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

[Ladyliegh]

I am shocked to see the degree of excitement & pure anger that Trump inspires.
I remember being really mad when Bush won the second time, not being elected by the People, but electorial...
That is nothing compared to the negative energy that is surrounding Trump. His supporters are even more hateful that his opponents. People are really angry, that scares me...A President should not inspire Hate & Anger, there is no positive that can come from it.

 

[Remy]

You bring up the supposed sex changes of trump but there's been no convictions nothing, probably more fake news again,

Except one of the women he abused I know personally. I know she is not a liar. And she has suffered greatly since coming forward.

You're so out of line here, it's nuts. I don't even recognize the person saying these things! But, the silver lining is that at least you don't get to vote here!

 

[weyland]

I've been commenting on Fox News lately. What I notice more than anything is this demonization of the "dems" or "libs" or whatever. It's clear the one side of the political spectrum sees the other side in almost a caricature. The democrats are portrayed as "dems", "libs", whiney libs.

What's funny is that most of these people don't even know what a real left-winger looks like. Democrats in the US are really more centrist than left. Both parties support the same damaging neoliberal economic policies and interventionalism. The rest (civil rights, social justice issues) are just window dressing. If you spend any time around real left-wing venues, you'll find they have similar disdain for democrats, but for more valid, palatable reasons. There is no left wing party of any consequence in this country. The US government won't even tolerate sharing the same hemisphere with a left-wing government, and will do everything it can to stamp them out.

 

[SueS]

Clinton was a warhawk and Trump is a sociopath and you guys didn't have a chance because your ENTIRE political system is corrupt. But that's okay - everyone will just go on fighting amongst themelves depending on whether the red or the blue is the colour they wear, and being unable to critique their own party because that's not allowed in a climate of political involvement that's so toxic. Divide and conquer tactics.

I, more a socialist than anything but I was seriously gagging at the thought of Clinton being president. But the level of dialogue online before the election was that if you took a stance of criticism against the neoliberalism of the Democrats you must have therefore been a misogynist. It seemed to me that the vast majority of liberal voices online were only interested in the identity politics, shallow end of the pool, and didn't much care for the messy deep yet horridly dry waters of structural politics and systems thinking. Because it's really hard to tweet about that in 140 chars without sending everyone to sleep. Calling people out, however, for misogyny, racism, whatever ...

No one calls everyone out for misanthropy but man, we sure all hate each other's guts these days.

I think Donald Trump fills a vacuum left by the absolute decimation of the left that's happened since the 1980s. The discussions I see online now are much more serious. The leftmhave been kicked in the arse and it ismthe beginning of renewal so that can only be a good thing that comes out of Trumpland.

Kinda like Ampligen being approved finally would be. But who's to say what disasters could come of deregulating the FDA. Revamping would be better, wouldn't it, rather than smashing to bits?

 

[Cort]

Well - there's obviously a huge gulf between the left and the right in this country. I think that's the main issue actually. It's a huge loss for America that we don't have two parties that will work together.

I disagree with Trump on most things, and while I am sometimes appalled by his behavior believe that he really wants to do right by America. I think he's the wrong person for the job but I don't doubt his intentions.

Similarly hatred towards and demonization towards Hillary Clinton is beyond belief! I don't even recognize her in some of things people say about her.

Somehow we've got to find some common ground....

 

[Cort]

This thread did get out of hand. If there are any further replies let's keep them to the subject at hand = would reducing regulations at the FDA be helpful?

 

[Aidan Walsh]

Who is Megan?

 

[Tina]

Who is Megan?

She is a young woman who has a rare disease and was a guest who was mentioned during Trump's speech on Tuesday. I put a different link earlier, but here is a different one. https://www.statnews.com/2017/02/28/trump-address-pompe-rare-disease/

Crowley – whose family story was turned into a Hollywood film starring Harrison Ford – was selected by the Trump administration to highlight its efforts to combat rare diseases. Trump mentioned Megan and her father in his speech, pledging to cut governmental regulations to make it easier to cure diseases such as the one she’s survived.

I guess it was just nice to see a person with a rare disease mentioned on Rare Disease Day. It was highlighting the need to think outside of the way things are currently done.

 

[Aidan Walsh]

She is a young woman who has a rare disease and was a guest who was mentioned during Trump's speech on Tuesday. I put a different link earlier, but here is a different one. https://www.statnews.com/2017/02/28/trump-address-pompe-rare-disease/

Crowley – whose family story was turned into a Hollywood film starring Harrison Ford – was selected by the Trump administration to highlight its efforts to combat rare diseases. Trump mentioned Megan and her father in his speech, pledging to cut governmental regulations to make it easier to cure diseases such as the one she’s survived.

I guess it was just nice to see a person with a rare disease mentioned on Rare Disease Day. It was highlighting the need to think outside of the way things are currently done.

Thanks for the info/link 's appreciated

 

[Remy]

Who is Megan?

From the Washington Post:

But pull back the curtain a little further, and it becomes clear that this success story is quintessentially American in a different way than Trump might care to admit. The actual drug, that saved Megan’s life is manufactured in Belgium and was developed by a biotech company founded by a Dutch immigrant — a company that is today owned by a French firm. The drug was invented through a scientific experiment that couldn’t have happened without international collaboration. And a president who has said he wants to bring down drug prices just held up as a shining example of innovation a drug that costs an average of $298,000 a year, per patient.

 

[Remy]

I guess it was just nice to see a person with a rare disease mentioned on Rare Disease Day. It was highlighting the need to think outside of the way things are currently done.

You mean like this Obama initiative from 2015? Trump is hardly forging new ground here contrary to his own overinflated opinion.

Launched in January 2015, the White House Precision Medicine Initiative is ushering in a new area of medicine that promises to deliver the right treatment to the right person at the right time. The need is particularly pressing for patients struggling with intractable diseases that have no treatment or cure.

“The power of precision medicine is not simply to apply topline technologies to previously unsolvable medical problems, but to create the most cost-effective solutions for our patient populations who disproportionately need health care resources,” says Dean Li, M.D., Ph.D., associate dean for research at University of Utah Health Sciences, and co-founder and chief scientific officer for Recursion.

Patients with rare diseases, often caused by genetic mutations, bear a disproportionately heavy health burden. Currently, there are no drugs available to treat 95 percent of patients with such diseases. Though by definition each rare disease strikes no more than 1 in 200,000 people, as a group these conditions affect 10 percent of the U.S. population.

 

[Tina]

I was simply trying to answer Aidan's question. I had stopped following this thread because it became so negative, but Aidan's question popped up in my email so I answered it.

I did not say anything about Trump's intent. I am so sorry that I forgot to state the "Hitler Trump" invited her to speak so he could use her and her family only to be duped because in reality everything positive about the story is contradicted by who that evil Trump really is. But he is too stupid to realize it. He will be the ruin of the world if we don't castigate everything he says or touches. And anything good in the story was initiated first by Obama anyway.

This is ridiculous. I simply answered a question. I did not even say one positive thing about Trump. I stated a fact about what happened. He invited her family. Rare Diseases got some notice. Her father started a company and has worked for a better process in this country. THAT'S IT.

I did not realize this thread was created to find every way there was to dog Trump and praise Obama. I don't know about everyone else who has ME/CFS but I don't particularly feel like Obama has done much for me. In all the time I have been educating myself regarding this dreadful disease I have heard very little good said about the government's efforts on our behalf. Guess I didn't realize such strides had been made in the last 8 years due to Obama.

All I did was answer someone's question. Truthfully.

 

[ankaa]

1. Highlights from the EPA budget cuts...
Water-borne pathogens are a big problem for CFS'ers (among many others) ..In fact, Chia hypothesizes that the Tahoe outbreak was caused by sewage dumped into Lake Tahoe which dispersed enteroviruses (he believes that enteroviruses are at the root of CFS). It's really hard to understand how anyone can think this administration is good for sick ppl, when there's news like this practically every day...

In December, our water was briefly tainted, due to all the heavy rain we've had this winter. I drank some tap water during this time, (I should have known better b/c it smelled kinda funky) and got a gut infection.. Minor, and I knocked it out quickly w Prescript Assist, but this is the kind of stuff that scares me. If there's ever a BIG problem, like in Flint, MI, I don't know what I'd do.... I have too many gut problems as it is...
http://www.oregonlive.com/environment/index.ssf/2017/03/here_are_42_of_president_donal.html

Some highlights:

• Puget Sound. Funding for restoration work in the country's second-largest estuary would be cut from $28 million to $2 million.
• The Great Lakes. Funding to combat algae blooms, invasive species and other water pollution problems in the world's largest group of freshwater lakes would be cut from $300 million to $10 million.
• The Chesapeake Bay. Funding for restoration in the country's largest estuary would be cut from $73 million to $5 million.
• Research on endocrine disruptors. The EPA's work studying chemicals that can interfere with the body's reproductive and developmental systems would nearly be eliminated, dropping from $7.5 million to $445,000.
• Diesel emissions. Since 2008, the EPA has issued grants to accelerate the country's transition from old, dirty diesel engines to cleaner burning trucks and equipment. They've been responsible for most of Oregon's progress in addressing cancer-causing diesel soot, a major air pollution source.
• Beach water quality testing. The EPA spends about $9.5 million to fund state testing of bacteria levels at beaches around the country. In Oregon, it funds state testing during the summer. That would be eliminated.
• The U.S.-Mexico border. Sewage and garbage from Mexico frequently sweeps into San Diego during winter rainstorms. The EPA has funded work there to slow the flood of garbage into the Pacific Ocean. Its program to address problems like that would be cut from $3 million to $275,000.
• Environmental education. The EPA spends $8.7 million annually on programs to educate children. Spending on them would be cut to $555,000.

2. Ampligen is $42,000 / year...(not including doctor's fee for infusion)

• Insurance companies won't cover it if there no data to support use for CFS. Ironically, the ppl who think Don the Con has their backs are low income, and unlikely to afford out of pocket costs like this..
• If you're injured by a drug, you won't be able to sue b/c there's no data to prove any kind of recklessness; likely, you'll just have to sign away your rights to get your doctor to rx it... ie, there's no data to support that this will help or not harm you, os you're taking it at your own risk..

http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/

 

[ankaa]

This thread did get out of hand. If there are any further replies let's keep them to the subject at hand = would reducing regulations at the FDA be helpful?

IMO, if you want to consider whether he will be a good for CFS'ers, you have to include the EPA policy, and maybe even agriculture... Clean air and water is essential for health, and there are many studies linking poor environmental quality to immune disease and chronic illness.

T1 Diabetes & metabolic disease (is CFS a metabolic disease?? I can barely function when air pollution is bad..) is linked to Air Pollution
Environmental pollution is linked to AI disease
a few studies.. many more if you look:
http://diabetes.diabetesjournals.org/content/61/12/3037
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114837/
https://www.ncbi.nlm.nih.gov/pubmed/25635985
https://www.nytimes.com/2016/09/21/well/live/air-pollution-is-linked-to-a-diabetes-marker.html

Air Pollution linked to Alzheimers
"In a nationwide study that tracked the cognitive health of women between the ages of 65 and 79 for 10 years, those who had the APOE-e4 variant were nearly three times more likely to develop dementia if they were exposed to high levels of air pollution than APOE-e4 carriers who were not.
Among carriers of that gene, older women exposed to heavy air pollution were close to four times likelier than those who breathed mostly clean air to develop “global cognitive decline” — a measurable loss of memory and reasoning skills short of dementia."
http://www.latimes.com/science/sciencenow/la-sci-sn-air-pollution-alzheimers-20170131-story.html
https://www.alzinfo.org/articles/air-pollution-raise-dementia-risk/

 

[Remy]

Guess I didn't realize such strides had been made in the last 8 years due to Obama.

You made it out like everyone before had ignored rare diseases and how it was oh so wonderful to see Trump giving those who suffer their due.

I am simply pointing out that is very far from the truth of the matter.

Rare diseases, and making their treatment more affordable, has long been a goal of presidential administrations. There's nothing new or revolutionary to Trump in that regard.

And further, his proposed policies are in extreme opposition to his stated goals. That's a big problem for those of us concerned about pesky details.

 

[Paw]

And further, his proposed policies are in extreme opposition to his stated goals. That's a big problem for those of us concerned about pesky details.

Which is one of the problems with having a president who will say anything with no regard to the truth or facts. People then are liable to hear only what they want to hear.

This is why it's so hard to limit this thread to a rational discussion of Trump "policies." The word is absolutely meaningless to someone whose every utterance, tweet, or deed is solely for the purpose of self-promotion.

 

[Abrin]

I think Donald Trump fills a vacuum left by the absolute decimation of the left that's happened since the 1980s. The discussions I see online now are much more serious. The leftmhave been kicked in the arse and it ismthe beginning of renewal so that can only be a good thing that comes out of Trumpland.

Those of us in Canada have got to remain vigilant because the vacuum that existed in the United States also now currently exists in Canada.

I've been keeping a watchful eye on Kellie Leitch's rise towards power and honestly it has got me more than a little bit worried.

 

[Abrin]

I am shocked to see the degree of excitement & pure anger that Trump inspires.
I remember being really mad when Bush won the second time, not being elected by the People, but electorial...
That is nothing compared to the negative energy that is surrounding Trump. His supporters are even more hateful that his opponents. People are really angry, that scares me...A President should not inspire Hate & Anger, there is no positive that can come from it.

As a Canadian with no horse in your race I do have to point out that Trump has already acted in violation of the US Constitution so that would be a really good reason to inspire hate & anger.

I think it is a mistake to say that Trump's opponents are hateful. I would also think it would be a mistake to say that Trump's supporters are hateful. This is just my humble opinion, but it seems to be that currently there is a whole bunch of really fearful and scared people in America on both sides because they are 'coming to the table' with this whole idea that it is 'Us against Them' and who have somehow seemed to have forgotten that the end of the day they are all Americans.

 

[Tina]

You made it out like everyone before had ignored rare diseases and how it was oh so wonderful to see Trump giving those who suffer their due.

I did not make it out like it had never been given attention before. I simply said it was nice to hear it mentioned. And it was.

I did say it was highlighting thinking outside of the current way things are done. (And I thought that was what this thread was about --- potential changes with the FDA) Because it was. As much as the young woman being mentioned, it was the father and what he had to go through to help his daughter that was being highlighted. They were chosen for that reason.

Now you can think they were being used. You can think Trump is a liar. You can think Trump is evil. Maybe you think the father is terrible for agreeing to go to the speech. That doesn't change anything about what I said.

I was not saying anything about Trump other than it happened at his speech.

 

[ankaa]

more research on how abolishing the EPA (vs fixing it or making it better) will likely impact immune health
Air pollution leads to more drug resistant bacteria, study finds
Research shows how black carbon affects bacteria in humans’ nose, throat and lungs, possibly affecting their ability to beat the immune system
https://www.theguardian.com/environ...s-role-of-black-carbon-in-respiratory-disease



we're going backwards...
"The 1952 (london) killer fog led to the creation of the Clean Air Act, which the British Parliament passed in 1956. Researchers still consider it the worst air pollution event in European history."
http://www.foxnews.com/science/2016/12/13/mystery-solved-cause-londons-1952-killer-fog-revealed.html