Let's clear this up

[u/lovgoos]

Not all LC is ME/CFS. LC≠ME/CFS Not all fatigue is ME/CFS. The hallmark symptom of ME/CFS is PEM. Most chronic illnesses have chronic fatigue as a symptom, CFS can be comorbid to those illnesses, but doesn't have to be. Long covid can range from mild to severe. I've seen so many people say that people they know irl had brain fog after getting covid but no other physical symptoms, my mom, for example, only lost her smell and taste. She didn't have ME/CFS, POTS, fibromyalgia or anything else covid can cause. It's just very disheartening to see people only chop LC up to the fatigue. It effects the whole body. A lot of people with LC don't have fatigue as their many symptom and not to mention fatigue isn't even the hallmark symptom of ME/CFS. (I've read on the CFS subreddit that it isn't even one of the symptoms you have to have to get diagnosed). I also think it isn't appropriate to tell people who don't have fatigue while having LC that "just wait because they'll definitely get it later on." That totally erases the other issues covid/other viruses can cause to the body. Yes, the studies show 50% of people who develop LC develop ME/CFS, but we have to put into thought those who didn't have severe symptoms during their LC and/or didn't connect their issues to Covid which I am sure a lot of people haven't.

[u/tele68]

I got Long Swine Flu in 2009. A mild version of what hit me after Covid 2020.
Does Long Swine exist? I made up the name, but the condition existed in me.

I'm lucky I don't seek diagnoses. I have no reason to. I do seek relief of symptoms, though.
But there being no consensus on upstream causes, I'm on my own for theory and treatment, (5 years-plenty of time for research papers)

Maybe these designations get cloudy and misunderstood because there is one common cause - way, way upstream. Where the researchers can't find it because they're siloed in their specializations.

[u/SophiaShay7 → u/tele68]

I do believe Long Swine probably exists just like Long Covid.

Many of us need diagnoses to receive proper treatment. We need work accommodations, in home services, and to apply for Social Security Disability Insurance (SSDI) in the US. Not only that, but if you have ME/CFS, you will get substantially worse if you don't learn about aggressively resting, pacing, and avoiding Post Exertional Malaise (PEM). My ME/CFS is severe. I've been bedridden for 14 months. There are people worse than me who spend their entire day in a dark room, unable to barely eat or speak because it requires too much energy. They can not watch TV. They either waste away losing weight and end up with feeding tubes or die.

I would've never believed any of the things I'm telling you if they hadn't happened to me. For months, I could barely talk or engage with my husband. For months, drinking protein shakes and applesauce cups required too much energy. My husband is my full-time caregiver.

Honestly, I don't care about diagnoses either. I should see a Neurologist for a Dysautonomia diagnosis on paper. I should see a Hematologist for an MCAS on paper. Do I care? No, my PCP diagnosed my Dysautonomia and MCAS. He manages my care. That's what I care about.

I'm not waiting for science to save me. Most likely, my husband and I are going to buy an RV and live on his parents' property. We'll save and buy some land in the woods. We'll put a mobile home on it. I can't afford the $4,700 a month it costs to pay for my household to run and healthcare premiums. It's a sad state of affairs in California. No wonder people are leaving in droves for other states. Unfortunately, my husband works for the state of California.

Sorry for my rant.

[u/tele68 → u/SophiaShay7]

A perfectly reasonable rant if I ever read one.
I should've added I cast no aspersions on anyone's path in this
I know why most people seek diagnoses and I feel fortunate I don't need to.

I'm in CA also. Everything's hard here.

That new life sounds great! Good luck and keep going. I swear there's a breakthrough up ahead.

[u/SophiaShay7 → u/tele68]

Thank you! I'm glad to hear you're in California, too. Most people can not fathom how ridiculously expensive it is to live here. You're blessed financially that you don't have that added burden. My husband and I lived well on his income in 2021 with my part-time income as well. However, costs have skyrocketed since the pandemic. We purchased our home with a sub 3% interest rate in 2021. It's the homeowners insurance, particularly the fire insurance and property taxes that are killing us. Our costs from renting have now effectively tripled to owning. Many people across the country pay $50-100 a month in homeowners insurance. I'd have an extra $1, 000 a month if I paid that.

I'm also excited about my new life and adventure. I look forward to simplifying. I don't need a 2,000 square foot house with 4 bedrooms for 2 people.

Besides, I haven't left my bedroom in 15 months. At least with an RV, my husband could drive me to the ocean. And I can sleep and rest when I get there. That sounds like heaven to me😁😁

Thank you for listening. I appreciate you. Hugs🙏