John Gabor

Oh! What a tangled web we weave when first we practice to deceive.

Sir Walter Scott

[Eileen 🔊 @TurnItUp4ME]

@oslersweb @NIH Yes, Hillary, NIH is overflowing with promise and funding. 🚫💰🚫

[Eileen 🔊 @TurnItUp4ME]

@oslersweb True, @NIH continues to withhold funding for #MyalgicEncephalomyelitis. Watch this video clip of me having just asked for 40 million for funding and witness Dr. Maire/NIH shut me down (1/2)
https://t.co/aH3alNq6vc

[Carrie @carpat21]

@JKBurmeister @TurnItUp4ME @oslersweb @NIH Ten million is a spit in the wind for them. Withholding funding was never a budget issue. And blowing up is an abuse tactic—so maybe next time the desperately ill patients will be afraid to ask.

[Jeannette Burmeister @JKBurmeister]

@TurnItUp4ME @oslersweb @NIH Imagine your life's purpose being to block funds for a group of debilitated patients, for decades, and dealing with it by being angry at patients who are just asking that you do your job as a civil servant! Making a difference alright--for the worse.

[Eileen 🔊 @TurnItUp4ME]

@JKBurmeister @oslersweb @NIH We always asked for funding commensurate with the economic burden of ME and the dire needs of the patients. And all they (NIH) gave us was an empty Walitt!!!!!

[Jeannette Burmeister @JKBurmeister]

@TurnItUp4ME @oslersweb @NIH Maier blew a fuse over ten million measly dollars. They should have spent that amount monthly--at the very least. The contrast to LC takes my breath away, and still there is no money for us. Nothing other than blowing $8 million on allowing Walitt to live out his childhood dream

[Eileen 🔊 @TurnItUp4ME]

@GabbyKlein1 @oslersweb @NIH Your analogy of a "game" is so true, Gabby. Even the Chairman tells me not to look around because it is "...not The Price is Right." He didn't need to remind me...the price has ALWAYS been wrong!

[Gabby Klein @GabbyKlein1]

It seems to me, Eileen, that they were teasing you about coming up with a number, when they knew very well that there is no chance for it to go through. For them, it was all a game. For us, ME patients, it’s everything. Our lives literally depend on NIH properly funding this serious neglected disease!

[Eileen 🔊 @TurnItUp4ME]

@oslersweb @NIH Next, watch this video of me asking for a "realistic" amount of funding for ME and the meltdown it elicits from NIH in Washington (2/2)
https://t.co/U2cs1BcxZ8

[Eileen 🔊 @TurnItUp4ME]

@KCSteckel @No_ME_Denialism @JKBurmeister @MEAdvocacy Watch this video of our Advisory Committee meeting; I make 2 recs to CDC: (1) Study & include severe ME patients in research (2) Study cluster outbreak patients. Unger/CDC is "aware" we need to include severely ill patients in studies but like Nath's NIH study did NOT do that.🛌

[Gabby Klein @GabbyKlein1]

They paid to erase the true disease, except the patients suffering from ME have not disappeared. We are just getting sicker and NIH/CDC are derelict in their charge to care for sick patients.

[Eileen 🔊 @TurnItUp4ME]

@JKBurmeister Thank you, Jeannette. In the years I worked on the Advisory Committee (#CFSAC) in Washington, DC, I can definitely tell you; NIH did not play nice. 🏛️🎙️🤐

[Jeannette Burmeister @JKBurmeister]

I wrote an in-depth analysis of the history of the NIH intramural ME study and how the outcome--a psych label for ME--was predetermined by NIH's putting extremist ME denier Walitt in charge.

https://t.co/q1QbbUbPZF

[John Gabor @JohnGaborME]

@JKBurmeister @TurnItUp4ME @No_ME_Denialism @HHSGov Their intent has been clear ever since CFS was created. They have consistently obfuscated at every opportunity including creating those opportunities. It has nothing to do with science, not even sloppy science.

[Eileen 🔊 @TurnItUp4ME]

@JKBurmeister @No_ME_Denialism @HHSGov Yes, too many definitions that THEY (CDC & NIH) created or bought (IOM/SEID) for a small sum. Their investment was small, but it paid off in spades for HHS. 💰⚰️

[Jeannette Burmeister @JKBurmeister]

@TurnItUp4ME @No_ME_Denialism @HHSGov And then Nath has the nerve to say that nobody knows what ME is because there are too many definitions out there. They really have no shame.

[Eileen 🔊 @TurnItUp4ME]

@JKBurmeister @No_ME_Denialism @HHSGov The odds are slim to NONE. For decades, NIH/CDC displayed derogatory views toward ME patients & advocates by creating faulty definition & name, underfunding the disease and coopting the media to convey their anti-scientific propaganda. Facts not conspiracies. 🔎📂

[Jeannette Burmeister @JKBurmeister]

@TurnItUp4ME @No_ME_Denialism @HHSGov Your description fits what Nath calls "fear" of "government conspiracies" What are the odds that this disparaging view of ME patients and advocates did not get in the way of objective science?

[Eileen 🔊 @TurnItUp4ME]

@No_ME_Denialism @JKBurmeister Yes, the Federal Advisory Committee was a channel for advocates to testify & raise concerns/objections re: actions/plans of @HHSGov. Most was dismissed but became part of the official gov record so HHS could not CREDIBLY claim nescience or that they had advocate/patient buy-in.🎙️

[Jeannette Burmeister @JKBurmeister]

Always ask, what’s in it for somebody? Financial gain (NIH funding, donations), a seat at the table, rubbing elbows w/ TPTB, starting a career after miraculous recovery, etc.? Follow advocates who get nothing out of it and are fighting the good fight at their own expense. 3/4