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What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 9, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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    Merry, beaker, Tammy and 2 others like this.
  2. Mark

    Mark Acting CEO

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    Please note, this thread is meant to discuss the topic of ‘What the Obama/Biden victory means for the ME/CFS community’. Please refrain from posting political material and/or opinions that are not related to the above topic.

    You are free to constructively criticize the content being presented. All opinions related to the content are welcome. If you feel the Obama/Biden victory will have an entirely negative effect related to the ME/CFS community, please post why you think so. If you feel it will have a positive effect, please post why you think so. This will likely promote an interesting debate and provide more information to those who are unsure.

    Simply ‘dumping’ on Obama/Biden, the Republican Party or any other political party in general, or making sweeping generalizations related to political affiliation, will add nothing to the debate. Posts of this nature will be considered off-topic and will be removed.

    Thank you.
  3. Sasha

    Sasha Fine, thank you

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    Welcome back, Cort!

    You're right that it's important to the whole world what the US govt spends on ME research because all the other budgets are tiny by comparison.

    I think we need to challenge the poor level of funding given to ME, given that the disease severity profile is similar to that of MS but affects many more people. Even if budgets were to be cut, if we got our fair share, we'd have shedloads compared to what we're getting.

    Dr Joan Grobstein, in her evidence for CFSAC, said:

    "MS is estimated to affect approximately 400,000 Americans and receives $121 million per year from NIH for research. ME and CFS are estimated to affect at least 1,000,000 Americans. It therefore seems reasonable to allocate $302 million annually to ME and CFS research."

    http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

    I'd like to see a campaign for ME funding called 'Help us find our missing $302 million'. Imagine that in a newspaper ad, or on banners in front of the NIH building.
  4. Sasha

    Sasha Fine, thank you

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    I realise I'm a Brit so don't have a US perspective on this but I'd love to see this thread discussing how we can make the most of Obama having been re-elected. Does this present us with new opportunities for research funding? What should we be doing to get it?
  5. penny

    penny Senior Member

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    To me (with only my ME sufferer hat on) the result of this election means that I may in the not so distant future have the option of not having to pour every ounce of my energy and functionality into working JUST so I can keep my insurance coverage. Maybe, someday, I can stop pushing, stop risking making myself more and more sick every day for fear of what will happen if I loose my insurance coverage and fall into one of our giant societal cracks. It means that if I am unable to continue to work, my husband and I may be able to purchase private insurance despite my 'pre-existing' condition.

    This, for me, is HUGE.
  6. Bob

    Bob

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    Interesting article thanks, Cort.

    Could anyone clarify the above quote, please?

    Is it a reference to the income levels that qualify for subsidies, or the amount of subsidies available to each family? (I have no idea how much health care costs in the US.)
  7. Mark

    Mark Acting CEO

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    That discussion would be very much on topic, Sasha, and an important and relevant subject to discuss. It's general party political discussion, that goes beyond the topic of policies that directly affect us as ME/CFS patients, that we want to avoid here.
  8. Dreambirdie

    Dreambirdie work in progress

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    I am so relieved and so very happy that Obama won. He is such a compassionate man, with such deep understanding of the suffering of others. That came through loud and clear in his willingness to hear out the plight of those who suffer with ME/CFS, and his promise to elevate ME/CFS’s priority at the NIH. No other president has even acknowledged those of us with this disease. Obama is the first and ONLY president to do so, and I am deeply grateful for that.
    xchocoholic, Wayne, Sing and 2 others like this.
  9. Sasha

    Sasha Fine, thank you

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    I can understand why, reading posts on PR from the UK all these years, people could get the impression that we in the UK get no help from healthcare. It's not the case, though. ME patients are in a freakish position here, just like we are in any country. When it comes to other health conditions, I'd say we get good, even great help from healthcare, and it's free at point of use. There are local variations, of course, and the quality of care varies according to the quality of the doctor you're dealing with, but I think that would be true of any system.

    I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Not at all. Many of us are doing very well.
  11. Dreambirdie

    Dreambirdie work in progress

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    There's another very important point to be made about the Obama win, which is the undeniable fact that the Republicans would have made drastic cuts to social programs, like SSI and SSDI, which so many ill people depend on.

    I know several people who are very ill with ME, and who have NO family support, NO rich spouses to fall back on, NO insurance. They rely on their disability money in order to get by. Without it, they would end up destitute and homeless. I am relieved that we have a president who will not put these programs on the chopping block.
    searcher, xchocoholic, beaker and 6 others like this.
  12. Jenny

    Jenny Senior Member

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    Yes, my family have had fantastic care from the NHS. My husband had a liver transplant 4 years ago at Kings College Hospital and now he's on a trial of a Hep C drug. The doctors and nurses were amazingly skilled and supportive. My mother also had very good end of life care. All free of course.

    Jenny
    Sasha and penny like this.
  13. dannybex

    dannybex Senior Member

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    Those who have either great insurance, and/or sufficient funds, yes.
    xchocoholic, Wayne, SOC and 5 others like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I think we need to look at the level of healthcare available to ME patients in terms of what is available to all ME patients, regardless of whether you are able to seek out and pay for care from the few excellent doctors in this field. Seeking out good protocols has often been blocked by the inability to qualify for health insurance in the US.

    Judging by the standard of what is available to all patients, it would seem that most healthcare systems in the world have failed us (maybe excepting Japan? Any members here from Japan?)

    I think that the promise of insurance for all ME patients--regardless of the "pre-existing condition" clause--is a good step forward. And also, as Penny says....

    Not having to work when it is making you more ill--just to be able to get health insurance--will give many patients the chance to rest and look for some treatment strategies that were not available to them before. Let's just hope that there will be more research funded (as has been tentatively promised) to discover some new approaches, and that disability criteria will be reviewed to include more of us.:confused:

    Sushi
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  15. wdb

    wdb Admin

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    I don't know this is strictly true, sure money may reduce stress etc but reality is there are currently no treatments for ME/CFS with any substantial evidence base supporting them regardless of cost, and there are still plenty wealthy but ill ME sufferers.
    nanonug likes this.
  16. dannybex

    dannybex Senior Member

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    I agree and disagree. Certainly there are a lot of wealthy people with ME/CFS that are just as sick and sometimes sicker than those with virtually no funds. I don't have the answers of course, but I have known and do know of a few who spent tens of thousands (if not more) seeing the 'famous' (or infamous) CFS "expert", and got a lot worse. That particular expert doesn't agree for example, that methylation problems have been found in practically every patient tested (according to Rich VanK and Dr. Neil Nathan). Not sure if checking genetics and addressing the defects would've made a difference for those patients, but just saying that some of the docs who charge so much can sometimes tend to have a 'god' complex, and not be open to others input.

    Suffice to say that it's definitely a very complicated 'syndrome', and I think if one has more options, then not only is stress lowered, then the chance of improving is increased as well. I haven't been able to see a decent doctor in over a year.

    And in no way do I mean anything against Sallysblossom in any way. It's great to know she's doing well, and what has helped her. Perhaps if the so-called 'experts' spoke with her doctors, they might just learn something.

    ??? :)

    p.s. And believe me, money would definitely reduce stress big time.
    xchocoholic, Wayne and penny like this.
  17. Dreambirdie

    Dreambirdie work in progress

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    wdb--Yes, money is not a guarantee of better health for those with ME/CFS. But when you do not have it, and have to struggle to make ends meet, and can't afford healthy food and necessary supplements, then you will definitely be worse off.

    The stress of not having access to the help you need can be very detrimental to one's health.
    Wayne, ahimsa, camas and 2 others like this.
  18. Dainty

    Dainty Senior Member

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    The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

    It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more - either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

    I've read forums where massage therapists are telling each other how to get away with charging insurance companies a fortune. So insurance companies are forced to pay out easily 3 times the reasonable amount. They have to make up that difference somehow. They do it by charging more in other areas, just so they don't have to close shop.

    It's a warped system, but forcing them to "help" us more will only warp the system further, from what I can see.

    Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder....how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

    That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

    Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

    If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

    What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

    I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.
    monobear, alice and nanonug like this.
  19. Valentijn

    Valentijn Activity Level: 3

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    Health insurance companies aren't making losses, so they aren't going to "lose more money". They might earn less money, but that's not necessarily a bad thing.

    Obamacare requires that they spend at least 80% of premiums on medical care for their customers. So they can't arbitrarily jack up costs in order to make big profits.

    Also, insurance costs are/were quite a bit higher in the US than in other countries with systems similar to what the US is moving toward. If costs are increasing, the problem probably isn't with the system in general.
    dannybex, Tammy and penny like this.
  20. Dainty

    Dainty Senior Member

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    Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

    I strongly suspect the latter.

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