Why Does Long COVID get $1.15 billion and ME/CFS only $60 million??

[MonkeyMan]

First, I'm not sure this is the right thread for this - moderator, please move if needed.

Second, a caveat -- Long COVID is obviously a God-awful thing, and the $1.15 billion over 4 years that Congress provided the NIH to study it (in December '20) is fantastic news for everyone, including us ME/CFS patients, who may indeed benefit from any treatments that become available as a result.

But why the hell does Long COVID get $1.15 billion, when ME/CFS gets only $15 million annually (i.e., just over 5% of what Long COVID gets)? Can someone please explain this to me???

Thank you.

 

[BrightCandle]

The continuation of widespread systemic prejudice within medicine and people at large after a cabal of Psychologists fabricated data about the condition for 80 years. Its getting more funding every year now the reality has been exposed but its going to take generations to solve that level of prejudice as driven by media reporting on fake science.

 

[marcjf]

This $1.15 billion is starting to feel like an empty promise though, or maybe it is just filling up someone's pocket. As you noted, this was back in December '20, so we are approaching almost 2 years already. And yet they have barely anything to show. People started to notice this as well: https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/

I would say that if you compare findings, US Long Covid research is even behind countries like Germany, which have not invested a fraction of this $1.15 billion. Whoever is leading this NIH "effort" is doing a terrible job.

 

[ljimbo423]

But why the hell does Long COVID get $1.15 billion, when ME/CFS gets only $15 million annually (i.e., just over 5% of what Long COVID gets)?

I think one reason is the Government thinks Long Covid is much more of a financial threat to society than ME/CFS because the number of people with Long Covid already and that it continues to grow fast.

the $1.15 billion over 4 years that Congress provided the NIH to study it (in December '20) is fantastic news for everyone, including us ME/CFS patients, who may indeed benefit from any treatments that become available as a result.

I think ME/CFS and Long Covid have the same root cause. So I feel any research that goes into LC, will benefit ME/CFS as well. I do understand your anger and frustration about ME/CFS getting side-lined yet again.

 

[Rufous McKinney]

\what happened in California with the proposal for Centers for Excellence (...lobbying, a new law to fund them and maybe it didn't pass).

 

[Rufous McKinney]

I think one reason is the Government thinks Long Covid is much more of a financial threat to society than ME/CFS because the number of people with Long Covid already and that it continues to grow fast.

We know. We (ME) still don't exist, but they (long covid) might. Money got thrown at something, but they sure have blown it.

DOD has a huge ton of $$ tied to things tied to maybe it will also help us.

The Burn pit victims and gulf war thing really bother me alot. Its so wrong. Its just heartbreaking to see these human beings destroyed so callously.

 

[SNT Gatchaman]

I regard it as politics. From the science side, I think we can be confident the conditions are the same — once you remove the thromboembolic/cardiovascular aspect that seems to be an orthogonal feature of this virus. So research into LC is research into ME. I know it's aggravating but I rather view it as a $1.15B investment in ME. (Whether NIH do anything useful remains to be shown.)

If that's what it takes to actually start funding research into this "totally new and never seen before condition" then fine. Scientific truth will prevail. Eventually the historical record will be corrected.

Long Covid is a patient-defined term. It is probably fixed in the scientific literature for now. But the sequelae of SARS1 and MERS were always simply called ME/CFS in the literature.

 

[ljimbo423]

. So research into LC is research into ME. I know it's aggravating but I rather view it as a $1.15B investment in ME.

This is how I see as well. Different names but same illness.

 

[hapl808]

If that's what it takes to actually start funding research into this "totally new and never seen before condition" then fine. Scientific truth will prevail. Eventually the historical record will be corrected.

Totally agree, but the problem with the 'never seen before' attitude is they're ignoring the bits of ME/CFS research that might be helpful and reinventing the wheel. My guess is they won't cure the condition, but may figure out some treatment protocols if there is some gold in them there hills. Maybe the HIV model, maybe some new chronic illness model. Hopefully they figure out something and don't just eventually toss everyone in the psychogenic dumpster.

 

[heapsreal]

60million is alot much, heaps, better than 4 million pound GB spent on cbt/get in cfs/me. 🤞the 60million gets spent wisely🤞🤞🤞🤞🤞

 

[pattismith]

First, I'm not sure this is the right thread for this - moderator, please move if needed.

Second, a caveat -- Long COVID is obviously a God-awful thing, and the $1.15 billion over 4 years that Congress provided the NIH to study it (in December '20) is fantastic news for everyone, including us ME/CFS patients, who may indeed benefit from any treatments that become available as a result.

But why the hell does Long COVID get $1.15 billion, when ME/CFS gets only $15 million annually (i.e., just over 5% of what Long COVID gets)? Can someone please explain this to me???

Thank you.

post covid illness is a fantastic opportunity to solve post viral ME/CFS, let's hope something will came out of this money!

 

[CSMLSM]

I think ME/CFS and Long Covid have the same root cause. So I feel any research that goes into LC, will benefit ME/CFS as well. I do understand your anger and frustration about ME/CFS getting side-lined yet again.

Me too! I agree wholeheartedly.

 

[frozenborderline]

Me too! I agree wholeheartedly.

I mostly agree but there are important differences. Not all long covid patients have PEM and some patient advocates for long covid and doctors push exercise for that.

Also the NIH isn't using that 1.15 billion well. If they were, it would be good opportunity, but they're not.

this most recent podcast covers a lot of this stuff , from how the recently higher prevalence of me/cfs thanks to the pandemic could be an opportunity, to the specific problems discussed in that statnews article, to some of the most recent research opportunities.

https://soundcloud.com/headlessyouthpodcast%2Fmany-seasons-in-hell-part-iii

 

[frozenborderline]

https://podcasts.apple.com/us/podcast/many-seasons-in-hell-part-iii/id1537441455?i=1000575774445
On apple podcasts too

 

[MonkeyMan]

post covid illness is a fantastic opportunity to solve post viral ME/CFS, let's hope something will came out of this money!

Yes but would you care to revise that to "post infectious" ME/CFS? A lot of us have ME/CFS that arose after non-viral infections, such as candidiasis.

 

[MonkeyMan]

Cort has a great write-up here on the "How Long?" campaign to end the suffering. It's about time the urgency of getting answers (i.e., effective treatments) is recognized. Many of us have been suffering for decades. Even some ME/CFS researchers do not seem to really grasp the urgency.

 

[frozenborderline]

Cort has a great write-up here on the "How Long?" campaign to end the suffering. It's about time the urgency of getting answers (i.e., effective treatments) is recognized. Many of us have been suffering for decades. Even some ME/CFS researchers do not seem to really grasp the urgency.

I think the problem is more that the urgency isn't recognized by allies and thus there isn't enough intense protests like with aids, to increase research funding.

Scientists are working on this as fast as they can with the money they have although I do wish people like Ron Davis would protest and speak out more to congress or even in illegal civil disobedience protests at the NIH or something. That is where urgency is missing. I don't think the science could go any faster with more pressure or urgency on scientists alone, but rather urgency by allies helping us protest. Even friends and family don't seem to get this seriousness

 

[frozenborderline]

I mostly agree but there are important differences. Not all long covid patients have PEM and some patient advocates for long covid and doctors push exercise for that.

Also the NIH isn't using that 1.15 billion well. If they were, it would be good opportunity, but they're not.

this most recent podcast covers a lot of this stuff , from how the recently higher prevalence of me/cfs thanks to the pandemic could be an opportunity, to the specific problems discussed in that statnews article, to some of the most recent research opportunities.

https://soundcloud.com/headlessyouthpodcast%2Fmany-seasons-in-hell-part-iii

We discuss what it would take to get research funding and breakthroughs for me/cfs and the problems with the NIH and our protest movements in this episode

But the full context is this three episode series which goes over autobiographical stuff as well as science and philosophy and poetic essays about illness https://soundcloud.com/headlessyouthpodcast%2Fsets%2Fmany-seasons-in-hell-post

 

[MonkeyMan]

To answer my own question, one reason there's more funding for Long Covid is that there are a lot more Long Covid patients than ME/CFS. Prevalence estimates online say 20 million Long Covid in the US vs 1.5 million ME/CFS.

So easily 10 times as many Long Covid patients.

 

[BrightCandle]

To answer my own question, one reason there's more funding for Long Covid is that there are a lot more Long Covid patients than ME/CFS. Prevalence estimates online say 20 million Long Covid in the US vs 1.5 million ME/CFS.

So easily 10 times as many Long Covid patients.

True now, but the funding was agreed before that was the case its just taken years to get the point of grants being given. Given the age of Long Covid and severity its yet another condition better funded than ME/CFS by a considerable margin.