#post-exertional malaise prevention

[compassionmattersmost]

6: Gentle Movement and Stretching in the Gym: Reconnecting with Your Body

Now that you’ve taken the significant step of entering the gym without the pressure to exercise, you might feel ready to begin exploring gentle movement. For people living with Post-Viral ME/CFS, this phase requires a delicate balance—respecting your energy levels while slowly reconnecting with your body through light movement and stretching. In this blog post, we’ll look at how to introduce…

[aropride]

ok. imagine a sickness that could cause you to develop new conditions and disabilities, worsen preexisting ones, worsen your immune system, reduce t-cell count, cause post-exertional malaise, cause heart palpitations and other heart problems, cause brain damage, and hundreds of other full-body damage every time you get it. you don't always know when you have it, and you become more vulnerable to it every time you get it.

now imagine there's an easy way to prevent yourself from getting it, or prevent yourself from spreading it if u have it. sometimes it is slightly annoying and sometimes people will look at you weird, but 99% of the time it's literally fine.

spoilers under the cut

this post is about covid

more info here

[covid-safer-hotties]

Also preserved in our archive

Y'all know I'm not one to save celebrity news without reason: There's some excellent analysis done in this article about air quality and airborne disease.

Macbeth: cancelled due to “illness” The eagerly anticipated production of Macbeth, starring David Tennant in the title role at the Harold Pinter Theatre, has cancelled four consecutive performances this week due to “illness within the company.” The latest cancellation, announced just two hours before curtain, left audience members disappointed, including those who had traveled internationally and rearranged work schedules.

Among affected ticket holders, some expressed frustration on social media about the late notice and lack of clarity. Twitter user @clairebobcat voiced a common sentiment:

"Ticket holders were notified at 5:45 this eve. Really short notice considering illness has been ongoing since Friday. All best wishes to the cast—illness can’t be helped, but very shoddy treatment of ticket holders. Travel money & Annual leave wasted."

The ongoing cancellations reflect broader challenges facing the theatre industry in the ongoing Covid-19 pandemic.

The arts still in crisis due to Covid A survey by Theatre Washington reported that while 58% of Washington, D.C. theatre patrons once attended performances six or more times per year, only 31% have done so since reopening. Almost half of patrons surveyed now attend just three times or fewer, and nearly 68% cited fear of Covid-19 exposure as a primary reason for staying away.

The UK is facing unprecedented rates of long-term illness due to long Covid, a condition marked by symptoms including post-exertional malaise, cognitive impairment, and cardiopulmonary dysfunction.

Public health data shows that over two million people in the UK are affected by long COVID, with more than 10% of Covid cases resulting in prolonged symptoms.

High-profile performers, including Alyssa Milano and Matt McGorry, have spoken publicly about their struggles with long Covid, shedding light on the profound and lasting impact of the illness.

Protect the Heart of the Arts In response to these issues, Protect the Heart of the Arts, an advocacy organisation for members of the performance community with long COVID or who are clinically vulnerable, has offered to donate a HEPA air purification system to the Harold Pinter Theatre, which is staging Macbeth.

Glenda from the group told the Canary:

"It’s unsustainable, unethical, and we can’t afford to accept it as occupational: our employers, unions, regulatory bodies and politicians have to address the ongoing SARS-CoV-2 pandemic head-on.

Beyond key vectors (hospitals, schools, prisons), creatives are uniquely vulnerable, especially within live formats, alongside venue staff and audiences; not to mention all within said categories who’ve been marginalised, nor the walk-back of digital programming."

The organisation argues that improved air quality could help reduce health risks for cast, crew, and audiences, potentially preventing further cancellations.

Covid isn’t over – as Macbeth inadvertently shows “We may not know the exact illness affecting the Macbeth cast, but we do know that Covid is a serious vascular disease requiring extended recovery times,” noted Charles Waltz, founder of Protect the Heart of the Arts:

"Reinfections weaken immunity to other pathogens, so without measures like air purification and adequate recovery time, we risk ongoing illness cycles that could impact health and stability across the industry. Clean air and flexible recovery policies are essential to protect the performance community’s long-term health."

[kira-akira]

Bernie Sanders Introduces Long COVID Moonshot Legislation

This legislation "provides $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support Long COVID research, the urgent pursuit of treatments, and the expansion of care for patients across the country." Announcement on Sander's twitter and the Long COVID Moonshot website.

This announcement references the number 22 million for adults affected by Long COVID in the US but that number is certainly much higher; in 2022 the CDC reported that 7.5% of US adults have Long COVID and that number can only have increased.

Here is an article published today on PBS if you need a primer or a refresher on what Long COVID is and why everyone needs to care about it. From the article:

"Long COVID is a complex chronic condition that can result in more than 200 health effects across multiple body systems. These include:

Heart disease

Neurologic problems such as cognitive impairment, strokes and dysautonomia. This is a category of disorders that affect the body’s autonomic nervous system – nerves that regulate most of the body’s vital mechanisms such as blood pressure, heart rate and temperature.

Post-exertional malaise, a state of severe exhaustion that may happen after even minor activity — often leaving the patient unable to function for hours, days or weeks

Gastrointestinal disorders

Kidney disease

Metabolic disorders such as diabetes and hyperlipidemia, or a rise in bad cholesterol

Immune dysfunction"

I know it's easy to give into despair but THERE IS HOPE for the future! For decreasing transmission of COVID-19, for developing preventatives against Long COVID, and for treating Long COVID. To highlight just a few of the possible pathways to prevention and treatment being currently researched:

The possibility of using antivirals to treat not just Long COVID but any autoimmune disease

The development of N95 masks that can sense SARS-CoV-2 in exhaled breath using a printed immunosensor

A nasal vaccine that halts transmission of SARS-CoV-2 (though does not stop the user from developing COVID-19)

A Japanese research team is looking to treat COVID-19 by using embryonic stem cells to target the virus

The possibility of using already-developed arthritis drugs to treat Long COVID respiratory symptoms

Researchers just identified a possible protein to target in treating Long COVID fatigue

This is an incredibly small collection of studies researching potential treatments but they themselves and the decades of research they are built on had to be funded. In fact, since the pandemic began, more than 24,000 scientific publications about COVID-19 have been published, making it the most researched health condition in any four years of recorded human history.

So there is hope! But all this research needs money. Money that Long COVID Moonshot will provide. And while we wait for research to bear fruit, that $1 billion per year will also be crucial in caring for those suffering from Long COVID in the meantime.

So What Can You Do?

Keep masking - We've just hit 900,000 new COVID cases per day in the US and this wave is not even at its peak yet (For reference, Fauci stated back in 2021 that getting under 10,000 cases per day would allow for mask mandates and safety measures to relax...)

Go on the Long COVID Moonshot website and write to your legislators in support (You can use their script, it only takes 1 minute!)

Keep yourselves and others informed - On the Moonshot website they also offer handy graphics and facts sheets that you can post wherever you can. Spread the word!

And if you or someone you know has Long COVID, you can write in to the Long COVID Moonshot website about your experience

And remember, no one is safe from Long COVID; your chances of developing Long COVID increase with every reinfection. Until research like what Long COVID Moonshot will fund discovers viable preventatives and treatments, the only way to not get Long COVID is to not get COVID-19 in the first place.

Stay safe, stay hopeful, support Long COVID Moonshot, and mask up!

[myalgicencephalomyelitiscfstom]

I was impressed by knowledge of the Belgian author of this

Automated English translation: "When exercise puts your health at risk"

Original article in Dutch/Flemish:

Turns out she is a researcher whose research has been supported by ME Research UK

Edited to add these extracts: — “What makes PEM [post-exertional malaise] particularly insidious is that symptoms often do not worsen until 24 to 72 hours after exercise. As a result, patients who feel fine immediately after exercise can unknowingly push themselves beyond their limits” — “The well-meaning advice to 'move a bit more', which patients regularly receive, can be counterproductive in their case. Of course, this does not mean that people with ME/CFS should remain completely still. Movement remains important, but within the limits indicated by their body” —

“The complexity of their illness and the presence of post-exertional malaise makes it impossible for them to experience the same benefits of physical activity. It is vital that healthcare providers recognize this to prevent unnecessary harm and suffering” — “Although exercise is an important part of a healthy lifestyle for most people, this is not the case for people with ME/CFS. The complexity of their illness & the presence of post-exertional malaise makes it impossible for them to experience the same benefits of physical activity”

[howlsofbloodhounds]

So I was doing some looking around and researching into possible real life equivalents for Color’s physical condition, such as his fragility to the point of possible death if he overexerts his abilities.

Color’s condition—which is characterized by physical fragility, fatigue, and the potential for severe physical deterioration—has similarities to several real-life conditions that affect energy levels, muscle strength, and overall physical integrity such as:

Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)

Symptoms: Extreme fatigue that doesn’t improve with rest, muscle and joint pain, cognitive difficulties, and post-exertional malaise (worsening of symptoms after physical or mental exertion).

Like Color, individuals with CFS/ME have limited energy reserves and can experience significant physical and cognitive fatigue from overexertion. They need to carefully manage their activity levels to avoid severe consequences.

Osteogenesis Imperfecta (Brittle Bone Disease)

Symptoms: Fragile bones that break easily, muscle weakness, and fatigue.

The physical fragility and risk of cracking or breaking with exertion in Color's body can be likened to the bone fragility in individuals with osteogenesis imperfecta. Managing physical stress and avoiding overexertion is crucial.

Ehlers-Danlos Syndrome (EDS)

Symptoms: Hypermobile joints, skin that bruises easily, chronic pain, and fatigue.

The combination of fragility, easy bruising or tearing (cracking in Color’s case), and chronic fatigue can parallel the experiences of those with EDS, where physical stress can lead to significant issues.

Like individuals with CFS/ME, Color would need to pace his activities, taking frequent breaks and avoiding overexertion to prevent severe fatigue and physical damage. He might need to prioritize his activities, focusing on essential tasks and avoiding unnecessary exertion.

Similar to those with brittle bone disease, Color would need to avoid situations that could physically stress his body and lead to cracking or dusting.

He might use supportive devices or strategies to minimize physical strain, such as ergonomic tools for photography or mobility aids for traveling.

Techniques to manage chronic pain and discomfort, which could include medication, physical therapy, or other interventions. Ensuring adequate nutrition to support his body’s needs and potentially mitigate some of the fatigue and physical issues.

Developing coping mechanisms to handle the emotional stress of his physical condition, possibly through therapy or support groups. Relying on friends like Killer, Epic, Delta, and Beta for emotional support and understanding during difficult times.

Some supportive devices or strategies Color might make use of at his leisure, particularly with matters such as traveling and hiking, he could use things like orthopedic supports, mobility aids, things for pain management, adaptive equipment, assistive technology and more.

He could use braces and splints to support unstable joints and prevent injuries, and/or compression garments to help with joint stability and reduce pain.

Mobility aids such as walking poles or trekking poles to provide stability and reduce impact on joints during hiking. (His walking poles are definitely covered in stickers and drawings from all his friends.)

He could use portable heat and cold packs to help manage pain and inflammation as well as portable massager to relieve muscle tension and pain.

Adaptive equipment such as ergonomic backpacks designed to reduce strain and distribute weight evenly. Adjustable hiking sticks for customization based on height and terrain.

Voice-Activated apps and devices for navigation and reducing the need for physical interaction with devices. Smartphone apps for tracking symptoms, medication, and managing energy levels.

Stress- relief tools like stress balls, fidget toys, or calming apps to help manage PTSD symptoms or overstimulation.

Personal comfort items or sensory aids that provide emotional support during travel or hiking, such as all the evidence and trinkets of his loved ones back home or spiritual/religious items or symbols. Techniques and tools for managing fatigue, like scheduled rest breaks and planning shorter, manageable hikes.

Travel planning apps to help with organizing trips, finding accessible accommodations, and managing health needs.

(And of course this isn’t supposed to be me diagnosing color with anything, or saying what he does or doesn’t have. Mostly just to take some things this character experiences and link it to some real life equivalents, that could potentially help better understand him and what he deals with.)

[scientia-rex]

Hi Dr. K. I'm a former physical therapist assistant who moved into public health and now works in injury prevention. I am curious about the state of knowledge of the body's response to exercise in the absence of calorie restriction. I know it's never too late to build muscle/get stronger (absent any illness with a post-exertional malaise component). But given that the body will respond to any hint of "not enough food" by going into starvation mode--do we know WHAT the body's trying to conserve? Is it trying to stay the same weight, maintain the same fat reserve (amount), or maintain the same body composition (fat:muscle ratio)? In other words, is the notion of "trade some of that fat for muscle" nonsense?

I honestly don't know. I do think when people talk about trading fat for muscle they're likely to be disappointed, though, when I look at people out there who professionally build strength as opposed to specifically being body-builders where the aesthetics are the primary goal. Chiseled abs aren't found in nature.

[funnuraba]

ME/CFS symptoms part 2: The Fatigue

Hey, have you guys noticed how everyone is tired recently? Like, everybody you know is exhausted, and so are you, and so is everyone on the internet and in real life, and nobody's getting better, and sleep and rest don't help?

In addition, are you having new symptoms like tingling hands and feet? Dizziness or lightheadedness? Restless legs? Digestive problems? Slow thinking? Word confusion? Tinnitus or other hearing loss? Vision loss? Stomach problems? Sinus issues? Sleep disturbance or change? Soreness? New, worsening or changing migraines? Heart palpitations? New sensitivity to the weather? Joint pain? New chronic pain spots? Dark patches on your torso? Hair loss? New incontinence at an unusual age without having had children? Do you feel like you have the flu after heavy exertion?

Yeah I was having a lot of that myself. Turns out it was Long Covid, the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome type, which makes up 50% of all Long Covid cases. I can't sugarcoat this: if you have this, you are fucked to some degree. You have to reduce the amount of energy you use or you'll degenerate further into actual living hell. That means no stimulants, no pushing through it, no exercise at all, period, no I'm not joking, exercise makes you worse with this condition.

And not just physical exertion, but mental exertion. The energy it takes to put things into words, to look at screens or movement on screens, to digest food. All of that is way more than you think. You need to figure out your new limits, because aggressive rest is the only way you stand a chance of staying in the Mild stage. This may mean ending your social life, ending travel, working from home, quitting your job. If you don't do it, you'll wish you had.

Aggressive rest means staying in bed a lot. Doing nothing. At least an hour a day of literally nothing: you lie there with earplugs in and an eye mask on. It's gonna be awful. But I'm not exaggerating: Moderate ME/CFS is hell on earth, and there are two stages after that: Severe and Very Severe. Your body physically can't restore energy in a normal way anymore. If it runs out, you'll get Post Exertional Malaise, and if you get too much of that you "crash".

A crash keeps you from doing anything. You won't be able to process sound or light, you probably won't be able to get out of bed. You may not be able to sit up. You might struggle to breathe. You may get out of the crash in a day, in a week, in months--or never. Every single crash has the potential to become a permanent loss of function. People have lost the ability to digest food and the muscular strength it takes to breathe. There are people who do nothing but lie in the dark all day, unable to tolerate light or sound, being fed through a tube port by a caretaker who has to hurry out of the room because the physical presence of another human being is too painful. And those are the lucky ones who have non-abusive caretakers; almost no doctors or professional carers believe in this disease or are equipped to treat someone who has it. You can be legally tortured in the hospital if you go in for a procedure and the doctors think you're lying about what hurts you.

If it sounds like I'm trying to scare you? Yes. I am. I spent six months toward the lower end of Moderate ME. Hell is real. You will pray for death. You will not be physically able to kill yourself. This is why all those annoying disabled people keep screeching about wearing respirators to prevent Covid spread, because your odds of getting this go up with every infection, vaxxed or not, and many people already have it. They don't know yet. And they're pushing their way past their late chance to mitigate their descent into, I am not exaggerating, hell itself. You will want to fucking die if you get to a certain stage of this condition. ME/CFS patients have a high suicide rate and report a quality of life lower than end-stage cancer and AIDS patients.

So, again, are you tired all the time lately? Do you know someone who is? Look up the symptoms of ME/CFS and be very, very careful. And wear a fucking respirator in public spaces. All the time. No taking it off for selfies or indoor eating. You people are killing yourselves and everyone else for an illusion of normality that is never ever coming back.

[thethingything]

okay this is a very like, tentatively hopeful thing, but the last time we went outside we took antihistamines before going out, and we noticed afterwards that we didn't feel anywhere near as bad as expected, which lines up with stuff we'd seen about antihistamines helping with preventing post-exertional malaise if you take them before exercise.

so I took one maybe 40 minutes ago to see if it would also help during a flare up, and I think it has? my head feels clearer and my muscles feel less heavy and I'm not as out of breath as I was. I still feel worse than usual, but not as bad as I did, so maybe this might be something that helps? hopefully? and if so then holy shit that would be incredible

[natandacat]

In the moment, I can do a given effort, with immediate consequences that I can manage, even though they are already disproportionate (because of my dysautonomia, I might syncope, vomit, or get sustained inappropriate tachycardia & arrhythmia). I would be ok with this. I could live with this.

But the next day? The next day I can't walk. I talk excruciatingly slowly and with a slur because my facial muscles are completely relaxed from the lack of available energy. I can barely reposition myself in a laying position, sitting up and standing, even with help, might be impossible. I can barely think. I can barely used my phone; I need to use speech-to-text because I cannot type on my laptop.

I am lucky that my mental health is in a really good place nowadays. I genuinely enjoy producing those potentially triggering efforts and I'm not under unmanageable stress. And still, this happens. Systematically. I know for a fact that if I vacuum my flat I will have a minimum of 5 days in a Post-Exertional Malaise (PEM), during which I am mainly bed-ridden.

That's what myalgic encephalitis means (which is most likely what is happening with me and other long covid patients with this profile*). It's not a psychiatric condition and treating it as such is dangerous because pushing beyond your limits can make your condition permanently worse (this is currently my infectiologist's theory: I got worse overall because I pushed myself too much and triggered too many PEMs). It's dangerous because it is harrowing to live with this condition. Imagine being too sick to get a bottle of water. Or to bath. For a full week. And this can happen anytime you make too big an effort -and there's no true way of preventing it because you won't know it was too much in the moment. Of course that's a source of distress! But it's not a consequence of it. And telling patients that it's the other way around is extremely irresponsible and demoralizing.

*I will soon participate in a research study to that effect, so hopefully more concrete data will show that the chronic fatigue associated with long covid has the same mechanism, and potentially is, ME/CFS.

[reasoningdaily]

Three years on, we are still only beginning to understand one of the most mysterious and enduring challenges of the pandemic.

It’s officially been three years since COVID-19 first made its way into our lexicon, interrupting our home, social and work lives, and in some cases, reshaping them forever. By this point, many Americans consider coronavirus to be an issue of the past —an annoyance but no longer the deadly threat it once was. But for the millions of people with long Covid — those who were left with lingering and often confounding symptoms after contracting the virus — that’s much easier said than done.

Read on to explore the emerging science on long Covid, its impact on patients, and where we go from here.

Photo Credit: Getty Images/pilli

When the Doctor Doesn’t Listen

David Tuller Coda Story

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

In 2017, the London Review of Books published a commentary from an anonymous young woman with a prolonged illness that had seriously impaired her ability to care for herself. The situation was “infuriating,” she wrote in the short but impassioned article.

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS. 

An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.

“She did everything she could to survive,” wrote Sarah Boothby, Maeve’s mother, in a statement she prepared for the upcoming inquest. The NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care,” wrote Boothby, adding that her death was “premature and wholly preventable.”

Maeve’s father and Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including one last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”

Myalgic encephalomyelitis is frequently triggered by an acute viral or other infectious illness, although it has also been associated with exposure to environmental toxins, including mold. Patients have been found to suffer from a range of immunological, metabolic, neurological and other dysfunctions. Core symptoms include profound exhaustion, a pattern of relapses after minimal exertion known as post-exertional malaise, brain fog, poor sleep and heart rate irregularities that lead to dizziness or nausea when in a standing position. Standard therapies have focused on symptomatic relief since the underlying causes remain unknown and there are no diagnostic medical tests.

According to the U.S. Centers for Disease Control and Prevention (CDC), between 836,000 and 2.5 million people in the country have what it refers to as ME/CFS, and most remain undiagnosed. In the U.K., the estimates range from 125,000 to 250,000. Many patients are unable to work, climb stairs or even perform basic daily functions without assistance. 

As a journalist and public health academic, I have been investigating and writing about ME for several years. I have learned how it can devastate the lives of patients and their families, not least because mainstream medicine has framed it as largely psychosomatic — a modern version of what would once have been diagnosed as hysteria or conversion disorder. 

From the start of my project in 2015, I found it to be enormously intellectually and emotionally rewarding. But no one besides desperately ill patients took much notice. Editors at major news organizations couldn’t be bothered. Academic colleagues were polite but perplexed at my dedication to this obscure domain. At gatherings with friends, I could tell they’d had enough after the fifth or eighth time I’d mention the latest developments in the field. 

Viral epidemics always leave in their wake a small percentage of people experiencing chronic complications that have no identified cause. And the prolonged medical complaints being reported by millions of people around the world after acute coronavirus infection include some of the key symptoms that define ME. 

Patients, clinicians, scientists and journalists are debating and investigating the overlaps between the two conditions. While long Covid is a grab-bag term for an extremely diverse group of patients, some are receiving clinical diagnoses of ME or ME/CFS, as it is often called these days. 

And just as ME patients have long felt dismissed or misunderstood, long Covid patients have had similar experiences. As I reported last year for Coda, for example, doctors unable to continue working because of long Covid have been dismayed that their medical colleagues often tell them their cognitive impairment and repeated relapses are physical expressions of pandemic-related trauma. Conditions like ME and others that lack definitive medical tests — such as irritable bowel syndrome, Gulf War Illness, fibromyalgia and various forms of pain — are often lumped together into a category called “functional” disorders or “medically unexplained symptoms,” known as MUS.

The emergence of long Covid has focused widespread attention on a long-simmering debate that has previously been confined largely to academic and medical circles: Do these functional and medically unexplained ailments arise mainly from ongoing disease processes or from depression, anxiety, post-traumatic stress disorder and related psychiatric conditions?

All around the world, leading scientists and clinicians regard long Covid as a heterogeneous disease. They are seeking to elucidate its many pathophysiological pathways and find drug targets for therapy. In December 2022, the CDC reported that long Covid “played a part” in 3,544 deaths in the U.S. from the start of the pandemic through June 2022.

Another camp is applying the psychosomatic lens to long Covid. The experts in this group also hold impressive academic status, receive significant research funding and publish in respected journals. They witness the same phenomenon and see something completely different: A global tsunami of mass hysteria leading to paralysis, gait disorders, memory loss, inability to remain upright without feeling sick, repeated flu-like relapses and a list of other complaints.

Medicine has a long and sorry history of bias and discrimination on the basis of sex. Given that ME and other functional and medically unexplained disorders are known to be much more prevalent among women, it is not surprising that patients with these conditions routinely report receiving poor treatment and even abuse at the hands of the healthcare system. Physicians frequently prescribe psychotherapy and exercise programs based on their presumption that emotional or mental distress, negative or unhelpful thoughts and/or unhealthy behavior patterns are causing the persistent problems.

It goes without saying that stress, anxiety and related factors can have negative health impacts and exacerbate underlying ailments and that psychological support and lifestyle adaptations can help alleviate distress, including among people with chronic conditions. But when it comes to medically unexplained illnesses, mistakes in interpreting symptoms can visit trauma and despair upon patients and families. 

Last May, an Irish court ordered a hospital to pay a young man 6 million euros for having failed to diagnose a brain tumor, an error that delayed necessary surgery by months. Doctors had misdiagnosed his headaches, concentration problems and hand numbness as “psychological and functional” and referred him to “the mental health services and physiotherapy,” according to the Irish Independent.

Physicians can be quick to default to psychological explanations when they don’t understand what is causing a patient’s problems, noted Brian Hughes, a psychology professor at the University of Galway, in a blog post about the case. (Professor Hughes is a friend and colleague.) 

Maeve Boothby O’Neill was born in 1994 in London. Her parents divorced when she was five, and from then on she lived with her mom in southwest England — first in Dartmoor, and then in Exeter, a major university town.

In pulling together the following account, I spoke multiple times with Maeve’s mother, Sarah Boothby, via social media as well as in her cozy flat on a quiet road a few blocks from Exeter’s High Street — the same flat where Maeve had struggled with her declining health and where she’d died the previous fall. While there, I reviewed three fat clip binders stuffed with copies of Maeve’s medical and social service records, voluminous correspondence, reams of handwritten notes and journal-type entries, applications for social benefits and related documents and writings.

The Royal Devon University Health NHS Trust, which oversees the hospital where Maeve sought care during the last months of her life, did not respond to an email seeking comment.

From an early age, Boothby told me, Maeve adored “storytelling” in all its forms and loved being surrounded by books. She wrote her first play — or rather, she dictated it — when she was seven. “She played happily in her imagination for days on end,” said Boothby.

Maeve expressed her opinions early. During a family vacation to southern Spain, Boothby recalled, Maeve, then four years old, declared: “What’s the point of Spain? It’s too hot!” At 10, she became a vegetarian out of both principle and gustatory preference.

In the summer of 2007, when Maeve was 12, both she and Boothby came down with what felt like a mild viral illness. Boothby recovered completely after four weeks. But according to Maeve’s diary from that time, she still felt exhausted weeks after the acute sickness.

(Boothby read the diary after Maeve’s death. It opened with this advisory: “The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve.” Boothby posted the following snippets and others from the diary on Twitter. )

Besides the references to exhaustion that pepper the diary, Maeve also expressed delight about compelling personal matters — celebrating her birthday, getting a new dollhouse, visiting her dad in London.

Just after 11 p.m. on August 25, the night before her birthday, she wrote:

Over the next few years, Maeve’s exhaustion increased, sometimes accompanied by punishing headaches. She began fainting while engaged in gym class, school sports, dancing and even walking. Her social life dropped off significantly and she reduced her school attendance to essential classes only, although she managed to keep up her grades.

Two general practitioners examined Maeve, found nothing wrong and dismissed her symptoms as “normal for a girl of her age,” said Boothby. A pediatrician referred Maeve to psychological services while telling her “the symptoms were all in her mind,” wrote Boothby in her inquest statement.

“She was only 15 and doubted herself for years afterwards,” Boothby told me.

Spontaneous remission from ME is relatively rare, although the disease is known to fluctuate. Many patients remain more or less stable for years, and some improve slowly. Others, like Maeve, experience a gradual decline, for reasons that remain unclear. It is estimated that about a quarter of patients are home-bound or even bed-bound. 

In 2012, despite her reduced class attendance, Maeve graduated from high school in Bristol, where she and her mother were living for a year. She earned top grades in Russian, biology and English literature. She’d long imagined a career involving travel, foreign languages and international relations.

That year, Maeve was finally referred for assessment to a clinic specializing in CFS/ME, as the illness was then often called, at a hospital in Bristol. Although the intake and diagnostic process dragged on for nine months, a specialist at last confirmed that she had the illness. In a subsequent email to the specialist, Maeve expressed relief at getting the news.

Shortly afterwards, Maeve and her mother returned to Exeter, where she contacted the local CFS/ME clinical service and reviewed their guidelines for treatment and care. These guidelines recommended a behavioral and psychological approach to recovery based on the hypothesis that patients like Maeve were extremely out of shape from remaining sedentary and harbored dysfunctional beliefs about having an organic disease that caused them to relapse when they did too much.

For decades, two related interventions were viewed as the standard-of-care for ME. A specialized form of cognitive behavioral therapy was designed to alter patients’ faulty beliefs so they would do more. An approach to increasing activity called graded exercise therapy (GET) was designed to reverse their physical deconditioning so they would do more. A major British study called the PACE trial, with the first results published in 2011 in the Lancet, appeared to demonstrate that these treatments led to significant improvement and even recovery.

The information Maeve received in 2012 conformed to this approach. Leaflets advised her that “many people with CFS/ME have unhelpful thoughts,” which include “catastrophizing,” “eliminating the positive” and “all-or-nothing-thinking.” Instead of adopting these patterns, the leaflets advised, patients should ask themselves questions like: “What alternative views are there?” and “How would someone else view this situation?” and “Am I focusing on the negative?”

Maeve found this approach useless but did see a specialist in Mickel therapy, a cognitive approach popular in the U.K.. In a journal entry, Maeve wrote that, according to the therapist, “I should have more fun and be more childlike” and “my body’s ‘message’ is: my symptoms are here to tell me to stop containing my emotions and start expressing them honestly now.” 

She dropped the therapy after a couple of sessions. “It isn’t working for me,” she wrote. “If anything it’s making me worse, because I’m worrying about not having fun.”

As advised by the CFS/ME service, Maeve kept a meticulous activity diary in an effort to determine her “baseline” — the amount she could do without triggering the relapses that characterize post-exertional malaise. The goal was to increase the amount over time in order to nudge her body to improve. Maeve regularly struggled to stay within her limits.

In an email to the doctor who diagnosed her, she expressed concern that her legs ached after any physical activity. “Don’t worry about the aching of the legs,” the doctor replied. “That will not go until you enter a phase of sustained improvement — then it will, I promise you!”

“I’m looking forward to entering a period of sustained improvement so I can have my legs back!” Maeve responded in a follow-up email.

The doctor’s promise proved to be illusory. Maeve never entered a period of “sustained improvement.” Eventually, she realized her baseline was around 30 minutes of activity a day. If she exceeded it, she suffered a relapse — or a “crash,” as patients called it. And as she struggled to accept this restriction, she crashed again and again.

In the years since the Lancet and other journals published findings from the PACE trial, medical and public health experts — including me — have documented that the study includes egregious methodological and ethical missteps. Related research has also been shown to be poorly designed and fraught with bias. In 2015, I wrote a 15,000-word exposé of the PACE trial that garnered significant media and scientific attention, and I have continued to criticize research in the field. 

In 2017, the CDC rescinded its recommendations for CBT and GET as treatments for the condition. The CDC website now flatly declares: “ME/CFS is a biological illness, not a psychologic [sic] disorder…These patients have multiple pathophysiological changes that affect multiple systems.”

On October 31, 2021 — less than a month after Maeve’s death — the U.K.’s National institute for Health and Care Excellence, or NICE, issued new clinical guidelines for ME/CFS that reversed the agency’s own prior recommendations for the two treatments. In a review of studies, NICE assessed the quality of evidence in favor of GET and CBT, including from the PACE trial, as either “very low” or merely “low.”

Maeve read everything she could discover about her illness and sought out whatever she thought might help. She found yoga and meditation helpful. She explored the possibility that she suffered from a deficiency of carnitine, an amino acid essential to energy metabolism. At various times, turmeric, B12, aspirin, the gastrointestinal drug famotidine and the gout drug colchicine seemed to provide some symptomatic relief.

She had to fill out exhaustive applications in order to obtain funds for basic expenses like buying a wheelchair and hiring care personnel. In her London Review of Books essay, she protested at the indignity of having to prove to a “mean and punitive government” that she was not malingering or faking it but was actually very sick and reliant upon benefits to survive.

“To access my right to this welfare payment,” she wrote, “I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful.”

Records of correspondence with medical and social service agencies show multiple occasions of missed calls and misunderstandings about appointments. In a journal entry, Maeve expressed irritation at the inefficiencies and delays involved in dealing with the public institutions responsible for ensuring that everyone could access care and assistance. “It makes me angry that I’m supposed to get free treatment at the point of need, AND I FUCKING NEED IT NOW AND IT TAKES A MONTH FOR ANYONE TO LIFT A FINGER TO EVEN THINK ABOUT HELPING ME,” she wrote at one point.

At other times, her comments conveyed a sense of hope, however fragile. “I am still young and will get better,” she wrote in one application for benefits. “But no one can tell me how long it will take.”

Such hope notwithstanding, the scope of activities Maeve could perform gradually dwindled. “Over time, she became unable to cook, wash up, change her bedlinen, clean her room, apply for and renew her welfare benefit entitlements, make or attend appointments or go outdoors without assistance,” wrote Boothby in her inquest statement.

ME or CFS has only rarely been cited as a cause of death. In England and Wales, the illness was cited as the underlying cause or as a “contributory factor” in only 88 deaths from 2001 to 2016, according to the U.K.’s Office for National Statistics. Malnutrition is among the most serious possible life-threatening complications. In very severe cases, patients can become unable to ingest sufficient nutrition because they have difficulty chewing and swallowing. 

At that point, tube-feeding — via a tube inserted down the throat or directly into the stomach through the abdomen — can be necessary to prevent death from malnutrition. William Weir, an infectious disease and ME specialist in London, has treated several patients who have been tube-fed for extended periods before improving enough to be able to eat on their own. 

Unfortunately, Dr. Weir told me, doctors who don’t understand ME often view malnutrition in severe patients as if it were a psychiatric issue like anorexia. “Patients with this illness are frequently regarded as having a psychological disorder that causes them to be deliberately and perversely inactive without any regard for the possibility that their inactivity actually has a physical basis,” he said.

By early 2021, Maeve’s condition had deteriorated to the point where she was unable to consume enough food, even with her mother preparing liquified meals. Boothby and Maeve’s GP at the time advocated for her to be hospitalized so she could have a feeding tube inserted. In mid-March, Maeve was admitted to the Royal Devon and Exeter Hospital. Noting that her tests appeared to be normal, the staff physician refused the tube-feeding request. 

Maeve was discharged without a plan for providing her with sufficient nutrition at home, Boothby noted in a chronology of events of the last months of Maeve’s life that she prepared for the inquest. She was “unable to sit up, hold a cup to her lips, or chew,” wrote Boothby, and “all her symptoms were now highly exacerbated.”

Further deterioration in Maeve’s condition led to a second hospitalization in May. By then, Dr. Weir had examined her and found her to be extremely debilitated. In a phone call and a follow-up letter, he recalled, he urged the hospital physician overseeing Maeve’s care to insert a feeding tube.

The hospital did not follow Dr. Weir’s advice. The doctor, Boothby wrote, was “adamant she would not tube feed Maeve and told Maeve she would ‘feel much better if you gave your hair a wash.’” 

Again, Maeve was discharged without a plan for home care, according to Boothby. “She was completely immobilized except for being able to turn her head from side to side,” she wrote. “Her voice could not rise above a whisper. She was unable to reposition in bed or to lie on her side.”

During a third hospital admission that summer, a naso-gastric tube was finally inserted. But by that point Maeve’s body was unable to tolerate the hospital’s tube-feeding regimen. She responded with bouts of pain and constipation, which caused crashes and further exacerbated her condition. The tube was removed, and she was again discharged. 

On August 27, 2021, Maeve turned 27.

When tube-feeding fails, another possible option is total parenteral nutrition, in which the digestive system is bypassed and patients are infused through a vein. In a letter dated September 9, 2021, Dr. Weir warned the chief executive of the Northern Devon Healthcare NHS Trust, which runs the hospital, that Maeve’s situation looked dire if this approach was not adopted.

“I have experience of similar cases leading to death and Maeve’s current clinical status shows all the initial hallmarks of this,” he wrote. “I am not exaggerating the issue when I say that this [total parenteral nutrition] may well save Maeve’s life.” 

Maeve ultimately refused to be readmitted because the hospital would not guarantee that she would receive total parenteral nutrition, according to Boothby’s written chronology. Maeve knew that without nutritional support she was going to die, Boothby told me, and she wanted to die at home — not in the hospital while being denied care. 

Maeve continued to deteriorate throughout September and received morphine for pain. On October 1, according to Boothby’s written chronology, Maeve “said she was experiencing mild hallucinations.” On October 2, she exhibited “rapid shallow breathing, racing heart, eyes rolling.” 

At 1:45 a.m. on October 3, “Maeve was awake but incapable of utterance or focusing.” At 3 a.m., she was found dead. Doctors confirmed her death at 11 a.m., and her body was removed to a funeral home in the early afternoon. 

That evening, Maeve’s GP visited Boothby. “She said she had never had a patient so poorly treated by the NHS,” wrote Boothby. 

The inquest, which is not yet scheduled, will presumably shed light on the events that led to Maeve’s death and on the hospital’s actions in the matter. Philip Spinney, the senior coroner for Exeter and Greater Devon, declined to be interviewed but noted in an email that the process is at the “evidence gathering stage” and that the inquest itself could last at least two days. 

Given the prominence of Maeve’s case, the inquest and its findings could receive significant publicity. Boothby told me she would like the investigation to “expose as many facts as possible to public scrutiny.” 

Beyond that, she hopes it will demonstrate “how socially, morally and ethically unjust it is to deny a biomedical cause to ME” and will lead to recommendations for preventing more deaths like Maeve’s. “She died by the incomprehension and disbelief of an acute hospital,” said Boothby.

[blogsonayurveda]

What is Long Covid? Symptoms and Recovery

As we progress through this pandemic, we discover that many people are still struggling with long-term problems after recovering from COVID. The term "post-COVID conditions" refers to a wide spectrum of problems (physical and/or mental) that appear during or after COVID-19 and lasts for around 2-4 weeks or sometimes even longer. Long-COVID, post-acute sequelae of SARS-CoV-2 infection (PASC), post-acute COVID-19, chronic COVID-19, and post-COVID syndrome are among other titles that have been used to characterize the extended symptoms.

Whatever name you choose to give this condition, it is undeniably a real sickness known as Post-COVID, and although the specific symptoms may differ from person to person, the main lasting problems we observe are inflammation, exhaustion (fatigue), and mental fog.

Although these symptoms impact several internal systems and may appear to be independent problems, they are actually connected. Therefore, whichever therapeutic options we choose to address a single issue, will result in overall positive effects.

What are the symptoms of Long COVID?

How unwell you were when you initially contracted COVID has little bearing on your likelihood of acquiring long COVID. This implies that you could develop long-term problems even if your condition was minor or asymptomatic. People dealing with post-COVID may experience a variety of symptoms that last for months after the infection. Sometimes the symptoms may even subside or even return.

Not everyone will experience post-COVID symptoms in the same way. People who have post-COVID illnesses may suffer from health issues as a result of various sorts and combinations of symptoms occurring over varying amounts of time. Most patients' symptoms gradually get better over time.

People suffering from post-COVID conditions most commonly report:

General symptoms

Fatigue or weariness that affects daily activities

Symptoms that worsen after exerting oneself physically or mentally (sometimes called "post-exertional malaise")

Fever

Heart and Respiratory symptoms

Respiratory issues or lack of breath

Chest discomfort and cough

A hammering or quickly beating heart (also known as heart palpitations)

Neurological symptoms

Having trouble focusing or thinking (sometimes known as "brain fog")

Headache

Issues with sleep

Standing up makes you feel queasy (lightheadedness)

Feelings of tension and anxiety

A change in taste or smell

Moodiness

Ayurveda, Immunity and Long Covid Recovery

According to researchers, an impenetrable immunity is crucial during a pandemic. Therefore, since the inception of COVID-19, Ayurvedic doctors have advocated this viewpoint and have recommended immune-stimulating medications.

Ayurveda focuses primarily on the use of remedies or medications in the form of plant preparations, it is widely regarded as herbal medicine. Throughout the COVID-19 epidemic, numerous herbal remedies have been used to ease symptoms and boost immunity. Leading Ayurvedic doctors have been advising using herbs like Guduchi (giloy) and Ashwagandha. According to Ayurveda, these herbs have been used for ages to treat and prevent viral and infectious disorders.

Guduchi - The Hero Herb for Covid-19

The ayurvedic herb Guduchi, sometimes referred to as Giloy, Chitamritham, or Tinospora cordifolia, is a potent source of antioxidants that supports the circulatory system. Along with promoting the health of bones and muscles, it helps the neurological system, respiratory, excretory, and digestive systems. This herb is a traditional medication that has been used for generations as an immune booster that also helps to purify blood, combat viruses and bacteria, and remove toxins.

Researchers investigated the antiviral properties of phytochemicals for the treatment of Covid-19. The phytochemicals in Guduchi showed a binding affinity to the spike proteins in SARS Coronavirus-2, according to the report. This could prevent the virus from replicating and slow it down.

It is true that it is difficult to stop the spread of viruses in a nation like India. Take a look at how crowded our cities are! It is impossible to enforce social distancing, moreover, Indians are particularly bad at adjusting to the new normal. The majority of us also have the bad habit of hanging our masks carelessly on our chins and don't even believe in sanitization, only making the situation worse. These are legitimate concerns about the virus spreading, leaving us with not a lot of choice, but to boost immunity and begin antiviral treatment as soon as possible to prevent negative consequences.

CelWel is a natural solution that helps rebuild the immune system and fights the symptoms of Long Covid and other illnesses. It utilises the power of Guduchi and Molecular Signaling for faster recovery from chronic fatigue, tiredness, breathing problems, fever and several other related issues. Give your immune system that required support today through CelWel.

[anyroads]

Reblogging again with some useful sources (I was on my phone before) and also just want to say that while historically 25% of covid patients experience lingering symptoms for several weeks or even months, fewer experience full-blown long covid and it's unlikely that you will, so none of this is meant to cause anxiety or assume you'll need it. OP has a popular blog, however, and I feel it's important to spread correct information about disabilities. I've come across a lot of people who had Long Covid and didn't know it, or that they could get help for their symptoms. So this info is to spread knowledge and awareness, and to prevent people like Anon from giving well-meaning incorrect advice that could hurt people.

Firstly, this article from January on the Netherlands study that first showed evidence of what had been theorized for years and expressed by LC patients, which is that exercising is directly and significantly detrimental to them.

"New research from the Netherlands is important because it shows clear evidence of a biological basis for their symptoms. Scientists there compared 25 people with long COVID to those who'd had COVID and fully recovered. Both groups did an exercise test on a stationary bike that lasted about 10 to 15 minutes. The research team drew blood and took muscle biopsies from their legs before and after the exercise. Braeden Charlton is at Vrije University in Amsterdam and one of the study's authors. ... After exercising, the consequences to the muscle were dramatic. Charlton says multiple tests revealed the mitochondria, the body's cellular power plants, are compromised, meaning their capacity to take up oxygen and produce energy is impaired. ... they also found atrophy and immense amounts of cell death in the muscle tissue."

In short, due to Long Covid compromising mitochondrial functions, muscles don't repair the way they normally would. When you exercise and end up feeling sore, it's because your muscle tissue is damaged, which is normal - you get stronger because muscle tissue repairs stronger than it was. In LC patients this doesn't happen, because of the compromised mitochondrial function. Their muscles just remain damaged. Although this study is new and the sample pool for it was small, Long Covid doctors have been telling patients very strictly to avoid exertion and exercise that raises their heart rate for years. This very much includes "light jogging" and for some people it even includes going for walks. A year ago I was told that the most I'm allowed to do was go for a walk around the block, and that I had to rest for ten minutes on a bench before walking up the stairs to my flat (since then, with a lot of work and just healing over time, I've expanded this to longer walks and even using the rowing machine we have at home for up to 4 minutes with rests every minute, just to give you an idea of what can fall on the spectrum of exercise limitations during recovery).

Again, it varies on a case by case basis, so talk to a doctor if you think you need to, and keep an eye on your heart rate. The full article is linked below:

A few more useful resources:

Generally now, there's a differentiation between post-viral disorder following a covid infection and Long Covid. Many people experience several weeks of fatigue after covid, as well as other Long Covid symptoms, but this is considered post-viral malaise. Symptoms are not considered Long Covid until you continue to experience symptoms for over 3 months.

You're not at that point yet but I regretfully have to inform you that if the symptoms persist (long covid) light sport activities like taking brisk walks or jogging are the way to get rid of them. Don't overexert youself while you're sick but also don't remain in a sort of 'relieving poisture' forever. I hope you'll feel better soon and that some of the tips helped! Thank you for still organizing polls for us, you're a champ <3

I’m probably not doing Covid recovery right but since I have to work, I have been moving around and lifting stuff and carrying things, probably more than I should be. So hopefully that counts toward light exercise? (I’m still trying to rest whenever possible but unfortunately, as of right now this is not me.)

[covid-safer-hotties]

Also preserved on our archive

By Jim Wappes

A new survey study reveals that people who had two COVID-19 infections were more than twice as likely—and those who had three or more COVID-19 infections were almost four times more likely—to report long COVID as those with one infection.

The study involved 3,382 global survey respondents and was conducted by researchers with the Patient-Led Research Collaborative on long COVID. It was published this week on Research Square, which is the preprint service of the Nature Portfolio. It has not yet undergone peer review.

Among the survey respondents, who were polled from March 30 to September 1, 2023, 22% had never had COVID-19, 42% had it once, 25% twice, and 10% three times or more. They said their acute SARS-CoV-2 infections occurred from February 2020 through August 2023, with 24% of first infections and 27% of re-infections in 2020. They reported that 52% of first infections and 43% reinfections were in 2022, while 7% of first infections and 15% of reinfections were in 2023.

Reinfection raised risk of severe fatigue, functional limitations The researchers found that, compared with people who had COVID only once, those who had two COVID infections were 2.14 times more likely to report long COVID, and those who had three or more COVID infections were 3.75 times more likely to have the long-term condition. They also noted that the odds of both severe fatigue and post-exertional malaise, both of which can be quite debilitating, increased with reinfections.

Fatigue severity also increased with re-infections. As did the odds of functional limitations, such as bathing and dressing difficulty and limits on moderate activity.

The researchers also noted that the number of pre-infection vaccines and boosters cut the risk of long COVID, but their efficacy was diminished by reinfections.

The authors conclude, "These findings underscore the need for robust public health measures for COVID-19 infection prevention and the importance of considering reinfections in Long COVID research and clinical practice." The team summarized its findings on X.

Study Link: www.researchsquare.com/article/rs-4909082/v1

[myalgicencephalomyelitiscfstom]

An informative article on ME and post-exertional malaise [PEM] by the Norwegian science news site forskning.no has now been translated into English

Starts off as a case history but includes some comments from experts. —- What's extra frustrating is that it doesn't matter if she is doing enjoyable things or chores.

“People wonder why you can’t focus on things you like, so they can give you a surplus of energy. But the consequences are just as great when I visit a friend as when I go to a doctor's appointment,” she says. —-

---

Extract:

Pacing often involves measures to conserve energy, such as using assistive devices and avoiding unnecessary activity. It is also important to spread activities throughout the day with enough breaks in between.

'Any measure that can prevent a worsening of symptoms will not only stabilise the condition but also reduce discomfort and improve the patient's quality of life,' according to the guidelines from the Norwegian Directorate of Health.

---

---

“A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day.”

---

“Cheering doesn't help Sommerfelt believes part of the problem is that PEM is often completely invisible to others.

“During an activity, it's not possible for others to notice that someone has gone over their limit," he says.

And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell.

Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become. Cotton would like people to understand that cheering them on doesn't help. We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes.

“Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,” she says.

“Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards," she says.”

[phleb0tomist]

idk if youre the best person to ask, but since you also suffer me/cfs, its worth a shot to ask. i dont rly know anyone else with it. how do you go about making sure people take you seriously? ive been really struggling to stress to my family that my cfs is a real thing. im really dependent on people to make it by and cant carry my own weight. its making my primary caregiver (my mom) frustrated. i feel guilty and idk what to do. (apologies for venting a lil!! u can ignore this ask if u want /gen)

you absolutely don’t deserve to feel guilty about this <3 I’m sorry that’s been so difficult for u. this is a problem for lots of people with me/cfs, and its so upsetting cos it’s so genuinely debilitating. strap in cos this is gonna be long.

Now, it might help if u provide them with proper info. they probably just have a cultural knowledge of M.E– the public’s consensus is “being tired a lot, upper middle class burnout, not a physical condition, just push yourself, BELIEVE U WILL GET BETTER!!!”

key actual facts...

— M.E is a registered neurological condition and can affect all bodily systems. it’s considered mainly neurological because autopsies show inflammation in the brain & spine.

— it’s NOT just being fatigued, it affects the whole body systemically. iirc according to the most cutting edge diagnostic criteria, you don’t even need fatigue to be diagnosed.

— studies gather that post exertional malaise is a pathological physical response, causing reduced cardiac output (the heart can’t work properly), immune reactions, shutdown of the muscles to prevent cell death, brain dysfunction, and more.

— the study claiming that M.E can be treated with exercise & cognitive therapy is fraudulent, as proven by a large panel of experts. that whole view of the illness is based on a lie. the official guidelines are STILL in the process of being changed, which is an outrage that activists are still protesting.

— getting worse after exertion is a protective mechanism; your body is trying to stop you from damaging it further.

— M.E has a lower quality of life than any other illness tested, including MS, cancer & stroke.

— the primary way to stop M.E getting worse is to PACE YOURSELF. overexertion can literally make u worse in the long run, sometimes for years. there is tons of evidence for this.

personally a big thing for me was to stop calling it ‘cfs’, but that’s an individual choice. there’s a lot of complicated reasons for my beliefs on that, ig I could make a post about it, I have so fcking much to say.

sorry this got so long. I think legitimising M.E is the biggest stepping stone to better treatment. good luck <3 <3

[sources]