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NIH Tackles Neglected Mystery Illness

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
http://www.the-scientist.com/?artic.../title/NIH-Tackles-Neglected-Mystery-Illness/



NIH Tackles Neglected Mystery Illness

It has been more than seven months since the National Institutes of Health pledged increased funding for myalgic encephalomyelitis/chronic fatigue syndrome research. Here is how some of that money will be put to use.

By Tanya Lewis | June 14, 2016


Hundreds of thousands of people suffer from an illness that causes them to feel overwhelming fatigue that doesn’t improve with rest, joint and muscle pain, problems sleeping, and mental fogginess, all of which can severely disrupt their lives. Known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), the condition affects more than 1 million people, according to the US Centers for Disease Control and Prevention, representing an economic burden of up to $7.2 billion.

For decades, physicians and scientists dismissed what’s now typically called ME/CFS as trivial or psychosomatic, a fact not helped by its unknown cause and broad set of associated symptoms. Meanwhile, diagnostic tests and treatments have remained out of reach.

But last fall, the National Institutes of Health (NIH) announced an effort—prompted by an Institute of Medicine report—to reinvigorate research on what NIH Director Francis Collins called “one of the most challenging . . . human illnesses that science has yet to unravel.” The NIH funding commitment involves an intramural study on ME/CFS and the reinvigoration of a multi-agency working group led by researchers at the National Institute of Neurological Disorders and Stroke (NINDS)...
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
the condition affects more than 1 million people... $7.2 billion.
So what they are saying is that each person with CFS causes an economic burden of $7200 (a year presumably). This makes no sense at all. I am mild and still work but it still costs me ~15000 in lost earnings per year.

I think a minimum of $20000 in lost wages per year would be more accurate putting the costs at 20 billion minumum.

This doesn't include the lost wages of the unpaid caregiver(s). If that is included the cost could easily be double that - 40 billion a year in lost wages. This is not counting any healthcare costs incurred

Where do they get their 7.2 billion figure? It makes no sense to me
 

Justin30

Senior Member
Messages
1,065
Yes.
Also, the contrast between the OMFs sense of urgency versus Naths opinion that it will take 3 years before a paper is published, certainly not a fast track project.

I agree with you there.....why dont they just throw the money on the table for the neglect and get this ball rolling some people deteriorate in 3 years.

The lack of urgency for millions dieing slowly.

Give Dr Davis the money already.
 

Kati

Patient in training
Messages
5,497
I agree with you there.....why dont they just throw the money on the table for the neglect and get this ball rolling some people deteriorate in 3 years.

The lack of urgency for millions dieing slowly.

Give Dr Davis the money already.
It's interesting to make a comparison with infectious disease emergencies, such as Ebola and Zika. The publications regarding Zika started flowing almost instantly. MIllions in funding was found instantly. Researchers frenzy was also instant.

And then look at us. 30 years and politicians, most researchers, most physicians are still sitting on the fence or comfortably suntanning on the other side of the fence...

We are always at the bottom of the priority list.
 
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Justin30

Senior Member
Messages
1,065
They sure did hide this one along with lyme, and infectious onset POTS.

I just dont get how the outbreaks that happened all over the country were just hidden when clearly there was an infectious onset.

Was affecting nurses, Drs, Children, school teachers, etc....just blows my mind.

In north America alone you have potentially over 2 million sick....its just so messed up
 

HowToEscape?

Senior Member
Messages
626
So what they are saying is that each person with CFS causes an economic burden of $7200 (a year presumably). This makes no sense at all. I am mild and still work but it still costs me ~15000 in lost earnings per year.

I think a minimum of $20000 in lost wages per year would be more accurate putting the costs at 20 billion minumum.

This doesn't include the lost wages of the unpaid caregiver(s). If that is included the cost could easily be double that - 40 billion a year in lost wages. This is not counting any healthcare costs incurred

Where do they get their 7.2 billion figure? It makes no sense to me

D-mn right it makes no sense. Going from an income which would be about $150K today to receiving a fraction of that in disability as over twenty times $7200. The latter figure would be the loss from someone who was less productive in their job, or out for a couple weeks per year (note that the value of lost productivity > lost net pay to worker). The drive to minimize, deflect and demean this problem has not ended.
 

Kati

Patient in training
Messages
5,497
Yes, as much as things may or may not change, it's a question of power and influence. Until this community has amassed the political capital to force change, we won't get the type or degree of change we want, or, at least, we won't be the driving factor in that change.
Speaking of political capital, I just met my member of parliament today. I suggest that everyone does the same!

(Back to my crash:bang-head::bang-head::bang-head::ill:)
 
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worldbackwards

Senior Member
Messages
2,051
So what they are saying is that each person with CFS causes an economic burden of $7200 (a year presumably). This makes no sense at all. I am mild and still work but it still costs me ~15000 in lost earnings per year.

I think a minimum of $20000 in lost wages per year would be more accurate putting the costs at 20 billion minumum.

This doesn't include the lost wages of the unpaid caregiver(s). If that is included the cost could easily be double that - 40 billion a year in lost wages. This is not counting any healthcare costs incurred

Where do they get their 7.2 billion figure? It makes no sense to me
But just think how much we put into the shit alternative therapies market. Reflexologists would go bust left, right and centre without ME :)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
So what they are saying is that each person with CFS causes an economic burden of $7200 (a year presumably). This makes no sense at all. I am mild and still work but it still costs me ~15000 in lost earnings per year.

I think a minimum of $20000 in lost wages per year would be more accurate putting the costs at 20 billion minumum.

This doesn't include the lost wages of the unpaid caregiver(s). If that is included the cost could easily be double that - 40 billion a year in lost wages. This is not counting any healthcare costs incurred

Where do they get their 7.2 billion figure? It makes no sense to me

I guess they want to bury the true cost its costing along with everything else. (unless they counted those with just simply some fatigue as having ME/CFS in this).

That $7200 would just be my ambulance costs a year (or they may be more then this..it can be over $1000 for one trip to hospital depending on where I are when I need to go to hospital).

Maybe someone should do a study on the costs of having severe ME seeing 25% of us are in this boat. It would make it harder to deny just what an issue this illness is.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Speaking of political capital, I just met my member of parliament today. I suggest that everyone does the same!

:star: Thank you, @Kati ! :star:

I've been trying to set up a meeting with my local congress representative.

I started the process in mid-May hoping I'd meet sometime in June. No such luck. Things move VERY slowly.

It looks like I'm going to end up meeting with a staffer instead. The alternative was waiting until maybe Aug to meet with my representative.

(Back to my crash:bang-head::bang-head::bang-head::ill:)

Hope you are feeling better soon! I had big crash yesterday, feeling a bit better today. :)
 

Kati

Patient in training
Messages
5,497
:star: Thank you, @Kati ! :star:

I've been trying to set up a meeting with my local congress representative.

I started the process in mid-May hoping I'd meet sometime in June. No such luck. Things move VERY slowly.

It looks like I'm going to end up meeting with a staffer instead. The alternative was waiting until maybe Aug to meet with my representative.

Hope you are feeling better soon! I had big crash yesterday, feeling a bit better today. :)

Meet with the staffer and with congress person later, if possible. See if he/she is on FB or Twitter.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Meet with the staffer and with congress person later, if possible. See if he/she is on FB or Twitter.
Yes, that's my current plan! But I'm not going to mention it to them. ;)

Also, it feels too hard for me to think about two meetings (or even more! I want to meet with my senators, too). One day at a time, one step at a time, etc.

I do send tweets about ME/CFS to my congress rep and both my senators from time to time. I try not to overdo it.

I've also sent email to them all. But the responses from all three (so far) have been form letters about how they support NIH, etc. The response letters don't even mention ME/CFS. It's as if their staff has not read the details of my email. They just see "NIH" and think, "Okay, send the generic NIH letter." I'm oversimplifying a bit, but not by much.

This is why I think a face to face meeting is so much better than letters/email/tweets when it comes to ME/CFS. Assuming I don't screw it up. :nervous:

I'm not shy or anxious or anything like that. I only worry about brain fog, not being convincing, not being able to answer questions in real time, etc. But I'll just practice as much as I can and then hope for the best.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I just realized that I have taken this thread way off topic. Sorry about that!

If any moderators want to move this to the thread talking about meeting with your government rep (I think there's a thread on that somewhere?) that would be fine. Or start a new thread.
 

Kati

Patient in training
Messages
5,497
Yes, that's my current plan! But I'm not going to mention it to them. ;)

Also, it feels too hard for me to think about two meetings (or even more! I want to meet with my senators, too). One day at a time, one step at a time, etc.

I do send tweets about ME/CFS to my congress rep and both my senators from time to time. I try not to overdo it.

I've also sent email to them all. But the responses from all three (so far) have been form letters about how they support NIH, etc. The response letters don't even mention ME/CFS. It's as if their staff has not read the details of my email. They just see "NIH" and think, "Okay, send the generic NIH letter." I'm oversimplifying a bit, but not by much.

This is why I think a face to face meeting is so much better than letters/email/tweets when it comes to ME/CFS. Assuming I don't screw it up. :nervous:

I'm not shy or anxious or anything like that. I only worry about brain fog, not being convincing, not being able to answer questions in real time, etc. But I'll just practice as much as I can and then hope for the best.
I was a bit nervous and I told him, but i had everything written in paper and we started like that. Things got fairly casual afterwards. I know my stuff, the stats, and I knew my slides. So that helped.

Remember they are human being too. Show figures. Graphs. Cartoons. Real life examples.

I left him with a paper copy of the presentation and emailed him the link to the PDF. If you are up for it, get pictures taken. Feel free to use my presentation in any ways if you want to.
 

Kati

Patient in training
Messages
5,497
I was a bit nervous and I told him, but i had everything written in paper and we started like that. Things got fairly casual afterwards. I know my stuff, the stats, and I knew my slides. So that helped.

Remember they are human being too. Show figures. Graphs. Cartoons. Real life examples.

I left him with a paper copy of the presentation and emailed him the link to the PDF. If you are up for it, get pictures taken. Feel free to use my presentation in any ways if you want to.

It helps to make it clear what you need from them.