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

[frozenborderline]

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.

Thats an outdated prevalence estimate for me/cfs which assumes me/cfs didn't increase from the pandemic. Leonard Jason's recent study modeled this and found me/cfs prevalence to conservatively increase to 6 million.

of course Long covid will still be more prevalent bc Long covid is a larger category of post covid illness including me/cfs within it, but its not 10 times as prevalent, no. In my own thread on this issue and my podcast we addressed the prevalence issues

 

[frozenborderline]

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.

It's not true now. The post you are replying to is not true. ME/CFS was at 1.5 million before the pandemic, which is something that was universally agreed upon to increase me/cfs cases. They haven't been updated by the cdc but the prevalence figures of Leonard Jason are conservatively estimating 6 million now. A huge number and also funding is supposed to be given not just for numbers but for other aspects of disease burden: disease adjusted life years (not about mortality necessarily, more about quality of life and ability to function), and other aspects of quality of life and severity of disease.

The other problem is the Long covid numbers include ME/CFS patients. They are related conditions, and given that Long covid is more likely to get studied and funded I'm not against this, but its a problem for comparing the two. If you take away all of the new post covid cases of me/cfs during the pandemic you could have only about I t 15 million or so patient, actually even less if that Leonard jason estimate is conservative. Maybe like 13 million or less even.

So we get 15.5 million or less long covid patients compared to 6 million me/cfs patients if we're being conservative about me/cfs and also separating me/cfs from other types of Long covid. Now that we update those numbers and give context they don't look as radically different. Especially given some Long covid cases might just mean a smell issue, or a transient (but longer than 2 weeks ) post viral fatiguing illness , but me/cfs is, well, me/cfs

 

[frozenborderline]

@MonkeyMan @BrightCandle you may be interested to note this Leonard Jason study actually says a range of 5 to 9 million me/cfs cases in total post pandemic, up from around 500k-1.5 million pre pandemic.
So when I said six million it was within his (conservative) range, but on the low end. The range goes as high as 9 million and if we compared that to pre pandemic it would be an increase of 7.5 million. That estimate, 9 million, isn't a high estimate all things considered, as huge as it seems. Leonard Jason used a model which was relatively conservative in terms of modeling new me/cfs cases after a major post viral illness. You can look at the methodology yourself but my point about it being conservative is that many severe post viral illnesses, like sars1, have had me/cfs cases upward of 30 percent in their population, and even more moderate diseases like mono lead to me/cfs in 10 percent... Given all that and what me/cfs experts have said he sets his sights on the lower end of post viral me/cfs percentages and uses around 10 percent of covid cases to indicate how many me/cfs cases will emerge from the post pandemic time period.


https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20

 

[frozenborderline]

@MonkeyMan @BrightCandle
"In this article, we update our earlier analyses of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) economic impact and its National Institutes of Health (NIH) funding versus disease burden, taking into account the anticipated new cases of ME/CFS resulting from COVID-19. Prior to the COVID pandemic, we estimated a United States ME/CFS prevalence of 1.5 million and an annual economic impact of $36–51 billion. Now, due to COVID and its resulting post-acute sequalae, we estimate total ME/CFS prevalence could rise to between five and nine million. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income, exclusive of other costs, such as disability benefits, social services, and lost wages of caretakers. NIH funding for ME/CFS research would need to expand from the current amount of $15 million per year to approximately $472–$600 million annually, up to a 40-fold increase, to be commensurate with that of similarly burdensome diseases."

https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20

 

[frozenborderline]

9 million would mean that it affects 2.7 percent of the US population which, given its severity, would be enormous

 

[hapl808]

As for prevalence estimates, I think it's important to acknowledge the impact, but there's no way to have an accurate count of long Covid or ME/CFS. Literally two disorders described by vague symptom clusters with zero agreement on definitive diagnosis. Is ME/CFS a subset of long Covid? Or is long Covid a subset of ME/CFS? Or more likely, is some long Covid a subset of ME/CFS, and some ME/CFS a subset of long Covid? It's confusing and until we understand the etiology it's more of a philosophical discussion than a medical one.

Still, I personally think the two disorders are at least close enough that if we solve one, we'll mostly solve the other. That's good news for the extra funding. The bad news is I think we're using the money ineffectively, without a real sense of urgency or priorities, and I think we're a long way from any solutions.

Oh well.

 

[hapl808]

Also, I think it's kinda obvious that one of the reasons long Covid is better funded is the incredible infection rate helped force a recalcitrant medical system into believing it was real. ME/CFS was a slower burn where the psychiatric community and medical establishment were able to gaslight and marginalize the ME/CFS patients. They tried to do the same in the early days of long Covid and they may ultimately be successful, but I think Covid progressed to long Covid (or ME/CFS) faster than many other viral onsets.

Also, with Covid people became aware it was a possibility to have lasting symptoms. When I got sick in SE Asia, I went to many doctors but everyone just said, "Viruses don't work like that." And after they ran a few parasite tests or blood work, I'd be pushed on to the next doctor. So I just dealt with life changing symptoms in silence, because I didn't want to be histrionic or the medical establishment would be more likely to commit me than treat me.

 

[frozenborderline]

As for prevalence estimates, I think it's important to acknowledge the impact, but there's no way to have an accurate count of long Covid or ME/CFS. Literally two disorders described by vague symptom clusters with zero agreement on definitive diagnosis. Is ME/CFS a subset of long Covid? Or is long Covid a subset of ME/CFS? Or more likely, is some long Covid a subset of ME/CFS, and some ME/CFS a subset of long Covid? It's confusing and until we understand the etiology it's more of a philosophical discussion than a medical one.

This seems wrong and cynical especially with regard to me/cfs. There are criteria with me/cfs that capture a more well defined group that probably share similar underlying cause vs rhe more vague fukuda or Holmes or Oxford criteria. The ccc and icc criteria and IOM criteria are all solid.

And epidemiology like this isn't impossible. It just hasn't been done well due to lack of will. You should look at Leonard Jason's methodology. Why dismiss the possibility of doing that without going point by point and refuting it? I mean with details. This is someone who is at the vanguard of important epidemiological stuff with this disease. It matters for a lot of reasons. Blood tests on metabolomics and brain imaging are important . But this kind of work Leonard jason does is as important bc it helps show things like the true impact of me/cfs and disease burden in ways which can be used to show that its an intense threat which deserves a lot of funding.

Long covid is broader bc it includes all post covid sequelae. But with me/cfs there is a fairly well defined core group

 

[hapl808]

Well, I'm pretty cynical.

That kind of epidemiology may be important, but I still think the absolute numbers are likely to be all over the place. I definitely would satisfy ICC criteria for the last 25 years, but that includes periods of what would be considered mild, moderate, and more severe.

And yet I've never gotten an official ICD code ME/CFS diagnosis, so where would I show up in statistics? And I believe if you get a Post Viral ICD diagnosis, you no longer qualify for a ME/CFS ICD diagnosis, so that messes up all EHR data.

So how would I be counted, especially in the USA where there's no centralized databases. Even our vaccination statistics are a mess for that reason - many areas show vaccination rates over 100% because they're trying to estimate based on the number of primary shots and the population census.

I'm not saying that work shouldn't be done, just that it's a very messy and somewhat arbitrary science at best. Why choose ICC over Fukuda? What sequelae should be tied to a Covid infection and what sequelae could possibly be explained by vaccination? Should ME/CFS be removed from long Covid numbers if it's ICC verified ME/CFS triggered by Covid? What's the difference between post viral syndromes and ME/CFS - is one a subset of the other?

Again - epidemiology is important, but we should realize the huge limitations when studying very loose datasets.

 

[hapl808]

All that just boils down to recognizing the limitations and the urgency for better data. Until our diagnostic tools are more standardized and hopefully more objective.

If I asked my neurologists and rheumatologists (at major medical institutions) if they use the ICC criteria, I doubt they've heard of it. If I went to a CFS specialist, maybe they'd use that and diagnose me, but if I went to a lyme specialist, they'd likely diagnose me as well, and if I went to a mold specialist, they'd likely diagnose me as well.

When you're a hammer...

 

[frozenborderline]

That kind of epidemiology may be important, but I still think the absolute numbers are likely to be all over the place. I definitely would satisfy ICC criteria for the last 25 years, but that includes periods of what would be considered mild, moderate, and more severe.

And yet I've never gotten an official ICD code ME/CFS diagnosis, so where would I show up in statistics? And I believe if you get a Post Viral ICD diagnosis, you no longer qualify for a ME/CFS ICD diagnosis, so that messes up all EHR data.

I mean the kind of epidemiology I'm talking about isn't just based on people who have been formally diagnosed, it's based on estimating the prevalence via studying representative samples and extrapolating. It takes into account that most of thr estimated amount won't be diagnosed. Do you think 1.5-9 million people in the US have actually been diagnosed with this illness? No--that's a huge number. Probably only tens of thousands or maybe at most a 100k have been diagnosed. Actually maybe less than tens of thousands.
They've done random telephone surveys with symptom lists to find undiagnosed people and the prevalence, they've done all kinds of models to try and account for the fact that doctors aren't diagnosing this.

Leonard Jason's work is very impressive and I don't like to see it discounted without a proper refutation that says "here's why his model is wrong ". It may not be flashy but it's actually work that is helping people to see the hidden cost of this disease. The cdc wouldn't do epidemiology like that. His work is ahead of the curve.

 

[frozenborderline]

All that just boils down to recognizing the limitations and the urgency for better data. Until our diagnostic tools are more standardized and hopefully more objective.

The thing is the study I posted is showing something that will HELP to get more research funding. Like I said it's great methodology and it's ahead of the curve and it is showing the hidden cost of the illness... the huge amount of people with this disease compared to what the establishment thinks there is ... it even says what the financial disease burden is and how it should be funded at a far higher amount based on the new data.

First off that's helpful for our cause. Second of all it's good science. Everyone has to start somewhere. Why dismiss something out of hand without looking into the methodology, or the researcher?

You may not be able to do perfect epidemiology on a syndrome as opposed to a disease, eg something that is a clinical diagnosis not diagnosable with a single test, but diseases always start as syndromes. They always start as a collection of symptoms people think are related and the boring epidemiological work to figure out out they are and what they are is really important. And you have to do it even if you don't have a simple blood test for a disease. It was done in hiv/aids before they had an idea of what the virus was. It was done in most diseases. It's part of how they decide how much funding to give.

You can say that , and I might agree, nine million may be low or conservative. But it's still a big number and a huge increase and we should look at that paper as a win for our cause. At what point does a disease become so common and severe people can't ignore it? Statistically maybe someone in congress has it. Actually I would think about four or more congresspeople should have it and 2 senators. Given the new percentages

 

[hapl808]

You can say that , and I might agree, nine million may be low or conservative. But it's still a big number and a huge increase and we should look at that paper as a win for our cause. At what point does a disease become so common and severe people can't ignore it? Statistically maybe someone in congress has it. Actually I would think about four or more congresspeople should have it and 2 senators. Given the new percentages

I absolutely think it's a win and obviously I want as much funding as possible - if we can send $40 billion to Ukraine to escalate a war with Russia, I think $40 billion should be spent on millions of Americans who are barely existing.

That doesn't mean I won't be skeptical of science. I say it often. Medicine is hard. Epidemiology is hard. I'm kinda out of it, but I glanced at Leonard Jason's article you linked. He cites 5% or 10% as the number that will develop ME/CFS from Covid I think.

As discussed earlier, Komaroff and Bateman estimated 10% of COVID survivors would develop ME/CFS [42]. To be conservative, we consider two scenarios – a 5% onset rate of post-COVID ME/CFS and a 10% onset rate. The former translates to 3.1 million adult and 0.7 million pediatric new cases of ME/CFS, and the latter to 6.2 million adult and 1.4 million pediatric new cases.

He's getting this from Komaroff and Bateman - two very respected researchers. But it's an arbitrary number. Komaroff and Bateman say they're being conservative, and I totally agree. They also say they're estimating based on vaccines reducing the number of infections to 25 million. I'm sure that made sense in Jan 2021, but obviously not how it worked out.

Again, they said they were being conservative and that turned out to be accurate with regard to infection. My point is not to be argumentative, just to be cautious and aware that these models are imprecise and may be underestimating things, or overestimating. Even with ME/CFS by ICC - someone with mild symptoms may be a productive member of Congress (ie. doing nothing at all) but someone with severe symptoms would be crying out for relief. When I was moderate, I kinda thought I was severe - until I found a more severe level.

Anyways, I don't know what I'm saying or why I'm bothering. I'm hoping for miracles, but I've been waiting 25 years and I haven't improved in almost a decade, so I'm rarely filled with rainbows or unicorns. Just in a shitty mood.

 

[Rufous McKinney]

ME/CFS was at 1.5 million before the pandemic,

and we are constantly told that ME CFS is largely undiagnosed. So how can these numbers be meaningfuL?

 

[frozenborderline]

and we are constantly told that ME CFS is largely undiagnosed. So how can these numbers be meaningfuL?

Those numbers aren't based on how many people they diagnosed with the disease.

Those numbers could be informed by sophisticated epidemiology like Leonard jasons which extrapolates from smaller groups that are nonetheless representative /random.

Especially for illnesses like me/cfs they don't count every case and their numbers aren't based on something like that, but they do have epidemiologists working on it who know that every case isn't counted and know how few specialists there are to even diagnose it well.

If the numbers were solely based on the initial cdc report after the original Tahoe outbreak I'd agree, but they've updated the numbers based on research and advocacy from me/cfs literate scientists and patient advocate groups.

The 9 million I mentioned is a good example of that. The scientists in question did due diligence and quickly worked up a new estimate of disease prevalence based on the pandemic effect on the disease.

 

[frozenborderline]

getting this from Komaroff and Bateman - two very respected researchers. But it's an arbitrary number. Komaroff and Bateman say they're being conservative, and I totally agree. They also say they're estimating based on vaccines reducing the number of infections to 25 million. I'm sure that made sense in Jan 2021, but obviously not how it worked out.

we know the vaccines aren't very effective against long covid ... but in the first part of the pandemic they were. This was a shortcoming I was going to bring up with the model but honestly I think the point is not that it's perfect. It's that it is good that it errs on the conservative side and even so shows huge increases in me/cfs. Big increases in the disease are good for us, as strange as it sounds to say. And we should hope for even bigger increases. But the scientists erring on the conservative side is good bc it means a) they are already showing huge increases even with very conservative estimates of percentages and b) that the science here won't be considered hysteria and overestimates by the public. Or by the press. Imagine if they said something like there are 20x the previous amount of me/cfs cases and then got proved wrong. It could be like the xmrv thing all over again.

Again, they said they were being conservative and that turned out to be accurate with regard to infection. My point is not to be argumentative, just to be cautious and aware that these models are imprecise and may be underestimating things, or overestimating. Even with ME/CFS by ICC - someone with mild symptoms may be a productive member of Congress (ie. doing nothing at all) but someone with severe symptoms would be crying out for relief. When I was moderate, I kinda thought I was severe - until I found a more severe level.

I'm not taking the models as gospel. I assume they're underestimating and I bet even Leonard jason thinks that. The reasons for being conservative are already listed above. 9 million is already a huge number, and a 4x plus increase in a serious illness in a couple years is more than enough to get peoples attention. So we don't need to aim higher without solid proof.

They explain their whole methodology, and I disagree that it's arbitrary. 5 to 10 percent is a bit low but it's not arbitrary. Its comparable to other infectious diseases like mono and how much percentage they cause to be long term incapacitated by me/cfs. They can always adjust their model and estimate in the future but it would've been worse to calibrate it too high.


As for being able to push through with a mild case--maybe. I found it hard to even work through college or do part time work which wasn't that strenuous when I was mild. But even if you look at the 25 percent that are severe, that's going to go up by 4x just like the overall number. It'll be a smaller number than 9 million but will still be substantial. Even 1 percent (and it'll be higher ) of people in the US having newly acquired severe vedbound level me/cfs could shut or slow things down.

Look, I'm very angry in general too and I'm not an optimist. The NIH is very resistant to change. But these scientists like Jason doing the prevalence estimates aren't part of the problem. And the problem is not that prevalence estimates or true prevalence are low. It will take a bit of time for the new reality for all of those sick people to sink in. And for them and their families to get desperate and decide to work on protesting or something. There's always lag time. In general it's an uphill battle for people like us in a political sphere where having a loud voice is important and we are too sick to be activists and fighters but at some point numbers have to mean something.

 

[frozenborderline]

and we are constantly told that ME CFS is largely undiagnosed. So how can these numbers be meaningfuL?

Because epidemiologists account for that. because Their studies and models aren't based on who has obtained a formal me/cfs diagnosis.

They're not all cdc people who dont care about this illness. Many of them have successfully shown the reality of it. One famous epidemiological victory was a study showing me/cfs is more prevalent in Nigeria, slightly, meaning no its not a yuppie disease which was a presumption before thorough epidemiology disproved it. I don't think its useless to do any kind of work on epidemiology just bc the target is a bit murky and there are confounding factors.

 

[frozenborderline]

absolutely think it's a win and obviously I want as much funding as possible - if we can send $40 billion to Ukraine to escalate a war with Russia, I think $40 billion should be spent on millions of Americans who are barely existing.

Honestly yeah I think the 40 billion would be better spent on the NIH budget but this is not how these things work... pretty sure defense packages are easier to push thru in a bipartisan way than disease spending so its not like it's one versus the other. They're politically different categories and it's not as simple as them coming out of the same pie.

I would also note that the funding for long covid Is already huge , like hiv aids level. Beyond my wildest dreams. And if they solve that rhey solve me/cfs too. But the rub is that as the statnews article I posted showed , the NIH is misspending some of the money. I mean the hard part should be getting it through congress and that already happened. The NIH now has this insanely huge amount of money for grants for studying long covid. That already happened. But political pressure is needed for them to not misspend it.

As much as I agree about not needing to spend 40 billion on some useless proxy war , the real issue right this second is how the NIH may be wasting rhe huge amount that congress allocated for them

 

[Marylib]

I don't have the brain cells to read all these long and detailed comments but I do understand the emotional reactions of people with ME who feel like dog shit because so much money is suddenly going to Long Covid. If the shoe were on the other foot, you would want that money spent on Long Covid too. At this point, it's just another name for a disaster we know all too well. Perhaps some with Long Covid can recover faster if they know what ME is, because they will already know you cannot push through it. I hope so. Some of those people in the first covid wave had no idea what hit them. This is likewise true of those who ended up with a shit storm from the vaccines. Human beings are social creatures and we need each other's good will to get well, or at least improve enough to get off the ledge from suicide.

 

[hapl808]

I do understand the emotional reactions of people with ME who feel like dog shit because so much money is suddenly going to Long Covid.

My comments can be summarized as mostly being in favor of a lot more money going to long Covid. I don't particularly mind if it goes to long Covid instead of ME/CFS since I think it's the same thing. As long as we can access any treatments or care, I don't care which column gets the win.

My complaints mainly come from trumpets and fanfare surrounding a painfully slowly trickled $1 billion to study a debilitating illness affecting millions of Americans, and the casual manner we throw $40 billion into escalating a war (I think we're already looking at raising that to $55 billion).

But hey, it's not like the last 10 'conflicts' we escalated ended badly for the people we were supposedly helping. I say conflicts because I don't think we've technically been at war since 1945, which is likely news to the people we were bombing.

Probably shouldn't be political, but Congressional funding is somewhat of a zero sum game even though it shouldn't be. Sadly, I worry that any funding will likely go to a newly built healthcare complex rather than productive research. The same way we spent a couple trillion bringing freedom to the Middle East, but in reality just funding Blackwater or warlords or whoever.

People often say we need to be more supportive and appreciative. I partially agree about those in research, but also feel that constructive criticism of power structures is important. HIV would not be under control today if activists didn't accuse Fauci of being a butcher, ruthlessly drag the NIH and gov't officials, and constantly advocate for better support and funding.