davidtuller @davidtuller1 Twitter profile

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davidtuller

@davidtuller1

2 years

Maeve O'Neill died at 27 in October, 2021. Her death certificate cites ME. An inquest into the circumstances and the actions--or inactions--of the NHS in Devon should take place this year. Here's my account of what happened.

When the doctor doesn’t listen

The medical establishment has a long history of ignoring patients with ‘unexplained’ symptoms. Long Covid might finally bring about a global attitude shift.

www.codastory.com

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davidtuller

@davidtuller1

2 years

Jeff @ManvBrain , since I'm one of the "loudest" voices in the PACE debate, as you write in NY Mag, it's curious that you didn't seek to talk with me about the issue before describing my work. Your piece really misrepresented my work, based solely on PACE authors' bogus claims.1/

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davidtuller

@davidtuller1

1 year

The Dutch CBT Long Covid study failed to report its one objective results--actigraphy. Now we know why. In correspondence, the authors acknowledge actigraphy had null results. It's pretty deceptive not publishing results that call your conclusions into question?1/

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davidtuller

@davidtuller1

10 months

I was really pleased to talk today with Yale's Akiko Iwasaki, a professor of immunobiology and a leading long Covid investigator. @VirusesImmunity

Trial By Error: An Interview with Yale's Akiko Iwasaki | Virology Blog

By David Tuller, DrPHAkiko Iwasaki, a professor of immunobiology at the Yale School of Medicine, is a leading investigator into long Covid and has recently ...

virology.ws

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davidtuller

@davidtuller1

3 months

I spoke earlier today with The Guardian's George Monbiot about his recent scathing column on a "national scandal"--the longstanding mistreatment of those with the illness (or cluster of illnesses) currently known as ME/CFS. Thanks @GeorgeMonbiot !

Trial By Error: Guardian Columnist George Monbiot Discusses His Scathing Critique of the "Biopsyc...

By David Tuller, DrPH *May is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berk ...

virology.ws

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davidtuller

@davidtuller1

4 years

The Guardian and NYTimes have both just published game-changing articles about ME/CFS, thanks to @GeorgeMonbiot and @moisesvm . A big development. My post:

Trial By Error: Game-Changing Articles in The Guardian and The New York Times | Virology Blog

By David Tuller, DrPH The relationship between what is being called long-Covid and ME/CFS (and its variants) is complex. The conditions overlap in ways that ...

virology.ws

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davidtuller

@davidtuller1

10 months

This study is complete crap--the authors failed to report that their one objective measure, actigraphy, yielded null results. This is research misconduct, in my view, or arguably worse.

Trial By Error: More on the Perplexing Dutch Claim that Null Results for Objective Measures of...

By David Tuller, DrPH I recently wrote about a Dutch study published a few months ago in the journal Clinical Infectious Diseases--“Efficacy of Cognitive-Be ...

virology.ws

Paul Garner

@PaulGarnerWoof

10 months

RCT shows CBT effective for severe fatigue with the post covid condition. Impressive effect sizes. Hans Knoop "many patients were initially skeptical that therapy would help and said they had physical problems, but afterwards they were surprisingly positive". #longcovid #MECFS

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davidtuller

@davidtuller1

3 years

I have re-sent this letter to the chief executive at @NICEComms , now with 150+ experts and 100+ organizations and groups from UK and around the world.

Trial By Error: An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guidel...

By David Tuller, DrPH I sent the following letter today to Professor Gillian Leng, chief executive of the National Institute for Health and Care Excellence ...

virology.ws

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davidtuller

@davidtuller1

10 months

In light of the just-published nonsense in a Scandinavian journal from the CBT/GET ideological brigades--calling themselves the "Oslo Chronic Fatigue Consortium"--I thought I'd re-post this interview I did with Yale's star immunobiologist Akiko Iwasaki:

Interview with Yale's Akiko Iwasaki

Akiko Iwasaki, a professor of immunobiology at the Yale School of Medicine, is a leading investigator into long Covid and has recently been designated to lea...

www.youtube.com

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davidtuller

@davidtuller1

2 years

It's a big problem when journalists write articles that distort the science in order to present the biased views of a group with predetermined views. Even worse when the journalists dismiss all legitimate criticism as hostile rantings.

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davidtuller

@davidtuller1

4 years

The NICE draft guidance for ME/CFS rejects graded exercise therapy, the Lightning Process, and CBT when presented as a cure or a treatment for the illness itself rather than as supportive care:

Trial By Error: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure | Virology Blog

By David Tuller, DrPH The draft of the new ME/CFS guidance from the UK's National Institute for Health and Care Excellence is out--posted just after mi ...

virology.ws

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davidtuller

@davidtuller1

2 years

You write that I "found fault with its [PACE's] protocol." This is a misrepresentation. Had they followed their protocol, they would have shown zero or minimal results in their subjective outcomes. I found fault with the fact that they DID NOT ADHERE TO THEIR OWN PROTOCOL.4/

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davidtuller

@davidtuller1

5 months

Some thoughts about @GeorgeMonbiot 's excellent Guardian column this week. It's good to see he's called out leading GET/CBT fabulists and fanatics like Professor Sharpe and Sir Simon and noted how this whole mess has been a massive systemic failure.

Trial By Error: Guardian Columnist George Monbiot Calls Out the GET/CBT Charlatans and the Fraudu...

By David Tuller, DrPH In a blistering take-down published on Tuesday, Guardian columnist George Monbiot indicted Professor Sir Simon Wessely, Professor Mich ...

virology.ws

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davidtuller

@davidtuller1

1 year

In PACE, outcome thresholds for the two key variables--physical function and fatigue--were lower than entry criteria. This was not reported in papers. So patients could be "recovered" on these measures at baseline. This is research misconduct in my view, and arguably fraudulent.

Paul Glasziou

@PaulGlasziou

1 year

Free access link to the JNNP paper is here - . Box below is the 8 anomalies in the NICE CFS/ME guideline process

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davidtuller

@davidtuller1

3 months

What the hell is going on here??? Something needs to happen so these young women don't die!

The family of ANOTHER young woman with very severe ME are scared their daughter is going to DIE in...

After public outcry & media coverage over #BringMillieHome, the NHS is now abusing another young woman, Carla, who lives with severe ME

www.thecanary.co

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davidtuller

@davidtuller1

7 months

In 2016, Professor Esther Crawley of Bristol University announced with great fanfare the launch of FITNET-NHS, a trial of online CBT for adolescents with ME/CFS. The first reported outcome results--on cost-effectiveness--are disastrous. Oops!

Trial By Error: Disastrous Results for Professor Crawley's Pediatric Online CBT Trial | Virology...

By David Tuller, DrPH Pediatrician Esther Crawley, Bristol University’s methodologically and factually challenged grant magnet, has released what seem to be ...

virology.ws

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davidtuller

@davidtuller1

3 years

More than 100 scientists, clinicians, academics, etc., have signed a letter urging immediate publication of the new NICE ME/CFS guidelines. Some powerful people would prefer to "disappear" the document.

Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay | Virology Blog

By David Tuller, DrPH This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care ...

virology.ws

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davidtuller

@davidtuller1

6 months

How many more of these will happen before this gets solved??

Guus

@guustweet

6 months

The little spot I made for Lauren. It’s over the top and funny (the bananas are an inside joke). This colour green was one of her favourite colours. Just like pastel pink for the 🌸. I showed it to her and she loved it, she liked the aesthetic. #DagLieveLauren #ReMEmberLauren

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davidtuller

@davidtuller1

5 months

It is truly the emperor-has-no-clothes at the highest levels of British medicine/academic/journalism. A huge disgrace for all around. Sharpe, Wesseley, White, etc have a lot to answer for. The PACE trial is fraudulent.

George Monbiot

@GeorgeMonbiot

5 months

All this requires further investigation. The injustices done to patients with ME/CFS are compound and multiple. It's not just individual clinicians in the frame, but universities and departments, insurance companies, government and media. Great wrongs have been done.

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davidtuller

@davidtuller1

2 years

You don't mention that in PACE, all their objective outcomes had disastrous results. On average, no one got back to work, no one got off benefits, no one was more fit, and any improvements in walking ability were clinically insignificant. 8/

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davidtuller

@davidtuller1

1 year

I'm never sure what to do on ME Awareness Day. It's a day for patients to make their voices heard, so usually I stay out of the way. This year I'm posting a haunting video made by my friend @AnilvanderZee :

Trial By Error: A Day in the Life of Anil van der Zee | Virology Blog

By David Tuller, DrPHIt is May 12th--ME International Awareness Day. (Or ME/CFS International Awareness Day if you're the US Centers for Disease Contro ...

virology.ws

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davidtuller

@davidtuller1

10 months

More of the same old ridiculous nonsense from the so-called "Oslo Chronic Fatigue Consortium"--a bunch of self-important "experts" who know they have lost control of the narrative:

Trial By Error: More of the Same Old Nonsense from the "Oslo Chronic Fatigue Consortium" | Virology...

By David Tuller, DrPH It is extremely dispiriting to have to respond to yet another wail of desperation from psychologizing dead-enders who have lost contro ...

virology.ws

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davidtuller

@davidtuller1

2 years

The data proved what everyone knew--that they weakened their protocol measures in ways that generated much more attractive outcomes. They then attempted to hide this by slandering patients and accusing them of being anti-science. This was also disgraceful.7/

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davidtuller

@davidtuller1

15 days

Thanks to @statnews for publishing our piece on this complicated issue. @PutrinoLab @mhornig

Functional neurological disorder is not an appropriate diagnosis for people with long Covid

With long Covid continuing to be a leading cause of disability, physicians, researchers, and policymakers should follow the science — and the science does not point to functional neurological...

www.statnews.com

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davidtuller

@davidtuller1

1 year

Why is the NIH counting a $3.6 million award to a project on cancer-related fatigue as part of the $13 million spent on its category for CFS and ME/CFS? @jspotila

Trial By Error: Why Did the NIH List an Award for Research on Cancer-Related Fatigue in Its List of...

By David Tuller, DrPH*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Pub ...

virology.ws

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davidtuller

@davidtuller1

2 years

In PACE, 13% of the participants were "recovered" on the primary outcome of physical function AT BASELINE, when they were simultaneously defined as "disabled" enough to enter the trial. This is of course absurd. You can't be recovered and disabled simultaneously on a measure. 13/

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davidtuller

@davidtuller1

2 years

You also write that I criticized their definition of "recovery" as being "weak." That's also a misrepresentation. I criticized them for WEAKENING ALL FOUR OUTCOMES THAT CONSTITUTED RECOVERY IN PACE, then refusing to provide the data about what the findings would have been.5/

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davidtuller

@davidtuller1

3 years

Professor Sharpe, who has blocked me, has tweeted this: "I agree. GET should not have fixed increments. And patients need to be able to make informed choices." That is of course NOT how GET is described in PACE. GET has fixed increments by their own definition. Now he says no.

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davidtuller

@davidtuller1

5 months

Why did a BMJ study claim rehab was "clinically effective" when the primary outcome results were below the threshold for clinical significance? Our letter seeks a correction. @mhornig @PutrinoLab @keithgeraghty @sunsopeningband @DrMark_Faghy @ClagueNjc36

Trial By Error: Letter to BMJ Seeking Correction in Study of Long Covid Physical-and-Mental...

By David Tuller, DrPH Last month, The BMJ published a study of a rehab intervention for Long Covid in which the authors made claims that were not borne out ...

virology.ws

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davidtuller

@davidtuller1

4 years

Royal College of GPs removes bogus GET/CBT online training program in response to new NICE draft of clinical guidelines:

Trial By Error: GP Group Removes Online GET/CBT Medical Training Program | Virology Blog

By David Tuller, DrPH In early 2019, I wrote about an awful online training course for general practitioners on recognizing and caring for patients diagnose ...

virology.ws

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davidtuller

@davidtuller1

3 years

Why has NICE buckled under to anti-science bullies from the Royal Colleges? What's the point of an evidence-based review if physicians get to toss it if it doesn't correspond to their biases? Why does NICE exist?

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davidtuller

@davidtuller1

2 years

The New Republic attributes long Covid to "psychosocial distress," says more women report having it because "in a patriarchal world, women face more adversity and have less control over their lives.” Hm. Some thoughts on this problematic article:

Trial By Error: Is the Long Covid Phenomenon an Expression of "Psychosocial Distress"? | Virology...

By David Tuller, DrPH For the second time in a few weeks, a major US news organization has provided Professor Michael Sharpe, lead PACE investigator and one ...

virology.ws

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davidtuller

@davidtuller1

2 years

Can someone please slap a warning label on this University of Warwick study that promotes an exercise program for long Covid patients but does not include information about PEM in the consent and participant information forms? What's up with that?

Trial By Error: Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid...

By David Tuller, DrPHI’ve been writing for a while about the rush to treat long Covid patients with the outdated and debunked approach long applied to ME/CF ...

virology.ws

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davidtuller

@davidtuller1

2 years

You failed to mention Virology Blog's open letter to The Lancet, which I organized, that was signed by more than 100 scientists, physicians, academics, from around the world denouncing the trial and calling for an independent investigation. 10/

Trial By Error: Open Letter to The Lancet, version 3.0 | Virology Blog

By David Tuller, DrPH Two months ago, Professor Racaniello sent Lancet editor Richard Horton an open letter about the indisputable methodological and ethica ...

virology.ws

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davidtuller

@davidtuller1

2 years

I appreciate that you referred to me as an academic. Other stories have called me an "activist"/"campaigner" but ignored my academic credentials. But you did not mention I'm in public health--not hieroglyphics, Finnish literature, or physics.2/

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davidtuller

@davidtuller1

1 year

This was one reason I decided to keep going. I found it hard to take the same cabal of CBT/GET zealots making the exact same arguments about LC just as their arguments were being taken apart in the ME, CFS and ME/CFS worlds.

Christoph Ströck

@cstroeckw

1 year

@IppoAng It is horrible to see the LC community go through the same BS the mecfs community has been going through for over a century without anyone outside this community ever learning from it.

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davidtuller

@davidtuller1

10 months

The PACE trial was arguably fraudulent, since participants were able to meet outcome thresholds at baseline. The authors didn't disclose that 13% had already met the outcome for "physical function" at baseline. I'm not a lawyer, but that is research misconduct and maybe worse.

Resia Pretorius

@resiapretorius

10 months

What an ignorant and disrespectful statement: “‘May not indicate bodily disease”. ALL disease starts with definite pathophysiology. Opinions are not scientific. Perhaps they need reminding: The PACE trial was a methodological and ethical disaster.

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davidtuller

@davidtuller1

2 years

When patients wanted to see the original data per the protocol outcome measures, they refused and called them "vexatious." This was disgraceful. They lost in court and QMUL was ordered to turn over the data.6/

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davidtuller

@davidtuller1

9 months

Dutch investigators have published yet another piece of crap, this one focused on "psychosomatic therapy" for "persistent somatic symptoms." Awful results--but investigators call the treatment "promising." Huh??

Trial By Error: A Crap Study on "Psychosomatic Therapy" for "Persistent Somatic Symptoms" |...

By David Tuller, DrPH *This post has been corrected. I initially wrote that the protocol did not appear to call for sub-group analyses, but in fact it did. ...

virology.ws

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davidtuller

@davidtuller1

3 years

Given the attention to the PACE trial over Professor Sharpe's bizarre attack on the Guardian's @GeorgeMonbiot , I am reposting the 2018 letter to the Lancet signed by 100+ experts, 10 members of Parliament, and 70+ patient groups. Horton ignored it.

Trial By Error: Letter to Lancet Editor Demanding Independent Investigation of PACE (Reprise from...

By David Tuller, DrPH *April is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism at the university& ...

virology.ws

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davidtuller

@davidtuller1

2 years

You failed to mention the published reanalysis of PACE's findings (I was a co-author), which found that per the protocol measures, they had null "recovery" and only marginal results for "improvement"--well within what would be expected from bias alone. 11/

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a...

Background The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome....

bmcpsychology.biomedcentral.com

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davidtuller

@davidtuller1

3 years

@GeorgeMonbiot @profmsharpe Professor Sharpe, PACE is over. It cannot be rehabilitated. The flaws and data manipulation are out there for everyone to see. You have had a nice long ride where you were able to effectively dismiss all critics as harassers. That time is past. Accept it.

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davidtuller

@davidtuller1

3 years

The decision by @NICEComms not to publish its own ME/CFS guidelines has drawn international concern, as is clear from the list of 100+ scientists, clinicians, academics, etc., who signed this letter urging immediate publication.

Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay | Virology Blog

By David Tuller, DrPH This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care ...

virology.ws

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davidtuller

@davidtuller1

3 years

"It is hard to describe the thrill I felt when reading the words “now-discredited study” rendered as a normative statement in The Atlantic."

Trial By Error: Good Long Covid Coverage from Atlantic; Skeptical Coverage from New Yorker and...

By David Tuller, DrPHOn September 1st, The Atlantic published another excellent piece by Ed Yong, €œLong-haulers are fighting for their future.€ In explori ...

virology.ws

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davidtuller

@davidtuller1

2 years

In academia, the discipline matters. Omitting that I have public health training obscures my expertise in dealing with public health issues, such as epidemiology. (I'm not an epidemiologist but studied it in the course of obtaining my degrees.) 3/

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davidtuller

@davidtuller1

3 years

So when will the PACE trial finally be retracted? Will a legitimate investigation of what happened and how get underway? Will ME/CFS patients finally get decent research into their condition? Will Professor Sharpe stop trying to rehabilitate PACE with long COVID? Stay tuned!

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davidtuller

@davidtuller1

1 year

Thanks to all!! Berkeley's crowdfunding effort has reached its goal!- I am, as usual, very touched by the support and look forward to continuing my work!

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@davidtuller1

3 years

@edyong209 this is what I've experienced for the last few years writing about ME/CFS. It is heartbreaking. The neglect of this patient population has been profound.

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davidtuller

@davidtuller1

2 years

The PACE authors then claimed that their own objective measures were not objective after all. This is absurd. No one forced them to choose these objective measures. It is not proper science to completely disavow your own objective measures once the fail to prove your point.9/

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@davidtuller1

3 years

Of course! The idea that millions of people around the world want nothing more than to lie in bed for years and perform their hypothesized "sick role" for weird psychological reasons is pretty bizarre.

Colleen Steckel

@KCSteckel

3 years

@StenHelmfrid @NMacFa Exactly. I think we can't make that point often enough. Important 2 recognize that some psychologizing #MyalgicE promote the idea that patients are motivated to stay ill. For all those I know w/ this devastating disease that is a ridiculous idea. We want to return to living.

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davidtuller

@davidtuller1

10 months

It's ridiculous. They say that it's time for a new approach. But that "new approach" is the old CBT/GET approach that's been available for decades. They have nothing new to say.

Anil van der Zee ©

@AnilvanderZee

10 months

Some of the authors are part of the COFFI consortium that Ruud Raijmakers wants to work together with to study #pwME , #longCOVID , #lyme & #qfever for @ZonMw . Yes, it's biomed research but these folks have not contributed to progress. The opposite really. I say hell no to COFFI!

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davidtuller

@davidtuller1

3 months

I posted this interview with Guardian columnist @GeorgeMonbiot a week ago. It's gotten almost 5,000 views, which is a lot for me. Here it is again:

Interview with Guardian columnist George Monbiot on the mistreatment...

*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the p...

www.youtube.com

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davidtuller

@davidtuller1

2 years

@ManvBrain Many patients have tried them!!! And had serious relapses. Really, you need to talk to some actual patients and find out how frequently these treatments--which are really the same treatment with different emphases--lead to paralytic relapses.

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davidtuller

@davidtuller1

3 years

Since @GeorgeMonbiot has renewed focus on PACE, I'm reposting a 2015 blog about how the PACE team violated the Declaration of Helsinki by not disclosing their insurance industry ties to trial participants. Their responses to this were ridiculous:

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davidtuller

@davidtuller1

1 year

More nonsense at this upcoming "biopsychosocial" conference in Finland on long Covid, with Professor Sharpe and other members of the GET/CBT/"amydala retraining" ideological brigades.

Trial By Error: An Upcoming "Biopsychosocial" Long Covid Conference in Finland | Virology Blog

By David Tuller, DrPH What is it with the health care establishments in northern Europe? Why are they so devoted to non-evidence-based approaches to treatin ...

virology.ws

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davidtuller

@davidtuller1

10 months

There's no point in responding to him in any event. He and his buddies in the CBT/GET ideological brigades are impervious to reality. They ignore the fact that this is not a new 'holistic' approach but the discredited approach promoted in the debunked PACE trial.

NickyProctor

@NickyProctor

10 months

@MECFSNews @PaulGarnerWoof @TomKindlon @davidtuller1 @david_f_marks This is a great paper that explains a lot about the vested interests of @PaulGarnerWoof & others who continue to spout the ‘It’s All In Your Head’ nonsense! @david_f_marks

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davidtuller

@davidtuller1

3 months

My interview with @GeorgeMonbiot has had 2500 views since I posted it two days ago. I'm going to post an edited transcript later, but for now here's the video again:

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davidtuller

@davidtuller1

2 years

I have a lot more thoughts on the piece but for now will leave it at this. It's very well-written and you express sympathy for patients and so on. But you have taken the framing from those who believe PACE and related studies can be called proper science--when they stink.24/

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davidtuller

@davidtuller1

2 years

Had you bothered to contact me, I would have tried to explain this to you. Better than that, you should have watched Bruce Levin's presentation slamming PACE: "How NOT to conduct a clinical trial." Dr Levin is a top biostatistician at Columbia (since retired). 17/

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davidtuller

@davidtuller1

7 months

I'll also point out that I trashed the PACE trial in a 15,000-word investigation long before I began crowdfunding. I was very, very happy to call PACE bullshit for free. The 100+ experts who signed this letter agree:

Trial By Error: Open Letter to The Lancet, version 3.0 | Virology Blog

By David Tuller, DrPH Two months ago, Professor Racaniello sent Lancet editor Richard Horton an open letter about the indisputable methodological and ethica ...

virology.ws

davidtuller

@davidtuller1

7 months

Zachary, if you're going to mention my crowdfunding, you should mention that the lead PACE authors had close ties to disability insurers, advising them that CBT/GET worked. They did not disclose this to trial participants. PACE is research misconduct and a piece of crap.

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davidtuller

@davidtuller1

2 years

He read PACE at my request and thought it was an atrocious piece of research. He publicly called it "the height of clinical trial amateurism." Was he bamboozled by me or by patients?? I suggest you watch it if you want to learn why PACE is crap 18/

How NOT to Conduct a Randomized Clinical Trial

Dr. Levin will discuss best practices on planning and conducting a clinical trial with illustrative examples drawn from a real-life randomized controlled tri...

www.youtube.com

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@davidtuller1

1 year

Dutch team offers "dog-ate-my-data" excuses for failing to provide null objective findings in CBT-for-long-Covid study, claiming level of physical activity is completely irrelevant in assessing fatigue:

Trial By Error: Dutch Team Offers "Dog-Ate-My-Data" Excuses for Not Reporting Null Objective...

By David Tuller, DrPH Two months ago, Clinical Infectious Diseases (CID), a high-impact journal, published a study called “Efficacy of Cognitive-Behavioral ...

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davidtuller

@davidtuller1

5 months

My only question is if it's too early to call it the greatest medical scandal of the millenium???

George Monbiot

@GeorgeMonbiot

5 months

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column.

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davidtuller

@davidtuller1

2 years

Paul, have you spoken with PACE participants? They would tell you that they might have increased their walking but they cut back on other activities, so they ended up NOT doing more. The PACE trial was a great example of egregious research misconduct--a real scam.

Paul Garner

@PaulGarnerWoof

2 years

Graded exercise therapy in the PACE trial, was reflexive, individualised and negotiated. "The common chosen exercise was walking” Lancet 2011. It’s often represented by activist groups as something else. Useful and sensible approach once people have established their baseline

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davidtuller

@davidtuller1

1 year

Dutch agency awards professor of psychosomatic medicine big ME/CFS award for "biomedical" research. Hm. Maybe not the best decision??

Trial By Error: Dutch Agency Awards Big Biomedical ME/CFS Grant to Judith Rosmalen, Professor of...

By David Tuller, DrPH*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Pub ...

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davidtuller

@davidtuller1

2 years

You could also have talked to my epidemiology colleagues at Berkeley, who also read PACE at my request and were shocked by its awfulness. At Berkeley, it has been put to its best use as a case study of terrible research in graduate epi seminars. 19/

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davidtuller

@davidtuller1

4 years

The new NICE draft guidance for ME/CFS is a repudiation of the PACE trial and the entire GET/CBT research base. Leave comments after the article!

Proposed British guidelines reject useless chronic fatigue syndrome treatments

New guidelines developed by Britain's National Institute for Health and Care Excellence are a long-overdue and much-needed corrective to years of misguided and potentially harmful recommendations for...

www.statnews.com

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davidtuller

@davidtuller1

2 years

No. If patients suffer from post-exertional malaise or post-exertional symptom exacerbation--a common long Covid symptom--graded exercise therapy is clearly contra-indicated. It is important to get this right. Your suggestion risks harming many patients.

William Haseltine

@WmHaseltine

2 years

While there are treatments for Long Covid, it’s not a one-size-fits all. Treatment plans are as varied and individualized as the symptoms of Long Covid. The best treatment is a holistic approach. Get all your Long Covid questions answered with The Fami...

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davidtuller

@davidtuller1

2 years

You seem to think the two are synonyms--at least, that's how you treat the terms in the article. Since "chronic fatigue" is not a disease but a symptom, every single sentence that includes this phrase as if it were a disease is inaccurate and should frankly be corrected.23/

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davidtuller

@davidtuller1

6 months

I spoke earlier today with @RobWust about the recent study of muscle abnormalities in Long Covid published by @NatureComms this month:

Trial By Error: Interview with Dr Rob Wüst about New Study of Muscle Abnormalities in Long Covid |...

By David Tuller, DrPH In early January, Nature Communications published a Dutch study called “Muscle abnormalities worsen after post-exertional malaise in l ...

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davidtuller

@davidtuller1

1 year

Hans Knoop, 2014: "Fatigue is generally associated with low physical activity in patients with various chronic medical conditions." Knoop, 2023: There is no relationship between fatigue and physical activity so we decided not to report physical activity results in ReCOVer trial.

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davidtuller

@davidtuller1

2 years

In short, your take on PACE is completely off the mark and anti-scientific. You have justified the position taken by a group of researchers whose work is so riven with flaws and missteps that it is shocking anyone ever took it seriously as a credible piece of work.20/

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davidtuller

@davidtuller1

1 year

Amazingly, the claim is that objective results from actigraphy do not reflect subjective findings and are therefore, it seems, unreliable and not woth publishing. This is Knoop's pattern. Seems to me like a form of research misconduct. 2/

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davidtuller

@davidtuller1

5 months

GET doesn't help kids with ME/CFS, according to the latest study from Professor Crawley, Bristol U's methodologically and ethically challenged grant magnet. Is her 'reign of error' finally coming to an end?

Trial By Error: Will MAGENTA's Null Results Finally End Professor Crawley's Long 'Reign of Error'?...

By David Tuller, DrPH For years, Professor Esther Crawley, the University of Bristol’s methodologically and ethically challenged ME/CFS investigator, has ho ...

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davidtuller

@davidtuller1

3 years

In the UK, I have been dismissed as the crazy, out-of-control American "activist" harassing eminences like Professor Micheal Sharpe. The truth about PACE is harder to ignore when Guardian columnist @GeorgeMonbiot makes the case:

Trial By Error: The World According to Sharpe | Virology Blog

*April is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism at the university's Center for Glob ...

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davidtuller

@davidtuller1

3 years

Norway's research ethics authorities have rejected the proposed Lightning Process study by an LP practitioner as a kind of "inside job" that would not provide trustworthy information. Great decision!

Trial By Error: Norway Rejects New Clinical Trial of Woo-Woo Lightning Process | Virology Blog

By David Tuller, DrPH In a welcome display of scientific acumen, Norwegian research ethics authorities have rejected a proposed study of the woo-woo called ...

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davidtuller

@davidtuller1

2 years

A speaker at a recent CDC online gathering recommended CBT and "very gradual" GET for ME/CFS patients. Isn't it yet clear that these terms are toxic in this context and should not be used?

Trial By Error: Speaker at CDC Event Promotes CBT and "Very Gradual" GET | Virology Blog

By David Tuller, DrPH The US Centers for Disease Control and Prevention has a long history of missteps when it comes to the illness or cluster of illnesses ...

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davidtuller

@davidtuller1

4 months

These cases of young women with severe ME are pretty devastating. Here's a bit about Millie's situation.

Trial By Error: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young...

By David Tuller, DrPH ME patients and advocates in England have been alarmed by a series of ongoing cases in which the families of severely ill young women ...

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davidtuller

@davidtuller1

1 year

@awgaffney It might be a good idea to examine studies that arguably qualify as research misconduct--with rampant outcome-swapping (PACE) and hidden data (this one) before touting them as evidence that rehabilitation works for these patients with ME and long Covid. 1/

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davidtuller

@davidtuller1

2 years

A letter to the journal Brain explaining why a recent study does NOT show that POTS is a "functional psychogenic disorder" @DDPActual @b_m_hughes @bcdelaney1 @mhornig @dysclinic

Trial By Error: A Letter to Journal Brain About Paper Claiming POTS Is a "Functional Psychogenic...

By David Tuller, DrPHI recently criticized a study from New York University’s neurology department. The investigators wildly over-interpreted their findings ...

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davidtuller

@davidtuller1

1 year

Apparently Alice had a successful tube-feeding today at the lower incline.

davidtuller

@davidtuller1

1 year

I've just heard that the hospital has now finally agreed to begin tube-feeding her at a 5% incline.

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davidtuller

@davidtuller1

1 year

Journal of Neurology, Neurosurgery, and Psychiatry finally publishes a smart rapid response to that primal whine from GET/CBT true-believers about the new NICE guidelines for ME/CFS:

Trial By Error: Rapid Response to Anti-NICE Whine de Coeur; UK Government Seeks Input to Interim...

By David Tuller, DrPH The Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) has finally published a cogent rapid response to its recent whine de coe ...

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davidtuller

@davidtuller1

2 years

Instead, you simply repeated the PACE authors' ridiculous argument that their results were "solid." You wrote: "While some patients had already improved with regard to some symptoms before the study began, none had fully recovered." This is a laughable statement.12/

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davidtuller

@davidtuller1

2 years

This month marks the seventh anniversary of the launch of my efforts to debunk the misleading and deceptive (i.e fraudulent?) PACE Trial:

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davidtuller

@davidtuller1

2 years

The PACE authors failure to disclose this overlap, which resulted from their decision to abandon their protocol, seems to me to constitute serious research misconduct by any definition, and is arguably fraudulent. In any event, it is not "science." 15/

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davidtuller

@davidtuller1

3 months

Responding to anything Prof Garner says about the fraudulent PACE trial is a waste of time. The PACE team lowered outcome thresholds so participants could be "recovered" at baseline for physical recovery--and then hid those results. That's research misconduct.

Fatigo_ME

@Fatigo_MECFS

3 months

Do @actionforme want to comment on this? It is an interpretation of events but an incorrect one. @MEAssociation @MEActNetUK @MEActNet @meactionscot @SonyaChowdhury #pwME @wilshica @davidtuller1 @Huisarts_Vink

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davidtuller

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8 months

In survey, Dutch patients say GET and CBT were "the worst" approach to treating/managing ME/CFS--even though the leading GET/CBT clinic reached out to its patients to respond to the questionnaire.

Trial By Error: Dutch Survey Respondents Rate GET/CBT as "the Worst" Approach, Per New Report |...

By David Tuller, DrPH A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the wor ...

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davidtuller

@davidtuller1

4 years

Thanks @PaulGarnerWoof for inviting me to talk to a small online group today about long-Covid in relation to the failings of the PACE trial--published by @TheLancet even though 13% of participants met a key outcome threshold at baseline--a bizarre statistical anomaly.

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davidtuller

@davidtuller1

10 months

Hans Knoop, the lead author, claimed in a commentary in The Lancet that PACE participants met a "strict criterion for recovery." This was a lie when he wrote it in 2011, and it remains a lie a dozen years later. Yet this false claim has never been corrected. It's a disgrace.

Paul Garner

@PaulGarnerWoof

10 months

RCT shows CBT effective for severe fatigue with the post covid condition. Impressive effect sizes. Hans Knoop "many patients were initially skeptical that therapy would help and said they had physical problems, but afterwards they were surprisingly positive". #longcovid #MECFS

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davidtuller

@davidtuller1

2 years

That nonsensical and paradoxical analysis should have prevented ANY of the PACE papers from being published--certainly the 2011 Lancet paper and the 2013 "recovery" paper in Psychological Medicine. But journals didn't notice or care about this egregious flaw. 14/

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davidtuller

@davidtuller1

3 years

Very disturbing that NICE has capitulated to anti-scientific campaigners.

Brian Hughes

@b_m_hughes

3 years

Absolutely incoherent. The #MECFS guidelines are "rigorous", produced "to the letter", but because (some) MDs unhappy, they're "paused". Impossible to adjust guidelines without diluting them. How is that good for patients? What is NICE for exactly?

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davidtuller

@davidtuller1

1 year

More about that Dutch study of CBT for long Covid that had null results for physical activity--but the investigators decided not to mention that in the trial paper and push the positive subjective outcomes.

Trial By Error: More on the Perplexing Dutch Claim that Null Results for Objective Measures of...

By David Tuller, DrPH I recently wrote about a Dutch study published a few months ago in the journal Clinical Infectious Diseases--“Efficacy of Cognitive-Be ...

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davidtuller

@davidtuller1

2 months

What the hell is going on with the @cochranecollab review for exercise and ME/CFS? This project has been dragging on for years. Cochrane's lack of urgency in getting this done is really inexcusable and hard to understand except as giving the finger to desperate patients.

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davidtuller

@davidtuller1

1 year

Hey @awgaffney , are you aware that the authors did not report their one objective finding--a null result for actigraphy at the end of therapy. So you're ok with the fact that they chose not to report objective data that sheds doubt on the subjective reports? Interesting!

Adam W Gaffney

@awgaffney

1 year

A multi-center randomized trial found benefit from cognitive behavioral therapy on severe fatigue among mostly non-hospitalized Long COVID patients through 6 months; evidence for benefit on some secondary outcomes also, e.g. concentration problems.

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davidtuller

@davidtuller1

3 years

Fauci: "We already know that people who get breakthrough infections and don’t go on to get advanced disease requiring hospitalization, they too are susceptible to long COVID...You’re not exempt from long COVID if you get a breakthrough infection.”

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davidtuller

@davidtuller1

10 months

This week, @PutrinoLab and @VirusesImmunity published an important study in Nature reporting differences in multiple immune-related blood parameters between those with and without long Covid. Dr Putrino and I recently spoke about the findings:

Trial By Error: David Putrino on New Nature Study of Long Covid Immune Profiling | Virology Blog

By David Tuller, DrPH I’ve posted two past interviews with David Putrino (here and here) about long Covid, ME/CFS, and related issues. Dr Putrino, a neurosc ...

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davidtuller

@davidtuller1

2 years

The usual suspects are promoting their psychosocial "research agenda" for long Covid. Here's a rebuttal:

Trial By Error: The Usual Suspects Promote a Psychosocial "Research Agenda" for Long Covid |...

By David Tuller, DrPH In what could be described as a form of epistemic land grab, core members of the graded exercise therapy/cognitive behavior therapy (G ...

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davidtuller

@davidtuller1

1 year

This unbelievably crummy paper shows the lengths some will go to try to prove that "psychiatric" disorders are causing "CFS" and fibromyalgia. This paper absolutely reeks of desperation to find even the tiniest hint of a smidgen of a link.

Frontiers | Psychiatric disorders and the onset of self-reported fibromyalgia and chronic fatigue...

IntroductionThis study aimed to assess whether psychiatric disorders predict the onset of fibromyalgia and chronic fatigue syndrome (CFS) which develop in th...

www.frontiersin.org

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davidtuller

@davidtuller1

2 years

To back up your argument you have cited several other studies "have reinforced the finding that GET and CBT are effective for treating chronic fatigue." All of these studies are also seriously flawed and "reinforce the finding" only to those who don't understand study design. 21/

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davidtuller

@davidtuller1

2 years

The medical establishment gaslights doctors, insisting long Covid is 'psychological'

Covid long-hauler physicians reject their peers' party line that their symptoms are psychosomatic

www.codastory.com

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