Updates on Long covid NIH funding and concerns from advocates

[frozenborderline]

The NIH seems to drag their feet even when congress literally hands them a huge pile of money. It really makes me wonder if it would even matter if our disease got huge amounts of funds , as even if congress allocated it, the NIH has to care enough enough spend it well... this is really concerning. They actually siphoned some of the money to pay for an unrelated thing , housing for immigrants. It's absurd

https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/
@Hip @pattismith @Ben H @Janet Dafoe @Learner1 @Murph @Wishful

 

[frozenborderline]

 

[Alvin2]

This also means they are lying to us when they say they have no money for ME/CFS research.

 

[frozenborderline]

 

[frozenborderline]

History repeats itself. The cdc took the meagre funds for me/cfs awhile back and spent them on something entirely different, and just got a slap on the wrist

 

[frozenborderline]

 

[frozenborderline]

This also means they are lying to us when they say they have no money for ME/CFS research.

Yep. Where there's a will there's a way. If they wanted to pressure congress to fund me/cfs , or if they wanted wanted shift some funds around internally to help me/cfs they almost certainly could. Unaccountable bureaucracy

 

[Learner1]

The devil is in the details. Unfortunately, though we sure some of the same symptoms, it has become clear that many of us have very different diseases than others. Or rather, there are about 25 common problems, that each of us has in different groupings - one person has three of the problems, and another person has seven, and someone else may have 12. There is ample information out there to trouble shoot and diagnose and figure out what's going on, and put together a treatment plan, but it has to be individualized medicine. The NIH doesn't seem to be working on that, they seem to be trying to figure out what is driving the illness overall, but they don't seem to be doing much for treatments. Looking at functional medicine and taking an individualized approach is more fruitful, and we can do that without the NIH.

 

[frozenborderline]

Looking at functional medicine and taking an individualized approach is more fruitful, and we can do that without the NIH.

I'm surprised to see you say that as I have seen you advocating for increased research funding and speed in the past. Whether or not they investigate many subgroups , it's always possible thwt research from a similar illness could help another illness... in my opinion it is hard to mess up with that much money , except if they basically don't spend it on research basically at all, which seems the direction they're sort of going. Which seems deliberate.

We all have different ideas of what we think should be researched, but I'd bet that doing general deep phenotypic research will help all of us whether your or my theory is closer to the truth .

 

[Learner1]

I'm surprised to see you say that as I have seen you advocating for increased research funding and speed in the past.

I don't at all think that's the main thing I've been advocating for. I care about getting more patients better faster, and think that's what we should be advocating for. While I think research and more funding for it can help, I think we already know an awful lot, which should be being used clinically to help patients. I find it egregious that the majority of medical professionals are not terribly curious, do lousy detective work, and only want to help patients they already know the answers for. The years of formal education have made many rule followers who only color inside the lines, and they cannot comprehend that a patient may have 10 or 14 or 23 ICD10 codes, and they can't organize a diagnostic and treatment approach to figure out what's wrong and gradually normalize the patient. And so patients remain ill...

We need to be advocating, not so hard for more research, but for individualized medicine, which means doing thorough diagnostic investigation of all causes, genetic or environmental, and then applying a phased and iterative treatment plan. And to have insurance coverage for it.

 

[hapl808]

We need to be advocating, not so hard for more research, but for individualized medicine, which means doing thorough diagnostic investigation of all causes, genetic or environmental, and then applying a phased and iterative treatment plan. And to have insurance coverage for it.

Interesting viewpoint. I'm not sure which is less realistic. What you're describing might or might not be able to help a majority of people (I have no idea), but it's so far from the current view of insurance, medical education, medical practices, and the general practices of physicians.

 

[Learner1]

Interesting viewpoint. I'm not sure which is less realistic. What you're describing might or might not be able to help a majority of people (I have no idea), but it's so far from the current view of insurance, medical education, medical practices, and the general practices of physicians.

Well, that's why most of us are still sick. The current view needs to change.

 

[wabi-sabi]

I can't say I really begrudge any money or care going to these children.

 

[Rufous McKinney]

but for individualized medicine,

I was listening to this cutting edge Investments Person.

He was saying all this is just poised to happen everywhere and for most of us, really soon. And tons of money to be made in genetic type work, fixing illnesses and producing what we need.

He mentioned cotton. A fiber we need, which requires 80 tons of something water to make a little fiber.

Plus pesticides, we won't need those.

They will just have a group of genes grow the fiber, it will use very few resources, and require very little space.

Such changes in how we live could be truly profound to us rare disease folks, really soon!

He included a sort of tale of how a person with a laptop, and the genetics for COVID, in about 45 minutes created what they need that went to Moderna. And led to the vaccine.

it was really inspiring..I must tell my broker! (hah)

 

[Learner1]

I was listening to this cutting edge Investments Person.

He was saying all this is just poised to happen everywhere and for most of us, really soon. And tons of money to be made in genetic type work, fixing illnesses and producing what we need.

He mentioned cotton. A fiber we need, which requires 80 tons of something water to make a little fiber.

Plus pesticides, we won't need those.

They will just have a group of genes grow the fiber, it will use very few resources, and require very little space.

Such changes in how we live could be truly profound to us rare disease folks, really soon!

He included a sort of tale of how a person with a laptop, and the genetics for COVID, in about 45 minutes created what they need that went to Moderna. And led to the vaccine.

it was really inspiring..I must tell my broker! (hah)

Genetics is a part of the equation, but environmental factors are a bigger part in many cases.

Unfortunately, ME/CFS is not a rare disease.