#Myalgic Encephalomyelitis

[marlovestrees]

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/

[spoonfulofhannah]

Disabled and chronically ill people are allowed to enjoy things and do things they like (if they’re able) while still being sick and disabled. Yes, even if they aren’t employed. Hope this helps.

[myalgicencephalomyelitiscfstom]

The impact of ME/CFS versus funding

Illnesses listed on the bottom if you can't see it:

Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS.

From Jeffrey Tran's video (warning: is a bit noisy)

Whitney Dafoe on X:  I made this graph with the help of a ME/CFS patient graphic designer a couple years ago to send in a letter to Biden. I’m glad to see it making the rounds!  Here’s a link to a printable version you can download to show family/friends/drs

[chronicallyuniconic]

It's odd getting diagnosed. I've waited YEARS for the 'right' one to be given. I lost count how many times i cried & begged for help, medical care, further testing. The isolation of illness, quiet suffering. Then, one day its as if im going to get answers, finally. Within all the fuckery they go "you have ___" the relief of that wasn't really any weight off, I felt nothing. "Yeah that makes sense" i remember the neuro staring at me waiting for some sort of reaction but I didn't have any.

And then it came. It went from a diagnosis to "if you get worse, get in touch" but what i heard was "we don't care until you are worse, we will do little intervention to stop you from getting worse, but please, dont stop living your life"

They really did say 'go about life as normal' completely ignorant of my normal, despite the long list of symptoms I've described, written notes that are in my file. But *hooray,* I'm back waiting again!

So now? I wait, trying to go about life as normal, wondering how I will even notice getting worse, cos no-one ever believed me before, why would they now?

forever the pessimist, especially when it comes to healthcare

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[i-the-spoonie]

[mindblowingscience]

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[ieatratsforbreakfast]

"Stop looking at your phone"

No. I need a constant distraction from the pain I am in. I promise you, you'd rather see me play solitaire on my phone for 45 mins than deal with me while being fully aware of my body. I PROMISE YOU I am listening better if i'm fiddling on my phone than if I'm sitting and being aware of my agony.

Also to everyone who has ever called me an iPad kid, die in a hole.

[tiredsn0w]

This can't just be me, right?

[drifting-bones]

they should invent walking that doesn't make you feel like you're going to keel over and die

[spoonfulofhannah]

I wish all chronically ill and disabled people a very “doctors listening to you” November

[myalgicencephalomyelitiscfstom]

Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

[chronically-persistent]

You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

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

People are very critical about long COVID/ME/CFS patients not being on diets and it's probably the most fucking annoying ableist thing we have to deal with on a regular basis that people think is totally fine or even helpful.

Preparing homemade food takes a ton of energy. Preparing homemade food to fit a diet takes even more energy and is expensive. Carnivore is one of the most common recommendations and, aside from dieticians practically screaming about how dangerous it is due to the complete lack of vitamins, meat is expensive. Even high protein, low carb diets that aren't as strict still require you to spend quite a bit on protein. Diets like anti-inflammatory, mediterranean, low fodmap, and others that restrict certain types of food are often prohibitively complicated, and many times advice is conflicted on whether things are ok to eat and in what amount. The vast majority of restrictive diets don't come with easy-to-prepare meals unless you have a ton of money to drop on expensive meal kits.

And most importantly, for some of us food is all we have left. Being closed inside for 90% of your life is incredibly boring in a way that's hard to describe. I spend 8-10 hours a day in the same place doing the same things because they're all I can do. Eating something interesting is pretty much the only way I get to add enrichment to my life. Diet is not a cure for us, it only provides mild symptom relief if any. It's just not worth giving up the small sliver of joy that is an "unhealthy" meal when it's not going to actually result in us regaining the ability to do other things that bring us joy.

❌If you give dieting advice on this post I will block you. You're annoying and you're missing the point.❌