[Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

maple

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Is there a database that shows the titles of grant applications and the investigator, and whether that grant is successful or not? That would give an indication of the magnitude of the $ requiring.
 
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I'm not too informed on the whole research & funding effort but my god, reading this thread is depressing..

What baffles me is if there's so many people suffering from this illness, surely there must be someone, or a few, who has connections all the way up?

I mean, most of the people I know know someone with ME (excluding myself). Basically we just need one person in an extremely powerful position to get this illness or know someone who has it. How hard can it be? Just thinking out loud...
 

Alvin2

The good news is patients don't die the bad news..
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I'm not too informed on the whole research & funding effort but my god, reading this thread is depressing..

What baffles me is if there's so many people suffering from this illness, surely there must be someone, or a few, who has connections all the way up?

I mean, most of the people I know know someone with ME (excluding myself). Basically we just need one person in an extremely powerful position to get this illness or know someone who has it. How hard can it be? Just thinking out loud...
Anthony Fauci was asked about ME/CFS and covid, so he definitely knows about ME, his answer was that Covid research may help us. So even he is not willing to go to bat for us in even the smallest way.
 
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I mean, most of the people I know know someone with ME (excluding myself). Basically we just need one person in an extremely powerful position to get this illness or know someone who has it. How hard can it be? Just thinking out loud...
Agreewitcha

I"ve made numerous attempts to contact high level celebrities. We need a spokes person of Epic Proportion. Look at what Elizabeth Taylor did for Aids?

I think this fundamental lack of a strong diagnostic, plus the likelihood we have subtypes- has reduced us to entropy.

Kris Kristopherson has Lyme

Alicia Keyes neck is popping in her interview

Dr. Jordon Peterson can only eat Steaks

Justin Bieber- Imagine if WE COULD GET JUSTIN BIEBER..........
 
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Anthony Fauci was asked about ME/CFS and covid, so he definitely knows about ME, his answer was that Covid research may help us. So even he is not willing to go to bat for us in even the smallest way.
Sure, but if he would have, say, a niece with severe ME that might actually change things in a big way. A guy like him, or someone with similar power, needs to have direct exposure to how this can destroy someone's life is what I'm saying. That's all it takes IMO
 
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A guy like him, or someone with similar power, needs to have direct exposure to how this can destroy someone's life is what I'm saying. That's all it takes IMO
Fauci is historically implicated in our direct abandonment in the 1980s. (see Osler's web).

I believe in forgiveness, so Dr. Fauci- there is still time.

He has said our name a few times, so we are no longer entirely swept under the rug, similar to Dr. Francis Collins, NIH director.

There is a big wad of research funding right now: who is getting it? are we getting anywhere?

why is that so hard to figure out?
 
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I'm not too informed on the whole research & funding effort
I'm still willing to somehow agitate and rattle cages over NIH grant applications that weren't funded, that we need funded for nannoneedle studies.

I'd go find: my political contacts with the Feds. But I have zero info.
 
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Info at NIH suggests:

The public can obtain NIH Grants applications that were funded, via FOIA.

Unfunded, applications etc, we cannot FOIA

"NIH generally will withhold the following types of records or information in response to a FOIA request:

  • Pending competing grant applications
  • Unfunded new, renewal, and revision applications"
 

Oliver3

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Agreewitcha

I"ve made numerous attempts to contact high level celebrities. We need a spokes person of Epic Proportion. Look at what Elizabeth Taylor did for Aids?

I think this fundamental lack of a strong diagnostic, plus the likelihood we have subtypes- has reduced us to entropy.

Kris Kristopherson has Lyme

Alicia Keyes neck is popping in her interview

Dr. Jordon Peterson can only eat Steaks

Justin Bieber- Imagine if WE COULD GET JUSTIN BIEBER..........
Lady gaga has fibromyalgia.
I know the open medicine foundation made attempts to speak with her but her manage for whatever reason, kept blocking the attempts
 
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I know the open medicine foundation made attempts to speak with her but her manage for whatever reason, kept blocking the attempts
Is there any way we could get about 10,000 post cards begging- sent somehow to:

Gaga

Bieber (lyme, as I understand it).

Alicia Keyes

Maybe we go for 5. And we REALLY try to wake up somebody.
 
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with a website that is mildly critical of the NIH and how they are ignoring good researchers and this whole disease,
thats what I want to focus on, but I have nothing to articulate- other than the rumors of turned down grants.

Whats the grant number?

title?

We can't see draft NIH grants/ can't be FOIA,

How do you build a case with- rumors?
 
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thats what I want to focus on, but I have nothing to articulate- other than the rumors of turned down grants.

Whats the grant number?

title?

We can't see draft NIH grants/ can't be FOIA,

How do you build a case with- rumors?
It's not a legal case, it's a moral one. The amount of funding for the disease is like 100th if the disease burden. There are objective numbers for what it should be. and we have Janet's and Ron's testimony about grants turned down. I may not have the energy to finish the job. But if I did, I'd make a website pleading 5o dr koroshetz to help better. Like the not enough 4 ME campaign. I liked that ,
 
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It's not a legal case, it's a moral one.
Yes, its a moral argument....ethics, they took our tax monies but we got- Application Denied.

turned down for idiotic reasons, to me, suggests 1) we can't over come the critique, because we can' t overcome idiocy; 2)they may try to address the idiocy, and resubmit of course, next round whenever those circle back.

Meanwhile whose grants ARE getting funded? Who will solve this with our $1.13B?
 
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.maybe we should kidnap them and hold them to ransom til she agrees to promote the cause..
Joke!!!!
well we know she loves her dogs. This is a starting place.

we put on the postcards- a photo of a charming dog (similar to hers) held in the arms of a SEVERE. ME patient who also loves the Lady.

The dog long to walk with her owner. Her owner is sick with our Unpopular Illness. ...
 

Alvin2

The good news is patients don't die the bad news..
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Yes, its a moral argument....ethics, they took our tax monies but we got- Application Denied.

turned down for idiotic reasons, to me, suggests 1) we can't over come the critique, because we can' t overcome idiocy; 2)they may try to address the idiocy, and resubmit of course, next round whenever those circle back.

Meanwhile whose grants ARE getting funded? Who will solve this with our $1.13B?
We don't have $1.13 Billion dollars, we have Zero dollars.
Big. Fat. Zero.