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NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

Wayne

Wayne

Senior Member
Messages
4,319
Location
Ashland, Oregon
Nord Wolf said:
I live in VT, and there's nothing honest about the guy. This isn't a political forum so I won't lay out details that Vermonters witnessed for years...
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Hi @Nord Wolf -- I'm curious, do you know of anybody in VT who does like Bernie? The cause he's taking up for Long COVID seems to be in the same category of sorts as other causes he's taken up. He just seems to be more astute than most politicians.

It also seems to me he's willing to talk about and explore a lot of issues that most others either don't want to address, or don't want to take the risk. Kudos to him for willing to fight for funding for Long COVID, though I don't know that NIH and other governmental funding will turn up much (with their often too narrow of a focus).

Nord Wolf said:
Though, through private message I’d be happy to share said story if anyone wishes further elaboration. But not tonight as I’m exhausted, in pain, and need to retire for the night.
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Just saw your last post. Sorry you had to go through these difficult experiences you mentioned. If you do end up sharing what they were with anyone else, I'd be interested in a copy of it to my PM as well. I'm always interested in the ethics of public figures, which of course leads me directly to whether to give them any credibility for what they say and do.
 
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Treeman

Treeman

Senior Member
Messages
796
Location
York, England
I've always thought it's hard to write about funding for research for fatigue without scraping politics.

I'm angry and frustrated, it's natural to aim that at the people who are involved with decision making on public funds.
 
Treeman

Treeman

Senior Member
Messages
796
Location
York, England
In the UK it's estimated that there are 240,000 people with ME/CFS and i saw a report that estimates it costs £4 billion a year to the economy from lost productivity and benefits payments. They estimate there's now 1.5 million now suffering with long COVID in the UK. If I use the same projections as the costings as above it could be costing the UK £24 billion a year.

In Europe 18 million are estimated with LC. = £ 288 billion a year

In USA estimated 20 million with LC . = £320 billion a year.

The proposed £10 billion for research in the USA equates to around $0.50 per person per year. I don't think that's a lot.

Not finding out what causes fatigue after this global outbreak is unwise. There will be another, with similar devastating effects on people and what's important to politicians, tax payers.

It's like buying a brand new car and driving it in to a wall, then doing it again, and again and again.......
 
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Jyoti

Jyoti

Senior Member
Messages
3,385
Wayne said:
I'm curious, do you know of anybody in VT who does like Bernie?
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I lived in VT for quite a while and Bernie was my Representative...he'd just left the mayorship of Burlington when I arrived. So....a long time ago--which may or may not be relevant. I worked with him and his office on a number of policy issues related both to my work-work and a progressive volunteer effort--both of which were health-related. The volunteer project was seen at the time as kind of crazy and is now well-established in every state in the country, generally with bipartisan support. I always felt like he was an ally, and a fairly creative one at that.

I am really, really sorry to hear about Nord Wolf's experiences, even as alluded to. Maybe things have changed. Being in government has not proven to be the most integrity-building path for a lot of people...

Still...this looks like a good step forward for all of us if it were to become law. Here is a link to Solve's petition which asks that ME and other infection-originating illnesses be included: https://mobilize4change.org/JVTdchh (I think this link works---have been checking it and am not entirely sure, but if it it doesn't, I am sure you can go to Solve's website for it.) I wrote an email to the address @Dakota15 provided for comment, but I figured I'd sign the petition as well! If you haven't written, it is an easy way to add your voice and advocate that we be included.
 
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Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,408
Nord Wolf said:
“Off the cuff” I assure it was not in relation to my statement. I have very real personal experience with Mr. S concerning my health, M.E., medical compensation, and 18 years of country service which led me down this path.
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I"m sorry all that happened, it's very wrong. Lots of things are affected by political crap and currently alot of it is broken.
 
Dakota15

Dakota15

Senior Member
Messages
321
Location
Midwest, USA
If I’m hearing correctly (since we know NIH representation wasn’t in attendance at the HELP Hearing) this is the first public acknowledgement of a separate & recent coordinated / behind-the-scenes meeting with the community (when he says “we brought in some of their critics”) and Sen. Sanders with the new NIH Director and her staff.
 
L'engle

L'engle

moogle
Messages
3,231
Location
Canada
Treeman said:
In Europe 18 billion are estimated with LC. = £ 288 billion a year

In USA estimated 20 billion with LC . = £320 billion a year.
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Typo, you almost certainly meant to write millions with LC.

Good point, I think there will be more and more ill people with each outbreak and each generation having more people sicker younger.
 
H

hapl808

Senior Member
Messages
2,130
L'engle said:
Good point, I think there will be more and more ill people with each outbreak and each generation having more people sicker younger.
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Ironically, the advances in medicine will hide this growing problem. I already see it with life expectancy. They've said that since it's slowly going back up in some places, that's proof the pandemic had no long term effects. Yet they're ignoring that the rate of increase is much slower, and it's still below where it would've been if the trend had continued without the steep drop at the beginning of the pandemic.

So in ten years when the US life expectancy has gone up two years, they'll declare victory - ignoring that it could've gone up 5+ years. And they'll totally ignore the general worse health. I already see that on social media - people joking about, "Wow, I'm exhausted all the time. Welp, this is what being 30 looks like." No, it doesn't and it shouldn't.
 
B

Booble

Senior Member
Messages
1,465
hapl808 said:
Unless I'm misreading, the link shows the bill was introduced but has yet to make it through Senate, then House, then being signed by the President.

It doesn't look like it's that much closer to being law than Bernie's bill (it has been introduced - but no further action).
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Oh, right.
 
L'engle

L'engle

moogle
Messages
3,231
Location
Canada
hapl808 said:
I already see that on social media - people joking about, "Wow, I'm exhausted all the time. Welp, this is what being 30 looks like." No, it doesn't and it shouldn't.
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Yes I was reading an article yesterday about people being ill with viruses upwards of half the time, particularly in households with children. The conclusion was "this is normal and natural, nothing to worry about", which is... obviously not the case.

The stats on life expectancy also won't reference the number of people who are alive with poor quality of life due to chronic conditions. "They're alive, it's all good!"
 
Treeman

Treeman

Senior Member
Messages
796
Location
York, England
L'engle said:
Typo, you almost certainly meant to write millions with LC.

Good point, I think there will be more and more ill people with each outbreak and each generation having more people sicker younger.
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LOL, yeah millions. Globally the estimate with LC is around 68 million.

hapl808 said:
They've said that since it's slowly going back up in some places, that's proof the pandemic had no long term effect
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In the UK life expectancy is going down, austerity with public services has severely damaged things. The economy just hasn't grown enough over the last 14 years. The UK needs sick people to become tax payers, you need to invest to grow and increase life expectancy.
 
sometexan84

sometexan84

Senior Member
Messages
1,235
Signed petition and emailed my feedback. :thumbsup: @Rufous McKinney Thx for bumping.. i wouldnt have seen this otherwise.

To summarize for others...

Petition link below. This is to make sure this huge Long Covid proposal gets modified to include ME/CFS as well.

https://mobilize4change.org/JVTdchh

Email below. If you want to go 1 step further, send email where they're accepting feedback on the proposal. Took me less than 5 min to email, asking them to consider modifying proposal to include ME/CFS and summarizing the "why".

LongCovidComments@help.senate.gov


EDIT: I'm editing this here instead of adding a new post so the content above doesn't disappear...

So, not sure it matters much (as signatures prob would have to reach like 10's of thousands for them to take notice) but the "Call to Action" on the page seems lackluster.. could perhaps hinder potential signatures.

Like, when you land on the pg, my immediate thought would be "what the hell are you talking about" lol. Like, lots of words.. what are you wanting me to do.. and why.....

If I was going for signatures, I would put a heading this at the top of the page...

$10 Billion Long COVID proposal does NOT include ME/CFS
Help us FIX that!​

...or something in that vein.
Perhaps that would be more compelling than....

Add "and associated conditions" to the Long COVID Moonshot Proposal​

my 2 cents

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