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

[Marylib]

Oh - definitely. Advocacy is part of the story for sure. Hopefully advocates can keep pushing before the pushing itself makes them so ill that they can no longer function.

 

[frozenborderline]

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.

I guess some people think that long covid may distract from me/cfs but I think they have enough overlap if you solve one you dolve the other.

I mentioned that in this long discussion here :

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

We covered that in previous episodes but got into the specific breakdown of research funding and research in this one.

Anyway, I think the bigger problem is whether or not the long covid funding will even be spent well. Peolle are worried about whether it takes away from me/cfs funding, but I assure you all a bigger problem, as mentioned in the podcast and article, is that while congress allocated the funding in a huge amount, the NIH is obscuring how they're using it and may manage to fuck up something that is almost impossible to fuck up. @hapl808 @MonkeyMan @Hip @Pyrrhus

 

[frozenborderline]

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

Dude you're worried about the wrong thing

1 billion is HUGE. The problem is that, as I addressed in that podcast and as addressed in the statnews article, despite congress giving nih the 1 billion , the NIH Is dragging their feet on spending it. Pressure needs to be applied.

1.15 billion is way bigger than anything that we could've hoped for for me/cfs ! I mean come on... that's almost as much as hiv Aids gets which is huge luxury amount.

You look at Multiple sclerosis or lupus or similar autoimmune diseases which have bad quality of life and no cures yet and only a couple of drugs. They don't get even close to a billion. They don't get half a billion even.

Asking for more than a billion shouldn't be a goal. The goal should be to make sure the billion is spent. Youre right to be mistrustful of that system but you're being critical about the wrong thing. Its a miracle that congress allocated that much for an illness similar to me/cfs . I wouldn't have guessed that would happen a couple years ago.

The thing to be worried about is not that that's too little money. It's that the nih could find a way to obscure how they spend it or even not spend it at all and claim some bullshit that they didn't get enough grants. The amount I would've said a year ago would've given me hope if just given to me/cfs as a disease is 100 million a year. That's not huge but it's far more than 15 million and it would be a start ... closer to serious illnesses. But what I thought would be really hopeful , not just a little bit hopeful, is 500 million. Now there's 1.15 billion for long covid. The problem is how they spend it. Please just read the statnews article and listen to this podcast:

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

And the previous ones in the series. This one covers all the angles on the spending. It was recorded months ago but still. It had an argument with someone who is more cynical (me) versus someone who is more hopeful. You should listen to it.
.we are close to the same viewpoint but I think yorue looking at that money wrong. It's actually a tremendous amount. Not enough for reparations for how they treated us in the past but still a lot. But it is NOT enough if they don't SPEND it right.

If you're able to walk and or have a caregiver that can take you you should go to the protest in DC. It's the first one to involve civil disobedience. It's the first militant and really serious action by MEACTION

 

[frozenborderline]

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

Military industrial funding is not really something that will be opposed by any number of people in numbers enough that it will change. So it's not as if it's plausible that there's a zero sum game we can play to take funding that would go to Ukraine and put it in nih funding. Morally I agree with you but it makes no sense pragmatically. Most military spending packages especially for things that are billed as humanitarian interventions are just going to pass with a few protest votes and nearly unanimous congre3ssional backing.

So on a pragmatic level its barking up the wrong tree to compare them.

I dont know if you understandwhere im coming from bc i tend to be very cynical and critical and i am basically dying of this illness and am not satisfied with crumbs but 1.15 billion is actually a lot as these things go. Listen to the podcast. Read the articles I sent. It's not enough but it's a substantial start and is far from the insulting 15 million we usually get for me/cfs.

But i assure you im not giving them credit for every tiny thing. I mean i hate that we are giving them so much money to spend on more bloodshed and forever wars instead of resewrch on disease and ecological issues. But this is beyond my control.

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.

I'm not saying what I say bc I lack criticism of the powers that be. I have a whole web project I've been working on dedicated to critique of the NIH officials screwing us over. But I've been too sick to do it. I am a staunch advocate for the kind of militant activism hiv/aids patients did that you're talking about. But they didn't just say stuff on forums that was slightly negative about the government. They said all that stuff to the bureaucrats faces and chained themselves to doors in their offices. I don't blame you if you're physically unable to do that but nothing changes unless someone does that.

The only reason we're getting that 1.15 billion is a historical quirk and crisis that led to a moment of big spending in covid in general where people could slip in some spending on long covid bc ifs related to covid and there was a large spending bill. Anyway to get more spending like that we need big protests and civil disobedience. Not just online talk. I'm bedridden. I should've protested when I could. But I'm trying to get family to. To go and get arrested and film it. Anyone on here who can walk or even be wheeled to a protest without crashing should do this one. Anyway again, th3 1.15 billion IS something to celebrate and that's coming from someon3 who thinks that koroshetz and fauci are murderers bc they are leaving us to die of this disease. I'm very extremely critical of the NiH but that is a number to celebrate. But step 2 is that they have to actually hand out the full amount in grants and not waste it. That's where public pressure and protest comes in again.

Anyway, Go to this protest and Listen to this full conversation on that news

 

[MonkeyMan]

The irony of all this is that, if the powers that be (NIH and the pharmaceutical industry) had given a damn about ME/CFS patients 35 years ago, and not sidelined us for all this time, Long COVID patients would likely have effective treatments available NOW.

 

[Rufous McKinney]

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

I don't think thats true.

This study, for instance concludes:

"This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. However, we observed the prevalence rates are widely varied particularly by case definitions and diagnostic methods. An objective diagnostic tool is urgently required for rigorous assessment of the prevalence of CFS/ME."

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0

 

[PhoenixDown]

estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994

The CDC 1994 definition is fraudulent as it does not exclusively recruit patients who suffer an adverse reaction to exercise (real ME). 0.89% seems way too high.

For example this study (https://pubmed.ncbi.nlm.nih.gov/21794183/) gives a prevalence of 0.19% based upon the CDC 1994 criteria which I don't classify as being real ME. Even with that too broad criteria that would make only 129,865 ME patients in the UK, just over half of 250,000 UK ME figure that is often quoted.

Inflating the numbers is really bad for credibility of real ME patients. If there are over 100,000 misdiagnosed as having ME all claiming exercise didn't worsen their condition or even led to improvement, it's going to make us sound like delusional conspiracy theorists.

 

[Rufous McKinney]

If there are over 100,000 misdiagnosed as having ME all claiming exercise didn't worsen their condition or even led to improvement, it's going to make us sound like delusional conspiracy theorists.

I'll always wonder because I was sick this WHOLE TIME but classic PEM did not occur until a few years ago when it worsened....

so what name would I have called it, if PEM was mandatory? I have no idea. ITs been Eppstein Barr my whole life.

 

[Marylib]

I a

I'll always wonder because I was sick this WHOLE TIME but classic PEM did not occur until a few years ago when it worsened....

so what name would I have called it, if PEM was mandatory? I have no idea. ITs been Eppstein Barr my whole life.

For a name, I always liked Ramsay's Disease.

 

[PhoenixDown]

so what name would I have called it, if PEM was mandatory?

That's a good question. I believe there should be a separate diagnosis for those who suffer harm from exercise, I think SEID is the best available name but I am open to suggestions.

For a name, I always liked Ramsay's Disease.

That's also good.

 

[Rufous McKinney]

Ramsay's disease! yeah-

only I started back in 1962........

Chronic Mono- I think I'd call it that sometimes....

 

[Rufous McKinney]

I think SEID is the best available name but I am open to suggestions.

thats my actual recent Diagnosis: when I stumbled by mistake into a new Doctor, at the end of our 45 minute new meeting.

"She has SAD" he announced...to his nurse....All Excited....

(I thought he meant Seasonal Affective Disorder)....

Now, we didnt' really do much of anything called "testing".......

My doc liked that name alot.

 

[hapl808]

I've had PEM for around 25 years, but I was more concerned with post viral GI symptoms so I just ignored my PEM or thought it was food related or whatever. I think there's a huge difference with PEM when mild or even moderate compared to severe. I used to feel super run down the day after any major exertion, but I thought I just recovered slowly. As I got worse, the 'run down' got more and more severe.

Until we have real diagnostics, it's all semantics and arbitrary criteria.

 

[BrightCandle]

I'll always wonder because I was sick this WHOLE TIME but classic PEM did not occur until a few years ago when it worsened....

so what name would I have called it, if PEM was mandatory? I have no idea. ITs been Eppstein Barr my whole life.

I had a bunch of symptoms early on and no obvious PEM, I presume I was too mild and too tired and fatigued to get to the limit to kick it off until they forced me to exercise. So for multiple early years I didn't appear to have PEM, it wasn't until they started exercise therapy I finally crashed and found out I did have PEM. I still didn't realise what it was then either it took a bunch of small crashes and then a really big one before it became clear I had PEM and ME/CFS. All I lacked early on was PEM.

 

[Rufous McKinney]

So for multiple early years I didn't appear to have PEM, it wasn't until they started exercise therapy I finally crashed and found out I did have PEM.

I"d have episodes...."flairs"...during the mild era. I recall the time in 1993, I went to some new doctor: do I have Mononucleosus again? (he said: take a yoga class)

so that suggests I did not consider CFS to be a thing I had.

But something I was doing was pacing, without realizing it. I would only let myself schedule one meeting...and stay home and rest after wards because somehow they wore me out- (driving, freeways, travel, not home, eating in restaurants).

I've had PEM for around 25 years, but I was more concerned with post viral GI symptoms

the GI issues seem to run my life....... it gets really old.

Blame the food: a theme of years. While I still blame the food, I do so less often now that I grasp all these other complications...neurological, immune, etc.

 

[Dakota15]

RECOVER shared a "Post-Infection Illness Expert List" after several patient advocates asked for follow-up when NIH/NYU/RECOVER touted receiving advisory help.

It's listed on the bottom of the FAQ of the RECOVER site. Sharing for a line of sight.

https://recovercovid.org/docs/508C-PostInfectionIllnessExpertList.pdf

 

[Rufous McKinney]

"Post-Infection Illness Expert List"

doesn't look like any of those folks see sick patients. They do studies and more important things that see an individual patient.

 

[Dakota15]

…that was your takeaway here? This is the RECOVER Initiaitve. It’s for research purposes.

 

[Rufous McKinney]

…that was your takeaway here?

sorry I did not understand the post,and know nothing about RECOVER.