Sign to Support Long Covid Moonshot, help generate $1,000,000,000.00 per year for research

[overtheedge]

This legislation could change everything for us, it is set to supply $11.4 billion dollars total for chronic illness research, please use this link and click "Start Writing" on the lower right side of the page to add your support
https://actionnetwork.org/letters/moonshot-for-long-covid-research-funding

Here's the main site dealing with the Moonshot
https://longcovidmoonshot.com/

Here is Cort Jhonson's blog post on the bill
https://www.healthrising.org/blog/2024/08/11/moonshot-long-covid-chronic-fatigue/

Here is one of many news articles on the Moonshot
https://www.commondreams.org/news/bernie-sanders-long-covid
and a quote from the article that may be of interest to those of us with ME/CFS:
"The groups #MEAction and Solve M.E. also support the legislation, and advocates for people with other diagnoses celebrated that the NIH initiative would be directed to "conduct comparative research to understand the similarities and differences between long Covid and other infection-associated chronic conditions with similar phenotypes, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease, and how activities funded by the program could improve understanding of such other conditions."

 

[Blazer95]

where is the me/cfs moonshot? hopping on a long covid train and hope to benefit my bacterial induced ME/CFS? no sorry.

 

[southwestforests]

where is the me/cfs moonshot? hopping on a long covid train and hope to benefit my bacterial induced ME/CFS? no sorry.

I don't understand how you still came to that conclusion after you read the bill text.

 

[Blazer95]

As the uninformed angry man that i am i of course didnt read it haha

Touché

 

[bad1080]

i am guessing this is for US residents only?

 

[southwestforests]

As the uninformed angry man that i am i of course didnt read it haha

Here;

https://www.sanders.senate.gov/pres...legislation-to-address-the-long-covid-crisis/

Note how many ME/CFS outfits endorse it,

This legislation is endorsed by more than 49 organizations, including: #MEAction, American Academy of Physical Medicine and Rehabilitation (AAPM&R), American Association on Health and Disability, American College of Clinical Pharmacy, American Medical Student Association, Association for Community Organization and Social Action, Association of University Centers on Disabilities, Bay Area Lyme Foundation, BIPOC Equity Agency, Black COVID Survivors Alliance, Body Politic, Celebrate845, Center for Popular Democracy Action, COVID-19 Longhauler Advocacy Project, Disability Rights California, Disability Visibility Project, Healthcare NOW, Infectious Diseases Society of America, Lakeshore Foundation, Long COVID Alliance, Long COVID Campaign, Long COVID Families, Long COVID Moonshot, Long COVID Physio, LymeDisease.org, Marked by COVID, Maryland Indoor Air Quality Advocates, Massachusetts ME/CFS & FM Association, ME/CFS Clinician Coalition, Minnesota ME/CFS Alliance, Mount Sinai Health System, National Association of Councils on Developmental Disabilities, National Association of County & City Health Officials (NACCHO), National Organization of Social Security Claimants’ Representatives (NOSSCR), National Pain Advocacy Center, National Partnership for Women and Families, New Disabled South, New Disabled South Rising, Open Medicine Foundation, Pandemic Patients, Patient-Led Research Collaborative, Senior and Disability Action, Solve M.E., Strategies for High Impact/Long COVID Justice, Umoja Health Bay Area, Vaccinate Your Family, Vermont Center for Independent Living, Vermont Coalition for Disability Rights, and Workwell Foundation


Read the bill text, here.
Read the summary, here.
Read the section-by-section, here.

Especially note the following in the bill text,

19‘(b) DIRECTOR.—
20 ‘‘(1) APPOINTMENT.—
21 ‘‘(A) IN GENERAL.—The Program shall be
22 headed by a Director, appointed by the Sec
23 retary, in consultation with the Director of
24 NIH, who has—
3
TAM24927 6RY S.L.C.
1 ‘‘(i) experience managing clinical or
2 research programs focused on pathogenic
3 mechanisms and biological pathways re
4 lated to Long COVID; and
5 ‘‘(ii) demonstrated commitment to ad
6 dressing Long COVID and other infection
7 associated chronic conditions, such as
8 myalgic encephalomyelitis/chronic fatigue
9 syndrome, postural orthostatic tachycardia
10 syndrome, and post-treatment Lyme dis
11 ease syndrome/persistent Lyme disease.

12 ‘‘(c) ACTIVITIES.—The Program shall—
13 ‘‘(1) investigate the etiology, pathophysiology,
14 risk factors, and pathology of Long COVID in
15 adults and children;
16 ‘‘(2) explore the best ways to prevent, detect,
17 monitor, manage, and treat Long COVID in adults
18 and children;
19 ‘‘(3) contribute knowledge to the under
20 standing, prevention, mitigation, management, and
21 treatment of Long COVID;
22 ‘‘(4) develop and facilitate programs on Long
23 COVID, within the National Institutes of Health
24 and in other settings;
5
TAM24927 6RY S.L.C.
1 ‘‘(5) conduct comparative research to under
2 stand the similarities and differences between Long
3 COVID and other infection-associated chronic condi
4 tions with similar phenotypes, such as myalgic
5 encephalomyelitis/chronic fatigue syndrome, postural
6 orthostatic tachycardia syndrome, and post-treat
7 ment Lyme disease syndrome/persistent Lyme dis
8 ease, and how activities funded by the Program
9 could improve understanding of such other condi
10 tions; and
11 ‘‘(6) conduct comparative research to under
12 stand the similarities and differences between Long
13 COVID and severe, long-term effects from COVID–
14 19 vaccinations.
15 ‘‘(d) DUTIES.—

 

[southwestforests]

i am guessing this is for US residents only?

The program would be within the US government and it does recognize there is worldwide need,

https://www.sanders.senate.gov/pres...legislation-to-address-the-long-covid-crisis/

NEWS: Sanders Introduces Historic Moonshot Legislation to Address the Long COVID Crisis

August 2, 2024

WASHINGTON, Aug. 2 – Sen. Bernie Sanders (I-Vt.), Chairman of the Senate Committee on Health, Education, Labor, and Pensions (HELP), today introduced legislation to address the long COVID crisis that is affecting more than 22 million adults and 1 million children across the United States – and millions more around the globe. The Long COVID Research Moonshot Act of 2024 provides $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support long COVID research, the urgent pursuit of treatments, and the expansion of care for patients across the country.

 

[overtheedge]

where is the me/cfs moonshot? hopping on a long covid train and hope to benefit my bacterial induced ME/CFS? no sorry.

I wrote the following before I saw all the other replies to this thread, In any case these ideas should still be valid for those who aren't fans of the moonshot:




Yeah, there is every reason to be pissed off over the lack of attention ME/CFS is getting, I personally have me/cfs not long covid



But there is good reason for pwme's to support this bill:



It would add legitimacy and attention to chronic exhaustion illnesses of our type in general


Bring lot of new researchers into the field who will learn from the ME researchers and invest in understanding our types of chronic illnesses, a lot of it will be technical learning that is likely to only work in chronic illnesses like this. So if the LC is gone without curing ME many professionals are likely to move to ME research and push for greater investment in such research. Even if that wasn't the case it would be a great boon to have all the ideas and skills of these new researchers mixing in with the talent already available while the money is pumping


The big block to NIH funding for ME has been a lack of large studies, if i remember correctly from when I read into this stuff recently there is setup to put ME cohorts in the studies this bill will fund. If I'm wrong or that doesn't work out money could be raised to do so. It would be much cheaper to add a cohort than to do studies from scratch. The NIH might still object to writing grants after ME has large studies under its belt but they will be under greater pressure and who know how many people among the NIH in general may be swayed and will start taking ME seriously with so many people there being exposed to information about exhaustion illnesses. With such big projects underway among them we would be hard to ignore


If there isn't a cohort then there is this

LC has had a major leg up in research since, for them, studies are quickly done on all the stuff that works in ME patients, they have reached a lot of the big things the ME community has taken many years to find in a very short time because they didn't have to do the intermediate work and the dead end research, the illnesses are so similar they could know where to go right away. It should work both ways, if they do tons of research, we will be able to do the research on the stuff that worked for them with the techniques they developed


If Long Covid is cured and the cure doesn't work for ME those people who had LC aren't just going to forget what they went through and how horrible diseases like this are, they will be out in the world, with energy, talking to people and, if they so choose, able to work on projects that could benefit the exhaustion illness community. I've heard there are many with LC who are medical professionals that got the disease from constantly getting exposed to covid during the pandemic, would be a good group of people to be healthy and taking exhaustion illnesses seriously, convincing their fellow healthcare workers of its gravity.


The biggest ME research and advocacy groups are fighting for this bill, it's hard to believe they don't have the best interest of ME patients in mind

 

[southwestforests]

I've heard there are many with LC who are medical professionals that got the disease from constantly getting exposed to covid during the pandemic, would be a good group of people to be healthy and taking exhaustion illnesses seriously, convincing their fellow healthcare workers of its gravity.

That would be of benefit to world at large.

 

[bad1080]

The program would be within the US government and it does recognize there is worldwide need,

https://www.sanders.senate.gov/pres...legislation-to-address-the-long-covid-crisis/

i meant the signing part

 

[southwestforests]

the signing part

Oh, don't know.
Got back from running a couple errands in the rain right as Dad called to say he's being released from hospital today.
Gonna sit and rest a bit then hopefully remember to look that up.