Me/cfs - Tumblr Posts
that feel when you get so tired that you can’t process any sort of TV or books or even social media but you can’t rest or nap either so you just AAAAAAAAA
I genuinely forgot that blathers the owl from animal crossing is always sleepy because he’s an OWL and owls are nocturnal so I really saw him and went “damn this guy has chronic fatigue syndrome like me!” 😭
no but can we talk about tumblr ios banning spoonie? That is so genuinely ableist because “spoonie” is a term that disabled and chronically ill people use to refer to themselves. Why is apple trying to surprise disabled people referring to ourselves. Wha T
The CDC is about to release an inaccurate and harmful report!
Charged with reviewing the latest science on ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) the CDC has failed us again.
Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) are NOT treatments for ME/CFS and can actively cause a great deal of harm. In fact one study found 54-74% of ME/CFS patients report a negative response to GET.
There is an insurmountable quantity of evidence saying that GET and CBT are not treatments or cures for ME/CFS and the original studies supporting these therapies were deeply flawed and biased. But the CDC’s report does not denounce them, stating that they are possible therapies despite overwhelming evidence to the contrary and outcry from the ME/CFS community (patients, advocates, and doctors alike).
Please sign #MEAction’s response to the CDC’s irresponsible report; it’s a throughly researched and well written document and you should read it if you want to understand just how deeply flawed the CDC’s report is.
P.S. This doesn’t just affect American’s. I’m in Australia and reports released by the CDC have an unreasonable amount of sway here. Millions will suffer if this report is allowed to be published. Doctors will mistakenly believe they are doing their best for their patients while doing unimaginable harm. Please sign! They accept signatures from every country, all you need is an email address.
might I recommend a heated mattress pad? They’re great for heating your entire back and also allows you to use the heating pad elsewhere
Not enough heating pad for the ouchie so I’m just rolling around like a rotisserie chicken
Same
“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child
Full Transcript at the link; 3-minute listen.
Quote:
By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.
"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.
The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.
"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."
Long Covid- Resources, and Common Co-morbid or overlapping conditions
Now, I don't have Long Covid.
What I have is Severe ME/CFS, aka Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
But Chronic fatigue as a symptom is common to a lot of conditions., including popping up as a problem for Long Covid sufferers. Some are getting diagnosed with ME or Chronic Fatigue Syndrome as part of their current condition,
but what is ME/CFS anyway?
Do you have it from your Long Covid?
ME/CFS is currently diagnosed by ruling out every other possible cause of the fatigue, as many conditions can cause fatigue on their own. Almost all your lab work will come back as Normal, sometimes with elevated white cell counts that show *something* is wrong but there is no signs of what it could be.
The main diagnostic points of ME/CFS are abnormal levels of fatigue that are not helped by rest or sleep, and something called PEM or Post Exertional Malaise. That's what they call it when your body has a bad reaction to exercise or stressors, even mental ones, by kind of... collapsing. Those of us with it call this crashing. Exertion causing the body to experience leaden exhaustion, mental fog and neurological symptoms like confusion or speech issues, and sometimes even difficulty moving- you just want and need to lie down in a dark room and just rest. It may take days, weeks, or even months to recover from a bad crash depending on how bad.
Here's where to find more info,
as I'd love to help but alas I do not have the energy to help everyone I'd like to help. If I do this as a post people can pass around, I can reach more of you.
There's a lot of helpful stuff on The Mighty, although they've been trying to turn into a social media sort of thing? Look for their articles and essays anyway.
(Now, quick aside, POTS or Orthostatic Hypotension are two other conditions that a lot of people with Long Covid are getting so it's worth looking that up too, especially if you have been having racing heart problems or fainting when you stand up far too often.)
For ME/CFS, the ME Action group is a helpful source of information. They're a nonprofit rallying for a cure and awareness. I can also give you these two links, which I have printed out as a booklet to give to my general Doctor to help them recognize if cases come to them.
What IS ME/CFS and how is it treated so far?
Often Doctors "don't believe in" ME/CFS so it's helpful to hit them with peer reviewed academia.
A lot of Doctors will try to get you to do something called Graded Exercise Therapy. You must refuse to do this. Everything we know so far and a lot of sick or belated people show that GET can permanently damage your remaining function. Here's some proof for your Doctors of why you DO NOT want to push your body harder than feels un-tiring for you now.
Many professionals have pushed for years to get the PACE trial and GET therapy removed from treatment plans as it tends to do far more harm than good:
http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm
Someone has even written what amounts to a How-To pamphlet for helping medical professionals begin to care for people with ME/CFS:
I kinda love it.
As for You? This tumblr user wrote a list of helpful articles for learning to live with a Chronic Condition.
You're dealing with a lot and a lot if it is grief for what you've lost and trying to work out how much is safe for you to do now without overdoing it, AND if you're like many of us, having to deal with toxic positivity and even gaslighting from people around you convinced this can't be happening or that it's not a big deal it's all in your head or that you're just anxious or scared of exercise. -.-. Which is NOT helpful at all and making life even harder.
Look up toxic positivity, and how to set polite but firm boundaries about what your body is safe to do, or can't do today, because you need to let it rest. People can be really unintentionally- or intentionally- PUSHY about trying to get you to do things you know will run you out of energy and I have had to learn to say NO very clearly.
I highly recommend finding a support group for chronic conditions, or a counselor who understand chronic illness and acceptance based therapy for traumatic circumstances.
Even my own counselor tried the "you can do anything you put your mind to!" stuff at first; until I explained to her that this is the one condition you CANNOT "fight" inspirationally. You must learn to balance with it, like walking with a book on top of your head, not fight with it- or you'll hurt yourself. Acceptance has helped me enormously to build a new, usually pretty happy life within my new energy limits. It's been hard, so hard, but life's not over for us! We just need people who will stand with us while we grieve and heal our emotions around this massive change.
I hope this helps kick-start your search for answers, and I hope one day we all have a cure.
Hey if you're struggling with a lot of fatigue and you feel physically worse after activities that feel like exertion, ESPECIALLY if you develop flu like symptoms within one or two days of overdoing it, I am begging you to look at the international consensus criteria for myalgic encephalomyelitis, or ME/CFS.
Like if this is you:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms. 3.Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Please read these criteria and try to figure out if you have M.E.: https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x#t1