#Post-Viral ME/CFS exercises

[compassionmattersmost]

2: Imagining Movement: An Introduction to Gentle Exercise for Those Living With Post-Viral ME/CFS

When living with post-viral ME/CFS, exercise can seem like an impossible dream. For many, the simple act of getting out of bed can take monumental effort, let alone the thought of stepping into a gym. However, there are ways to gently integrate physical activity into your life without exacerbating symptoms—and these steps don’t necessarily start with physical movement. Sometimes, they begin in…

[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.

[covid-safer-hotties]

What is POTS? This strange disorder has doubled since the pandemic - Published July 23, 2024

Unpaywalled at our covid archive!

Millions of people now live with the debilitating disorder, which can be triggered by viral illnesses like COVID-19. And many say the recommended treatment—exercise—has backfired.

In late 2021, after 18 months of long COVID symptoms, Oonagh Cousins, a member of Great Britain rowing team, was ready to resume training. She’d contracted COVID-19 in early 2020, and although her initial case was mild, Cousins spent the next year and a half experiencing a fatigue that went far beyond just feeling tired. “It was like a deep sickness,” she says, a “sludgy, deep weakness” that flared up after even mild exertion.

After that lengthy recovery period, Cousins’ only remaining symptom was a very mild case of postural orthostatic tachycardia syndrome—POTS—which is a type of dysautonomia characterized by an abnormal rise in heart rate after changing position, like sitting to standing. Patients with POTS report a variety of symptoms, including dizziness, fatigue, brain fog, and gastrointestinal disturbances.

Cousins is among millions of people living with POTS, a number that is estimated to have doubled since the beginning of the pandemic. Some of the known triggers include pregnancy, surgery, or a viral illness, such as COVID-19. A subset of these POTS patients also has a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by post-exertional malaise (PEM)—a situation in which symptoms worsen after exercise.

For patients with PEM, pushing past their physical limits—often encouraged in POTS recovery exercise protocols—can lead to major crashes. As a result, many patients with POTS and ME/CFS report being given inappropriate guidance on exercise, the consequences of which can be severe.

“They don’t teach us about ME/CFS or POTS in medical school,” says Sujana Reddy, a resident physician at East Alabama Medical Center, who developed both conditions after a COVID-19 infection in 2020.

Read the rest at the link above!

[kaija-rayne-author]

I went thrifting with the kids a couple of days ago and I'm still in so much pain it's making me teary. I don't cry easy. My therapist scolds me about it. 5 hours of shopping with two well behaved kids and I sat down through most of it. I could really use a wheelchair, but I can’t afford one. It would have to be electric, because my EDS is degenerative.

Guess I'm stuck in bed again.

I really wish people would understand that I would give so much to be able to just... live. Even the limited existence I had before covid was better than it is now. I can't go to a movie, or the zoo, or the aquarium. I leave the house for supplies and medical care. That is literally it. I risk my immunocompromised life every time I leave the house because people won't mask. I risk my minor children's lives and my partner's too. We're all immunocompromised.

I used to hike, ride horses, dance, bike, practice 3 types of martial arts.

Then I caught swine flu and my body gave up. I was diagnosed with me/cfs (which is now usually considered a post viral illness, meaning you got sick with a virus and never got better).

Then 3 years ago, I caught version 6 of the first wave of covid. I barely survived, but I never got better.

I honestly can't imagine how people can be so blasé about viruses. They can absolutely destroy your life. They've destroyed mine. I was healthy! I exercised and ate well! I was vaccinated! (Antivaxxers fuck off. I have science degrees, you're really badly misinformed.) I did everything right and it still took me down.

There's nothing you can do behavior wise that will guard you from viruses except masking, vaccinations, and social distancing. Setting up air cleaning options helps too, but since we can't even get people to mask, I'm not holding my breath on that one. (Har, har, I'm hilarious.) Vaccinations are imperative, but they don't do anything for transmission. They exist so that if you do get it, you have a better chance of survival.

And humanity could have defeated this illness 3 years ago. Except because selfish people wanted their 'normal' back... we didn't. PSA? Your 'normal' sucked a lot for disabled people already. It's worse now.

I do the best I can, but it has robbed me of so much. My scientific career, my ability to make a living that doesn't mean just scraping by well under the poverty line.

I can't hike anymore, or bike, the brain knowledge of my decades in martial arts and dance is still there, but I probably couldn't take a hit anymore. Being around horses again is an impossible dream.

Hell, just getting out of bed some days is an impossible dream.

I have nightmares of being without a mask, and people walk around bare faced.

I fucking guarantee there isn't a 'fun' thing on this planet that is worth living like I do.

The worst isn't when the virus kills you, it's when you survive it and have so little ability left.

And more people survive SC19 than die from it. They survive, but millions of people are already disabled from it and the numbers rise every day.

How are people not fucking terrified? How?

[horseforeplay]

idk if that's long covid but i got covid 3 times and i'm pretty sure i don't have the same stamina i used to have :// everything is so tiring i just prefer to stay at home most of the time

ackkkk i'm so sorry. i'm not a doctor obvi and this is a very limited glimpse into your experience, but with how common long covid is, it very well could be post-viral ME/CFS. with PEM, you can be okay as long as you're operating within your "bubble" (doing limited tasks but nothing spontaneous or exerting yourself more than usual). unfortunately, even if real exertion feels strained but manageable (and this can be a difficult task of any kind, not necessarily physical), you can crash 24-72 hours later. a crash can last weeks, months, or years. i had terrible energy problems immediately after my acute covid infection last year (i have now learned it's because my mitochondria are simply not functioning lol -- i just never recovered), but followed the advice of the seven? eight? different specialists i saw and tried to pace myself as work demands ramped up. i was OK-ed for surgery. i took on part-time work. i applied for grants and did my household chores. my energy remained tricky (like i could work from home normally, but a trip to costco could knock me out the next day), and i'd have seemingly spontaneous bouts of pleurisy. the signs were there. now, almost a year later, i am in the midst of my first major crash. i do not know when it will end. if you have any symptoms of PEM (and you can check out the archived atlantic article i linked in response to that recent ask) i need to emphasize that this is not a condition you can push through. you cannot work your way into health. if you have ME/CFS, i do NOT, under any circumstance, recommend exercising. many physical therapists attached to long covid clinics do not know this (as mine didn't), and will recommend activities that can kill you or leave you bed bound. even if it's not classic long covid, having the virus three fuckin' times is nothing to thumb your nose at. i'm sorry the world is telling you to move on. solidarity wherever you are & i hope you are able to rest

[compassionmattersmost]

Introducing the ME/CFS Wellness Companion (A Work in Progress)

For those living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, or any energy-limiting illness, daily life can feel like an obstacle course without a map. Simple tasks become monumental. Rest becomes survival. And advice from the outside world often misses the mark entirely. In response to this, I’ve been quietly building something—a digital companion rooted not…

[donjuaninhell]

God I hate these brain reprogramming rubes. They're always such condescending pricks, and they should be rightfully told to fuck off and die. For those unfamiliar with the "Gupta Program" here's a quick rundown:

The Gupta Program is a brain retraining, mindfulness, and holistic health program accessible via website and a mobile app marketed to people with ME/CFS, Fibromyalgia, and Multiple Chemical Sensitivities (MCS). It contains 15 video-based modules.

The program includes breathing exercises, meditations, mindset insights, light yoga and stretching, somatic experiencing exercises, holistic health advice, laughter workshops, and brain retraining exercises including their seven-step brain retraining technique. The Gupta Program also provides shorter options for brain retraining.

So it's bullshit right? What about the evidence?

There is no scientific evidence to support the Gupta Program claims that chronic diseases including ME/CFS and Fibromyalgia are caused by problematic or dysfunctional patterns or activity in the amygdala and insula parts of the brain.[7]

Oh, so there is none. What about its creator? What are his qualifications?

Ashok Gupta does not have any medical, scientific, or psychological qualifications – he has an Economics degree from Cambridge University. What are the ethics of charging for an expensive program where the therapist has no training or qualifications and there is no regulatory body to monitor or protect patients? So there is a combination of no empirical evidence and no relevant qualifications.

So it's complete bullshit. These people are essentially in a '70s style new age cult. As for anyone who claims to have improved? Well they probably didn't have ME to begin with. You can have very ME like symptoms with post-viral fatigue, and that can go on for quite a while, months to a year, but many people improve and recover, 90% of "ME" patients who claim to have completely recovered are in that category, as for the other 10%? Check back in with them in five to seven years, I guarantee they will have had a relapse that brought them right back to where they were before.

Fuck these shithead grifters.

[3liza]

A huge chunk of funding to study a chronic illness like long Covid is rare, so any clinical trials that the NIH chooses to run are crucial choices — and some doctors and advocacy groups have voiced serious concerns about the selection of one clinical trial in particular.

That trial would test exercise as a potential long Covid treatment, despite years of research suggesting that exercise could harm patients and set back further study.

Many people with long Covid have similar symptoms to people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a debilitating condition that often follows viral infection. The defining feature of ME/CFS is intense fatigue and worsening of other health issues after physical or mental activity. This symptom, known as post-exertional malaise, often occurs with a lag, which can make it tough for doctors to diagnose — and even for patients to recognize themselves.

[jenroses]

I've probably had this since I was 3 months old and certainly since age 4, with a creeping, gradual loss of function exacerbated by repeat viral insults and constant pushing to exercise beyond my tolerance.

Like, bring forced to go hiking and ending up throwing up on the top of a mountain and having to be carried down.

I was a dancer but it made me so tired. I was on swim team but would get progressively sicker through the season. Then the mast cell issues and autoimmune issues and and and and one day my ankle stopped ankling and I fell and I got the flu and I've never been the same since.

I had roseola at 3 months. Influenza almost every year for decades. Chicken pox. Mono. H1N1. By the time COVID got here, it barely made an impression because I was already where many people with long covid end up long before I ever caught it. It made the dysautonomia worse. But it took long covid becoming a thing for me to even figure out the right questions to ask my doctors, both of whom instantly were like, "oh, yeah, you definitely have me/cfs."

If I'd understood better about post exertional malaise sooner, I would be better off. I figured out that exercise was A Problem about 10 years before I figured out that the big picture was me/cfs but if I'd known another 15 years before that I'd probably be less severe than I am right now.

today is myalgic encephalomyelitis awareness day if you want to read a little about it. this date was chosen bc it’s florence nightingale’s birthday and she was bedridden for a long period by what is thought to have been ME.

ME was originally understood as a post-viral condition with features similar to MS & polio which generally improved after a few months of rest, but in the late 20th century, figures with vested interests began to claim that ME was a psychosomatic fatigue-based syndrome and that the best treatments were cognitive therapy, graded exercise, and ‘believing’ you will get better, despite this approach causing many patients to decline. under this model, patients are blamed for not getting better and are told that if they’re still unwell, it’s only because they didn’t believe enough or exercise enough. children are told this, patients are told this when they’re bedbound, unable to speak, unable to swallow, tube fed, etc.

gradually the guidelines are being changed to reflect the fact that exercise beyond one’s individual limits causes profound damage to ME patients, but it’s a slow process and the decades of (ongoing!) harm are unforgivable. the care ME patients receive is of such a wilfully poor standard that ive foregone the ER in the past because i would rather die than go there again and be treated as less than human. bear in mind this is under free nationalised healthcare. i skipped free healthcare because that’s how bad it is. ME patients frequently slip through the cracks—after becoming severely disabled from harmful medical advice or forced treatment, many patients are too fearful to ever see a doctor again. it’s pretty common to hear of a patient who has been bedbound for over a decade and hasn’t seen a doctor since their first year of illness. home visits are often denied and hospitals often refuse to accommodate our basic needs (e.g. a dim environment, since light can cause long-term symptom crashes).

the diagnosis of ME has been stigmatised, minimised, and watered down, and patients face neglect and iatrogenic harm on such a scale that at least half the ME patients i encounter have been made permanently and PREVENTABLY worse by inappropriate treatment early in their illness, like i was as a kid. most patients are women, especially the patients who become severe or die; misogyny is a factor, and frequently the patients who face significant medical harm are children or young people who are trusting and can’t stand up for themselves. being traumatised on a systemic scale by the medical establishment also means that these people do not report back to doctors afterwards so the harm goes unreported much of the time. ME charities try their best to document these cases.

25% of patients are severely affected like me. basically, the body struggles to maintain normal homeostasis so any activity can cause symptom worsening (aka post exertional neuroimmune exhaustion) including the activities of daily living like brushing your teeth, speaking, digesting food, being exposed to minor sensory stimuli like light and ambient noise etc.

various links if you want to take a look:

caring for the patient with severe ME

life threatening malnutrition in severe ME

who cares for ME?

25% ME group

severe ME in children

the death, starvation, and mistreatment of maeve boothby o’niell

three cases of ME

about severe ME

why patients with ME are housebound or bedbound

graded exercise does not restore ability to work

patients remain severely disabled after specialist cognitive behavioural therapy

(note: ‘chronic fatigue syndrome’ is an alternative name for ME, but i don’t use it due to the large-scale harm and damage done under that name)

[thebibliosphere]

Do you have any tips for surviving covid and avoiding any long term symptoms? I had CFS for two years and I’d just mostly recovered (somehow, I got really lucky) before I got covid, and now I’m scared it’ll flare up again :(

Hello friend, I'm sorry to hear you're dealing with this.

I'm obviously not a doctor, but as a chronically ill person, covid definitely set me back in my own recovery when I got it. This is not to say it will for you, but if you already have CFS, it's best to act with caution. I thought I was "fine" post covid infection in 2020, and then 3 months later, all my chronic illnesses flared at once, and I'm still dealing with some of the fallout -- likely because I didn't take adequate time to rest post-infection.

I basically spent the whole of 2021 working on my mental and physical health and am just now getting back to a stable baseline with my POTS and exercise intolerance.

So my advice would be to treat yourself like you are already dealing with a CFS flare. Prioritize being gentle with yourself. Avoid exercising beyond your limits, and make sure you're getting enough to eat and sleep.

Also, make sure you're on top of any possible deficiencies. I seem to recall covid hits people harder if they've got vitamin D deficiencies, which makes sense if you know vitamin D helps regulate mast cells, which in turn regulate how your immune system responds to infections and recovery. (You do not need to have MCAS for low Vit D to affect your mast cells. It's been shown to affect things like asthma and other allergic diseases as well.)

Guard your energy levels as best you can, and if you're able to, take extra precautions against getting infected again. If I have to go anywhere, I only ever wear n95 masks with an additional paper surgical mask over the top to get more wear out of the n95.

I buy mine from here, in case that helps. You can also get "reusable" ones from places like Cambridge Masks, which can be hand-washed.

Also, make sure you stay up to date with any available vaccines. I know the vaccines may cause mini-flares (they do for me), but it's better than the full-blown flares that covid itself can cause.

Overall just rest, rest, rest. Obviously, talk to your doctor too if you find yourself with any new or worrying symptoms, just be wary of any recommendations for exercise.

Doctors do so much harm when they prescribe exercise too soon for post-viral syndromes, and while the initial hit of endorphins might feel good, the long-term damage isn't worth it. Trust your body; after living with CFS, you know it better than anyone else.

Best of luck and take care. I hope things go smoothly for you.

[jesusonafrickinboat]

As someone who has post-viral disabilities/conditions, it absolutely INFURIATES me that, despite a mass rise in post-viral disabilities/conditions (aka long-covid), IT’S STILL NOT BEING RESEARCHED.

I had a virus in May 2016 (end of 8th grade), the symptoms of which (plus more as time went on) never went away. I was diagnosed with celiac disease in 2017, followed by POTS, fibromyalgia, CFS/ME, chronic pain, and more - none of which have a cure. (There are also several conditions that I’ve researched and am almost certain I have as a result of that virus over half a decade ago, but I’m still waiting to get appointments with those specialists.) Since being diagnosed, I have done various treatments/medications, had many appointments with specialists & physical therapists, and have done basically all I can to get better.

Now it’s 2022. It’s been 6 years since the virus and 5 years since the first diagnosis. Can I do more than I could in 2017? Absolutely! I don’t want to say that it will never get better, because it does - just slowly (and at a different pace for everyone). But I’m still NOWHERE near where I was before 2016, certainly not even close to what I might have been able to do now if the virus hadn’t happened. I had to switch to homeschool (away from my friends, though better for my physical and mental health) for 10th-12th grade. Last summer, I rode a bike for the first time since 2016, and I was still in pain afterwards. I’m finally at a place where I can start doing the things I used to be able to do or have missed out on (ex: making my own lunch, learning to drive, going to college), but it’s a very delicate balance. I’m at a place where some of these things are finally in sight (I won’t say in reach yet), and it’s frustrating to desperately want to do them and know I’m so close to being able to, but I still have to be really careful.

Because of my constellation of conditions, it has been incredibly difficult to improve my health. For example: one of the best ways to treat POTS is by exercising, but exercising also unfortunately triggers CFS/ME flare ups (due to post-exertional malaise), which in turn triggers chronic pain, etc. The worst part is that it’s nearly impossible to tell when you’ve overdone it in the moment, which means that after doing more rigorous exercise, I have to make sure I don’t schedule anything for the next 2-3 days in case of a flare up. I know I’m not the only one with complicated, contradictory, incredibly difficult co-morbidities, which is one reason why it takes so long to even start healing post-virus.

I’m upset that there are SO MANY people with long-covid that are receiving the same treatment myself and others have received in terms of our post-viral illnesses. I was hopeful that, even though the last thing I wanted was more people having to go through what I’ve been going through for 6 years, this rise in post-viral cases would have pushed more research into why it happens and how to cure (or at least better treat) the most common disabilities/conditions that it results in. 

Instead, like other post-viral illnesses, we’ve continued to see small, underfunded groups research the resulting individual conditions (CFS/ME, POTS, etc) without the funding to come together to research the co-morbidities as a whole, while the majority of the population (including medical professionals, news sources, the general population, etc) at best completely ignore and at worst utterly deny the existence of long-covid.

And I’m so tired.

[indelibleevidence]

Facebook reminded me that six years ago, I gave up the career I loved to focus on my declining health. My ME/CFS became symptomatic in 2008, led to me being 'made redundant' from one job and fired from another for taking too much sick leave...then I was diagnosed in 2013.

By then, I'd been freelance editing and writing erotica for two years, working from home. I believed that at least my illness had at least forced me to look into ways to do something I actually cared about, but it was getting harder to focus.

First I dropped the editing gig, because it required more concentration than I had (brain fog is a bitch). Then I had to drop the writing, because a big part of being an author was marketing, so it was like two jobs in one, and I was sleeping 18 hours a day sometimes. RIP, Amy Valenti (that's my author pseudonym, not my real name, though my real name IS Amy). I had to take most of my books off sale to be eligible for disability benefits.

It's been a decade since I was diagnosed, and they still don't know how to treat ME/CFS. They don't even have a definitive way of diagnosing it - they just test for other things, and if you don't have those, you must have ME. Long COVID has at least shone a bit of a spotlight on us (there is quite a bit of overlap, since it seems both conditions are post-viral), but I've read stories about people who were diagnosed in the 1980s, and still are just as sick today. Most of the medical profession thought it was a psychological fear of exercise for decades, despite mounting evidence to the contrary, and that prejudice still lingers.

May is ME/CFS awareness month. I'm too tired today to actually mention much about the disease itself, but maybe later.

[normal-with-adhd-is-a-joke]

I have long COVID and had a so-called long COVID specialist complain about someone "so young" being in a wheelchair and insist that I see a physiatrist to get me on an exercise regime. She marked me down as resistant to treatment and tried to change my anxiety medication against my will when I told her that I had all the symptoms of post-viral ME/CFS and that exercise would probably make me bedbound. Apparently I was "afraid to get better", as if I hadn't come to her of my own free will asking her to treat me. I had also tried exercise once already (aquatherapy) and permanently decreased the amount of time I can stand and sit up for.

it's so upsetting that the entire body of research on ME is being almost entirely ignored when study after study of long covid patients is consistently showing that not only do 50% of long covid patients meet the diagnostic criteria for ME (which is KNOWN to be post viral & caused by multiple kinds of viruses!!)

but that the mechanisms causing those symptoms are THE SAME. Same autoimmune dysfunction, same reduced anaerobic threshold, same mitochondrial damage!!!

things that are so specific to M.E.!!

and yet people are still trying to say long covid patients should exercise their way to not having M.E. symptoms despite DECADES of scientific evidence showing that it makes M.E. patients sicker and causes PERMANENT DAMAGE to routinely overexert!!

[cfdfitness]

“Okay, but what are you actually doing for fitness?”

As a disabled person who is not a fitness instructor, it’s hard for me to actually blog about tips on exercising - a lot of it just isn’t designed for me. Another thing is that unless the person describing the routine to me has also dealt with CFS, I need to take their advice with a grain of salt and also wildly dial down the intensity - intense workouts are not safe for people with CFS/ME/SEID, and this means for people with Long COVID or Long Lyme or anything like that too. Exertion of that kind can cause crashes that last several days, weeks, or months at worst. If you have any form of chronic illness, I heavily recommend that you take whatever workout you’re doing and dial down the intensity a lot - only doing a couple of reps at a time, etc. Your workout should feel like it’s too easy. I’m serious.

There is, as far as I can tell, only really one person in the topmost Youtube search results potentially worth listening to in regards to CFS/ME and fitness - a lot of the rest of it seemed like it was overly spiritualistic or based on unclear science. (There were even claims that psychology or retraining your brain could somehow fix CFS... Youtube, do better! It’s a physical post-viral condition!!!)

Raelan Agle is self-described as someone who has recovered from CFS and is the primary person I could find making any videos in regards to exercise with CFS/ME/SEID. She also just talks about CFS and her personal journey with recovering from/minimizing symptoms from it in general. I’m personally going to be looking into her videos more in the future and seeing what I can take from them for my own life. However, a word of caution - she seems to have bought into things like juice cleansing/clean eating, and while if that helps her, that’s wonderful, I worry about the safety of recommending practices like that to others. That type of “wellness” industry thing contributes to a lot of bad, like eating disorders and even cults. So be careful.

I’m a wheelchair user, so wheelchair exercise or seated exercise (I do have control of my legs, I can technically ambulate on my tip toes) is critical to me. Luckily that’s not too hard to find. Much easier than good tangible advice for people with postviral illness, anyway. A little bit of searching on Youtube before I started this blog, and I found Paul Eugene’s channel.

He does a number of videos designed for seated exercise, low impact exercise, and other forms of exercise for older or disabled people in a variety of settings for a variety of purposes. He’s not a wheelchair user himself, and he does advertise some of the exercise as ‘fat burning’, but the commitment to accessible workout information is appreciated and very helpful. Some of the videos are set to gospel music but most aren’t.

Another channel is Adapt To Perform, which is actually run by a wheelchair user! He does a number of live streams, reels, and other things like that. Not really my preferred format, but it seems incredibly helpful to anyone in a wheelchair. In any case, if you have a disability, an injury, or a postviral illness like I do, be sure to be very careful and know your own limits before attempting any kind of workout or exercise!

[myalgicencephalomyelitiscfstom]

From: "The National Institute for Care Excellence (NICE), which outlines best practice for different conditions, used to recommend GET for ME/CFS patients but guidance, after a long review period, was updated in November 2021 to exclude GET. The guidance also notes that “some people with ME/CFS have found that [exercise programmes] can make their symptoms worse”.

According to Asad Khan, a pulmonary consultant living with Long COVID himself, “post-exertional malaise is now very well documented in Long COVID… and we have to learn from the history of other post-viral illnesses”."