(((Digimon Is Forever)))

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

Hi, before you contemplate saying, “social distancing/lockdown/isolation/quarantine is a privilege,” remember that disabled people still exist.

I understand the sentiment, that people who were working and were struggling financially have to make a choice, and some of them are working essential (often underpaid) jobs in a time of crisis. I get the frustration there. I see that there’s a discussion that needs to be had...

But I’ve been socially isolated and pretty much homebound with minimal ability to leave for over a year because of an ongoing, undiagnosed chronic illness and an inability to drive in a place with next to no public transport. I’m self-isolating, and doing so by changing pretty much none of my day-to-day life. That has not been because of privilege, and my continued social isolation is still not because of privilege.

Vent your frustrations. Have those conversations that need to be had. But be careful with what you’re saying. There are disabled people who have had to (and will continue to have to after the pandemic has died down) live in very isolated situations. Disabled people are not “privileged for being able to self-isolate,” and you do absolutely hurt us with the blanket statements paining anyone who can “afford to self-isolate” as privileged.

Some people want to ignore your chronic pain after awhile. They want to treat it like an acute injury, old news. But it’s not. It’s your life. So, don’t feel bad asserting yourself when someone tries to ignore the pain you feel. It took me many of years to understand this, but someone erasing your disability is not someone being kind. Or someone complimenting you. At best they are ignorant, at worst they’re a dick. Either way, correct them. Make them see you, see your pain. Even if your disability is invisible to most people, don’t let them take your voice. No, you aren’t lazy because you haven’t been able to leave the house. No, getting a job doesn’t have to be your biggest priority at the moment. You are in this much pain and you are still kind, resilient, and amazing. I think able-bodied people can stand to acknowledge you without ignoring a huge part of your life.

If you’re dealing with chronic illness like me, I just want to remind you that you aren’t failing because you can’t “positive” think your symptoms away. You aren’t failing if you can’t use “mind over matter”.

You can’t will your body to work the way you want it to, and that really sucks, but you aren’t a failure for it.

Don’t use disabilities as insults. Don’t use disabilities as insults. Don’t use disabilities as insults. Don’t use disabilities as insults.

friendly reminder that if you have a hard time eating due to nausea or other chronic illness ickies, just eat what you can eat. even if it’s not particularly “healthy,” getting calories in your body to help it function is more important.

this applies to fat people, folks with eating disorders, and autistic people who can’t eat certain foods!!!!!!!! we need to eat. it’s okay to eat “unhealthy” foods, sugary foods, processed foods. especially if it’s the only thing you can eat.

As chronically ill people, we spend a lot of time asking ourselves, “What am I doing wrong to feel this badly?” 

The answer is nothing. You are doing nothing wrong. You are doing the best you possibly can to make yourself feel better. You don’t deserve the guilt you so often assign yourself.

I had a friend tell me once that they envy me having a terminal condition because I don’t have to figure out my future.

And like. I get depression and fear, and adulting is fucking hard, and sometimes when I’m really sad I think this too.

But please don’t tell your spoonie friends you envy them being sick, and not going to school, and “sitting at home watching Netflix whole days everyday”. We’re ILL. We’re in a lot of pain. This sitting in bed whole days is fun when it’s a cool activity to do, but it stops being fun when it’s a necessity everyday and you want to do things but you CANT.

And the thing is, we’re having to figure out our future too. It’s just for you figure is college and job and happy relationships. For us it’s our condition getting worse, our parents aging and so us having to find caretakers for us when they’re gone, and ultimately a lot of sadness and then dying.

We’re both scared and I’m not playing pain Olympics here. I’m just here to tell you that sometimes it’s good to shut up.

if you developed a mental illness because of your physical illness please know you aren’t the only one, you aren’t weak, you have been dealing with exceptionally terrible things and the way that ends up affecting you isn’t your fault

This couldn’t be more important. Dealing with a chronic illness messes with you in so many ways (I’ve written about one such way before), and it’s pretty rare to come out of it unscathed in some way. Friends, please be sure to tend to your mental health as much as you do your physical health. 

I didn’t know until recently that “Mood Disorder Due to a General Medical Condition” is a thing.  It’s a real diagnosis.  Having a chronic illness can truly affect mental health in various ways.  If you feel like this is happening to you, your concerns are valid and you have every right to seek treatment and care for it.

Woah thank you for sharing - I’d never heard that mentioned before. Another lesser known reaction is c-ptsd (complex trauma). It can be developed from prolonged exposure to a situation from which a person has little or no hope of escape. Although its rarely written about, some chronic illnesses can really fit this criteria. People deserve to know these things can develop due to physical illness - if I’d have known I could have been diagnosed much sooner.

PSA: if the punchline to your joke is someone else’s chronic illnesses, it’s probably not funny.

A friend (I use the term loosely. More of a former acquaintance, really.), just sent me a message on FB. It was so long I had to copy-paste it into word and it took up 12 pages.  

She got COVID-19 at the very start of the outbreak in the UK, and she’s been ill for months in the aftermath. Yesterday, her doctor asked her if she’s ever heard of Myalgic Encephalomyelitis, or as it’s more commonly known, “Chronic Fatigue Syndrome.” (Or “yuppie flu” to the vitriolic who also suffer from an unfortunate case of “head-in-ass” syndrome.) 

They told her they’re seeing a lot of patients get sick with ME/CFS symptoms in the wake of COVID-19. They talked a lot to her about post-viral syndrome and how it might still go away, or how it might be permanent. They told her they just plain don’t have the answers. They gave her leaflets for cognitive behavioral therapy, for an illness that is increasingly being discovered has many, many physical causes (cranial instability and viral overload are just two examples) but has predominantly been treated with talky-therapy and general sweet fuck all else for years.

So she messaged me, the person she used to roll her eyes at when I said I was too sick to get out of bed some days. She apologized, at length, for all the times she said I was lazy, for all the times she rolled her eyes, and all the times she talked about me behind my back. She wrote, saying she’d heard from other friends that I’d gotten better recently, and she hopes I’m still doing better. And then she said, “I suppose this is what I get for being unkind,” and I had to take a moment to just breathe because however awful a friend she might have been to me in the past, chronic illnesses are not a curse.

They are not karma for bad things. They are not some sort of divine justice for not saying your prayers at night or not being a good person. There is no morality involved in health. There’s genetics, chance, environmental risk, and sometimes, just outright bad luck. It is not a judgment from on high. You/I/We did not do something wrong either in this life or in a past one to “deserve” anything like this. 

Sickness happens. That is an unfortunate truth of being alive.

And the sooner we stop equating health with morality and strength of character, the better. I’m not alive because I’m a strong-willed, good person, I’m alive because I managed to hang on long enough to get (one of) my illness treated. That’s it. That’s the truth. Strength of moral character means sweet fuck all when the medical world has decided you don’t matter. It just leaves for a pretty epitaph. 

if it makes you unable to get out of bed: you’re not faking it

if it makes you unable to think straight: you’re not faking it

if it makes you unable to brush your hair in the morning: you’re not faking it

even if you’re still able to work and smile during the day but unable to sleep or move later that day because of it: you’re not faking it

if it effects you in any way: you are not faking it

THIS IS REAL, don’t second guess yourself because others do

Some illnesses can't be cured. Some struggles are lifelong. Not every battle you face can be won. Acknowledging this isn't negative or anti-recovery, it's a fact - and it's a fact you need to internalize in order to stop blaming people for circumstances they can't control.

There is no age limit on chronic pain. Just because you do not like to think about children being in pain does not mean they do not exist. They deserve to be believed and they deserve access to pain management.

Which includes mobility aids. No one is too young to use a mobility aid. What do you gain by stating otherwise?

You are ignoring the lived experience of countless disabled people of all ages whose lives have improved by utilizing aids. You’re making the young people who resist using their mobility aids (because of negative stigma) feel even more strange and other.

In all my years of using mobility aids and being told that I’m “too young to be using that!” by strangers, it has never once made me feel good.

And I shouldn’t have to bare my entire medical history in a walmart grocery aisle to make them understand that.

I’ll say one thing for this whole “everyone else is now living in quarantine” experience, it’s making all my friends realize just how incredibly lonely and isolating my chronic health issues are and how shitty some of them have been as friends for assuming the permanent isolation I’ve been living in for the last 5 years isn’t all that hard.

After all, I’m home right? I’m in bed most days. Sounds great. Ideal even.

Until you’ve got no other option.

“You should have more sympathy then, if you know what it’s like” was said to me, by one friend, who isn’t really much of a friend anymore, to which my reply was, “Why? You’ve never shown me any.”

And I know that shit’s petty. But if you’re going to burn bridges you might as well do it via orbital strike.