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Life with migraine in patients’ own words

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Online, it’s easy to find people sharing what it’s like to life with migraine and the impact it has on their lives. Take a look at medical literature and patients’ experiences are scarce. In part, that’s by design—medical research largely looks at the pathophysiology and treatment options for an illness rather than focusing on patients’ experiences—but it’s also incomplete. How can health care providers know how to best treat people with migraine if they don’t understand the experience of living with the condition?

There are excellent studies based on surveys of patients responding to questions about life with migraine. That’s how we know the level of disability people experience during migraine attacks, the impact of migraine on the family, and the degree of stigma patients experience, for example. They provide insight, but not in the patients’ own words.

Which is why I was thrilled to find Learning the Full Impact of Migraine Through Patients Voices: A Qualitative Study, published in the July/August 2021 issue of the journal Headache. It shares the experience of living with migraine as told through the stories of people with migraine.

This is significant research because it moves patients stories out of the realm of anecdote and turns them into data with a fairly large number of participants. The idea of stories becoming data may seem off-putting, but it’s incredibly useful for painting a broader picture of life with migraine. Health care providers are trained in science. While the best providers take anecdotes into account when treating patients, they still rely heavily on data. This study provides data in patients’ own words.

The themes that emerged resonate deeply with my experience of migraine and the experiences of others that I’ve heard over 16 years of advocacy work. The six themes and their subthemes are:

Overall negative impact on life:

  • Migraine controls life
  • Migraine makes life more difficult
  • Migraine attacks are disabling
  • Lack of control over migraine attacks
  • Pushing through migraine attacks

Migraine’s impact on emotional health:

  • Isolation
  • Anxiety
  • Frustration/anger
  • Guilt
  • Mood changes/irritability
  • Depression/hopelessness

Migraine’s impact on cognitive function:

  • Trouble concentrating
  • Difficulty communicating

Migraine’s impact on specific parts of life:

  • Work/career (which results in guilt, change of job status, presenteeism, financial impact, school impact)
  • Family life (which results in frustration, guilt, disrupted time)
  • Social life (which results in irritability, altered plans, communication issues)

Fear and avoidance:

  • Assuming the worst scenario for attacks
  • Fearing future attacks
  • Avoiding things to try to avoid a migraine attack

Stigma:

  • Externalized
  • Internalized

Patients stories were gathered as part of research on mindfulness-based stress reduction for migraine. The original intent wasn’t to tell the stories of patients, but to capture patients’ experiences during the research. So they weren’t asked generally about how migraine impacted their emotional wellbeing, but were asked if the intervention being tested in the research impacted their emotional wellbeing. That’s not a flaw, but an exciting opportunity for future research. From years of listening to people with migraine tell their stories, I expect that direct questions would show migraine’s impact on quality of life is even greater than these researchers found.

What do you think? Do these themes resonate with you? Are there other themes you think should be included?

Photo by Mikel Parera on Unsplash


Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

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sarcozona
11 days ago
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Property insurers update risk modelling as Canada braces for climate impacts

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Monte Lake

The estimated $78 million in insured property damage from the wildfire that devastated the community of Lytton, B.C., in June is a fraction of the rising costs of disasters fuelled by climate change, the Insurance Bureau of Canada says.

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sarcozona
31 days ago
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dreadhead
32 days ago
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Vancouver Island, Canada
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A Federal Cop Devised a Bogus Sex Trafficking Ring and Jailed This Teen for 2 Years. The Cop Can’t Be Sued. – Reason.com

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For years, St. Paul police officer Heather Weyker was swamped. She gathered evidence, cultivated witnesses, filled out the police reports, testified under oath—all in connection with an interstate sex trafficking ring run by Somali refugees. But perhaps most impressive is that she did all that while fabricating the same ring she was investigating, which resulted in 30 indictments, 9 trials, and 0 convictions.

Hamdi Mohamud, then a 16-year-old refugee from Somalia, found herself caught up in that scheme in 2011, when one of Weyker's witnesses, Muna Abdulkadir, tried to attack her and her friends at knifepoint. Mohamud called the police, and Weyker intervened—on behalf of Abdulkadir. She arrested Mohamud and her friends for allegedly tampering with a federal witness, and Mohamud subsequently spent two years in jail before the trumped-up charges were dismissed.

While Mohamud lost those two years of her life, Weyker has not paid any price—not in spite of her position, but because of it. Since the officer conducted her investigation as part of a federal task force, she is entitled to absolute immunity and cannot be sued, the U.S. Court of Appeals for the 8th Circuit ruled last year.

It's not because the "sex trafficking" investigation—which consisted of Weyker conjuring fake information, editing police reports, fabricating evidence, and lying under oath, among other things—was legitimate. On the contrary, the court says it was "plagued with problems from the start" and notes that Weyker employed "lies and manipulation" to put people behind bars. Legally speaking, none of that matters.

What does matter is a line of Supreme Court jurisprudence that has made suing a rights-violating federal officer almost out of the question. Had Weyker acted in her capacity as a state or local cop, Mohamud would have been permitted to bring her claim before a jury of her peers. Yet the most powerful officers are held to the lowest standard of accountability.

Mohamud hopes to change that standard by asking the Supreme Court to hear her case, which she made official last week.

The problem here isn't qualified immunity, the doctrine that shields police officers and other state actors from federal civil suits unless the way the government violated your rights has been litigated almost exactly in a prior court precedent. That's an onerous standard to meet. It has, for example, protected two police officers who allegedly stole $225,000 while executing a search warrant, because no prior court ruling had said stealing in those circumstances is unconstitutional. The legal principle has been at the center of criminal justice reform efforts over the last year.

But Mohamud cleared that hurdle. The United States District Court for the District of Minnesota ruled that Weyker's actions so clearly made a mockery of the Constitution that she could not skirt the suit. The 8th Circuit then overturned that decision on appeal, citing Weyker's temporary federal badge, while in the same breath acknowledging the depravity of her actions.

"Qualified immunity makes it very, very difficult to sue government officials," says Patrick Jaicomo, an attorney at the Institute for Justice, the libertarian public interest law firm representing Mohamud. "This makes it impossible."

There's a Supreme Court decision that should, in theory, give Mohamud the avenue to redress she needs. In Bivens v. Six Unknown Named Agents of the Federal Bureau of Narcotics (1971), the high court allowed a victim to go before a jury after federal cops conducted a drug raid on his apartment without a warrant and later strip-searched him at the courthouse.

But since then the Court has undermined its own decision in almost comical ways. In 2017, the justices ruled in Ziglar v. Abbasi that lower courts should pinpoint "special factors counseling hesitation" when considering suits against federal cops. In practice, that has meant just about whatever a judge can cook up.

Yet even Abbasi notes that Bivens should be applied robustly for Fourth Amendment claims, and Mohamud's suit rests on the Fourth Amendment. That has been lost on the 8th Circuit.

"Bivens is actually a great decision," says Anya Bidwell, another attorney for Mohamud. "It does provide a cause of action for a violation of Fourth Amendment rights. We want Bivens to be interpreted robustly and allow individuals to seek damages for violations of constitutional rights."

Whether or not the Supreme Court will clarify its oscillating guidance remains to be seen. But last year the justices may have given a hint about where they're leaning when they unanimously ruled that a group of Muslim men should have the right to sue a group of federal cops who violated their religious freedom rights. Jaicomo distills Justice Clarence Thomas' opinion in that case down to its core: "He [essentially] says the availability of damages against federal officers is as old as the Republic itself."

A decade after wrongly losing the end of her teenage years in jail, Mohamud has not yet been able to make use of that lever against the perpetrator, who is still employed by the St. Paul Police Department. "It simply makes no sense that the Fourth Amendment applies with less rigor for someone who happens to work for the federal government," says Bidwell. "This is unsustainable. It just makes no sense."

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mkalus
30 days ago
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iPhone: 49.287476,-123.142136
sarcozona
31 days ago
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iridesce
33 days ago
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DC
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What’s the Proper Metaphor for the Covid Vaccine?

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For The Atlantic, Katherine Wu writes about the difficulty of communicating how vaccines work and how they protect individuals and communities from disease: Vaccines Are Like Sunscreen… No, Wait, Airbags… No, Wait…

Unfortunately, communal benefit is harder to define, harder to quantify, and harder to describe than individual protection, because “it’s not the way Americans are used to thinking about things,” Neil Lewis, a behavioral scientist and communications expert at Cornell, told me. That’s in part because communal risk isn’t characteristic of the health perils people in wealthy countries are accustomed to facing: heart disease, stroke, diabetes, cancer. Maybe that’s part of why we gravitate toward individual-focused comparisons. Slipping into a pandemic-compatible, population-based frame of mind is a big shift. In the age of COVID-19, “there’s been a lot of focus on the individual,” Lewis told me. That’s pretty at odds “with how infection works.”

As someone who has struggled with analogizing the virus & vaccines, I was nodding my head a lot while reading this. Something I’ve noticed in recent years that Wu didn’t get into is that readers desire precision in metaphors and analogies, even though metaphor is — by definition! — not supposed to be taken literally. People seem much more interested in taking analogies apart, identifying what doesn’t work, and discarding them rather than — more generously and constructively IMO — using them as the author intended to better understand the subject matter. The perfect metaphor doesn’t exist because then it wouldn’t be a metaphor.

Tags: Covid-19   Katherine Wu   language   medicine   science   vaccines
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sarcozona
31 days ago
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"communal risk isn’t characteristic of the health perils people in wealthy countries are accustomed to facing: heart disease, stroke, diabetes, cancer." Actually it's a pathology of western countries that these things are seen individually. These things aren't randomly distributed in a population - they depend on how exposed to pollution you were, whether people treat you like shit because of racism or sexism or homophobia or whatever, how fucked up your childhood was, whether you live in a walkable neighbourhood or have access to real food. We deal with environmental injustice, inequality, poverty, etc and those things go way the fuck down.
DMack
34 days ago
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how about... march 2020: if you wait 2 weeks, you can have all the marshmallows you want, or you can eat the marshmallow now and millions of people will get sick and die
[the test subject isn't listening because they're busy booking a cruise]
Victoria, BC
cosmotic
34 days ago
Are any of the people who couldn't keep their dick in their pants for two weeks second guessing themselves with hindsight? Would they still trade two weeks for two years and now approaching 700,000 deaths (at least in the US)? Somewhat ironically it seems the idiotic reaction is having a huge unintended positive impact on minimum wage. A nice silver lining if it lasts.
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When it comes to breakthrough cases, are we ignoring long Covid once again? | Coronavirus | The Guardian

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On 1 May, the US Centers for Disease Control and Prevention stopped tracking breakthrough infections that did not lead to hospitalization or death. Its rationale was to “​​maximize the quality of the data collected on cases of greatest clinical and public health importance”, making the continued assumption that non-hospitalized Covid cases are not important but “mild”: without complications, manageable at home, where patients fully recover in two weeks.

I have dealt with persistent symptoms for 17 months – an illness now called “long Covid” – and not collecting data based on this assumption is an enormous mistake, one that has persisted throughout the pandemic and has severe consequences moving forward.

We know much more about long Covid than we did this time last year – enough for us to know it’s severe. Research has found ongoing endothelial dysfunction, hypometabolism in the brains of long Covid patients, microclots in long Covid blood samples, reduced aerobic capacity and impaired systemic oxygen extraction in non-hospitalized patients without cardiopulmonary disease, disrupted gut microbiota that persists over time, damage to corneal nerves, immunologic dysfunction persisting for at least eight months, numerous findings of dysautonomia (a common post-viral disorder of the autonomic nervous system), and countless other conditions.

In a cohort of non-hospitalized patients, 31% were dependent on others for care; our own paper from the Patient-Led Research Collaborative found over 200 multi-systemic symptoms that impaired the ability to work and function in daily life. We also found high levels of cognitive dysfunction and memory loss that were as common in 18-29-year-olds as those over 70, a finding that is starting to be highlighted in children and teenagers as well.

The mechanisms for the pathophysiology behind long Covid are complex; one comprehensive paper suggested “consequences from acute Sars-CoV-2 injury to one or multiple organs, persistent reservoirs of Sars-CoV-2 in certain tissues, re-activation of neurotrophic pathogens such as herpesviruses under conditions of Covid-19 immune dysregulation, Sars-CoV-2 interactions with host microbiome/virome communities, clotting/coagulation issues, dysfunctional brainstem/vagus nerve signaling, ongoing activity of primed immune cells, and autoimmunity due to molecular mimicry between pathogen and host proteins” as a few of the many possibilities. This type of complex research will take years to undertake and uncover, leaving patients suffering without treatment.

And all of this does not include the eventual “long” long-term findings that may be revealed in the decades to come. Recent studies show cognitive decline even in truly mild recovered patients; some doctors are worried about the possibility of a future wave of dementia or Alzheimer’s patients, a theme echoed at a recent NIH conference on neuropsychiatric effects of Covid.

Long Covid is generally left out of policy conversations, instead getting lumped in with mild cases. The WHO and CDC consider mild patients to be those with Covid symptoms without pneumonia or low oxygen levels, and the NIH similarly defines them as individuals with Covid symptoms without shortness of breath, difficulty breathing, or abnormal chest imaging. By these definitions, patients with cognitive dysfunction, microclots, months-long fevers, tremors, dysautonomia, and those who are no longer able to participate in daily life – including not being able to walk, work, drive, go to school or take care of their kids – are all considered “mild”.

In unvaccinated people, current estimates from the Office of National Statistics in the UK are that 11-18% of patients will get long Covid, measured by having symptoms at 12 weeks. What we don’t know – but need to know to make any meaningful policy decisions around vaccinated people and the pandemic moving forward – is how common breakthrough cases are, how common long Covid is in these breakthrough cases, and how breakthrough long Covid compares with long Covid in unvaccinated infected individuals, in terms of severity, duration and pathophysiology.

Right now, the available data that we do have is less than ideal. A small study out of Israel showed 19% of breakthrough cases had persisting symptoms at six weeks, on par with the rate of long Covid in unvaccinated infections. Early studies showed that breakthrough infections were rare, but most of them were done before Delta; new studies from Mayo Clinic and Israel suggest lower vaccine effectiveness with this new variant, meaning more breakthrough infections may happen.

We don’t have to make conclusions based on this limited data, and I would argue that we actually shouldn’t. What we do need to do is collect more data – to track cases until we can adequately and comprehensively calculate the risk not only of hospitalization and death, but of long Covid, and incorporate that morbidity into our public policy equations. Without data, decisions will be made that will continue to kill and disable people. Without taking long Covid into consideration, any resulting policy is not complete, and any resulting risk assessment is not accurate.

  • Hannah Davis is an independent researcher and artist based in Brooklyn. She is an advocate for patient-led research

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sarcozona
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iridesce
33 days ago
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Everything That Will Follow A Taliban Victory Is Still A Part of America's War

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Afghan families from Kunduz, Takhar and Baghlan provinces arrive in Kabul on August 10, fleeing the Taliban advance. Paula Bronstein, via Getty.

Edited by Sam Thielman


THE U.S.’ TROOP WITHDRAWAL FROM AFGHANISTAN is almost at hand, as is the Taliban’s reconquest.

The Taliban have made eye-opening advances in the country’s northern provinces, which they were never able to subdue before the U.S. invasion. They began the week by overrunning or capturing six capitals in five days. They ended it by taking Herat, Lashkar Gar, and the crucial southern city of Kandahar. Zalmay Khalilzad, the longtime U.S. envoy, flew at the start of the week to Doha, Qatar, where the Taliban maintain a diplomatic office, to see if anything remains of the peace process – and, reportedly, whether the insurgents would be kind enough not to sack the U.S. embassy and cause a combination Saigon/Benghazi moment. “He will press the Taliban to stop their military offensive and to negotiate a political settlement,” the U.S. State Department said in their Monday announcement, “which is the only path to stability and development in Afghanistan.” In essence, Khalilzad is asking the Taliban not to win the war.

Nothing is inevitable. But it’s important to be clear about what an outright Taliban victory will mean: revenge killings, refugees and repression, including gendered repression. I’ve spent no serious time in Afghanistan – two months total out of 20 years, and never did I see the country beyond its Kabul, Khost, Paktia and Parwan provinces – so I don’t want to front like I have an emotional connection to it. That said, I met people in Afghanistan, people who treated me warmly when they didn’t have to, and I’m thinking of them with some dread. 

When the U.S. withdraws from a war, the ensuing suffering of innocent people becomes, to the “national security” community, an argument for re-escalation. Think of the Yazidis stranded atop Mount Sinjar and the role that story played in returning the U.S. to war in Iraq. (And buy Samuel Moyn’s forthcoming book Humane for an excellent critical exploration of such issues.) We tend to conceive of this kind of suffering not as the result of the war, but as an alternative to it. That has a certain intuitiveness: you cease fighting in a place and disaster emerges there.

But it’s a mistake to think of the disaster as a departure from the war. Remember that the Taliban offered terms in December 2001. Donald Rumsfeld rejected them. Everything that followed made the Taliban stronger. The idea that continuing the war for a twenty-first year will make the Taliban weaker could only occur to an American Exceptionalism junkie in withdrawal. It’s easier to wish-cast about glorious wars that might have been than to cope with the fact that America’s works were an avoidable disaster that built nothing enduring except human suffering. It is far easier to consider the bloodletting that follows the U.S. presence to be merely the result of its absence. But to take that position is to wash the blood from American hands that waged the war, all the while claiming that the retreat is the contemptible hand-washing. 

One of the consequences of waging Forever Wars is that they obscure what it means to lose a war. This is what it means: the Enemy wins. The Enemy’s victory will likely be terrible. Among the reasons it is so terrible is that the United States of America is an accessory to it. 

Look at who the United States tries to save and who it doesn’t. The Biden administration is engaged in a valiant effort – one that did not happen during the brief interregnum between Iraq Wars – to resettle Afghans who worked for the U.S. military. It is a baseline obligation and a matter of honor. 

It is also a moral floor that functions as a moral ceiling: The U.S. will save only those who lent it a service. It is not throwing open the doors to refugees who didn’t work for the United States. Those refugees are bound for, among other places, Iran, whose government, according to the United Nations refugee agency, “has consistently welcomed Afghans fleeing protracted conflict and violence for over 40 years.” The United States, which has fueled that protracted violence and conflict for over 40 years – first through the CIA-Saudi-Pakistani anti-Soviet coalition; then for the past 20 years’ war – cannot say the same. 

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WHAT DO WE OWE THE AFGHAN PEOPLE? We owe them a life they can live, resettling them in the United States if they so choose, and we owe them reparations. Reparations is a charged word, and I do not use it here to suggest that reparations for the descendants of the enslaved ought to wait until we pay reparations for the War on Terror. I mean here that throughout history, the losers of wars have had to pay reparations, though typically to the regimes and not people. But it is people whom the U.S. owes, not regimes.   

I’ve tweeted versions of this argument on Twitter and I typically encounter versions of the following objection. The rhetoric of U.S. obligation is nothing but a lever for re-escalation.The problem with the Afghanistan war is that we did too much for the Afghans, rather than not enough. We built schools, built an army, built a police force, provided agricultural assistance, and built a central government. 

The thing is that the United States didn’t build any of that for the Afghan people. It built it for itself, so as to have a reliable client in Southwest Asia between Iran and Pakistan. 

But reparations for Afghanistan’s people, as a material responsibility, is surely a nonstarter for the people who make U.S. foreign policy. Material culpability for destabilizing a population, provided to that population, is a hell of a precedent for a hegemonic power to set. It would come too close to providing the thing hegemonic powers tell themselves they provide and never do: justice. 

Far easier to just re-escalate the wars. Already we see the familiar War-on-Terror caveats to the troop pullout in Afghanistan: Afghanistan will be surveilled constantly and bombed as often as the U.S. deems fit. “In CENTCOM, if needed, the USS Ronald Reagan Carrier Strike Group is on station. The package of long-range bombers, additional fighter-bombers and troop formations are postured to quickly respond if necessary and directed,” Gen. Mark Milley, the disgrace who remains the chairman of the Joint Chiefs of Staff, promised last month.

There we see continuity with the war masquerading as departure from it. The war doesn’t end, it continues with caveats attached, lying in wait for its failure to prompt calls for more retributive violence. In that manner the cycle repeats. There is simply no substitute for ending a war and paying the debts that American policymakers did not understand themselves to be accruing. They were accrued regardless.



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sarcozona
31 days ago
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And we should legalize opium.
iridesce
33 days ago
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DC
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acdha
33 days ago
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This part really resonated: “It’s easier to wish-cast about glorious wars that might have been than to cope with the fact that America’s works were an avoidable disaster that built nothing enduring except human suffering.”

When the war with Afghanistan was looming, I had initially hoped that it might lead to something like what had happened in the Balkans, with UN peacekeepers helping a battered country get back on its feet and incidentally not being the kind of place where a terrorist group could find shelter. Yeah, I know…
Washington, DC
freeAgent
33 days ago
What I don't understand about the voices demanding we re-up the war in Afghanistan is what they think it will accomplish. We've been occupying Afghanistan for TWENTY YEARS now and the "legitimate government" which we installed doesn't seem like it'll last even a day after the US withdrawal is complete. It's a complete disaster. The only thing we've been able to do in Afghanistan is keep it in a holding pattern. And we've done so at great expense to ourselves. I don't have any faith that the US government can "fix" Afghanistan in a few more months, years, or decades. We should, at the very least, do everything we can to welcome those who want to flee.
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