Long Covid- Resources, And Common Co-morbid Or Overlapping Conditions

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?

Mayo Clinic Proceedings

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowled

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

STAT

Why did it take the CDC so long to reverse course on debunked treatments for chronic fatigue syndrome?

After years of pleas from patients and experts, the CDC quietly dropped from its website two debunked recommendations for treating chronic f

Someone has even written what amounts to a How-To pamphlet for helping medical professionals begin to care for people with ME/CFS:

PubMed Central (PMC)

Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

This paper introduces the primary care physician to the unique and challenging aspects of initially diagnosing and managing a complex condit

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.

disabled people can absolutely be ableist. not just to themselves (i.e. "internalised ableism") but to other disabled people.

ableism is the default position in an ableist society and no one is immune from it. you just have to keep trying to learn and think and de-centre and open yourself to others' experiences. it's a continual process for us all.

If someone says to you, "I don't see your disability!" The only proper response is, "Well I don't see your ignorance but it's clearly there!"

At this point, the patches of hair that are still thick are the areas that look like they shouldn’t be on my head

Wishing all undiagnosed/partially diagnosed people a very doctors listening to you and providing you with more testing than a blood draw and even possibly providing treatment 2024

I don't understand why pedestrians are so eager to replace wheelchairs in fantasy worlds. no, in Pokemon wheelchair users wouldn't be riding Pokemon everywhere they would be using wheelchairs. wheelchairs are just fine. they don't need magical fantasy replacements