#Post-Viral ME/CFS

[compassionmattersmost]

10: Embracing Your Own Pace: The Conclusion of Our Post-Viral ME/CFS Exercise Journey

Dear Friends, As we come to the conclusion of this series on exercising with post-viral ME/CFS, I want to offer you a heartfelt reflection on the journey we’ve been exploring together. It’s been a path of discovery, patience, and above all, compassion—compassion for yourself, your body, and your unique experience with ME/CFS. We’ve discussed everything from imagining workouts while lying in…

[covid-safer-hotties]

Also preserved in our archive

[hellyeahsickaf]

"My body hates me" "Ugh I hate my lousy ass body always holding me back" "I'd hang out but my stupid body's too fucked up to let me" I know it feels like your body's working against you but it isn't- it's doing its best to protect you and keep you alive

If your chronic illness is post-viral and/or autoimmune your body's doing everything it can to fight a constant battle against what it believes to be a threat. Sometimes it develops because an infectious disease has interfered with the functions your body carries out. And some illnesses develop symptomatically as a survival response because your cortisol production indicates that constant fight or flight isn't working so it forces a freeze response. If you're in pain, fatigued, have brain fog, etc, you can't exert yourself and are forced to conserve your energy. That way you don't overdo things and possibly compromise your survival. It feels like a lousy survival response, it really sucks, but it's still an indicator that your body's doing its best

You can hate your symptoms and vent about how much they suck, I know they truly suck balls and some days I just wanna scream and break things while I'm in bed struggling to keep my eyes open. Just don't forget that your body doesn't "hate" you and you should treat it kindly. Many symptoms like pain are there to tell your brain something's threatening it- even if your nerves are misinterpreting sensations like strong temperatures and sending pain signals to your brain. Billions of little cells and microorganisms are working 24/7 to keep you going. Those little guys carry out so many functions and none of them are for the sole purpose of making your life harder. It always comes back to your body trying to survive

[pandemic-info]

(via If we don't develop a treatment we're f*cked)

“Not to be a downer, but this is the result of a study researches led at the University of Toronto following SARS1 patients who were disabled by the virus initially and how they were doing 20 years later.“

Screenshot “from the presentation by; Prof. Daniel M. Altmann, Department of Immunology and Inflammation, Imperial College, Faculty of Medicine, London, UK at #UniteToFight2024 https://unitetofight2024.world/program/”

+ important comment:

“A study on SARS 1 survivors, if you're curious:

2023 study in The Lancet on SARS 1 survivors

Lots had femoral necrosis (bone death), osteoporosis, and long-lasting, possibly immunologically-based fatigue.

Just a reminder that while there are similarities, these are two different diseases. SARS CoV 1 hospitalized 70% of infected and killed 10% at the time of containment. They're similar in disease profile and in genetics, but they are NOT the same.

COVID-19 is much more infectious and less lethal, and the range of post-viral complications is different. Plus, we don't know what treatments will come out for Long COVID patients, but medicine is much more advanced and there is much more funding for Long COVID than there was for SARS CoV 1 survivors, who were infected in 2003, and never had access to a vaccine.”

[myalgicencephalomyelitiscfstom]

[chronic-melon]

Folks, I don’t try to sell ANYTHING to anybody, but this is for the chronically ill folks with limited energy who are trying their best to pace themselves and failing.

I have Hashimoto’s, ME/CFS, fibromyalgia, and chronic migraine. I struggle daily to limit the use of my energy and not overextend myself. I was running out of options and constantly running myself into the ground, having a really bad day and then crashing hard for 3 days or more.

If you’re finding that you struggle with this too, and you think tracking your heart rate and daily symptom severity could help, I highly recommend Visible.

It uses a Polar armband to continuously track your heart rate, and the 2.0 band now has a 5 day battery life, making it capable of sleep tracking. I currently have the 1.0 version, but I’m hoping to switch soon.

If heart rate variability, automatic “spoon tracking” (the app calls them pace points) and real-time medical data you can download and share with your healthcare team seem like good tools for you, then click on the link to explore!

Transparency: if you decide to purchase a membership, please know I receive $20 off the 2.0 armband, and so do you. I don’t receive any money, just a discount on the new band. 💛

And yes, this membership is not financially feasible for a lot of disabled people, especially those on social security benefits. They are working on getting the product to be available through insurance or FSA, but to do that, they need folks to support their research. That’s why I’m enrolled in clinical studies through the app.

Please let me know if you have any questions! This device has seriously changed my life, and I wouldn’t blindly recommend it to my community if I didn’t seriously believe that.

[survival-of-the-chillest]

i finally did the thing!

woohoo ig

[databent]

my mystery illness hurting me -_-

[willowreader]

This is an excellent video explaining ME/CFS The Covid infection and other viruses have caused so many individuals all over the world to suffer with this horrible condition. They are too sick to advocate for themselves.

The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide. According to the National Center for Health Statistics (NCHS) during 2021–2022, 1.3% of adults in the United States had ME/CFS.Mar 16, 2024

[compassionmattersmost]

9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS

When living with Post-Viral ME/CFS, it’s essential to remind ourselves that our journey with exercise is not measured by how much we do, but by how gently we honor the unique rhythms of our bodies. This is especially true when it comes to engaging in physical activities like the Leg Press Machine. Today, we’ll explore how to mindfully approach this exercise in a way that supports both your…

[auressea]

I know a number of people who are NOW chronically ill. Many of them have not been given any support or resources to adapt.

additionally-Newly disabled people can take a really long time to come to terms with reduced function and barriers.. there's a long process of overcoming our internalised ableism.. to accept our new landscape.

Please. PLEASE-- allow yourself to REST. PACING is IMPORTANT!

[smaller-comfort]

Funny story, I actually own two copies of this book- the first was a birthday gift from my brother in 2010 or therabouts. This copy was a Christmas gift from my other brother in 2023.

I do genuinely love this book, though- it's a quick read and beautifully written. It's as much about the author's experience with chronic illness as it is about the snail that kept her company for a year while she was bedridden. Lots of fun snail facts, literary references, and musing on the human condition.

[helenwhiteart-blog]

Pacing 101

I really want to try and talk through some of the first stages of learning to pace because it’s not as simple as just saying “go off and do it” (as you possibly know and I am surely learning). As per my last post, I’m using two powerful aids to help me master this: the book  Classic Pacing for a Better Life with ME – Ingebjørg Midsem Dahl and the Visible app, both of which I highly recommend as…

[donjuaninhell]

@strawberryswitchblader One of the problems surrounding Long Covid as a diagnosis is that it encompasses an overly broad variety of post-acute sequelae. You have people experiencing everything from scarring on the lungs, liver and kidney damage, to loss of smell. Then there are those who develop dysautonomic conditions like POTS or who are later diagnosed with ME/CFS and experience Post-Exertional Malaise. There is also a very large (perhaps even the majority) group of persons who will experience a prolonged but temporary period of post-viral fatigue; these are the people who recover gradually on their own, generally within a timeframe of six to eight months. It's not really exercise that leads to their recovery, they would have recovered on their own, and may even have recovered more quickly through a program of radical rest. My beautiful girlfriend is dealing with some post-viral fatigue right now after having gotten sick with mononucleosis this past summer. It's been a real struggle for her dealing with it, but she's also not experiencing PEM, so I'm confident she'll fully recover.

Many of the people who make claims about recovering from "chronic fatigue syndrome" through exercise therapy or some psychological treatment are in this post-viral fatigue category and mistaking correlation for causation and forgetting that the plural of anecdote is not data. The data overwhelmingly supports the notion that for patients experiencing PEM, graded exercise leads to a worsened disease state and a potentially permanently lowered baseline. Before I was diagnosed it's precisely how I inadvertently powerlifted, nightwalked and gradschooled myself into becoming housebound.

And having lived with ME at varying degrees of severity going on twenty-seven years now, I gotta say, it's very boring resting all the time. You get antsy fast. If all it took to get better was walking a bit more every day, I'd jump at the chance, but exercise doesn't really do much for chronic CD8+ T cell exhaustion, or hypofusion causing excess calcium and sodium buildup in skeletal muscles leading to mitochondrial damage. There was a paper that came out just a few months ago that published the results of analyzing blood samples from nearly 1500 ME/CFS patients and 130,000 healthy controls, and they discovered hundreds of biomarkers which indicated everything from insulin resistance to poor blood oxygenation, mitochondrial dysfunction, and systemic chronic inflammation. You can't fix any of that with exercise.

It's all a mess, there really needs to be stricter research diagnostic criteria, and better delineation between the various subtypes. It would clear up so much confusion, but that's also why there haven't been tighter criteria. Exercise and therapy makes for a very inexpensive treatment, one that insurance companies are far more willing to back than experimental anti-viral treatments or IVIg therapy, and in some countries the disability allowances for psychological conditions is less than for physical conditions. If you keep it ambiguous if Long Covid or ME/CFS or fibromyalgia or POTS are physical or psychological diseases, well you save austerity governments a few bucks there too.

[compassionmattersmost]

8: Gently Building Strength with Compassion: The Converging Chest Press for Post-Viral ME/CFS

The journey toward mindful movement when living with Post-Viral ME/CFS is deeply personal, one that requires patience, gentleness, and, above all, self-compassion. Today, as we continue this path of self-care and mindful strength-building, we’re going to explore the Converging Chest Press Machine—a tool that, when used thoughtfully, can help us nurture our upper body strength in a safe and…

[rebirthgarments]

TW: Chemical w-rfare, Ab-rtion

Urgent Ask to evacuate Nara, a 🍉 disabled woman with MS who also has pancreatic cancer due to chemical w-rfare.

Support by financially contributing to her @FedUp4Palestine vetted funhnd-raizer (that I personally vetted): givebutter.com/NaraMedicalAid

+ resharing/ reposting this post!

I, Sky Cubacub- a Fed up 4 Palestine team member, have been in direct contact with Nara to get to know her and her story more over the past few days. We have become fast friends due to so many overlapping symptoms of our disabilities. Nara’s story caught my eye because I have post-viral ME/CFS which many times is a precursor to MS. I really want my disability community to show up for her to get this campaign funded that is so close to my heart so that she can continue medical treatment.

We have chatted extensively! During our chats, I found out from Nara that she had not previously had health issues until she was exposed in the white phosphorus attack in 2008. The long lasting damage and effects of phosphorus continue to compound and become more and more disabling to this day, even after 16 years.

Here is her story in her own words (edited for clarity):

“Hi I'm Nara,

I'm a cancer and multiple sclerosis patient. I need treatment, examinations, and follow-up on a regular basis, but the hospitals in which I used to follow up were bombed and the other one was turned into military barracks. All I need now is to leave Gaza for treatment, preserve my life, and live with my family in peace.

We're a family of 4, including my 12 and 7 year old children.

I had been diagnosed with a tumor in the pancreas as a result of inhaling phosphorus in a previous war. A couple years after being exposed to phosphorus, I became pregnant, and the fetus was pressing on the tumor, which drew the doctor’s attention to the cancer. My fetus was emergency aborted, and the spleen, 80% of the pancreas, and part of the small intestine were removed. I complained every now and then of a lot of pain as a result of the removal of part of the pancreas. I was having follow up care in the Turkish Friendship Hospital for hematology and tumors. But since the beginning of October, I have not been able to follow up because the hospital has turned into a military barracks.

The remaining part is talking about multiple sclerosis:

In 2018, I was diagnosed with multiple sclerosis. I had many complications, such as inflammation of the seventh nerve in the eye, the inability to walk with balance, movement with difficulty, and many symptoms. I was then required to take 12 injections every month and many medications and vitamins. I was following up at the Nasser Medical Complex in Khan Yunis, but unfortunately the hospital was out of service due to the war. So for a long time I have not received any injections. MS is truly difficult and it controls my life completely, and the attacks occur in many and varied ways.”

A note about her breathing apparatus:

Because people in displacement have to wait in long queues and pay to use the bathroom, Nara had started to restrict her water intake because of a UTI she never has been able to heal from. This has created a problem with raised levels of potassium, so doctors have placed her on oxygen for fear of the potassium affecting her heart.

Goals

she needs at least $15,000 to evacuate

2 adults at $5,000 each

2 children at $2,500 each

this price is subject to increase due to the cost of registration for evacuation continuing to go up

The other money will go to the cost of treatment and living costs.

Nara chooses to stay anonymous because she has had to mask her disabilities so much that only her family knows about her MS and Cancer, so we have not linked her instagram, but we are in direct contact with her and can verify that she is who she says she is! Because of this, she cannot promote her own fundraiser, so it is our job to collectively do it for her!

[Image Description: a digital illustration by @k8deciccio of Nara, a Pal-eh-stienian woman wearing a black hijab/outfit with purple highlights. She has a breathing apparatus that is bulbous that goes in her nose. Text Reads: Help Narawith Cancer and MS Treatment, She Must Evacuate with her family of 4. $30k goal givebutter.com/NaraMedicalAid . There is a QR code in the bottom right corner that goes to her support link. The @FedUp4Palestine logo is in the top left corner.]