed by the media, be sure to skim entire article for context. http://abcnews.go.com/Health/ColdandFluNews/Story?id=7688631&page=8

    News about the study that may change everything http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

    http://www.nytimes.com/2009/10/13/health/13fatigue.html?_r=2

    you have to pay to see the study published in “Science” so I do not have a link to that.
     
  10. margib

    margib Senior Member

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    Thank you for your advocacy, sarahg. Can't wait to hear how it goes. L-O-V-E!
     
  11. misskoji

    misskoji Guest

    Hi

    Not much to add since you've already gotten great advice and input. Plus what you've already prepared with is fabulous. Just wanted to say thank you and good luck. :)
     
  12. sarahg

    sarahg Admin Assistant

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    I had my first of 2 interviews and wanted to let you guys know how it went. I spent 22 minutes on the phone giving as much info as I could cram in. The reporter was really interested and asked questions about a lot of what I said. She said was especially curious to do more research to see how a "comparative effectiveness" plan would affect people with diseases like this. I pointed to the situation in the UK with CFS as comparitive effectiveness gone horribly horribly awry. I have to talk to her again early next week and I am going to wait until after that to send her the above sources...so keep adding to them!!!!

    The neat thing was it turned out that the journalist actually went to high school near where I lived in Maine. Also, she has been following the New York Times coverage of XMRV. We may really get somewhere with this.
     
  13. Samuel

    Samuel Bedbound with NO DOCTOR

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    Great job, Sarah!
     
  14. caledonia

    caledonia

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    LTD and stuff

    Here is a great article from the CFIDS Chronicle explaining how LTD's rip us off. www.cfids.org/cfidslink/2006/ltd.pdf

    I talked to the lawyer who wrote it about my situation when he was doing research for the article. He said that lawmakers think that once UNUM got sued the problem with LTD's was over, but they don't realize it's an industry-wide problem which still exists.

    The way health insurance goes is like markmc20001 was saying. My case has some similarities to his and some differences, but I think it's pretty typical.

    My case is like this: got sick, my work insurance paid for everything I needed until I was "terminated" for being denied for LTD (WTF?). Like I was lying about being sick???... Then my option for insurance was COBRA which is very expensive. I had COBRA for a few months, then my company went bankrupt and went out of business, so there was no longer an insurance group for me to have COBRA from.

    Then I tried to get regular health insurance but nobody would take me. I could have tried for Open Enrollment but by that time, I was too sick, involved in fighting the LTD and SSDI and just gave up. I had no health insurance for 2 years until I got SSDI and Medicare.

    As far as finding a diagnosis and a doctor - I went to a dozen doctors and specialists in my city and couldn't get a diagnosis. I had kept notes about my symptoms and noticed a pattern of feeling worse at work and better at home, so I got a working diagnosis of "sick building syndrome" and was referred to an environmental medicine specialist in another city 4 hours away. He was able to diagnose me with CFS and MCS and is still my good CFS doc.

    Medicare pays for 80% of doctor visits, generally pays for labs, but not always. Of course, my best treatment is naturopathic treatment which is all out of pocket. Since I was denied for LTD, my only income is SSDI which is 30% of my former income. My family pays for the naturopathic treatment, otherwise I would be unable to afford it, and I would be much sicker and less functional than I am now (probably about 10% instead of 20-25%.)
     
  15. markmc20001

    markmc20001 Guest

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    great article

    thanks caledona, excellent article. I heard that there may be a provisionon health insruance reform to do away with the Erisa Law. I hope it happens and will call my congressmen.

    I am getting to the point where I now realize how far away we are from a REAL democracy here in the states. It is a big fasad and the people are manipulated like pawns by cooporations that buy and pay for political outcomes. Absolutely disgusting. Even worse when you are too tired to really do much about it. absolutey maddening.

    I like the one where the insurance tells me to contact them if my status changes. So I tell them I have some vitamins helping me improve a bit and they send out the video crew. Or I have to tell them I am moving, and they swarm my place hoping to video me moving my belongings. These guy are so crooked, it is unbelievable whet they get away with.

    They could care less if you are disabled or not, to them it is a matter of if they can kick you off their payroll regardless of your state of health. It is that simple. They just try and figure out how to build a case and kick people off.

    Sarah,

    I went to that news website you are dealing with. Thanks for doing that and maybe it will do a little good. Any little bit helps thanks.
     
  16. sarahg

    sarahg Admin Assistant

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    Caledonia and Markmc - you should totally fill out their research survey. I don't know if they are covering LTD insurance as part of this series, if they are your imputs would surely be valuable. It may just be health insurance, but I'm not really sure. Sadly, I never even got to a point in my life where I had a real job with disability insurance so I know nothing about it. (and as I apply for social security... all the income they can look at is my part-time college job, I got sick right after I graduated, the work I was ABOUT to do doesn't matter, but I was too old, I think, to count the years my parents worked towards whatever they give me) I know at least 2 other people that got caught in the same "bubble" it's pretty lame.
     
  17. margib

    margib Senior Member

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    this sounds like progress, sarahg!
     
  18. sarahg

    sarahg Admin Assistant

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    Ok I just got almost all the way to the end of typing this and the power went out! so here we go again. I am going to give up if it goes out again...I feel awful.

    So I just finished my second interview. I guess she will call one more time for a brief summary or factchecking or something. I had to answer these rather simple questions while she recorded it to edit down to a 1 minute sound bite for their website...I think I proved myself to have rather obvious neurological problems: it was like pulling teeth... My brain is fried today. Just bad timing, but oh well. I have a nasty head cold and I am sure I sounded awful. but hey, that means I sound sick, right (?) haha.

    So the next thing I have to do is send her like 3 pictures of myself. I don't know what to do about this and I don't have too many photos of myself. There is a fine line maybe between the pictures where I look like and awful very sick person, and pictures where I am dressed up and made up and disguised for some special occasion and look like a pretty very normal person. ( such as my profile picture here, as a maid of honor...you wouldn't know by looking at it that I spent most of the day sitting down, left early and that the bride's mom did the majority of the stuff that "traditionally" would be my job, it was a great day nonetheless) I am trying to find a middle ground.

    When I send in the pictures late today or tomorrow morning I am going to send in my little note with sources to look into, so if there are any more sources or documents anyone would suggest adding for the perusement of investigative journalists, now is the time!!!!
    put them up by the end of the day!
     
  19. sarahg

    sarahg Admin Assistant

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    Ok I am actually not sending that out until tomorrow morning. I will check here before I do but here is the last chance!


    Any good sources, documents, or info that you want put in front of the eyes of an investigative journalist (with no guarantees it will go anywhere, but I've got my fingers crossed and she seems intrigued) now is the time to add to the list! ( I have a rough draft on the first page of this thread)
     
  20. sarahg

    sarahg Admin Assistant

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    I hesitate to do this...but I am about to send them to a journalist so I guess there is no reason to be overly private about it. These are the pictures I am sending for the article. I have to send three and I figured I would send one from when I was healthy- my last semester of college.
    one from when I was very bad off in the first year.
    and one that my mom took today. I have the today one narrowed down to two and haven't made up my mind yet.

    I guess I just have this fear that people will be looking at me and judging me for how sick I am or how valid my complaints are or whatever. Or that I will somehow misrepresent us as a group. I don't know, I feel like they need vetting, in case people will look and say "oh she looks fine" (I can't explain how I could brush this off in person but not brush off the vague notion that strangers I will never meet might think it...maybe the lack of rebuttal) So give me the heads up if I am "off message",
    now we will see how well I can put pictures up here! (may or may not work)
    this is the pre-sick one
     

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