The pitfalls of complaining about those in power: the Committee on Publication Ethics’ handling of an authorship dispute unsatisfactorily resolved by a university

whos on first

Who’s on first?

We shouldn’t expect any other outcome when a former PhD student complains to COPE. Note how the university stacked the deck in defining rules for how these disputes are resolved.

cope screenshot authorship dispute

My summary

Like a lot of these  authorship disputes, details of the official record do not reveal much. But…

COPE deftly passed responsibility for settling an issue of contested authorship back to the journal. No surprise, the journal passed responsibility back to the university, which predictably supported professors over a student.

This case history reaffirmed my expectations of COPE and of universities forced to judge between faculty and a former PhD student. But there is some interesting rules revealed in the telling.

Someone outside of academia might think, “For Pete’s sake, give the student the first authorship. What’s the big deal?” They don’t understand the logic of these kinds of situations.

Early career persons low in power risk compounding their mistreatment when formally complaining about abuse, unless they have the assistance of others in their immediate environment with more power.

Appropriation and denial of authorship often take advantage of prevailing norms in an environment favoring the more powerful over the weaker.

Early career persons challenging what they perceive are injustices may get more blowback than they expect because they are threatening some practices lots of people are doing and accepting without protest.

Caught in an authorship dispute, early career persons may have a sense of injustice. They may be motivated to complain and to rectify the situation and endure whatever cost that involves. But they should not miscalculate and have the expectation that the environment, both local and COPE, will respond with a shared sense of injustice.

What we know

A PhD student lost control of her project when she failed to complete her PhD.

The PhD student complained about not getting a first authorship resulting paper.

The corresponding author, presumably the PhD student’s advisor, declared that the PhD student at not contributed to the experiments and neither the writing nor the analyses reported in the paper were performed by the PhD student.

The University backed up the corresponding author by asserting that universities own the data generated by state funded projects. Furthermore, authorship by PhD students requires that they complete their PhD within the allotted time.

The Committee on Publication Ethics (COPE) called the decision by the University “punitive” and suggested that the journal contact the University and requested a re-investigation and a resolution.

Not surprisingly, the University sided with the corresponding author.

Things to be noted

We don’t know what led up to the PhD student not completing with the allotted time, something that the corresponding author could have influenced.

Journals increasingly require that authorship be based on documented contributions to a paper, but advisers and other faculty members can control students’ ability to make such contributions, even when the research is their own. Faculty can deny access to these activities in ways that undercut any claims of authorship, even for the student’s own project.

So, faculty members can take a student’s work, write up the research without giving the student the opportunity to participate. The faculty can then use the student’s lack of contribution to the writing as a justification for diminished rights to authorship.

I’m not surprised that a complaint to COPE proved ineffective. The committee simply advises journals, and cannot dictate what is done. I’ve seen COPE be quite passive in the face of editors abusing authors. COPE tends to pass issues back to journals, which then passed it back to institutions. The results can usually be predicted.

A case history

Authorship dispute unsatisfactorily resolved by institution [emphasis added]

The journal was contacted with a claim to first authorship of a paper currently published online ahead of print. Print publication was put on hold pending the result of the investigation. The claim to first authorship was based on the claimant stating that they had obtained most results published in the paper during their PhD studies under the supervision of the corresponding author, and contributed to the writing of the text. The claimant provided evidence of this in the form of screenshots of a submission confirmation email and subsequent rejection email from another journal for a manuscript with a similar title, a Word document labelled as the claimant’s PhD thesis and details of overlap with the published paper, and a screenshot of an email reported to have been sent by the claimant to the corresponding author in 2013 containing images used in the published paper.

The corresponding author was contacted and declared on behalf of all authors that the claimant had not contributed to the experiments or writing, and that none of the results shown in the article were performed by the claimant. They explained that the claimant was discharged from the PhD programme before successful completion. The claimant indicated that they wished to dispute this, and the institution was asked to investigate and resolve the dispute.

The institution informed the journal that the knowledge generated during state funded projects was the property of the institution, and only the institution has the ability to agree a copyright transfer in agreement with the corresponding author, and that the corresponding author had full legal and institutional support to determine the author list of papers resulting from the project. They stated that a graduate student may or may not be included as an author on papers deriving from projects to which they have contributed, and according to institutional guidelines, in order to be included as an author, a student must successfully complete their studies within a defined timeframe. The decision to remove the claimant as a co-author was confirmed to have been made because they were dismissed from the graduate programme before successful completion.

ADVICE:

The Forum noted it seems punitive on the part of the university regarding their decision to exclude the student from being an author because they did not complete their studies within a defined timeframe. If the student was in the middle of their training and had submitted a paper, would the institution have handled the case differently? Was the claimant’s role acknowledged in the published article? If not, might the claimant and authors agree to a correction to publish an acknowledgment?

Otherwise, a suggestion was to contact a higher authority at the institution—perhaps a committee on research integrity at the institution— or an oversight body and ask them to investigate and try to resolve the authorship issue. The Forum noted that it is up to the journal to set their own guidelines for authorship, and to clearly state that they follow the ICMJE and COPE guidelines, for example. The journal guidelines should take precedence.

FOLLOW UP:

Following advice from the COPE Forum, the journal approached the highest authority within the university to specifically confirm that the authorship of the paper was determined according to the criteria set by ICMJE/COPE, which they did. No further action was taken. The editor considers the case closed.

RESOLUTION:

Case Closed

Postscript

This could have gone differently.

For whatever reason, a student left the PhD program, presumably after investing a lot of time and effort. In some American programs, the student would be granted a terminal masters degree. As a faculty member, I would probably be inclined to help the student to write up a research paper so they had something to show for their time in the program. My decision would be a matter of charity, not a sense of what the student was owed.

I strongly suspect this case occurred in a European program. The evidence is that the student had a set time to complete the PhD. In the United States, that time period is often more flexible. I doubt there would be a rule in the United States the PhD student whose claims on the work it was not completed in an allotted time. Also, the student apparently was expected to publish their papers during their PhD, rather than waiting until the degree was awarded.

In the United States, PhD students are considered students.  any payment of their tuition or other expenses is considered a scholarship or fellowship. Students are seeing a working on the career. In contrast, in Europe, being a PhD student is a paid hourly position. A student receives health insurance contribution to the retirement fund. Yet, because they are being paid for their work, the workplace (university) retains control of their work.

Why, if you were a cook in a restaurant, you would not expect to take home the last meal you had been preparing, if you were discharged.

 

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Appeal to NICE concerning the Guideline Committee for ME/CFS

please signJohn Peters informs me: “Anyone can sign. The letter is going off with a couple of dozen signatures, but the petition is open to all.”

The petition is here. Please sign.

For many years, patients, charities and scientists have listed the deep flaws in studies promoting CBT and GET for ME/CFS, but NICE has accepted the research uncritically and a major part of its advice on the illness follows this approach. In the past a majority of the members of the Guideline Committee have had a conflict of interest.

In the USA, this research has been rejected by the Centers for Disease Control, the Food and Drug Administration, and the Agency for Healthcare Research and Quality. They and the National Institute of Health and the Institute of Medicine/National Academy do not consider CBT and GET to be effective.

There may be 250,000 patients with ME/CFS in the UK: NICE guidelines not only affect the way they are treated by the medical profession, but may be used by insurance companies and benefit agencies. These agencies may place inappropriate expectations on patients to undergo such therapies, despite a lack of evidence that they are safe, and in the case of GET, a strong response from patients that they can cause severe harm.

We call on NICE to ensure:

1. The process of deciding who determines the membership of the Guideline Committee is open and involves stakeholders.

2. Whoever appoints the members of the Guideline Committee does not have any involvement in research into CBT-GET or is currently using these interventions to try to treat ME/CFS or is a colleague of anyone associated with the CBT-GET model.

3. The selection of members of the Guideline Committee is also an open process and involves stakeholders.

4. No one who has previously been a member of an ME/CFS Guideline Committee is eligible to sit on this new committee.

5. No one with a conflict of interest is allowed to be a member of the Guideline Committee, and that conflict of interest includes any financial interest or researcher allegiance or close working association with someone linked to the CBT-GET model.

6. Stakeholders should have a right of appeal with cause against members selected.

Full letter sent to Sir Andrew Dillon: https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/

More information here: https://www.youtube.com/watch?v=7Y6XFipQigE&feature=youtu.be

On the previous NICE Guideline Committee: https://www.coyneoftherealm.com/blo…based-on-political-considerations-an-exchange

And: https://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams-part-two/

Read the letter

A patient who chooses to live reacts to one who chose to die

I blogged a couple of days ago about Anne Örtegren, a patient long suffering with myalgic encephalomyelitis/chronic fatigue syndrome who chose to end her life after much deliberation. Her poignant last blog written before she died attracted a lot of attention outside and in the community of sufferers.

Here is a brief but insightful response from Wilhelmina Jenkins, who chooses to live and try to inspire others in that choice.

A bit of background about Wilhelmina. She became ill with ME/CFS in 1983 while working on her PhD in physics at Howard University. She described to me the experience of feeling her brain had shut down so that she couldn’t even comprehend the chapter she already written. She became totally disabled in 1987. She was not formally diagnosed until 1988  and became a part of support groups and advocacy efforts since then. Her daughter became ill with this disease in 1991 as a high school student.

ME/CFS is a devastating disease. There’s no question that it burns to ashes the life that you thought you had and leaves you with sickness and pain and a quality of life lower than any other major disease. Many people, after a long struggle, decide that they can’t go on any longer. I understand that. I have felt that way many times. But if you can stay, please stay. We need you. We need every voice in the fight for health equity for those living with this disease. We need your witness. We need your stories. And we need to know that you stand with us in the struggle. I do not care if we agree or disagree about anything – I still want you here. You are unique. You are valuable. Reach out if you are in doubt about going on. There will be a hand there for you to grasp, because even when things are darkest, you are a part of a community and you are loved. And when you choose to stay, if no one else has ever said it, I will – you are my hero.

Follow Wilhelmina Jenkins on Facebook.

Readers may also be interested in  The illusion you will be able bodied forever and the limits of empathy.

 

A sudden reversal of fortune for the biopsychosocial model of illness

Actually, I think this has been coming for a long time, but it just might have happened this morning in the UK online newspaper, The Independent. The public conversation has shifted about the biopsychosocial model of myalgic encephalomyelitis (ME; formerly known as chronic fatigue syndrome) in ways that will not be readily reversed.

Time for unrest: why patients with ME are demanding justice.

A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients based to be taken seriously by doctors.

The Independent article is a long read. I will only ask you to read the first three paragraphs. Unless I am mistaken, you probably read the rest. I encourage you to even count the short three sentence opening as one of those three paragraphs.

“I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.”

I have a brief anecdote about two sobbing, ashamed doctors that I encountered in Amsterdam, but I’ll leave that to the end. Now I only want to pick out a couple of paragraphs that I hope you will not miss if you take on this long read.

The patients’ dilemma

For patients, communicating the seriousness of their illness is often impossible. “I had this experience of trying to describe my symptoms in words to my doctors for 18 months as I was getting worse,” explains Brea. “I would talk about a burning in my brain or my spine or the fact that I would lose the ability to speak or sometimes I would collapse on the floor and I couldn’t lift my head.” When she later requested her medical records almost all of these serious symptoms were translated into “headache pain”.

The biopsychosocial model

Psychosomatic explanations of the disease were being further developed by a small, but influential, group of psychiatrists in the UK. They developed a theory of ME based on the biopsychosocial model of illness, a framework for illness that has also been adopted by the Department for Work and Pensions (DWP), first fully embraced by New Labour. The biopsychosocial model states that illnesses are part biological, part mental, part social. This idea seems common sense, but in practice it is often the psychological elements that are emphasised. Thus, the “biopsychosocial” model of ME is that a patient may have originally had a virus but after that, symptoms are not primarily the result of an ongoing disease process at all. Instead, patients simply have “dysfunctional” or “false” illness beliefs and thus adopt the “sick role”. Spending too much time in bed is the reason they have physical abnormalities, as they become deconditioned due to “exercise avoidance”, and it is assumed that symptoms are reversible by the patient’s own efforts.

My intrusive thought I probably should not share: I wonder if Sir Simon Wessely – if he read this far this morning – is feeling small.

The inseparable politics of the biopsychosocial model

The biopsychosocial model, and the assumption that if people who become disabled from conditions like ME adopted the correct attitudes and behaviours they could recover, seems to appeal to politicians looking to cut the costs of disability payments. “Benefits can often make [ME] patients worse” claimed psychiatrist Simon Wessely, one of the originators of the biopsychosocial model of ME, in 1993 in a meeting with a minister for the disabled. If giving disability benefits to patients, such as those with ME, may foster a culture of dependency, then cutting these benefits can be presented as a positive intervention. According to a document promoting the biopsychosocial framework circulated by Lord Freud, the former minister for welfare reform, it is important for those with health problems like ME to “recognise that the sick role is temporary, in the expectation of recovery” and that giving disability benefits to such patients, may foster a culture of dependency.

The dangerous militancy of patients has been “grossly exaggerated”

Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated. The tribunal which ordered the release of the trial’s data ruled that “assessment of activist behaviour was, in our view, grossly exaggerated”. The most severely ill (about a quarter of patients are bed or housebound) continued to receive no care at all, with 80 per cent of requests for home visits turned down by the NHS. Added to this, a dearth of social care and difficulty getting benefits meant many patients were left completely desperate and often without any support at all, with even family members often disbelieving their illness. The waste of human potential caused by ME was recently reckoned to cost the UK economy £3.3bn a year in a report by The Optimum Health Clinic Foundation.

Your conflict of interest is showing and should be disclosed

As critics are increasingly pointing out, the problems with PACE went beyond bad science. A 2006 report by the parliamentary Group on Scientific Research into Myalgic Encephalomyelitis had already pointed out that there is a “vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness”. The report also mentioned cases where advisers to the DWP had also had consultancy roles in such companies. These links were investigated further by the Centre for Welfare Reform who stated in 2016 that: “Emphasising the importance of psychosocial factors and classing ME as a mental health problem could bring immediate financial benefits to insurance companies when policies limit payouts for mental health problems.”

The Americans have moved on

Across the pond in the US, science is moving on. In 2013 the US government asked the Institute of Medicine to convene an expert committee to examine the evidence base for ME. Two years later, their report Redefining an Illness was published. The report stated ME is “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. After reviewing thousands of medical papers, the report “stresses that this is a medical – not a psychiatric or psychological – illness”.

Two sobbing, ashamed physicians

I spoke at a showing of Unrest at Amsterdam Medical Centre in October. You can find a copy of a video here.

After the showing, I was leaving to meet friends for dinner. I stopped when I encountered two stylish women still sitting in their seats in the emptying auditorium, sobbing as if one of them had just received a diagnosis of cancer. I said “Excuse me, can I help?” One woman started to talk, but the other had to finish for her.

“My sister and I are both physicians. We just learned tonight how much harm we had been doing to our patients. We were only trying to do what was best for them, but we refused to listen to them. We feel very badly.”

I said:

“I believe that you thought you would doing what was best. Now you feel differently. I’ll bet a lot of your colleagues aren’t there yet. Maybe you and your sister can feel a bit better about yourselves if you help your colleagues get there.”

I turned and walked anyway without seeing their responses.

 

Systematic review shows no improvement in quality of mindfulness research in 16 years

Should we still take claims about mental health benefits of mindfulness with a grain of  salt? A systematic review by one of mindfulness training’s key promoters suggests maybe so.

saltCritics have been identifying the same weaknesses in mindfulness research for almost two decades. This review suggests little improvement in 16 years the quality of randomized trials for mental health problems.

This study examined 171 articles reporting RCTs for:

(a) active control conditions, (b) larger sample sizes, (c) longer follow-up assessment, (d) treatment fidelity assessment, (e) reporting of instructor training, (f) reporting of ITT samples.

What was missed

Whether articles reporting RCTs had appropriate disclosure of financial or other conflicts of interest. COI pose significant risk of bias, especially when they are not reported.

This article discloses authors’ interests. One of the authors, Richard Davidson is a prominent promoter of mindfulness training.  A Web of Science search of Davidson RJ and mindfulness yielded 26 articles from 2002 to 2016. It would be interesting to check in see if these consistent weaknesses in mindfulness research are mentioned in these articles. To what extent do RCTs with Davidson as an author had these weaknesses, like being underpowered?

Critic: You say financial interests or other investments in a treatment are a risk of bias. Yet, this article is critical of mindfulness research. Wouldn’t you expect a more positive appraisal of the literature because of the authors having a confirmation bias?

Not necessarily. Conflicts of interest are a risk of bias, but don’t discredit an author, They only alert readers to be skeptical. Furthermore, the weaknesses in this literature are so pervasive, it would be difficult to put a positive spin on them.  Besides calling attention to specific weaknesses that need to be addressed in future research can become part of a pitch for more research.

The article

Goldberg SB, Tucker RP, Greene PA, Simpson TL, Kearney DJ, Davidson RJ. Is mindfulness research methodology improving over time? A systematic review. PLOS One. 2017 Oct 31;12(10):e0187298.

End of paper conclusion:

In conclusion, the 16 years of mindfulness research reviewed here provided modest evidence that the quality of research is improving over time. There may be various explanations for this (e.g., an increasing number of novel mindfulness-based interventions being first tested in less rigorous designs; the undue influence of early, high-quality studies). However, it is our hope that demonstrating this fact empirically will encourage future researchers to work towards the recommendations here and ultimately towards a clearer and scientifically-informed understanding of the potential and limitations of these treatments.

From the abstract

Objectives

The current systematic review examined the extent to which mindfulness research demonstrated increased rigor over the past 16 years regarding six methodological features that have been highlighted as areas for improvement. These feature included using active control conditions, larger sample sizes, longer follow-up assessment, treatment fidelity assessment, and reporting of instructor training and intent-to-treat (ITT) analyses.

Data sources

We searched PubMed, PsychInfo, Scopus, and Web of Science in addition to a publically available repository of mindfulness studies.

Study eligibility criteria

Randomized clinical trials of mindfulness-based interventions for samples with a clinical disorder or elevated symptoms of a clinical disorder listed on the American Psychological Association’s list of disorders with recognized evidence-based treatment.

Study appraisal and synthesis methods

Independent raters screened 9,067 titles and abstracts, with 303 full text reviews. Of these, 171 were included, representing 142 non-overlapping samples.

Results

Across the 142 studies published between 2000 and 2016, there was no evidence for increases in any study quality indicator, although changes were generally in the direction of improved quality. When restricting the sample to those conducted in Europe and North America (continents with the longest history of scientific research in this area), an increase in reporting of ITT analyses was found. When excluding an early, high-quality study, improvements were seen in sample size, treatment fidelity assessment, and reporting of ITT analyses.

Conclusions and implications of key findings

Taken together, the findings suggest modest adoption of the recommendations for methodological improvement voiced repeatedly in the literature. Possible explanations for this and implications for interpreting this body of research and conducting future studies are discussed.

Competing interests

RD is the founder, president, and serves on the board of directors for the non-profit organization, Healthy Minds Innovations, Inc. In addition, RD serves on the board of directors for the Mind and Life Institute. This does not alter our adherence to PLOS ONE policies on sharing data and materials

The variables examined in the systematic review

Six methodological features that have been recommended in criticisms of mindfulness research [10–12. 14]. These include: (a) active control conditions, (b) larger sample sizes, (c) longer follow-up assessment, (d) treatment fidelity assessment, (e) reporting of instructor training, (f) reporting of ITT samples.

…We graded the strength of the control condition on a five-tier system. We defined specific active control conditions as comparison groups that were intended to be therapeutic [17]. More rigorous control groups are important as they can provide a test of the unique or added benefit a mindfulness intervention may offer, beyond non-specific benefits associated with the placebo effect, researcher attention, or demand characteristics [11,14]. Larger sample sizes are important as they increase the reliability of reported effects and increase statistical power [11]. Longer follow-up is important for assessing the degree to which treatment effects are maintained beyond the completion of the intervention [10]. Treatment fidelity assessment allows an examination of the degree to which the given treatment was delivered as intended [12]. Treatment fidelity is commonly assessed through video or audio recordings of sessions that are coded and/or reviewed by treatment experts [18]. We coded all references to treatment fidelity assessment (e.g., sessions were recorded and reviewed, a checklist measuring adherence to specific treatment elements was completed). Relatedly, reporting of instructor training increases the likelihood that the treatment that was delivered by qualified individuals [12], which should, in theory, influence the quality of the treatment provided. Lastly, the reporting of ITT analyses involves including individuals who may have dropped out of the study and/or did not complete their assigned intervention [12]. Generally speaking, ITT analyses are viewed to be more conservative estimates of treatment effects [19,20], and are preferred for this reason.

 

Checking graphs in articles: Binge drinking in women dramatically increasing, while binge drinking in men decreasing.

From 2002 to 2013, binge drinking decreased by 2% in men while it increased by 13% in women.

Huge differences in alcohol consumption by most people versus the upper 10%.

I wanted to blog about a recent article in The New York Times about binge drinking, but with a different focus than that of the author. Gabrielle Glaser is the author of the recent book Her best-kept Secret: why women drink – how they can regain control. She’s more interested in getting into issues of treatment, which is the focus of the book. I want to focus on a provocative chart the article, that probably underscores her some of her points in the article more than she emphasized.

A reminder to check tables and graphs in articles. Don’t just gloss over the valuable information they may display.

But before I could write my blog, I discovered that my Facebook friend Mike Miller was already discussing it on his personal page. So I just borrowed from that with attribution. Then I found that he had previously touched on this topic and so I reproduced it as well. I recommend becoming Mike Miller’s friend on Facebook. I found it worth it to have his posts displayed at the top when I go to my news feed.

The article

The New York Times article is

The graph

who is drinking

What Mike Miller has to say about the graph:

The headline doesn’t say it, but the drawing suggests it — the “people consuming more alcohol” are women. From 2002 to 2013, binge drinking decreased by 2% in men while it increased by 13% in women. I’ve been noticing a few alcohol marketing and advertising schemes targeting women recently. You might also have noticed that the booze industry has broken it’s decades-old promise not to advertise hard liquor on television. They started doing it a few years ago and they’ve been ramping up since then. They’ve been using product placement and movies like “Bad Moms” and sneaky ads like the one shown in my first comment. The usual message is that parenting is very stressful and alcohol is great for stress and good clean fun, so let lose and have a drink. I also see this way of thinking promoted on Facebook.

Mike’s current Facebook page directs us to an earlier comment that he made about a graph in another article

Mike Miller September 26, 2014 ·

The article in the Washington Post

Think you drink a lot? This chart will tell you

The graph

drink alot chart

Mike’s comment

This is nuts! Friends of mine in Epidemiology who studied alcohol consumption told me about this years ago — that most consumption is by alcoholics and the alcohol industry is very aware of it. So the chart shows that half of American adults are drinking an average of about 1.7 drinks per *year* while the upper 10% is drinking 7 times that much per *day*. It looks like about 75% of consumption is by alcoholics.

An American academic attempting to attend a PhD defense treated as a refugee at Schiphol, the Amsterdam airport

border controlAmericans are getting all too accustomed to hearing stories of US-based researchers being denied reentry into the United States after a visit to their native homelands. We also hear of conference speakers being denied entry into the United States at airports. We must not let this become the new normal.

Unfortunately, the US is not alone. A Dutch academic colleague recently reported his experience attempting to come to the rescue of an American researcher arriving to attend a PhD ceremony who was denied entry at Schiphol.

adriaan

Dr. Adriaan Visser

I give his account below as a guest blog. I asked him for clarification on one point. Dr. Visser told me that so far American colleague had to pay all fees out of her own pocket.

Adriaan Visser

A scientist treated as a refugee at the Dutch border

An US researcher from the Johns Hopkins University (Baltimore) was refused entry into the Netherlands, when arriving at Schiphol airport to attend three PhD defenses at the Free University (Amsterdam) about health care in Ethiopia.

She had supervised these PhD candidates for years. She was required to be at the ceremony as co-supervisor. The main reason for refusing her entry was that the total of her earlier stays of in NL exceeded 90 days by 5 days. Neither she nor I knew about that limitation. It had never been explained by border control.

A little drama unfolded, well known from the treatment of refugees at the Dutch border. After five hours waiting to get a 12 page pre-coded document, there was some unsympathetic communication with the border police. Not understanding the reason of her stay, they mentioning her “so-called type of professor”. The Dutch legal right to consult a superior and to contact a lawyer were not granted. The police forced me to leave the boarder, telling me if I didn’t, force would be used. An hour later, my American colleague was sent back to Washington D.C., escorted by a border police to the waiting plane. Her passport was given to the flight attendant.

Cost for the Dutch government: 2,300 euros.

After a lot of negotiation in the USA with a Dutch lawyer and support by the Free University, she got the permission to return to the Netherlands for four days to attend the PhD defenses as co-supervisor.

Cost: Several thousand dollars for the tickets and lawyer’s fee.

My belief in a human constitutional approach at the border fell below Dutch level.

Adriaan Visser, PhD, researcher/psychologist, Director of Pro-Health.org, Rotterdam, NL

brexitJCC: Post-Brexit British academics, this could happen to you.

 

NJ Psychological Association challenges APA Clinical Practice Guideline for the Treatment of PTSD

 

quick takes

ptsd guidelinesThe APA guidelines can be found here 

From: Charity Wilkinson <wilkinson.charity@gmail.com>

Subject: [abct-members] APA PTSD Clinical Practice Guideline Being Questioned by NJPA

Date: December 22, 2017 at 7:44:44 PM CST

To: ABCT Member List <abct-members@lists.abct.org>

Reply-To: ABCT Member List <abct-members@lists.abct.org>

Dear Colleagues,

I’m writing to bring to your attention that the NJ Psychological Association issued statement today indicating that they sent a message to the APA expressing concern about the Clinical Practice Guideline for the Treatment of PTSD. This action was taken when a group of over 75 psychologists in NJ signed a letter opposing the Guideline. Though many of us sent statements to the NJPA supporting the Guideline, our statement was ignored.

The NJPA’s statement advocates for psychologists practicing from psychodynamic and other orientations who believe that their work has been wrongfully excluded. They have indicated that they fear the loss of their livelihood, insurance companies not funding their work, and the opportunity for clients to receive psychodynamic and other treatments that were not included. The statement also suggests that all treatments yield results and that RCT’s should not have been as strongly considered in the development of the Guideline.

I would ask that ABCT members and perhaps leadership create a statement in support of the APA PTSD Guideline.

Thank you for your consideration.

Sincerely,

Charity Wilkinson-Truong

This is why APA has been so reluctant to take a stand and set guidelines about what is evidence-based psychotherapy and what is not.

See my post of a while ago (2012)

Troubles in the Branding of Psychotherapies as “Evidence Supported”

 

Carly Maryhew’s Open letter to TEDxBristol regarding Esther Crawley’s “Disrupting Your View of ME” presentation

Carly Maryhew’s recent open letter to TEDxBristol concerning the failure of Esther Crawley’s recent talk to adhere  to TEDx’s explicit content guidelines is a gem, well worth a read by a general audience.

CaptureAt one level, her letter is a contribution to the ongoing debate about just how infrequently TEDx talks live up to the claim of “Only good science.” We need to amplify and broaden this conversation because the noble concept of a TEDx talks desperately needs rescuing from what TEDx talks have become.

At another level, the letter is a searing indictment of Esther Crawley’s”Disrupting Your View of ME” talk with blow-by-blow pitting of what Crawley said versus the explicit TEDx guidelines.  That Carly Maryhew was a practicing lawyer before she became ill with myalgic encephalomyelitis/chronic fatigue syndrome is apparent.

I had to ask Carly, though, where did the great flashes of activist citizen scientist apparent in the letter come from? After all, this would be an excellent conference presentation about pseudoscience and politics being passed to consumers as science. Carly’s reply something that I commonly hear from the new wave of patient actors/citizen scientist:

“It’s out of necessity to analyze scientific research and related content, mostly from interacting with other patients.”

As Carly’s open letter documents, it’s that very achievement of the patient community that the Esther Crawley is attempted to deny and smear with character assassination and artistic license.

More than that, she argues that one unblinded trial with switched, subjective outcomes does not make a quack treatment evidence-based.

We should look forward to receiving the courtesy of a response from TEDxBristol and gently nudge them if one is not forthcoming. Dissatisfied viewers of the Crawley talk keep posting critical comments at the TEDxBristol, but commentary keeps getting hidden from view from all but those who posted. I recommend anyone who had their comments hidden, submit them as comments moderation at this blog site.

Comments have also been disabled at the official video of Esther Crawley’s talk.

Carly Maryhew’s Open Letter 

15 December 2017

To whom it may concern at TEDxBristol:

As an ME patient, it was with great interest that I watched Professor Esther Crawley’s TEDxBristol talk “Disrupting Your View of ME” on 2 November 2017. Unfortunately, the contents of that talk did not seem to comply with the standards of TEDx, as described in the TEDx Content Guidelines.[1] While that might be sufficient to result in the video merely being displayed with a warning regarding the contents, there are other portions of Professor Crawley’s presentation which are highly offensive for reasons which may not be readily apparent, discussed below. Accordingly, I request that the entire video not be posted by TEDxBristol, either on its own site or on YouTube.

“Guideline 4: Only Good Science”

The most obvious concern is that in much of Professor Crawley’s TEDx talk she is referring to her recently published trial, Specialist Medical Intervention and Lightning Evaluation,[2] abbreviated as SMILE. The “Lightning” in the name of the trial refers to the Lightning Process (LP),[3] a specific form of neuro-linguistic processing (NLP)[4] which was developed and commercialized by Phil Parker.

“Claims made using scientific language should:

  • Be testable experimentally.
  • Be based on theories that are also considered credible by experts in the field.

Claims made using scientific language should not:

  • Be so obscure or mysterious as to be untestable
  • Be based on experiments that can not be reproduced by others
  • Be considered ridiculous by credible scientists in the field.”

Contrary to TEDx guidelines, her claims of success based on the SMILE trial are not testable experimentally due to a failure of her paper to describe the process used by the Lightning Process. This information is also not commonly available online, except via patient accounts, due to Phil Parker requiring that customers not discuss it.[5] LP and the NLP methodology which it is based on are both widely considered debunked pseudoscience by the mainstream medical community.[6]

“Claims made using scientific language should:

  • Be backed up by experiments that have generated enough data to convince other experts of its legitimacy.
  • Show clear respect for the scientific method and scientific thinking generally.

Claims made using scientific language should not:

  • Be based on data that do not convincingly corroborate the experimenter’s theoretical claims.”

There has been no evidence to establish the legitimacy of LP or NLP for any disorder, and Phil Parker has been specifically forbidden to promote LP as a cure for ME/CFS.[7] Other studies conducted into NLP have shown it to be ineffective for other disorders.[8] Indeed, despite Professor Crawley’s claims of success, the methodological flaws in her work mean that her own study has failed to demonstrate effectiveness, due to relying solely on subjective outcomes combined with a lack of blinding or adequate control group.

Such subjective outcome measurements are especially problematic when the treatment itself demands that the customers proclaim it is effective to make it work, as happens in the case of LP,[9] and may be compounded when the subjects are children who may be especially vulnerable to such pressures. As a demonstration of the pressures placed upon children by LP to be accountable for curing themselves, children have been known to attempt suicide when LP fails to work.[10]

“Claims made using scientific language should:

  • Not fly in the face of the broad existing body of scientific knowledge.”

It should be obvious that it flies in the face of reason (and a large body of biomedical research) to claim that any disease or other condition can be successfully treated by teaching children to say “STOP” and make a ritualistic movement.[11] Various patient accounts indicate that they are told symptoms will go away if they stop “doing” their illness, by suppressing negative thoughts to enable them to “grow new neural pathways.”[12]

Professor Crawley’s Accusations

Although I could not find a TEDx guideline regarding making untrue statements on the stage, presumably that is because it is a problem which is so obvious that it shouldn’t need a guideline. Yet it did happen during Professor Crawley’s TEDxBristol talk, much the same as it happened in other recent talks she has given to medical personnel in various venues.[13] At approximately 9:05-9:40 during her TEDxBristol talk, a slide is displayed with a threat written in the style of a stereotypical ransom note. Professor Crawley says “This is an email that I got a few years ago. It was used on the front cover of the Sunday Times, to discuss the research environment for chronic fatigue syndrome. I still laugh at the idea that someone was going to cut my balls off (laughter from audience). Does make you wonder.”

However, this note was not emailed (at least not as a threat) to her. It was an artistic compilation made by an employee of the Sunday Times to sensationalize unsubstantiated threats which another controversial researcher claimed he had received via phone calls.[14] In that article, there is no claim that she received such a threat, though she did claim to receive an email calling her an evil bastard.[15] A recent correspondence from Bristol University, in response to a Freedom of Information Act request from the ME children’s charity Tymes Trust, indicated that they had “received no official reports of harassment of University staff by a third party” from 2010-2017.[16]

It is possible that threats were received by Professor Crawley, albeit not reported, and any such harassment and threats would be universally condemned by the ME/CFS community. But any such harassment categorically did not consist of the letter which Professor Crawley displayed during her TEDx talk, and it is grossly inappropriate for it to have been used in that context, especially with joking that someone meant to cut off her balls, when she knew very well that such threats had never been addressed to her. I cannot claim to know what would motivate someone to misrepresent such a vile threat, but these accusations typically surface when a controversial researcher is facing criticism from patients, doctors, researchers, and other academics due to making absurd claims based on research using shockingly poor methodology,[17] such as was used in the SMILE trial to generate positive results for a therapy which is indisputable pseudoscience.[18]

Similarly, opponents of their work are frequently compared to climate denialists, animal rights activists, and anti-vaxxers,[19] in an attempt to discredit us. The claims which Professor Crawley made in her TEDx talk regarding “a few people and a few organizations” trying to stop their research into ME/CFS is only partly accurate. Patients and patient organizations are indeed trying to stop them from performing unethical and shoddy research which diverts valuable funds from serious researchers who use rigorous methodology to test clear hypotheses. But these are a large majority of ME/CFS patients and nearly every patient organisation,[20] joined by ME/CFS experts, biomedical ME/CFS researchers, and academics based in universities around the world.[21] Our opposition to their research practices and influence does not take the form of threats or harassment, but rather consists of parliamentary questions, Freedom of Information Act requests, petitions, blogs, social media commentary, letters published in scientific journals, and published scientific articles.[22]

Accordingly, I hope that you can understand why patients and their supporters find Professor Crawley’s talk to be so upsetting. Not only is she promoting blatant pseudoscience and making false accusations against the patients who oppose her work, she goes so far as to brazenly suggest that she should be our voice. As at ME/CFS patient, my response is that we must be allowed to speak for ourselves, and that those of us who are too ill to speak should be spoken for by our caregivers and other loved ones.[23] All Professor Crawley needs to do is to stop attempting to silence us.

Additionally, I believe that children with ME/CFS can speak for themselves and be heard when they want to, and even they recognise the SMILE trial’s LP nonsense for what it is. In the words of 10 year old patient Shannon Tiday: “They say ‘raise your hand out and say stop?’ Don’t you think I tried that? What is wrong with these people? Well people’s people, you can’t stop them. And that’s not our fault, so don’t think it’s our fault!”[24]

I would very much appreciate TEDxBristol’s assistance in this by denying Professor Crawley a platform for dangerous pseudoscience and baseless accusations against the ME/CFS patient community.

Thank you,

-Carly Maryhew

A full set of references for the bracketed numbers are available here 

 

 

Unfunny 2017 BMJ Christmas articles not in the same league with my all-time favorite

Which is: A systematic review of parachute use to prevent death and major trauma

I agree with Sharen Begley’s assessment in Stat of this year’s BMJ Christmas issue as a loser.

tenorA BMJ Christmas issue filled with wine glasses, sex, and back pain brings out the Grinch in us

Bah! … humbug. Is it just us, or is the highly anticipated Christmas issue of the BMJ (formerly the British Medical Journal) delivering more lumps of coal and fewer tinselly baubles lately?

Maybe it’s Noel nostalgia, but we find ourselves reminiscing about BMJ offerings from Yuletides past, which brought us studies reporting that 0.5 percent of U.S. births are to (self-reported) virgins, determining how long a box of chocolates lasts on a hospital ward, or investigating Nintendo injuries.

I agree with her stern:

Note to BMJ editors: Fatal motorcycle crashes, old people falling, and joint pain — three of this year’s Christmas issue studies — do not qualify as “lighthearted.”

My all-time favorite BMJ Christmas article

Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials

 

With its conclusions:

As with many interventions intended to prevent ill health, the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials. Advocates of evidence based medicine have criticised the adoption of interventions evaluated by using only observational data. We think that everyone might benefit if the most radical protagonists of evidence based medicine organised and participated in a double blind, randomised, placebo controlled, crossover trial of the parachute.

The brief article is actually a great way to start a serious discussion of randomized trials with a laugh.

Parachutist-splashWe can all agree that we wouldn’t participate in a randomized trial of parachutes. Any effort to conduct a systematic review and meta-analysis of such studies would answer up , formally speaking, as a failed meta-analysis. We we could start with a rigorous systematic search, but still end up with no studies to provide effect sizes. That’s not a bad thing, especially one as an alternative to making recommendations on weak or nonexistent data.

I would like to see a lot more formally declared failed meta-analyses by the Cochrane collaboration.  Clearly labeled failed meta-analyses much preferable to recommendations consumers and policymakers for treatments based on a small collection of methodologically weak and underpowered trials. It happens just too much.

If the discussion group were ripe for it, we could delve into when randomized trials are not needed or what to do when there aren’t randomized trials. I think one or more N = 1 trials not using a parachute or similar device would be compelling, without a nonspecific control group. On the other hand, many interventions that have been justified only by observational trials turn out not to be effective when RCT is finally done.

Keep a discussion going long enough of when RCTs can’t provide suitable evidence, and you end up in a predictable place. Someone will offer a critique of RCTs as the gold standard for evaluating interventions or maybe of systematic reviews meta-analyses of RCTs being a platinum standard. That can be very fruitful too, but sooner or later can get someone proposing alternatives to the RCT because their pet interventions don’t measure up in RCTs. Ah, yes, RCTs can capture the the magic going on long-term psychodynamic psychotherapy.

[For review of alternatives to RCTs that I co-authored, see Research to improve the quality of care for depression: alternatives to the simple randomized clinical trial ]

Ghosts of Christmases Past

Searching for past BMJ Christmas articles can be tedious. If someone can suggest an efficient search term, let me know. Fortunately the BMJ last year offered a review of all-time highlights

Christmas crackers: highlights from past years of The BMJ’s seasonal issue

BMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i6679 (Published 15 December 2016)

Cite this as: BMJ 2016;355:i6679

For more than 30 years the festive issue of the journal has answered quirky research questions, waxed philosophical, and given us a good dose of humour and entertainment along the way.

A recent count found more than 1000 articles in The BMJ’s Christmas back catalogue. A look through these shows some common themes returning year after year. Professional concerns crop up often, and we seem to be endlessly fascinated by the differences between medical specialties. Past studies have looked at how specialties vary by the cars they drive,7 their ability to predict the future,8 and their coffee buying habits.9 Sometimes the research findings can challenge popular stereotypes. How many people, “orthopods” included, could have predicted that anaesthetists, with their regular diet of Sudoku and crosswords, would fare worse than orthopaedic surgeons in an intelligence test?1

It notes some of the recurring themes.

Beyond medical and academic matters, enduring Christmas themes also reflect the universal big issues that preoccupy us all: food, drink, religion, death, love, and sex.

This broad theme encompasses one of the most widely accessed BMJ Christmas articles of all times

In 2014 Ben Lendrem and colleagues explored differences between the sexes in idiotic risk taking behaviour, by studying past winners of the Darwin Awards.4 As the paper describes: winners of these awards must die in such an idiotic manner that “their action ensures the long-term survival of the species, by selectively allowing one less idiot to survive.”

There is also an interesting table of the four BMJ Christmas papers that won Ig Noble prizes:

Christmas BMJ papers awarded the Ig Nobel prize

  • Effect of ale, garlic, and soured cream on the appetite of leeches (winner 1994)15

  • Magnetic resonance imaging of male and female genitals during coitus and female sexual arousal (1999)13

  • Sword swallowing and its side effects (2006)16

  • Pain over speed bumps in diagnosis of acute appendicitis (2012)17