What immunocompromised people want you to know
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While many people in the U.S. have abandoned COVID-19 mitigations like vaccines and masking, the virus remains dangerous for everyone, and some groups face higher risks than others. Immunocompromised people—whose immune systems don’t work as well as they should due to health conditions or medications—are more vulnerable to infection and severe symptoms from the virus.
Public Good News spoke with three immunocompromised people about the steps they take to protect themselves and what they want others to know about caring for each other.
[Editor’s note: The contents of these interviews have been condensed for length.]
PGN: What measures have you been taking to protect yourself since the COVID-19 pandemic began?
Tatum Spears, Virginia
From less than a year old, I had serious, chronic infections and have missed huge chunks of my life. In 2020, I quit my public job, and I have not worked publicly since.
I have a degree in vocal performance and have been singing my whole life, but I haven’t performed publicly since 2019. I feel like a bird without wings. I had to stop traveling. Since no one wears a mask anymore, I can’t go to the movies or social outings or any party.
All my friends live in my phone now. It’s a community of people—a lot of them are immunocompromised or disabled in some way.
There are a good portion of them who just take COVID-19 seriously and want to protect their health, who feel the existential abandonment and the burden of all of this. It’s really isolating having to step back from any sort of social life. I have to assess my risk every single time I leave the house.
Gwendolyn Alyse Bishop, Washington
I was hit by a car when I was very young. I woke up from surgery, and doctors told me I had lost almost all of my spleen. So, I was always the sickest kid in my school.
When COVID-19 hit, I started working from home. At first, I wore cloth masks. I didn’t really learn about KN95 masks until right around the time that COVID-19 disabled me. [Editor’s note: N95 and KN95 masks have been shown to be significantly more effective at preventing the transmission of viral particles than cloth masks.]
I actually don’t get out much anymore because I am disabled by long COVID now, but when I do leave, I wear a respirator in all shared air spaces. My roommate and I have HEPA filters going in every room.
And then we test. I have a Pluslife testing dock, and so we keep a weekly testing schedule with that and then test if there are any symptoms. I got reinfected [with COVID-19] last winter, and a Pluslife test helped me catch it early and get Paxlovid. [Editor’s note: Pluslife is a brand of an at-home COVID-19 nucleic acid amplification test, which has been shown to be significantly more effective at detecting COVID-19 than at-home antigen rapid tests.]
Abby Mahler, California
I have lupus, and in 2016, I started taking the drug hydroxychloroquine, which is an immunomodulator. I’m not as immunocompromised as some people, but I certainly don’t have a normal immune system, which has resulted in long-term infections like C. diff.
I started masking early. My roommates and I prioritize going outside. We don’t remove our masks inside in public places.
We are in a pod with one other household, and the pod has agreements on the way that we interact with public space. So, we will only unmask with people who have tested ahead of time. We use Metrix, an at-home nucleic acid amplification test.
While it’s not easy and it’s not the life that we had prior to COVID-19’s existence, it is a life that has provided us quite a lot of freedom, in the sense that we are not sick all the time. We are conscientiously making decisions that allow us to have a nice time without a monkey on our backs, which is freeing.
PGN: What do you want people who are not immunocompromised to know?
T.S.: Don’t be afraid to be the only person in a room wearing a mask. Your own health is worth it. And you have to realize how callous [people who don’t wear a mask are] by existing in spaces and breathing [their] air [on immunocompromised people].
People think that vaccines are magic, but vaccines alone are not enough. I would encourage people to look at the Swiss cheese model of risk assessment.
Each slice of Swiss cheese has holes in it in different places, and each layer represents a layer of virus mitigation. One layer is vaccines. Another layer is masks. Then there’s staying home when you’re sick and testing.
G.A.B.: I wish people were masking. I wish people understood how likely it is that they are also now immunocompromised and vulnerable because of the widespread immune dysregulation that COVID-19 is causing. [Editor’s note: Research shows that COVID-19 infections may cause long-term harm to the immune system in some people.]
I want people to be invested in being good community members, and part of that is understanding that COVID-19 hits the poorest the hardest—gig workers, underpaid employees, frontline service workers, people who were already disabled or immunocompromised.
If people want to be good community members, they not only need to protect immunocompromised and disabled people by wearing a mask when they leave their homes, but they also need to actually start taking care of their community members and participating in mutual aid. [Editor’s note: Mutual aid is the exchange of resources and services within a community, such as people sharing extra N95 masks.]
I spend pretty much all of my time working on LongCOVIDAidBot, which promotes mutual aid for people who have been harmed by COVID-19.
A.M.: An important thing to think about when you’re not disabled is that it becomes a state of being for all people, if they’re lucky. You will become disabled, or you will die.
It is a privilege, in my opinion, to become disabled because I can learn different ways of living my life. And being able to see yourself as a body that changes over time, I hope, opens up a way of looking at your body as the porous reality that it is.
Some people think of themselves as being willing to make concessions or change their behavior when immunocompromised people are around, but you don’t always know when someone is immunocompromised.
So, if you’re not willing to change the way that you think about yourself as a person who is susceptible [to illness], then you should change the way that you consider other people around you. Wearing a mask—at the very least in public indoor spaces—means considering the unknown realities of all the people who are interacting with that space.
This article first appeared on Public Good News and is republished here under a Creative Commons license.
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Zero Sugar / One Month – by Becky Gillaspy
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We’ve reviewed books about the evils of sugar before, so what makes this one different?
This one has a focus on helping the reader quit it. It assumes we already know the evils of sugar (though it does cover that too).
It looks at the mechanisms of sugar addiction (habits-based and physiological), and how to safely and painlessly cut through those to come out the other side, free from sugar.
The author gives a day-by-day plan, for not only eliminating sugar, but also adding and including things to fill the gap it leaves, keeping us sated, energized, and happy along the way.
In the category of subjective criticism, it does also assume we want to lose weight, which may not be the case for many readers. But that’s a by-the-by and doesn’t detract from the useful guide to quitting sugar, whatever one’s reasons.
Bottom line: if you would like to quit sugar but find it hard, this book thinks of everything and walks you by the hand, making it easy.
Click here to check out Zero Sugar / One Month, and reap the health benefits!
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Gut Health for Women – by Aurora Bloom
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First things first: though the title says “For Women”, almost all of it applies to men too—and the things that don’t apply, don’t cause a problem. So if you’re cooking for your family that contains one or more men, this is still great.
Bloom gives us a good, simple, practical introduction to gut health. Her overview also covers gut-related ailments beyond the obvious “tummy hurts”. On which note:
A very valuable section of this book covers dealing with any stomach-upsets that do occur… without harming your trillions of tiny friends (friendly gut microbiota). This alone can make a big difference!
The book does of course also cover the things you’d most expect: things to eat or avoid. But it goes beyond that, looking at optimizing and maintaining your gut health. It’s not just dietary advice here, because the gut affects—and is affected by—other lifestyle factors too. Ranges from mindful eating, to a synchronous sleep schedule, to what kinds of exercise are best to keep your gut ticking over nicely.
There’s also a two-week meal plan, and an extensive appendix of resources, not to mention a lengthy bibliography for sourcing health claims (and suggesting further reading).
In short, a fine and well-written guide to optimizing your gut health and enjoying the benefits.
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The Truth About Statins – by Barbara H. Roberts, M.D.
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All too often, doctors looking to dispense a “quick fix” will prescribe from their playbook of a dozen or so “this will get you out of my office” drugs. Most commonly, things that treat symptoms rather than the cause. Sometimes, this can be fine! For example, in some cases, painkillers and antidepressants can make a big improvement to people’s lives. What about statins, though?
Prescribed to lower cholesterol, they broadly do exactly that. However…
Dr. Roberts wants us to know that we could be missing the big picture of heart health, and making a potentially fatal mistake.
This is not to say that the book argues that statins are necessarily terrible, or that they don’t have their place. Just, we need to understand what they will and won’t do, and make an informed choice.
To which end, she does advise regards when statins can help the most, and when they may not help at all. She also covers the questions to ask if your doctor wants to prescribe them. And—all so frequently overlooked—the important differences between men’s and women’s heart health, and the implications these have for the efficacy (or not) of statins.
With regard to the “alternatives to cholesterol-lowering drugs” promised in the subtitle… we won’t keep any secrets here:
Dr. Roberts (uncontroversially) recommends the Mediterranean diet. She also provides two weeks’ worth of recipes for such, in the final part of the book.
All in all, an important book to read if you or a loved one are taking, or thinking of taking, statins.
Pick up your copy of The Truth About Statins on Amazon today!
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We looked at over 166,000 psychiatric records. Over half showed people were admitted against their will
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Picture two people, both suffering from a serious mental illness requiring hospital admission. One was born in Australia, the other in Asia.
Hopefully, both could be treated on a voluntary basis, taking into account their individual needs, preferences and capacity to consent. If not, you might imagine they should be equally likely to receive treatment against their will (known colloquially as being “sectioned” or “scheduled”).
However, our research published in British Journal of Psychiatry Open suggests this is not the case.
In the largest study globally of its kind, we found Australians are more likely to be treated in hospital for their acute mental illness against their will if they are born overseas, speak a language other than English or are unemployed.
What we did and what we found
We examined more than 166,000 episodes of voluntary and involuntary psychiatric care in New South Wales public hospitals between 2016 and 2021. Most admissions (54%) included at least one day of involuntary care.
Being brought to hospital via legal means, such as by police or via a court order, was strongly linked to involuntary treatment.
While our study does not show why this is the case, it may be due to mental health laws. In NSW, which has similar laws to most jurisdictions in Australia, doctors may treat a person on an involuntary basis if they present with certain symptoms indicating serious mental illness (such as hallucinations and delusions) which cause them to require protection from serious harm, and there is no other less-restrictive care available. Someone who has been brought to hospital by police or the courts may be more likely to meet the legal requirement of requiring protection from serious harm.
The likelihood of involuntary care was also linked to someone’s diagnosis. A person with psychosis or organic brain diseases, such as dementia and delirium, were about four times as likely to be admitted involuntarily compared to someone with anxiety or adjustment disorders (conditions involving a severe reaction to stressors).
However, our data suggest non-clinical factors contribute to the decision to impose involuntary care.
Compared with people born in Australia, we found people born in Asia were 42% more likely to be treated involuntarily.
People born in Africa or the Middle East were 32% more likely to be treated this way.
Overall, people who spoke a language other than English were 11% more likely to receive involuntary treatment compared to those who spoke English as their first language.
Some international researchers have suggested higher rates of involuntary treatment seen in people born overseas might be due to higher rates of psychotic illness. But our research found a link between higher rates of involuntary care in people born overseas or who don’t speak English regardless of their diagnosis.
We don’t know why this is happening. It is likely to reflect a complex interplay of factors about both the people receiving treatment and the way services are provided to them.
People less likely to be treated involuntarily included those who hold private health insurance, and those referred through a community health centre or outpatients unit.
Our findings are in line with international studies. These show higher rates of involuntary treatment among people from Black and ethnic minority groups, and people living in areas of higher socioeconomic disadvantage.
A last resort? Or should we ban it?
Both the NSW and Australian mental health commissions have called involuntary psychiatric care an avoidable harm that should only be used as a last resort.
Despite this, one study found Australia’s rate of involuntary admissions has increased by 3.4% per year and it has one of the highest rates of involuntary admissions in the world.
Involuntary psychiatric treatment is also under increasing scrutiny globally.
When Australia signed up to the UN Convention on the Rights of Persons with Disabilities, it added a declaration noting it would allow for involuntary treatment of people with mental illness where such treatments are “necessary, as a last resort and subject to safeguards”.
However, the UN has rejected this, saying it is a fundamental human right “to be free from involuntary detention in a mental health facility and not to be forced to undergo mental health treatment”.
Others question if involuntary treatment could ever be removed entirely.
Where to from here?
Our research not only highlights concerns regarding how involuntary psychiatric treatment is implemented, it’s a first step towards decreasing its use. Without understanding how and when it is used it will be difficult to create effective interventions to reduce it.
But Australia is still a long way from significantly reducing involuntary treatment.
We need to provide more care options outside hospital, ones accessible to all Australians, including those born overseas, who don’t speak English, or who come from disadvantaged communities. This includes intervening early enough that people are supported to not become so unwell they end up being referred for treatment via police or the criminal justice system.
More broadly, we need to do more to reduce stigma surrounding mental illness and to ensure poverty and discrimination are tackled to help prevent more people becoming unwell in the first place.
Our study also shows we need to do more to respect the autonomy of someone with serious mental illness to choose if they are treated. That’s whether they are in NSW or other jurisdictions.
And legal reform is required to ensure more states and territories more fully reflect the principal that people who have the capacity to make such decisions should have the right to decline mental health treatment in the same way they would any other health care.
If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.
Amy Corderoy, Medical doctor and PhD candidate studying involuntary psychiatric treatment, School of Psychiatry, UNSW Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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The Seven-Day Sleep Prescription – by Dr. Aric Prather
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You probably already know about sleep hygiene. So, what does this book have to offer?
Dr. Aric Prather offers seven days’ worth of adjustments, practices to take up, from when you get up in the morning to when you lay your head down at night.
Some you’ll surely be familiar with, like avoiding blue light and social media at night.
Others, you might not be familiar with, like scheduling 15 minutes for worrying in the daytime. The rationale for this one is that when you find yourself inclined to worry at a time that will keep you awake, you’ll know that you can put off such thoughts to your scheduled “worrying time”. That they’ll be addressed then, and that you can thus sleep soundly meanwhile.
Where the book really comes into its own is in such things as discussing how to not just manage sleep debt, but how to actually use it in your favour.
Nor does Dr. Prather shy away from the truths of our world… That the world these days is not built for us to sleep well. That there are so many other priorities; to get our work done, to succeed and achieve, to pay bills, to support our kids and partners. That so many of these things make plenty of sense in the moment, but catch up with us eventually.
Bottom line: what this book aims to give is a genuinely sustainable approach to sleeping—controlling what we can, and working with what we can’t. If you’d like to have a better relationship with sleep, this book is an excellent choice.
Click here to check out the Seven-Day Sleep Prescription, and improve yours!
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Will there soon be a cure for HIV?
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Human immunodeficiency virus, or HIV, is a chronic health condition that can be fatal without treatment. People with HIV can live healthy lives by taking antiretroviral therapy (ART), but this medication must be taken daily in order to work, and treatment can be costly. Fortunately, researchers believe a cure is possible.
In July, a seventh person was reportedly cured of HIV following a 2015 stem cell transplant for acute myeloid leukemia. The patient stopped taking ART in 2018 and has remained in remission from HIV.
Read on to learn more about HIV, the promise of stem cell transplants, and what other potential cures are on the horizon.
What is HIV?
HIV infects and destroys the immune system’s cells, making people more susceptible to infections. If left untreated, HIV will severely impair the immune system and progress to acquired immunodeficiency syndrome (AIDS). People living with untreated AIDS typically die within three years.
People with HIV can take ART to help their immune systems recover and to reduce their viral load to an undetectable level, which slows the progression of the disease and prevents them passing the virus to others.
How can stem cell transplants cure HIV?
Several people have been cured of HIV after receiving stem cell transplants to treat leukemia or lymphoma. Stem cells are produced by the spongy tissue located in the center of some bones, and they can turn into new blood cells.
A mutation on the CCR5 gene prevents HIV from infecting new cells and creates resistance to the virus, which is why some HIV-positive people have received stem cells from donors carrying this mutation. (One person was reportedly cured of HIV after receiving stem cells without the CCR5 mutation, but further research is needed to understand how this occurred.)
Despite this promising news, experts warn that stem cell transplants can be fatal, so it’s unlikely this treatment will be available to treat people with HIV unless a stem cell transplant is needed to treat cancer. People with HIV are at an increased risk for blood cancers, such as Hodgkin lymphoma and non-Hodgkin lymphoma, which stem cell transplants can treat.
Additionally, finding compatible donors with the CCR5 mutation who share genetic heritage with patients of color can be challenging, as donors with the mutation are typically white.
What are other potential cures for HIV?
In some rare cases, people who started ART shortly after infection and later stopped treatment have maintained undetectable levels of HIV in their bodies. There have also been some people whose bodies have been able to maintain low viral loads without any ART at all.
Researchers are studying these cases in their search for a cure.
Other treatment options researchers are exploring include:
- Gene therapy: In addition to stem cell transplants, gene therapy for HIV involves removing genes from HIV particles in patients’ bodies to prevent the virus from infecting other cells.
- Immunotherapy: This treatment is typically used in cancer patients to teach their immune systems how to fight off cancer. Research has shown that giving some HIV patients antibodies that target the virus helps them reach undetectable levels of HIV without ART.
- mRNA technology: mRNA, a type of genetic material that helps produce proteins, has been used in vaccines to teach cells how to fight off viruses. Researchers are seeking a way to send mRNA to immune system cells that contain HIV.
When will there be a cure for HIV?
The United Nations and several countries have pledged to end HIV and AIDS by 2030, and a 2023 UNAIDS report affirmed that reaching this goal is possible. However, strategies to meet this goal include HIV prevention and improving access to existing treatment alongside the search for a cure, so we still don’t know when a cure might be available.
How can I find out if I have HIV?
You can get tested for HIV from your primary care provider or at your local health center. You can also purchase an at-home HIV test from a drugstore or online. If your at-home test result is positive, follow up with your health care provider to confirm the diagnosis and get treatment.
For more information, talk to your health care provider.
This article first appeared on Public Good News and is republished here under a Creative Commons license.
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