Jeannette Burmeister @JKBurmeister Twitter profile | Pikagi

Pikagi

Jeannette Burmeister

@JKBurmeister

2,658

Followers

747

Following

114

Media

5,212

Statuses

Attorney (California, formerly licensed in Berlin, Germany), successfully sued NIH + HHS for ME-related FOIA violation (incl. all of $140k attorneys' fees)

https://t.co/MzUQOaGxU6

Joined August 2011

Don't wanna be here? Send us removal request.

Pinned Tweet

@JKBurmeister

Jeannette Burmeister

6 months

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.

Tweet card media

NIH Study: Walitt Strikes Again

It has taken NIH eight full years to complete their intramural study on Myalgic Encephalomyelitis (or what NIH calls “ME/CFS”) and publish their paper “Deep phenotypic of post-infectious myalgic en…

thoughtsaboutme.com

38

181

454

Last Seen Profiles

@bokeplokalmalam

@pleetsfps

@MegumiNaik77428

@DhaliaLuxeLive

@catwager

@nobilismedici

@LuisAlbertoCA_

@eqra011

@LeishkaMRodz

@E1slim

@hernan4911

@footballfactman

@masyu_manutd

@dangelo_hunter

@RRaakayee

@yoho4238031

@Manuloop

@HeatherSha7550

@BEFIRST_1009

@etcFatima

@JesseTh57495924

@Jrudzinsky

@iiiliii50

@garreth1131

@yuu_roro

@theotherajacks

@properteespace

@Raosahab217

@godly_kaa

@Angel_Dust668

@BDesniar

@saltuncensored

@NNT_Esports

@shakur_kase

@abukhaled1962

@ChacalEdge

@JKBurmeister

Jeannette Burmeister

7 months

Effort Preference is a way to test for anhedonia, the core symptom of Major Depressive Disorder. The unsupported introduction of Effort Preference to the ME world may well be laying the groundwork for more destructive studies, characterizing ME as a somatoform illness. FN 15

12

61

225

@JKBurmeister

Jeannette Burmeister

2 months

NIH’s Agency Intramural Research Integrity Officer (AIRIO) has begun assessing research-conduct complaints made by ME advocates against certain NIH investigators involved in intramural ME study. This is the 1st in a 4-step process. 1/n

28

58

216

@JKBurmeister

Jeannette Burmeister

6 months

Walitt ran NIH's intramural ME study. He practically sells Dianetics as science: "All experiences are psychosomatic." And NIH is like: With our reputation, who is gonna argue other than those Suppressive Persons, i.e., patients, who've failed to achieve a state of Clear? 1/3

45

52

206

@JKBurmeister

Jeannette Burmeister

7 months

Walitt: 2015: “discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as … [CFS]” 2024: “mismatch between what someone thinks they can achieve and what their bodies perform” RIP, science--💰

9

43

204

@JKBurmeister

Jeannette Burmeister

4 months

So healthy volunteers had POTS at high rates according to Walitt. In other words, they weren’t healthy after all. The related analysis should have been tossed. Instead, NIH just reported “no group difference.” NIH science would = failing grade in middle -school science class.

9

43

203

@JKBurmeister

Jeannette Burmeister

6 months

Thread: We have barely scratched the surface w/ respect to Walitt. The more you look, the more you realize just how deranged he is. This is whom NIH installed to run the intramural ME study and to be primary investigator for ongoing GWI & FM studies. This is not normal. 1/

11

59

190

@JKBurmeister

Jeannette Burmeister

7 months

So .... the IOM spent major 💵 on rebranding as "exertion intolerance," and now NIH finds that it's not intolerance at all but effort preference, i.e., aversion. That term was deliberately chosen for maximum harm by somebody on Team Tired. I wonder who. 🤔

10

32

183

@JKBurmeister

Jeannette Burmeister

7 months

You know what's suddenly become even more dangerous? An ICD code for PEM. Because PEM is what's being psychologized by NIH through the false and reverse-engineered claim that PEM is an aberrant experience of "fatigue" caused by faulty brain wiring.

16

41

179

@JKBurmeister

Jeannette Burmeister

3 months

Part 1 of my new 4-part article about NIH’s Effort Preference claim for ME. Read about how NIH has misrepresented their own data. Start w/ understanding that NIH built on Wessely’s work: ME as a disorder of the perception of effort.

Tweet card media

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 1)

The infamous intramural National Institutes of Health (NIH) paper on post-infectious Myalgic Encephalomyelitis (ME), a disease affecting many millions worldwide, purports to define the ME phenotype…

thoughtsaboutme.com

25

73

179

@JKBurmeister

Jeannette Burmeister

3 months

I analyzed NIH's data, and this tiny difference is what their Effort Preference claim is based on. NIH asserts that patients chose fewer hard tasks than controls in every single trial, which is completely false as demonstrated by my graph below.

Tweet media one

13

51

180

@JKBurmeister

Jeannette Burmeister

3 months

NIH’s malicious Effort Preference claim is propped up by a misleading manipulation of the EEfRT and a shameless misrepresentation of the EEfRT data. Read all about it in Part 2 of my new series.

Tweet card media

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 2)

This is Part 2 of a 4-part article on NIH’s Effort Preference claim. Part 1 can be found here: In this Part 2 of my 4-part series, I am analyzing the EEfRT data to show that they do not suppo…

thoughtsaboutme.com

16

59

175

@JKBurmeister

Jeannette Burmeister

6 months

Walitt is a menace living out some sick fantasy on the taxpayers' dime. It is time to launch an investigation into why he is at NIH, let alone as principal investigator on studies of patients he so clearly detests.

Tweet media one

16

41

168

@JKBurmeister

Jeannette Burmeister

3 months

Part 4 of my deep dive into NIH's pernicious Effort Preference claim. Read about the agency’s long-standing culture of intimidation & threats leading straight to the NIH study. Also: a Call to Action to get the study investigated & retracted.

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 4)

This is Part 4 of a four-part article on NIH’s Effort Preference claim. Part 1 can be found here. Part 2 can be found here. Part 3 can be found here. Readers who are not intricately familiar with M…

thoughtsaboutme.com

17

56

162

@JKBurmeister

Jeannette Burmeister

3 months

5/28/24 NIH Advocacy call: Nath continued his intimidation and vilification campaign telling advocates that they if they continue to be critical of intramural ME study, future ME research is at risk. Inspector General & Congress need to step in here.

13

37

161

@JKBurmeister

Jeannette Burmeister

10 months

This right here is the crux of the matter: fatigue. ME is not about fatigue, which is a sx of practically all serious chronic illnesses + some acute ones. ME is a disabling disease that affects many systems in the body and most definitely cannot be "overcome" w/ pacing.

@a_e_arthur

Amy Arthur

10 months

😭 I did, and it’s coming out in just over a month. If I help even one person with fatigue, it will all have been worthwhile.

0

0

16

8

31

159

@JKBurmeister

Jeannette Burmeister

2 months

Walitt slide: "It does not cause patients harm to be untreated"

Tweet media one

35

37

154

@JKBurmeister

Jeannette Burmeister

6 months

Walitt is right about one thing: the psychosomatic label can technically be applied to just about every disease because it's rooted in junk science. It's just that NIH carefully selects the patient groups on which it unleashes Walitt and his teachings: ME, LC, and GWI. 3/3

4

22

152

@JKBurmeister

Jeannette Burmeister

3 months

Part 3 of my 4-part analysis of NIH’s Effort Preference claim. Since the publication of the paper, NIH has been unsuccessfully straining to justify this exceedingly prejudicial label.

Tweet card media

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 3)

This is Part 3 of a 4-part article on NIH’s Effort Preference claim. Part 1 can be found here. Part 2 can be found here. In this Part 3, I will discuss the EEfRT as a psychological measure, NIHR…

thoughtsaboutme.com

17

51

151

@JKBurmeister

Jeannette Burmeister

7 months

No signs of muscle fatigue? If only the most revered biomedical research institute in the world could have known that you need a 2nd CPET. And why does Mestinon improve muscle weakness in ME? In a normal world, this weaponization of "science" would be career-ending.

Tweet media one

3

35

150

@JKBurmeister

Jeannette Burmeister

6 months

Kudos to @twoShaws for this find: Walitt is head of NINDS Interoceptive Disorders Unit. His focus: disorders characterized by aversive Sx after exposures, e.g. infections. Translation: the new & improved version of “false illness beliefs.” NIH unleashed him on ME, GWI, & LC pts.

Tweet media one

23

51

146

@JKBurmeister

Jeannette Burmeister

2 months

Nath constantly spews abhorrent things & misinformation about ME & ME patients, and then feels sorry for himself over the backlash. Ask yourself, why does @NIHDirector tolerate Nath's bigotry, and why has he done exceptionally well at @NIH ?

@scott_scientist

Scott Daniska

@scott_scientist

2 months

Very disappointed in Dr. Avi Nath's comments today: "The population affected by long COVID is so much larger, and symptoms are so much more severe compared to ME/CFS that we decided that what we should do is focus on long COVID." Would he like some photos of ME/CFS patients?

Tweet media one

82

62

435

4

32

142

@JKBurmeister

Jeannette Burmeister

3 months

There is no daylight between Wessely and NIH. The table shows how closely they are aligned on NIH's Effort Preference claim, which is *identical* to Wessely's theory of ME as a disorder of the perception of effort. Read more at the link below.

Tweet media one

@JKBurmeister

Jeannette Burmeister

3 months

Part 1 of my new 4-part article about NIH’s Effort Preference claim for ME. Read about how NIH has misrepresented their own data. Start w/ understanding that NIH built on Wessely’s work: ME as a disorder of the perception of effort.

25

73

179

7

52

141

@JKBurmeister

Jeannette Burmeister

3 months

Nath admonished @TurnItUp4ME demanding that she be "more appreciative” when she questioned the use of 3 vastly different definitions for patient selection in the intramural study. The advocate asked for rigorous science, and the scientist was offended.

7

39

135

@JKBurmeister

Jeannette Burmeister

3 months

NIH lied about the intramural study. They promised in 2016 that all patients will meet the CCC (only 53% did) and that all patients will be objectively tested for PEM (none were).

Tweet media one

4

47

136

@JKBurmeister

Jeannette Burmeister

2 months

I keep seeing intramural NIH paper, Nath, Walitt etc. characterized as ridiculous, preposterous, stupid, silly, etc. That is a dangerous minimizing of the devastating impact of that paper & ongoing NIH research. There is nothing silly etc. about people getting hurt & dying. 1/2

5

21

128

@JKBurmeister

Jeannette Burmeister

3 months

#1 On the topic of "healthy" volunteers, who were not so healthy. I created the table below re orthostatic issues. That's a significant # of orthostatic issues in both groups, but NIH hid behind the no-group-difference statement. Lots of Sx overlap btw ME and orthostatic issues.

Tweet media one

12

29

119

@JKBurmeister

Jeannette Burmeister

7 months

This here is so important. This study was basically a delivery vehicle for a new psych label. It was never going to be anything else with an n of 9 or 13 or 17. Thank you for stating it to clearly.

@CirclesFire

Sacred Fire Circles

7 months

The @NIH spent half a million dollars PER PARTICIPANT in order to label people w #ME as having negative "effort preference": implying we avoid activity by choice. They ignored decades of actual research to buy a new psych label. Exactly what Wallitt wanted. "Team tired," indeed.

3

40

147

3

33

116

@JKBurmeister

Jeannette Burmeister

4 months

Expect spin & damage control @ NIH Symposium tomorrow. A likely priority: asserting that effort preference isn't a psych paradigm. Remember that the NIH paper claims that ME is defined by a problem w/ motivation, so pls be careful not to get distracted by shiny objects.

3

29

109

@JKBurmeister

Jeannette Burmeister

3 months

A magnanimous ME patient has graciously offered to record an audio version of my article for those patients who are not able read it all. I’m touched by this generosity.

3

8

108

@JKBurmeister

Jeannette Burmeister

6 years

@jenbrea My young child will be an adult in 10 years. You may be at peace about her growing up practically without a mother. I am not. And she is not.

14

18

100

@JKBurmeister

Jeannette Burmeister

7 months

Just so we are clear, an n of 17 in a population of hundreds of thousands or millions is statistical gaslighting. How did this even get published?

6

18

106

@JKBurmeister

Jeannette Burmeister

6 months

Walitt 2013: “We have lots of other names for you depending on what you complain about. ... The complaint that predominates your existence is how you end up being named, which has nothing to do w/ your physiology.” He calls that “lumping and splitting.” Pick a dx, any dx! 1/3

16

27

104

@JKBurmeister

Jeannette Burmeister

2 months

I feel optimistic that the requirements of the Public Health Service Policies on Research Misconduct (42 CFR Part 93) & NIH Policy will be satisfied for stages 1-3; that investigation report will, consequently, find research misconduct; and that Deciding Official will concur. 4/4

6

11

105

@JKBurmeister

Jeannette Burmeister

2 months

This is who spoke at #IIMEC16 today.

@JKBurmeister

Jeannette Burmeister

6 months

Walitt ran NIH's intramural ME study. He practically sells Dianetics as science: "All experiences are psychosomatic." And NIH is like: With our reputation, who is gonna argue other than those Suppressive Persons, i.e., patients, who've failed to achieve a state of Clear? 1/3

45

52

206

19

29

105

@JKBurmeister

Jeannette Burmeister

4 months

Reminder of who was in charge of intramural ME study. Walitt's been trying hard to be less obvious since at NIH & to hide his long-held psych beliefs behind more palatable/scientifically sounding verbiage such as Effort Preference, but don't let that fool you; he hasn't changed.

@JKBurmeister

Jeannette Burmeister

6 months

Walitt ran NIH's intramural ME study. He practically sells Dianetics as science: "All experiences are psychosomatic." And NIH is like: With our reputation, who is gonna argue other than those Suppressive Persons, i.e., patients, who've failed to achieve a state of Clear? 1/3

45

52

206

5

36

103

@JKBurmeister

Jeannette Burmeister

5 months

I urge ME advcoates: now that everybody realized that trickle-down funding ofc won’t work for ME (as predicted by many), pls don’t make matters worse by grossly inflating ME prevalence numbers. 1/2

9

23

101

@JKBurmeister

Jeannette Burmeister

6 months

Just a few quick reminders re Walitt: NIH knew about Walitt’s proclivities. Advocates knew about them AND protested his appointment. So, yes they knew, and it is because they knew that they put him on our case. 1/

Tweet card media

Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?

NIH has tapped Dr. Brian Walitt as the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” (For terminology, please see the end…

thoughtsaboutme.com

6

27

100

@JKBurmeister

Jeannette Burmeister

3 months

Nath on his compensation for the intramural study. Remember, he is a salaried employee who is well compensated at $356,104 base salary + generous benefits. "Everybody has donated their time." “We don’t get anything.” “It’s’ not like I’m going to get any more money to do it."

12

21

97

@JKBurmeister

Jeannette Burmeister

2 months

#RetractNathPaper End of tweet.

7

29

97

@JKBurmeister

Jeannette Burmeister

4 months

New term for ME at NIH according to Koroshetz: “this problem.” As predicted, NIH claims that lay people don’t understand effort preference—>instead of retracting the study, NIH is all in on effort preference.

10

29

96

@JKBurmeister

Jeannette Burmeister

2 months

Please participate in this Call to Action to #RetractNathPaper See bottom of part 4 of my analysis of "Effort Preference." Thank you!

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 4)

This is Part 4 of a four-part article on NIH’s Effort Preference claim. Part 1 can be found here. Part 2 can be found here. Part 3 can be found here. Readers who are not intricately familiar with M…

thoughtsaboutme.com

4

42

95

@JKBurmeister

Jeannette Burmeister

2 months

Due to the large number of issues raised with the intramural study and the fact that we are several weeks into this process already, the assessment stage will likely take more than the usual 30 days. 2/n

1

12

94

@JKBurmeister

Jeannette Burmeister

2 months

2nd step: inquiry 3rd step: investigation 4th step: determination by the Deciding Official whether NIH accepts investigation report’s findings and recommended actions 3/n

1

9

93

@JKBurmeister

Jeannette Burmeister

4 months

Nath—with a straight face after putting a psychologizer in charge: * NIH & pts are partners and have shared goals * doubting NIH’s intention causes pain & suffering for and demoralizes NIH researches who did this study in addition to their real projects

10

22

91

@JKBurmeister

Jeannette Burmeister

2 months

I have as much of an issue w/ Nath attending IiME as I have w/ Walitt. Nath put Walitt in charge despite being aware of his track record, signed off on 1-day CPET & EEfRT, tainted cohorts, bad selection criteria, and effort preference w/ misinterpreted & misrepresented data

@AMoore864

AMoore

2 months

@JKBurmeister After inquiring with #IIME16 about why Brian Walitt was given a platform to speak, this was part of their response: “Due to Dr Nath having to attend another meeting that had come up at the same time as his scheduled presentation at IIMEC16 then Dr Nath asked Dr Walitt

3

0

21

4

26

92

@JKBurmeister

Jeannette Burmeister

2 months

A prestigious biomedical conference on the *science* of ME invited the inventors of Effort Preference for ME, which formalizes Wessely’s theory of ME being a false perception of effort & fatigue. If a US charity had invited Wessely, UK pts would be up in arms--rightfully so.

2

16

92

@JKBurmeister

Jeannette Burmeister

6 months

Eileen @TurnItUp4ME was on the Federal ME Advisory Committee. She knows how HHS, NIH, CDC, FDA and others are playing the game. Highly recommend following her.

@TurnItUp4ME

Eileen 🔊

6 months

@JKBurmeister Great blog, Jeannette! NIH @NIH is playing long game with Long COVID, like they did with ME: (1) Establish office for LC (2) Form Federal Advisory Committee (3) Fund research w/biased/corrupt staff (4) Redefine criteria (5) Rename LC (6) Disappear LC Sound familiar? Resist!! 📢

7

49

99

3

36

90

@JKBurmeister

Jeannette Burmeister

2 months

The paper with its effort-preference claim and other scientific malpractice is, of course, also outlandish, but it seems really important to stress the harm it's causing. 2/2

0

8

88

@JKBurmeister

Jeannette Burmeister

6 months

Wessely in 1994: "I will argue that M.E. is simply a belief, the belief that one has an illness called M.E.” Walitt in 2015: "The experience of fibromyalgia is very much real to the people who have it.”

8

21

86

@JKBurmeister

Jeannette Burmeister

6 months

NIH was aware of glaring Walitt's proclivities. So, they put him charge of so-called interoceptive "disorders." After the intramural ME study, he's running GWI & LC research at NIH. All just a coincidence, I'm sure, and not indicative of NIH's bias re those diseases. 🙃

2

7

84

@JKBurmeister

Jeannette Burmeister

2 months

Nath discussing trial design @ #IIMEC16 has got to be a delayed April Fools' Day joke. How to incl pts w/o ME & unhealthy controls? How to use a deeply flawed behavioral measure to adopt Wessely's theory of ME as disorder of false effort perception? How to avoid 2-day CPET?

5

23

84

@JKBurmeister

Jeannette Burmeister

2 months

I cannot stress enough how important it is to understand this. NIH counts on patients’ eternal hope against hope. They’ve gotten lots of mileage (4 decades) out of it already. It’s time to draw a line in the sand. We are fed up as hell, and we are not gonna take this anymore!

@TurnItUp4ME

Eileen 🔊

2 months

@arisonsned @JKBurmeister Advocates protested Walitt's involvement in the NIH Intramural ME Study since first announced. We inundated @NIH , Nath & Walitt with biomedical evidence of the disease. They are fully aware of the evidence but chose to publish their harmful paper. Signed. Sealed. Delivered.📧

4

26

65

5

23

82

@JKBurmeister

Jeannette Burmeister

2 months

Reminder: to Walitt Fibromyalgia and ME are the same thing, so what he says about Fibromyalgia applies 100% to ME. Watch him as a jovially tries to sell that snake oil to his audience.

@JKBurmeister

Jeannette Burmeister

6 months

Walitt 2013: “We have lots of other names for you depending on what you complain about. ... The complaint that predominates your existence is how you end up being named, which has nothing to do w/ your physiology.” He calls that “lumping and splitting.” Pick a dx, any dx! 1/3

16

27

104

10

23

82

@JKBurmeister

Jeannette Burmeister

4 months

The POTS & relatives among healthy volunteers should mean automatic retraction. The shameless guilt-tripping of advocates into laying off valid criticism & demanding of brownie points for not being unkind to participants felt desperate.

4

18

82

@JKBurmeister

Jeannette Burmeister

6 months

Remember that Walitt was the one who pre-screened ME patients for the intramural NIH ME study. Here is his approach to identifying patients: “If you say that you have fatigue more than pain, you might become a chronic fatigue patient [instead of a fibromyalgia patient]." 2/3

3

12

80

@JKBurmeister

Jeannette Burmeister

4 months

Why use an objective 2-day CPET to confirm PEM when you can muddy the waters with interviews instead?

3

20

80

@JKBurmeister

Jeannette Burmeister

7 months

I wish we had been wrong eight years go predicting something along the lines of Effort Preference, but we had a preview via Walitt of what they would find. The fix was in.

Tweet card media

Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits

Many ME/CFS* sufferers are covered by employer-sponsored long-term disability (“LTD”) policies. These policies almost universally limit LTD benefits to 24 months for disability caused—or even just …

thoughtsaboutme.com

3

23

78

@JKBurmeister

Jeannette Burmeister

7 months

And a one-day CPET is much worse than useless. Given what we know about day two, what honest scientist would skip it? (rhetorical question)

4

12

77

@JKBurmeister

Jeannette Burmeister

3 months

Nath was P.I. of a Long COVID study that was published 2.5 yrs after recruitment began & well before ME paper. Meanwhile, the intramural ME study took >8 years. It was quite literally *always* the last thing on Nath's to-do list. But pls make sure to thank him. #RetractNathPaper

5

19

75

@JKBurmeister

Jeannette Burmeister

6 months

Thank you for saying that, Christoph. It is surreal to watch lukewarm concerns raised when what's needed and appropriate are vocal and unequivocal condemnations.

@cstroeckw

Christoph Ströck

6 months

Christoph: "Let me say this loud and clear: This dude is batshit crazy - and it was always very obvious that he is. Putting Walitt in charge is a (planned) failure of @NIH , but large US #MECFS advocacy orgs eating that shit up is a failure too."

14

26

135

8

12

75

@JKBurmeister

Jeannette Burmeister

6 months

That history is important; it’s currently being rewritten. Many seasoned independent advocates & @meadvocacy_org strongly opposed Walitt & NIH and warned of the exact outcome we got--despite aggressive attempts to silence us, incl. by some who are now “disappointed” in NIH. 1/4

@KCSteckel

Colleen Steckel

6 months

@3tweetiebirds @JKBurmeister Me too... the momentum to do that was diverted by the "advocates" who strolled onto the scene in 2015 & helped promote the IOM report...

3

5

20

2

21

75

@JKBurmeister

Jeannette Burmeister

3 months

@TurnItUp4ME @NIH Including Wessely's ME theory in the paper w/ a new term that is more harmful than "chronic fatigue" is brazen even for Walitt. Nath has a lot to answer for. But wait, it gets worse. I had a hard time believing what I found. Stay tuned for Part 2.

4

16

73

@JKBurmeister

Jeannette Burmeister

3 months

@PeonyLeaves905 A high-ranking government researcher & bureaucrat trying to silence a pt group that his agency has neglected & harmed for decades. That’s what it's come to at NIH. He called intramural study "best study ever done" (twice), and I'm afraid he actually believes that.

5

12

74

@JKBurmeister

Jeannette Burmeister

7 months

NIH 30 yrs ago: “[T]he notion of a discrete form of a fatiguing illnesses will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome."

@AnneSpaceCoast

Anna Giuseppa🥰💙✝️❤️🦋🌹🌴🎀

@AnneSpaceCoast

7 months

@JKBurmeister @KCSteckel @dxrevisionwatch This FOIA, Straus Fukuda Correspondance The desired result is right there in the FOiA

Tweet media one

Tweet media two

2

3

13

8

23

73

@JKBurmeister

Jeannette Burmeister

7 months

@TurnItUp4ME @NIH This study was a hit job that everybody who paid attention saw coming eight years ago. People will get hurt or worse. The timing of the attacks by DCD's Unger in the press recently doesn't seem coincidental anymore, does it. A one-two punch.

6

21

74

@JKBurmeister

Jeannette Burmeister

7 months

Just a reminder of how the NIH lead investigator of the Effort Preference Study, Brian Walitt, views ME.

Tweet media one

Tweet media two

6

23

73

@JKBurmeister

Jeannette Burmeister

7 years

1. I support, w/o reservation, holding Prof. Crawley to account for her faux research+cruel use of her position by which she has caused danger+harm to children w/ ME. Categorizing as abuse legitimate efforts to stop her from inflicting further harm is plain wrong+irresponsible.

4

32

70

@JKBurmeister

Jeannette Burmeister

6 months

As suspected, the introduction of effort preference to ME likely is an attempt to protect the system against the LC tsunami. As obtuse as NIH tries to come off re ME, they absolutely knew what was coming with LC, and Walitt & effort preference are their responses.

@TeunkeA

Teunke Arvo

6 months

@JKBurmeister The timing is interesting, the interoception focus seems to be put on the rails for real in 2021 (see S4ME). In 2021 Walitt said they were expecting post-acute effects of Sars-Covid-2. Maybe the realization of the interoception project has to do with being able to park LC there?

Tweet media one

Tweet media two

Tweet media three

2

1

16

7

18

73

@JKBurmeister

Jeannette Burmeister

6 months

2/3

Tweet media one

5

5

71

@JKBurmeister

Jeannette Burmeister

2 months

Walitt proudly discusses his re-educating other MDs about FM being merely a normal life experience, not a medical entity & claims that they are relieved once he “says [his] message" b/c he gives them permission to be honest about their beliefs on FM, which allegedly match his.

12

23

72

@JKBurmeister

Jeannette Burmeister

3 months

One of my through-the-looking-glass findings is that ME patients actually performed better than controls on the EEfRT based on the reported data, completely debunking the Effort Preference claim, but there is so much more than that.

1

12

69

@JKBurmeister

Jeannette Burmeister

6 months

Compare and contrast Walitt's position with Wessely's in 1990: "The distinction between fibromyalgia and CFS is largely arbitrary and both overlap with affective disorder." 3/3

2

12

68

@JKBurmeister

Jeannette Burmeister

6 months

The likes of Walitt make you wonder, don’t they have better, more fulfilling, things to do w/ their professional lives than making it their mission to malign & gaslight pts? Pts need a protective order against Walitt et al. Instead NIH is platforming the Walitt Witch Trials. 12/

1

10

68

@JKBurmeister

Jeannette Burmeister

6 months

"Why are all the fights left to the activists?”—Larry Kramer Boy, does that sentiment feel familiar to ME advocates!

@TurnItUp4ME

Eileen 🔊

6 months

Powerful short film calling out NIH @NIH for their harms against those suffering from Long Covid (SARS CoV-2). Check out their call to action. 📢

2

25

51

2

17

65

@JKBurmeister

Jeannette Burmeister

10 months

So important. The narrative that PEM is where it's at with ME is just false. ME patients often feel like they are actively dying independently of activity. But pacing is dirt-cheap (i.e., free for insurance companies), so it's been the recommended tx. It's never not about money.

@AliceOutThere

Alice Lewis

10 months

@louise_today @dxrevisionwatch @oslersweb @KCSteckel @TurnItUp4ME @JKBurmeister DISappearing #MyalgicEncephalomyelitis +more. Move over *fatigue* Make room 4 *malaise* … oh, joy🤦🏼‍♀️ #pwME are extremely ill 2begin with … prior2 any form of exertion<—>this is the crux of the problem/erasure. Important thread here 📣📣 TkU, @dxrevisionwatch @TurnItUp4ME ⬆️⬆️

2

3

11

3

18

65

@JKBurmeister

Jeannette Burmeister

2 months

1/3 Walitt: "FM appears to be a way that people experience suffering in their body both from the way that their bodies are interpreted and the problems of the body as well as the problems in their lives as well as how societies tell us how to experience things.”

17

14

65

@JKBurmeister

Jeannette Burmeister

2 months

The criticism of the intramural ME study & the investigators responsible for that atrocity won't go away, @NIH . From a PR perspective, continuing to ignore it will turn out to be a colossal mistake. We know you don't care about pts, but how about some good old self preservation?

@yann_mecfs

Yann (ME/LC Research & Advcacy)

2 months

Avindra Nath: “the symptoms [of Long Covid] are so much more severe compared to ME/CFS” The guy in charge of ME/CFS at this NIH. No wonder ME/CFS doesn’t get taken seriously. (he said this on the podcast: COVID on the Brain, 12 Feb 2024)

43

32

255

1

16

65

@JKBurmeister

Jeannette Burmeister

3 months

Does this look like somebody who works without compensation? (Nath's base salary: $356,104)

Tweet media one

7

14

64

@JKBurmeister

Jeannette Burmeister

4 months

Nath has got to know that it’s a terrible look for NIH to incessantly remind us that this study was a stepchild that received few resources and was squeezed it in on top of a full workload of the researchers, but he can’t keep his resentment and need for praise in check.

3

15

64

@JKBurmeister

Jeannette Burmeister

6 months

@Sp33dtrial5 This right here is *the* question. Who hired him? And who decided to sic him on ME patients?

1

9

62

@JKBurmeister

Jeannette Burmeister

5 months

1/ Pls consider this: I’m genuinely sorry about this; it must be distressing, and I condemn it. I & others were on receiving end of foul, unhinged online abuse & defamation by a prominent psychologist who had weight of prestigious institutions behind him.

Has the “Coyne of the Realm” been devalued?

[Please also see the follow-up post by my husband, Ed Burmeister, “Standing Up to Coyne and Against Unfair Treatment of ME Advocates.”] A recent addition to the ME advocacy community, D…

thoughtsaboutme.com

@PutrinoLab

Putrino Lab

5 months

TBC: I disagree with almost everything this person posts. If I'm honest, I've even come to dislike him for the beliefs/opinions he holds. But I would never hate him for who he is fundamentally as a person. Harassment like this is never acceptable. Zach I'm sorry this happened.

15

4

121

6

15

61

@JKBurmeister

Jeannette Burmeister

4 months

This NIH & next week's CDC event were scheduled only 2 business days apart. Not a way of shutting out as many pts/advocates as possible, right? NIH announced today's event w/ only a week's notice (no time for travel arrangements). Who's afraid of little old ME patients?

5

13

61

@JKBurmeister

Jeannette Burmeister

5 months

4/ again suggesting that there is something innately wrong with us. Let me be very clear, it is inexcusable for Zach to make an implication extending to other ME pts (or what he calls "these people") based on what happened here,

1

6

59

@JKBurmeister

Jeannette Burmeister

9 years

. @NIHDirector Not one bit embarrassed that Walitt works for you, hurts very sick patients? What an agency you run!

Tweet card media

Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?

NIH has tapped Dr. Brian Walitt as the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” (For terminology, please see the end…

thoughtsaboutme.com

3

31

58

@JKBurmeister

Jeannette Burmeister

10 months

@AaronCa11 I wouldn't expect to see what Amp can do after 3 months. At 3 months, I could barely manage to go shopping for myself on Ampligen. At 8 months, I was traveling across country to testify at the Amp federal advisory committee meeting, and I was still improving lots at the time. 2/2

4

7

58

@JKBurmeister

Jeannette Burmeister

4 months

NIH allowed questions on effort preference only when posed ahead of time bc they wanted to prep. That’s how afraid NIH is of their findings being dissected. Their answers are non-responsive and evasive. Pitiful really. The nerves of Madian and Walitt are palpable.

3

19

59

@JKBurmeister

Jeannette Burmeister

2 months

@TWestphalia I was going to engage in a lighthearted manner w/ the German aspect of your tweet until I got to the 2nd part of it. Serious harm to ME pts is Nath's legacy, and we must not let him off the hook by labeling him ignorant or stupid. He knows what he's doing. #RetractNathPaper

1

10

58

@JKBurmeister

Jeannette Burmeister

5 months

3/ As always history & context are important here. There have been harmful false-flag operations by the Wessely Brigade accusing ME pts of threats (w/o proof). There are also prominent medical professionals who have vocally blanket-blocked every ME pt on Twitter,

1

6

57

@JKBurmeister

Jeannette Burmeister

6 months

@ellbail Thank you for the kind words, Elly. I'm happy that you have a supportive spouse. Those of us who do are lucky. Please tell him that this is not ignorance on their part but depraved indifference at best and likely malice. It's very important to be clear about that.

2

6

55

@JKBurmeister

Jeannette Burmeister

7 months

After two days on Twitter, my effort preference isn't what it should be. Thanks to NIH I now understand that this is merely a "mismatch between what [I] think [I] can achieve and what [my body can actually] perform." So, pacing is for suckers, eh?

2

6

57

@JKBurmeister

Jeannette Burmeister

7 months

Richard Horton, editor of The Lancet:

Tweet media one

8

13

58

@JKBurmeister

Jeannette Burmeister

5 months

6/6 There are ways to deal w/ his distress that don't involve persecuting a disenfranchised group of innocent ppl who are barely surviving & have been vilified decades.

2

5

57

@JKBurmeister

Jeannette Burmeister

3 months

@TurnItUp4ME @NIH Can confirm that Eileen has been exceedingly polite & professional. I don't know what's up w/ Nath's apparent tendency to snap at advocates who don't just praise him, but it's not ok. It's not the patients' fault that Collins dumped this study on him & that the study is a failure

1

8

56

@JKBurmeister

Jeannette Burmeister

3 months

Allegedly part of NIH's mission: "to exemplify and promote the highest level of scientific integrity, public accountability, and social responsibility in the conduct of science." Reality: promoting anti-science, obfuscation, and dereliction of duty.

Mission and Goals

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and

2

12

57

@JKBurmeister

Jeannette Burmeister

4 months

@CirclesFire @NIH I’m still processing that he actually invoked “pain and suffering” of NIH researchers. The victim complex! DARVO for the win.

2

10

57

@JKBurmeister

Jeannette Burmeister

5 months

That’s as unsafe as unspecific govt-bought definitions or NIH intramural ME studies (using those definitions to come up w/ effort preference) & will backfire spectacularly. Pls learn from history & think this through. No way are there millions of properly dx'd ME pts in US 2/2

5

6

57

@JKBurmeister

Jeannette Burmeister

6 months

ME patients really dodged a bullet here. With NIH's introduction of the effort-preference concept for ME, a separate code for PEM/PENE/PESE would have allowed the addition of a psych notation to pts' charts instead of an ME dx, among other issues.

@patientled

Patient-Led Research Collaborative

6 months

Update: Unfortunately the ICD-10-CM code for PEM/PESE was not approved by CDC for implementation in Oct 2024. It will not be revisited at the March 2024 meeting due to lack of consensus on coding placement and additions, but it is possible it could be revisited in the future 1/

4

35

99

3

13

55

@JKBurmeister

Jeannette Burmeister

6 months

@PeonyLeaves905 40 yrs! NIH has a lot to answer for. So does the CDC or as some people call them, Center for Disease-Control Prevention. If our mind really had the power to create disease, wouldn't it have the power to push through when we desperately want to, say, go our kids’ graduation? 🤦‍♀️

3

8

55

@JKBurmeister

Jeannette Burmeister

6 months

@LazarusLong13 @loscharlos @jwdaddy80 @LauraMiers @ahandvanish @Ellemarie_318 @D_Bone @PenGwenWithLC @rubyslippahs Thank you for sharing! Fighting Walitt (and any possible like-minded replacement) is pivotal at this point of the LC history. Four years of LC feels like a really long time now, but it will feel like nothing at all after 40 or 50 yrs. And that's where LC is headed w/ NIH and CDC.

3

9

55