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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Action alert: Brian Vastag's appeal to the NIH is in the Washington Post - HELP BOOST IT!

mango

mango

Senior Member
Messages
905
Nielk said:
Chech at top right to see if you are logged in.
Click to expand...

thanks. yes, i'm logged in and my "display name" is there in the upper right corner. (i have no problem accessing or changing my user details/settings etc.) i've turned off my adblock add on, didn't help either.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Great comment from someone:

My child is imprisoned in the basement of that razed house, suffering, frightened, with no life, and no way out. We, his loved ones know he's there, but we have little power to help him out. The NIH, congress, and donors hold that power. I say use that power, free him from his torture, let him go to school, have a social life, build a useful, meaningful, tax paying life. He is an American human being after all.

Dr. Collins, congress, LET MY SON OUT! Stop pretending he is not there and fund ME/CFS research commensurate with the disease burden.

If you've ever wanted to do something that matters in this world, this matters. You can make a difference, even if you're not Dr. Collins or a member of congress. The Open Medicine Foundation has a team of brilliant researchers ready to get to work on ME/CFS, all they need is funding. Here's your opportunity to help: http://www.openmedicinefoundation.org .

Signing the petition for funding parity would also be helpful:http://www.meaction.net/funding-equality-petition/ .

They are still there, locked in that basement, until you let them out.​
 
Nielk

Nielk

Senior Member
Messages
6,970
mango said:
thanks. yes, i'm logged in and my "display name" is there in the upper right corner. (i have no problem accessing or changing my user details/settings etc.) i've turned off my adblock add on, didn't help either.
Click to expand...

I don't know what else it could be? Maybe try refreshing the browser?
 
mango

mango

Senior Member
Messages
905
Nielk said:
I don't know what else it could be? Maybe try refreshing the browser?
Click to expand...

unfortunately it didn't help, already tried restarting and using/logging in with a different browser too. i've given up now, it's not that important to me... thank you so much, regardless! :)
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Sasha said:
Great comment from someone:

My child is imprisoned in the basement of that razed house, suffering, frightened, with no life, and no way out. We, his loved ones know he's there, but we have little power to help him out. The NIH, congress, and donors hold that power. I say use that power, free him from his torture, let him go to school, have a social life, build a useful, meaningful, tax paying life. He is an American human being after all.

Dr. Collins, congress, LET MY SON OUT! Stop pretending he is not there and fund ME/CFS research commensurate with the disease burden.

If you've ever wanted to do something that matters in this world, this matters. You can make a difference, even if you're not Dr. Collins or a member of congress. The Open Medicine Foundation has a team of brilliant researchers ready to get to work on ME/CFS, all they need is funding. Here's your opportunity to help: http://www.openmedicinefoundation.org .

Signing the petition for funding parity would also be helpful:http://www.meaction.net/funding-equality-petition/ .

They are still there, locked in that basement, until you let them out.​
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Would have done a better job , with a bit more time...
 
G

ghosalb

Senior Member
Messages
136
Location
upstate NY
did anyone ever send a copy of the "Norwegian apology to their citizens for neglecting CFS patients" to NIH with comments like "let this not happen to you......". Just wondering. Probably need translating. Really appreciate all the comments/links/efforts by Sasha, Simon and others so far. And of course many thanks for the letter to Dr. Collins.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
mango said:
is user name different from "display name"? i've entered a display name and verified my email address. i can't figure out what's wrong, it still won't let me 'like' comments...
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Display name is the correct term I think. I just had to keep going back to my profile and fiddling with things, refreshing the page, etc. and finally got in.

BTW, let's all get back there today with more comments and likes.
 
viggster

viggster

Senior Member
Messages
464
C
ghosalb said:
did anyone ever send a copy of the "Norwegian apology to their citizens for neglecting CFS patients" to NIH with comments like "let this not happen to you......". Just wondering. Probably need translating. Really appreciate all the comments/links/efforts by Sasha, Simon and others so far. And of course many thanks for the letter to Dr. Collins.
Click to expand...

Can you direct me to this statement from the Norwegian gov't? I have a friend who speaks Norwegian and I want to pass it along to a journalist friend. Thanks.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Great news! The 21st Century Cures Act has got through the House of Representatives. :woot:

I just posted on Brian's article:

The 21st Century Cures Act has now been passed by the House of Representatives-- 344 to 77. It just needs to be signed by President Obama to become law.

Nothing stopping you now, Dr Collins! ME/CFS doesn't have a single FDA-approved treatment, and the suffering for over a million Americans - and an estimated 17 million worldwide - is immense.

We're just asking for a tiny, tiny fraction of that $9 billion. It would be transformative for research in our field. The case is unanswerable.​
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
viggster said:
Can you direct me to this statement from the Norwegian gov't? I have a friend who speaks Norwegian and I want to pass it along to a journalist friend. Thanks.
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Kyla said:
I think the Prime Minister also made some sort of similar statement:
https://www.facebook.com/may12th.awareness/posts/10152716970162161
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There's a blog that gives bit of background about a speech that Prime Minister Solberg gave (click here). The blog also includes an English translation of a key part of a television interview given by the Prime Minister, as follows...
“We haven’t had anything to offer to this group, and they have been met with negligence in the health care system. This is because there have been a lot of prejudices towards this illness; that this is the result of a psychologically, almost wanted illness”, Solberg said in her interview to Norwegian national television, NRK. “It really is a scandal. The patients have been met with a lack of respect just because we haven’t had enough knowledge. The worst thing is that we haven’t worked very hard to get this knowledge either. It is important that the health care system make research on ME a priority”.
Click to expand...
This was originally posted on another thread by @Cheshire, here.
 
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B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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Kyla

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Never Give Up said:
Tulsa World has reprinted Brian Vastag's letter to Dr. Collins. Here's the one and only comment.

"Another whiny 'journalist' writing about 'me'."

Anyone care to respond?

http://time.com/3978589/research-reproducibility-crisis/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed: time/mostemailed (TIME: Most Emailed Story of the Day)
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I recommend that if anybody does, don't respond in any way to the foolish comment - just ignore it - talk right over that troll's head and address the readership by thanking the journo, listing a couple of charities, etc.
 
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