chronicillnessmemes

[chronicillnessmemes]

Long COVID and ME/CFS folks, and disability allies:

I have something you can do in 15 minutes that will be very helpful to those of us with these disabilities!

The Canadian working group putting together recommendations for Post-COVID Condition (PCC) have released some bad recommendations regarding exercise as a treatment for Long COVID and cognitive behavioural therapy (CBT) to treat Post-Exertional Malaise (PEM).

The UK just recently managed to get these recommendations out of the NICE guidelines for ME/CFS, and we should try to prevent them from getting embedded in the Canadian ones for Long COVID.

They have a survey out until Nov. 27 at 11:45pm EST asking for public input. If you can manage it, please fill out the survey explaining why these are both bad recommendations. The survey is open to people internationally, and anyone interested in the topic. Please mark #2 and #8 as "Major Concerns" and provide a sentence or two explaining why (in your own words).

Draft Recommendation #2 - recommends exercise as a treatment for Long COVID, and only briefly mentions the existance of post-exertional malaise (PEM). Given how many people with long COVID meet the diagnostic criteria for ME/CFS, this is entirely backwards. PEM should be evaluated first and regularly thereafter and exercise should only be suggested once everyone is confident that PEM isn't present.

Draft Recommendation #8 - Recommends CBT as a treatment for PEM. This is recommending a psychological treatment for a physical issue, which is inappropriate. It also contributes to the long history of treating the fatigue in ME/CFS as self-inflicted. And is an activity that can also worsen or cause PEM.

The recommendations and links to their evidence charts are inside the survey itself, or you can open the PDF link on the first page and write your answers before copying them into the survey.

Survey:

https://www.research.net/r/CAN-PCCRecommendationCommentPublic

Here's a blog post explaining one person's responses to the survey:

https://thesciencebit.net/2024/11/21/my-submission-on-the-new-canadian-draft-recommendations-for-long-covid/

And here's one on the history of these "treatments" for ME/CFS and why they're based on bad science.

https://mecfsresearchreview.me/2021/01/12/the-expert-testimony-to-nice-that-took-apart-the-case-for-cbt-and-graded-exercise-for-me-cfs/

[chronicillnessmemes]

Stop Making Psychosis A Villainous Trait Challenge

[chronicillnessmemes]

The idea of patients "abusing the medical system" makes no sense to me. Like what do you mean. Genuinely. Its ridiculous. Patients are not "abusing" a system [that often keeps them from accessing the help they need.] Are they stressing it? Sure, sometimes. Are they fighting it? Also sure sometimes. But abusing it? I dunno, was David abusing Goliath?

Jesus fuck, I hate that ridiculous ass phrase.

[chronicillnessmemes]

[chronicillnessmemes]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[chronicillnessmemes]

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.

[chronicillnessmemes]

and is your shame helpful? is it inspiring goodness and change? or is it keeping you frozen in time unable to move on and be everything you have expanded to be?

[chronicillnessmemes]

I talk to many people who say things like "oh I have trauma but I don't have PTSD", but then when I talk to them a little more I realize that they most likely do, they just can't recognize it as such due to how lacking PTSD awareness is, even beyond the whole "it's not just a veteran's disorder" thing.

The main reason they think they don't have PTSD usually has to do with flashbacks and nightmares, either they have one but not the other or have neither. But here's the thing, those are only two symptoms out of the 23-odd recognized symptoms. Flashbacks and nightmares are two of the five symptoms under Criterion B (Intrusion), which you only need one of for a diagnosis. The other three symptoms are unwanted upsetting memories, emotional distress after being reminded of trauma and physical reactivity after being reminded of trauma (i.e. shaking, sweating, heart racing, feeling sick, nauseous or faint, etc). Therefore you can have both flashbacks and nightmares, one but not the other, or neither and still have PTSD.

In fact, a lot of the reasons people give me for why they don't think they have PTSD are literally a part of the diagnostic criteria.

"Oh, I can barely remember most parts of my trauma anyway." Criterion D (Negative Alterations in Cognition and Mood) includes inability to recall key features of the trauma.

"Oh but I don't get upset about my trauma that often because I avoid thinking of it or being around things that remind me of it most of the time." Criterion C (Avoidance) includes avoiding trauma-related thoughts or feelings and avoiding trauma-related external reminders, and you literally cannot get diagnosed if you don't have at least one of those two symptoms.

"Oh I just have trouble getting to sleep or staying asleep, but I don't have nightmares." Criterion E (Alterations in Arousal and Reactivity) includes difficulting sleeping outside of nightmares.

"But I didn't have many/any trauma symptoms until a long time after the trauma happened." There's literally an entire specification for that.

Really it just shows how despite being one of the most well-known mental illnesses, people really don't know much about PTSD. If you have trauma, I ask you to at least look at the criteria before you decide you don't have PTSD. Hell, even if you don't have trauma, look at the criteria anyway because there are so many symptoms in there that just are not talked about.

PTSD awareness is not just about flashbacks and nightmares.

[chronicillnessmemes]

why does talking to a doctor always feel like ur trying to prove u have something and they're just trying to prove u wrong

[chronicillnessmemes]

sorry about my constant depressive episodes. its just that i have issues and also problems

[chronicillnessmemes]

Local PSA: invisible disability does NOT mean you can live your life like a "normal person" invisible disability meant that if a stranger looks at you in public they wouldn't know what's going on.

Like if a wheelchair user were to decide to run into a corner store to grab a candy bar because they know that their legs can last that long without, the cashier wouldn't know.

Or someone with "mild" scoliosis walking upright through their shoulder leans slightly to the left. Maybe they just have bad posture. The lady in the next isle thinks to herself.

The person with EDS or POTS or whatever sort of condition wearing compression gloves out and about. Perhaps it's a fashion statement?

Or what about the people with intestinal issues? They can look like "normal people" too.

You never know what someone is going through.

You never know what they might need to survive or if they're on the edge of a flare up or even if they are currently going through one just by one look.

I think both disabled and non disabled need to realize this. You're not "no longer disabled" because you can "live without" disability aids. They're there to help you. To make your life easier. If living without a cane is going to make it more likely you'll fall over and hurt yourself, use the cane.

If you need to sit down to do dishes or cut vegetables because you need to save your legs for taking out the trash, sit down.

If you need a shower chair because you don't know if you'll pass out, use the shower chair.

People are going to judge you regardless for multiple reasons out of your control.

I'd rather they judge you while you're being safe.

You don't need to struggle to be "normal."

You can just be you.

However that looks for you.

Use your disability aids.

[chronicillnessmemes]

Disability benefits shouldn’t be tied to the income of a disabled person’s partner/spouse/parent.

Do you hear me?

DISABILITY BENEFITS SHOULDN’T BE TIED TO THE INCOME OF A DISABLED PERSON’S PARTNER/SPOUSE/PARENT.

This is the straight forward way to deprive a disabled person of their financial freedom and independence and trap them into possible abusive relationships.

[chronicillnessmemes]

disabled people are worth whatever cost or resources is needed to keep them alive. disabled people are worth it even if they don't live long. they're worth it even if they will need extra support and resources for every day of their life. they're worth it even if they spend all they life indoors. none of it is wasted. none of it is in vain. time, effort, money, resources spent on a life are not wasted. these things have served their purpose. the joy of someone's existence is not undermined by not lasting forever. there's no meaningful point, some threshold where you can say "okay this is enough. after that it's not worth it." it's always worth it.

[chronicillnessmemes]

i NEED you to remember this: you are allowed to be angry at your doctors. you are allowed to be furious. you are allowed to be mad at your nurses and technicians and neurologists and psychiatrists and medical assistants. they are not god. they are human beings and they work in a system that wears them raw, and that is unfair, but it isn't an excuse to treat you badly. i'm not necessarily saying you should throw a brick through the window of their car, but you can, should, must be angry with them for ignoring you, demeaning you, dehumanizing you, dismissing you, acting like you're lying, talking only about your weight, failing to acknowledge you past your symptoms, etc etc etc. you are an equal to your doctor. you are a human being and so are they. do not treat them as beyond reproach. you are allowed to be angry at your doctors.

[chronicillnessmemes]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[chronicillnessmemes]

I hate how strongly able bodied people feel entitled to my personal medical information because I’m visibly disabled.

I was once interviewed over the phone by a journalist about my job and the organisation I work for and after the interview when I sent a picture of myself for the article I got a phone call back asking what my condition was because the journalist felt my picture “wouldn’t make sense” if I didn’t publicly disclose my medical history. The journalist was completely baffled when I said I wouldn’t share that information and it wasn’t necessary in the article he was writing.

Some disabled people are happy talking to anyone about their condition(s)/ injuries, and all the power to them. But it shouldn’t be socially compulsory to disclose those things every time I exist in front of other people just because I’m visibly disabled.

[chronicillnessmemes]

something i think a lot of able bodied people dont understand is that being chronically ill affects your emotions. constantly being exhausted and feeling bad is going to make you sad or depressed or angry or jealous. constantly being in pain is going to affect your mental health. never feeling "good" is obviously going to affect the way you act.