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

[ankaa]

The cost of drugs won't come down and you will still be required to pay. Trump does not give two teeny tiny rat shits about the state of our health. He cares about increasing profits for businesses, in this case the drug makers. Big Pharma may not be on board right now because the current gravy train is sweet, but they will get in line and figure out a new way to take their cut, rest assured.

What good does it do for something like Ampligen to be FDA approved if insurance companies don't have to pay unless efficacy is somehow proven? Ditto for the cytokine blockers? How does that process work any differently than a Phase III trial, really?

Maybe people on Medicare and Medicaid will be able to have access...but most people with ME/CFS are not on Medicare or Medicaid.

I'm all for reforms to the FDA, namely, the drug companies shouldn't be funding their budgets. But Trump is as clueless here as everywhere else unfortunately.


https://www.forbes.com/sites/matthe...-age-of-miracles-dont-bet-on-it/#5be4e0c63883

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

 

[ankaa]

Trump lies like he breathes. He can't stop and people eat it up with a spoon. It's mind boggling. He is a master manipulator, for sure.

There is such a thing as a verifiable fact. Sometimes your opinions just make you wrong. Which is fine, to each their own, until those opinions cause the suffering of others.

People are already coming out saying that they didn't really believe Trump would dismantle the ACA...and voted against their own interests. I feel really bad for people that fell for his lies because they are the ones that will suffer in the end.

I was not a HC supporter but there is no question that her position on issues that matter to the disabled and elderly would have been far more beneficial.

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

 

[ankaa]

That's pretty funny. We could start with the President himself who led the nasty, racist birther conspiracy movement, then move on down the list of his cronies at Breitbart and InfoWars who trashed Obama with nonstop lies. And then there's the entire GOP who decided to obstruct everything he tried to do whether they supported it or not...

Anyway, I don't trust someone with regulations who declares, randomly, that for every new regulation two have to be repealed. There's no evidence he cares about sick people -- or, for that matter, anyone but himself. Such a nightmare.

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"... http://www.cnn.com/2016/06/28/politics/gallery/dissing-obama/

 

[ankaa]

Like or dislike Trump, the FDA policy he promotes can only be good for ME/CFS. We take so many drugs off-label anyway, what difference does FDA approval (usually meaningless with regard to safety, and highly political) really matter? Access to more possible treatments can only be better, imho, including the first one to come to mind, namely Ampligen.

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..

 

[Adelle]

In answer to the question posed in this thread, I'd ask just what did the past eight years do for ME/CFS, research, cost of insurance, or drugs? Looking at the new secretary of HHS, Dr. Price, and what he's always said about the state of health care and his suggestions to improve the system, I'm very optimistic that indeed this administration will be better for ME/CFS patients.

I would consider the IOM report in 2015 a huge step forward for ME/CFS.

 

[Adelle]

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).

 

[Kell]

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?

 

[ankaa]

"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."

http://www.the-scientist.com/?artic...title/Trump-s-Budget-May-Cut-Science-Funding/


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.

 

[Audrey Brimson]

1) I think it is quite obvious that something needs to change with the way drugs are approved. But like everything else, the devil is in the details. I doubt it will be an across the board deregulation free for all. Many people thought disaster would befall the airline industry when it was deregulated, but that didn't happen. We can hope.

2) In December Congress also passed the 21st Century Cures Act that provides 4.8 billion in new NIH funding and 500 million for the FDA and "eases the development and approval of experimental treatments and reforms federal policy on mental health care."

I did not see Sarah Hughes mentioned during last night's speech, but this article says she was a guest of honor of "U.S. Representative Pete Olson, (R-TX 22) who dedicated his vote for the 21st Century Cures Act to her." She has a chronic illness called Systemic Juvenile Idiopathic Arthritis. She is receiving adult stem cell therapy. http://www.khou.com/news/local-woma...mps-first-joint-address-to-congress/414545171

3) And then there is Megan Crowley who I did see at the speech. She has an extremely rare disease called Pompe disease. https://www.washingtonpost.com/poli...ghlighted-to-congress/?utm_term=.503923ad7a3c

To me, this all looks promising.

1) I think it is quite obvious that something needs to change with the way drugs are approved. But like everything else, the devil is in the details. I doubt it will be an across the board deregulation free for all. Many people thought disaster would befall the airline industry when it was deregulated, but that didn't happen. We can hope.

2) In December Congress also passed the 21st Century Cures Act that provides 4.8 billion in new NIH funding and 500 million for the FDA and "eases the development and approval of experimental treatments and reforms federal policy on mental health care."

I did not see Sarah Hughes mentioned during last night's speech, but this article says she was a guest of honor of "U.S. Representative Pete Olson, (R-TX 22) who dedicated his vote for the 21st Century Cures Act to her." She has a chronic illness called Systemic Juvenile Idiopathic Arthritis. She is receiving adult stem cell therapy. http://www.khou.com/news/local-woma...mps-first-joint-address-to-congress/414545171

3) And then there is Megan Crowley who I did see at the speech. She has an extremely rare disease called Pompe disease. https://www.washingtonpost.com/poli...ghlighted-to-congress/?utm_term=.503923ad7a3c

To me, this all looks promising.

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.

 

[weyland]

@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?

[bimg=no-lightbox]https://pbs.twimg.com/media/C5r_cEVU8AABOU2.jpg[/bimg]

 

[Tina]

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.

 

[Remy]

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

This is truly horrifying.

 

[Remy]

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

He arrived on the pundit scene with a splash: He announced way back in the summer of 2015 that Trump was going to win the Republican nomination.

He came to this knowledge not via fancy polling models or sophisticated political science analyses, but just by watching the election unfold through what he calls his “Master Persuader lens.”

Adams is a trained hypnotist, and as such he can’t help but recognize the mesmeric brilliance of nearly everything that Trump says and does.

Here he is after Trump’s call for a ban on Muslims: “By the 2D filter, where people use logic and reason to make decisions, Trump is dead and done. … But in the 3D world of emotion, where Trump exclusively plays, he has set the world up for the most clever persuasion you will ever see.”

We mortals supposed that the election would play out as a contest of ideas. Adams, like Trump, recognized that it would instead play out at the limbic level of primal furies and genital anxieties.

Cont at the link

 

[Paw]

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

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!

 

[Marilyn Lemmon]

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.

 

[Paw]

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."

 

[Ladyliegh]

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 ....

 

[Strike me lucky]

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.

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.

 

[J.A.]

Wasnt there video footage of obama talking to a cfser at a conference a few yrs back and was going to have his people look into it?? Still waiting.

If people dont just look at cnn for news, trump was mentioning quicker drug approvals and also increase market competition so people could get cheaper medication overseas covered by insurance. Wants more opportunities to shop around for better prices instead of limiting peoples choices.

@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??

 

[Remy]

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.



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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? http://nymag.com/thecut/2016/10/all-the-women-accusing-trump-of-rape-sexual-assault.html

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.