Congress Approves $1,000,000,000 for COVID-19 Long-Haulers Research : Implications for ME/CFS - (Health Rising)

[Mary]

Crossing my fingers!

Congress Approves Over a Billion Dollars to Study the COVID-19 Long Haulers : Implications for ME/CFS - Health Rising

EDIT: Dang! That amount of money DID seem too good to be true! - Cort updated the article with this caveat:

Update! There is some controversy over how much funding will go to the long haulers or how much is devoted to long term studies of COVID-19 (or if both are the same thing). Apparently the bill refers to long term studies of COVID19. That suggests to me that it does refer to the long haulers. Otherwise why refer to “long term”? Large NIH studies generally last from 3-5 years (i.e. are long term) without ever using the term “long term”. On the other hand the phrase provides wiggle room and does not nail down the long haulers – so there’s some uncertainty. As Emily reported it will take time to unpack what’s going on. Whatever is going on one would think there is enough money for all.

So I'm sure some of the money will be used for long-haul research, but probably not the bulk of it!

1/15/2021: EDIT AGAIN! It's been confirmed that the money is for "post-acute COVID syndrome" (aka long-haulers!) - some of that has GOT to trickle down to ME/CFS research! THE FOLLOWING IS A HYPERLINK FOR AN MEACTION PAGE BUT I CAN'T GET IT TO LOOK LIKE A HYPERLINK: NIH official confirms $1.15 billion funding for long COVID research - #MEAction Network

 

[bensmith]

Wow didnt see that coming.

 

[Rufous McKinney]

Wow

Wonder what legislation this was in ...the 20/21 annual budget?

I'm thinking about all the research papers we read which indicate: this is all preliminary, and additional studies (more bigger larger)..are required. Just about every study concludes- more study required to confirm initial findings. That was the case with the recent OMF Stanford studies...

So wouldn't it be nice if some of the most promising studies that have transpired could get further confirmation.

 

[Mary]

A little more info from the article - I may have been premature in sounding the trumpet here!

. Emily Taylor, who led the charge for the bill, stated that “additional details about the complex weekend budget agreements are slowly emerging from Congress. We’ll have a full ME/CFS budget breakdown for you in the coming weeks.

 

[gbells]

Covid is one of those things that government can't ignore. There would be too much public outcry. This may really help ME research (though I think funding mainly needs to go to Kimer Med for VTose).

 

[nyanko_the_sane]

This is good news no matter what.

 

[Hipsman]

I hope that whatever % of this money that will go to long haulers research wont end up as PACE trial 2.0

 

[bensmith]

Still seeing pace for lh. Most lh dont have pem in my experience, so might not matter. But still.

 

[Mary]

I found the actual text of the bill (it was not easy to do!) The NIH funding is part of a huge appropriations bill - 5,593 pages (!): untitled (house.gov)

The funding talked about above is part of Division M, on pages 1831-1832 and reads in part as follows:

That of the amount appropriated under this heading in 14 this Act, $1,150,000,000 shall be provided for research 15 and clinical trials related to long-term studies of COVID– 16 19:

It doesn't mention long-haulers anywhere -- oh well, we can hope! (and lobby etc.)

 

[Rufous McKinney]

on pages 1831-1832

Please accept you Special Commendation Award...I give them out rarely.....

 

[Rufous McKinney]

Division M, on pages 1831-1832

Division M...seems to be listed at the end of the document..so maybe it lives elsewehre..I did not see this info on pg 1831

 

[Mary]

Division M...seems to be listed at the end of the document..so maybe it lives elsewehre..I did not see this info on pg 1831

Look at line 13 on page 1831 - you'll see the sentence I quoted above there. But Division M actually starts on page 1823. It encompasses a lot more than our "little" allotment! Actually Division M is called "Coronavirus Response and Relief Supplemental Appropriations Act, 2021". There are divisions for each letter of the alphabet (A - Z) but there weren't enough letters so they had to add on divisions AA - FF - (see pages 1 - 4 of the act) It's unfortunate that they did not include page numbers in this index!

 

[Mary]

Please accept you Special Commendation Award...I give them out rarely.....

Thank you - I humbly accept!

 

[mike3453]

A long covid group I am part of posted yesterday confirming that the money is for long covid and MIS-C specifically and linked the video below.

 

[mike3453]

The announcement is as 15:30

 

[Hipsman]

A long covid group I am part of posted yesterday confirming that the money is for long covid and MIS-C specifically and linked the video below.

That's like more money then all the money spent on ME/CFS research since 1976 combined!

 

[Mary]

MEAction also announced that the $1.15 billion referenced above is for "post-acute COVID syndrome" which is potentially very good news for ME/CFS: NIH official confirms $1.15 billion funding for long COVID research - #MEAction Network

 

[andyguitar]

I think its becoming clear that there is a very high rate of long covid. Bit early to say how long "long covid" is going to last for but having listened to a few radio phone ins on the subject some get a lot better and then crash. Sounds familiar. Symptoms can be very strange.

 

[hapl808]

Strange symptoms and big crashes? Must be all in their heads. (Sorry for the sarcasm - I do hope that some of this research can benefit those of us that have been dealing with this for years or decades with minimal medical support.)

 

[wyva]

Strange symptoms and big crashes? Must be all in their heads. (Sorry for the sarcasm - I do hope that some of this research can benefit those of us that have been dealing with this for years or decades with minimal medical support.)

I have joined two covid long hauler groups in my country (I've never had covid myself but wanted to see what's going on and give them some info on the similar ME/CFS). Anyway, people there did get told by some doctors it was all in their head, even after covid. However, there was a woman whose doctor apologized to her after many months, saying that now he can see that this really is a thing.

Btw, I'm also very happy about the 1.15 billion.