Could Donald Trump Be Good For Chronic Fatigue Syndrome and Fibromyalgia?

Discussion in 'General Discussion' started by Cort, Mar 1, 2017.


Donald Trumps Plans to Deregulate the FDA would be ? for ME/CFS and/or FM

  1. Very good

    16 vote(s)
  2. Somewhat good

    5 vote(s)
  3. Neutral or don't know

    5 vote(s)
  4. Somewhat bad

    0 vote(s)
  5. Very bad

    8 vote(s)
  1. ankaa

    ankaa Well-Known Member

    lol... every. damn. word.... geez, this presidenting thing is hard! see my post
    Remy likes this.
  2. ankaa

    ankaa Well-Known Member

    google "james grissom hillary clinton cancer" ... he's a starving artist writer who was stricken w cancer while HRC was his senator.. She personally helped him navigate the healthcare morass & ensured that he would get treatment in spite of an inability to pay... The story went viral last August, and the GOP promptly pegged him as a PAID HRC supporter (ie, a "plant")! (he was not; he was a bernie supporter).. There has been an ongoing investigation into his supposed association w HRC by the GOP; they froze his bank accounts and he had to hire lawyers (nearly $100k, and counting.. paid for by a rich friend) to defend himself against the GOP investigation..... He has won a big victory b/c they have NO evidence for these false accusations... He has to go to D.C. this month to wrap it up, and he will likely write a book (naming names) about it afterwards... truly evil ppl. follow him on fb to read the blow by blow re how these evil, awful ppl persecuted him for simply telling his story...

    When I read that story last august, it didn't change my vote, but it gave me conviction. If you think these ppl care, you are delusional
    CJB, Remy and Paw like this.
  3. ankaa

    ankaa Well-Known Member

    lol.. seriously!.... 286k google hits for the term "birtherism" but it never happened. Remember Jan Brewer sticking her finger in his face?? Oh, wait, this picture doesn't count b/c cnn is "fake news"...
  4. ankaa

    ankaa Well-Known Member

    only if you can afford to pay cash.... this doesn't jive w how insurance companies work at all... How will they approve payment for a drug if they don't have proof that it works for the diagnosis?? If the patient is injured by the drug, then the insurance company will have to pay even more money... Nope, insurance cos. will not be into this at all..
  5. Adelle

    Adelle Member

    I would consider the IOM report in 2015 a huge step forward for ME/CFS.
    Lissa likes this.
  6. Adelle

    Adelle Member

    How complicated a question! When I first heard him say reducing FDA regulations in his speech, I got so excited! And then confused. The FDA is there for a reason. But yes, they are far from perfect. As someone else stated, they are underfunded and understaffed. Many things that they deem safe are sometimes not, and many things that could be potentially life-saving are too slow to be approved or cannot get the funds to continue the approval process. And then throw in insurance companies.
    Selfishly, I support this proposal as I have been sick too long. But in just our community alone, not even mentioning others, I'm afraid of desperate people trying things that would be expensive, not work, make people worse, or worse. I think this deregulation might work if people have a good, well-informed doctor (which some do not though, myself included).
  7. Kell

    Kell New Member

    You have an entire administration that does not believe in science, research or facts. You have a president that wants to cut nondiscretionary spending across the board for more military. You have an alpha male sociopathic president who doesn't care about people and makes fun of those with disabilities. So, seriously?
    CJB, Lissa, weyland and 4 others like this.
  8. ankaa

    ankaa Well-Known Member

    "The National Institutes of Health (NIH), the National Science Foundation (NSF), and other federal science funding agencies may need to brace for cuts, judging by President Donald Trump’s 2018 budget request. Trump’s budgetary plan, released yesterday (February 27), proposes a 10.5 percent cut for nondefense discretionary funding, a category that includes the budgets of NIH, NSF, parts of the Environmental Protection Agency (EPA) and the Department of Energy’s Office of Science."

    Tens of billions of dollars are being added to the overall budget, and $54 billion is being added to the defense budget (we already spend more than the next 8 countries combined), but they're STILL cutting NIH funding.... So, congratulations.. You'll have all the drugs you want when the FDA gets gutted and no actual data to inform which ones might work. You'll have to pay cash b/c insurance won't have data to determine which ones to cover.
    weyland and Paw like this.
  9. I agree with Diane, I react to so many of the drugs that have been passed, I would like to see accurate reporting of adverse reactions that are already occuring. So much is ignored or under-reported. It is rather like a lucky dip, you are lucky if there are no adverse reactions.
    Dropping stage 3 but with mandatory reporting might work to everyone's advantage.
    diane likes this.
  10. weyland

    weyland Well-Known Member

    @Remy, @ankaa and others hit the main points. The open goal of every right wing administration is to cut tax/government spending on social welfare in order to benefit the rich, and cut regulations in order to maximize profit for major corporations, owned by the aforementioned rich. We, the sick and disabled, hopelessly reliant on benefits and protections provided by SSDI, medicare, ACA, etc. are right in the crosshairs of these people.

    Do you think these health insurance CEOs are smiling because they just can't wait to help out all us poor sick patients, or are they smiling because Trump is going to do everything he can to cut the regulations that are losing them money and putting their multi million dollar salaries at risk, the same regulations that protect all of us who are disabled and massive consumers of health care?

    CJB, Lissa, ankaa and 3 others like this.
  11. Tina

    Tina Well-Known Member

    Cort made his feelings for Trump very clear in his original post, but he works hard to be diplomatic and put a lot of thought into arguing why what Trump says he wants to do could be beneficial. He also gave some of the arguments against as well.

    Instead of looking for the positive, this whole thread has turned into a complete hatefest of Trump, Republicans and conservatism in general. How sad.

    This site is my support group. It is one of my very few havens; but, maybe I need to step away for a bit.
  12. Remy

    Remy Administrator

    This is truly horrifying.
    Lissa and ankaa like this.
  13. Remy

    Remy Administrator

    This was a fantastic Slate article that really helped me understand how Trump's mind works.

    No One Understands Donald Trump Like the Horny Narcissist Who Created Dilbert

  14. Paw

    Paw Well-Known Member

    I can sympathize with your feelings; however some of us firmly believe the country allowed a proven despicable human being to take the reins, so our feelings are quite strong as well. I could list a hundred things the man has already said and done that make him unfit for the office.

    Re drugs, an issue that might affect many of us even more than the FDA's approval process: Jeff Sessions has made it clear he wants to crack down on state marijuana laws. There is hope, however, since Sessions' corruption may lead to his undoing shortly. But who knows what racist, ignorant bully will take his place? These are some dark times.

    A lot of mail-order drugs come from Russia. Some of us take advantage of that. But that doesn't mean we should want our country to turn into a fascist kleptocracy too!
    Lissa and ankaa like this.
  15. Marilyn Lemmon

    Marilyn Lemmon Moderator

    I'm a retired cancer researcher, and have seen Phase I trials up close. Be careful what you wish for. Phase I trials are quite small and the data on toxicity is limited. I have heard first hand stories of people in biotech companies being pressured to list these "adverse events" as not drug related even though they likely are. According to the FDA, there are typically 20-80 patients in a Phase I trial. Even Phase III trials which typically have 1000-3000 patients don't always ferret out all the toxicities and side effects. Do you really want to take a drug with that kind of limited human testing? Drugs have a 15% chance of going from Phase I to eventual FDA approval, which means that even though they look good in preclinical (usually mouse) studies, they often don't work in people. These concerns of course don't apply to off label use of drugs that are well understood because of their use in other diseases.
    CJB, Lissa, Abrin and 1 other person like this.
  16. Paw

    Paw Well-Known Member

    I see Trump has already abandoned his populist pledge to drive down drug prices. After meeting with pharmaceutical execs he declared he was opposed to "price fixing."
  17. Ladyliegh

    Ladyliegh Active Member

    I think we are assured higher prices for drugs that may well cause more harm than benefit. I think a policy of dismantling things before studying the workings, (good & bad) will have disastrous consequences.
    Yes, I would love access to a drug that cures CFS, but, do I want to take a cancer drug that is dangerous for my liver for a year, even though it probably won't work for me?
    (Less effective for long term CFS)
    No, I have enough challenges in my daily life.
    Would I like my pain medicines back on the market? (Darvoset & Tresix) Yes, without the dangerous amount of Tylenol added, which we wouldn't know about without the FDA.
    (Of course they should have told us sooner)
    It is ludicrous to eliminate the protections in place, although modification is certainly needed. I think Trump could care less about the sick & disabled, we will see a steady trend towards secrecy across the board with the dismantling of our government.
    Obama care may suck, but it is the first insurance I have been able to get, since I can't work. Because I broke the same leg twice, no one would cover me... Remember that it also covers previous conditions, which we may well lose ....:sour::bored::grumpy:
  18. Strike me lucky

    Strike me lucky Well-Known Member

    I dont understand how he is labled despicable when the opposition were just as bad if not worse. The best the democrats could come up with was a comment he made behind closed doors 15yrs ago. If he was truly that bad they would have alot more dirt then that.

    Also dems seem to ignore the evil on their own side of politics which i think was worse then saying grab her on the p___y.

    Hillary Clinton is supposedly for womens rights etc bla bla bla. Her evil party put her in the position to run for president.

  19. J.A.

    J.A. Member

    @Strike me lucky, Because of Obama's promise to look into ME/CFS, he had the NIH set aside one million dollars for the Institute of Medicine (IOM) to set up a panel to look into ME/CFS. The IOM's panel on ME/ CFS spent about a year setting criteria for ME/CFS, making recommendations that general practitioners learn enough about it to diagnose it, and for the first time, they determined that ME/CFS is a *disease* and should be taken seriously as such. It spelled out that ME/CFS is not a "mental condition." The IOM recommended that much more money be put into research for our disease and that Centers of Excellence be set up across the U.S. The IOM also reviewed prior research studies & determined that since many were based on the Oxford criteria, they would not be valid studies for ME/CFS (Oxford criteria has such loose & vague criteria that many without ME/CFS met the criteria.) This led to the IOM pamel determining that graded exercise therapy (GET) may be dangerous to true ME/CFS Patients, especially to those who are more ill. Also the AHRQ pulled down it's on-line recommendation of GET for ME/CFS.

    So, Obama did what he said and we did benefit from it. If you get a chance, google IOM ME/CFS. I believe the info from them was available to the public in February of 2015 or maybe a year before.
    Maybe someone else could find it and add a link??
    CJB, Lissa, Ladyliegh and 3 others like this.
  20. Remy

    Remy Administrator

    Sorry you drank the KoolAid!

    HC isn't perfect, by any means, but she was qualified, even if her positions didn't always match my own. She would not have brought shame to the offfice.

    The meme you posted is laughably, demonstrably false.

    And the list of evils Trump has committed is far longer than an offhand comment. How many women stood up to say he had abused them too?

    But the real evil and harm is yet to come. Just yesterday, I comforted a friend whose synagogue had received a bomb threat. The blame for the hatred that people feel free to openly display belongs straight at the feet of Trump. He can rot in hell.
    CJB, Ladyliegh, Paw and 1 other person like this.