Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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The original was posted on /r/cfs by /u/AutoModerator on 2024-08-07 08:00:29+00:00.

Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.

Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!

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(Thanks to u/fuck_fatigue_forever for the catchy title)

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The original was posted on /r/cfs by /u/natashawho12 on 2024-08-07 08:54:58+00:00.

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The original was posted on /r/cfs by /u/dancingpianofairy on 2024-08-07 03:02:04+00:00.

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The original was posted on /r/cfs by /u/brstly on 2024-08-07 00:00:56+00:00.

Original Title: Don't be embarrassed to use mobility aids! My fiancee and I just got back from a trip to Europe where I used a scooter, wheelchairs, and a collapsible stool to make the trip possible. It was a game changer!

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The original was posted on /r/cfs by /u/Hip_III on 2024-08-06 23:54:57+00:00.

Molnupiravir is an antiviral that works for RNA viruses such as coxsackievirus B, echovirus and COVID, which are viruses linked to ME/CFS.

One patient with moderate ME/CFS went into remission after a 5-day course of molnupiravir (which she took for an acute COVID infection). She remained in remission for several weeks after the molnupiravir, but unfortunately her ME/CFS symptoms gradually returned.

However, if 5 days of molnupiravir puts a patient into remission even for a few weeks, it is possible that repeat courses of molnupiravir could be used to maintain remission.

A 5-day course of generic molnupiravir (normally taken at 800 mg twice daily) can cost as little as $50.

There were some concerns with possible carcinogenicity effects from molnupiravir, but a study which gave this antiviral to mice continuously for 6 months observed no carcinogenic effects. And another study which used the Ames test for genotoxicity found no genotoxic effects.

I also know of another ME/CFS patient who took molnupiravir 800 mg twice daily for 5 days, and moved from moderate to mild ME/CFS as a result.

Has anyone else taken molnupiravir, and found benefits for their ME/CFS?

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The original was posted on /r/cfs by /u/Dakota150 on 2024-08-06 22:16:43+00:00.

Mother Jones by Julia Métraux: "Tim Walz Is Leading the Way on Long Covid Funding”

~Excerpts~:

"Under the VP nominee, Minnesota was the first state to fund research on the debilitating condition"

"Under Walz’s leadership, in May of last year, Minnesota became the first state to dedicate funding to Long Covid and associated conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome. Billy Hanlon, the Minnesota ME/CFS Alliance‘s director of advocacy and outreach, says that Walz was instrumental in pushing for the legislation.'

"ME/CFS and POTS are not new conditions, but patients with both have long experienced their symptoms being dismissed by physicians. A 2016 study estimates that aroundone in four people with ME/CFS are largely confined to bed by their symptoms."

“As Vice President, we hope and urge Gov. Walz to continue to prioritize this crisis that is impacting over 20 million Americans and only growing,” Hanlon told Mother Jones. “It will take our highest levels of leadership at the federal level to respond with the urgency that this crisis demands.”

"Now, with Walz a prospective Vice President, Long Covid and related conditions may have a more highly placed advocate than ever before—with a demonstrated record of working to combat this post-infectious disease. Hanlon says a federal response “should include increased baseline funding to the NIH and federal health agencies to support the expedition of clinical interventions.”

“Just as COVID-19 is not going away,” Walz wrote in his 2023 funding proposal, “Long COVID is not going away.”

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The original was posted on /r/cfs by /u/Ok-Heart375 on 2024-08-06 18:48:17+00:00.

I've been seeing a lot of posts about antihistamines in the long covid groups and funny thing, I took Doxylamine Succinate last night as a sleep aid and feel better today than I have in a long time and there's a lot of other reasons I should be feeling bad, high HR, low HRV, high stress yesterday, didn't sleep well or long...

What do you guys think?

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The original was posted on /r/cfs by /u/cosmiicsloth on 2024-08-06 14:41:11+00:00.

Hey everyone, I don't think I've ever posted here but I have been noticing that a lot of the things I experience really ring true with ME/CFS. I've even called myself "constantly tired" since I was about 16. I've had several blood tests taken but 99% of the time everything was alright (except when I had anemia once - I was barely functioning then).

I remember almost falling asleep during classes, extreme physical tiredness when I got home, not having friends due to having no energy to socialize. But I've always dismissed all of this as something everyone experiences - they must just push themselves, right? Or I've kept telling myself to eat better and exercise and it'll go away (it doesn't).

Then I found this sub among others, and holy shit, I can't even imagine having it as severe as many people here do. I feel like an impostor for even considering it. I recently started a new job as a housekeeper, so I'm doing physical labor 5 hours a day for 5 days a week. The thing is, I have no energy for anything apart from showering and eating afterwards, and my days off I feel like I'm fighting against the worst brain fog and just standing up and walking makes my head spin sometimes. My coworker, who's in her 30s (I'm in my early 20s) even told me "you're young, you should be full of energy"! I don't have energy for any of my interests or socializing, I just work, come home and become a vegetable. But to me it seems that ME/CFS actually prevents people from working overall, not to mention in a physical job. Is it possible that I'm overreacting and it's something else?

EDIT: This is all confounded by the fact that I'm neurodivergent and in some ways, this job is the nicest I've had so far, because I can't deal with hospitality and working with people. With prior jobs I was both mentally and physically exhausted, but with this job I can control my environment better and I'm only physically tired. If I'm lucky and don't have brain fog, I can read a book or something. Sometimes I think I could just be experiencing burnout, but the physical symptoms are still present almost always and worsen after physical activity no matter how well my day went in terms of overstimulation.

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The original was posted on /r/cfs by /u/No_Engineering5992 on 2024-08-06 20:41:46+00:00.

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The original was posted on /r/cfs by /u/thisismecryingg on 2024-08-06 10:53:26+00:00.

Next week I'm going to the Eras Tour in London and I'm so excited because I love Taylor Swift so much. However, the closer it gets the more anxious I get because I'm terrified of feeling nauseous or ill, or experiencing neurological symptoms. I don't think anyone in my real life fully understands this because while I'm so excited and grateful that I'm able to go, I almost wish I wasn't. If anyone has any tips to stop feeling like this, concert tips in general for ME/CFS, or can just relate to how I'm feeling that would be great.

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The original was posted on /r/cfs by /u/SirRobertoh on 2024-08-06 05:40:04+00:00.

Anyone here work? Seems impossible. Like I had to drop to being a student again as it’s slower but I’m still struggling. I just feel so limited man :(

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The original was posted on /r/cfs by /u/Monkelli on 2024-08-05 18:32:29+00:00.

Going on holiday with family. I'm not good at stopping when I should and wonder if a walking stick will make me think I can walk further than I should.

Family want me to get one after i struggled on a day trip recently. Just wondering if the point where I'm struggling should be where I stop rather than finding a way to get around it?

Really interested in people's experiences.

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The original was posted on /r/cfs by /u/tobivvank3nobi on 2024-08-06 01:51:15+00:00.

Female patients diagnosed with Long-COVID exhibited clinically and statistically significant improvements when comparing both within the Val/Cel cohort and between study cohorts in:

fatigue as measured with both the PROMIS fatigue instrument and a numeric rating scale (“NRS”) for fatigue,

pain as measured by a NRS scale for pain, and in autonomic dysfunction symptoms as measured using the Orthostatic Intolerance Questionnaire.

Two different scales for Patient’s Global Impression of Change documented improvement in overall health when treated with open-label Val/Cel twice daily for 14 weeks.

Treatment with Val/Cel was generally well tolerated, with an observed safety profile consistent with the known safety profiles of valacyclovir and celecoxib. There were no serious adverse events observed in this study and only one treated patient discontinued treatment due to adverse events, possibly related to Val/Cel treatment. Among those patients receiving Val/Cel, nausea was the most common adverse event. The most common adverse events in the routine care group were headaches and muscle pain.

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The original was posted on /r/cfs by /u/Alarmed_History on 2024-08-05 21:51:27+00:00.

I looked at a couple of old pictures of myself, because I wanted to send them to a friend… and it broke me. So bad.

I’m trying hard not to cry and get over emotional as I am already in a bad state physically, I’m currently in PMS and that always makes everything worse for me.

Seeing that picture was like having a bucket of ice dropped on me while at the same time being stabbed in the gut.

I was happy, full of life, pretty… I will never feel full of life or pretty again, and that is something I have not been able to come to terms with.

I know that it’s stupid and frivolous, with all the struggles this hell of an illness brings, but I miss looking in the mirror and seeing someone I recognize, I miss feeling comfortable in a painless body, and I miss feeling pretty.

Needed to get this thoughts out of my head.

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The original was posted on /r/cfs by /u/zangofreak92 on 2024-08-05 19:39:43+00:00.

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The original was posted on /r/cfs by /u/warmgratitude on 2024-08-05 18:21:48+00:00.

Hey all

As I’m sure you know, C-19 infection and other illnesses can worsen our condition, or like in my case with C-19, cause it.

I wrote up a Google doc based on info from scientific journals. It goes over all the ways to protect yourself from infection/reinfection.

I’ve been following it strictly for 2 years and have avoided reinfection thus far! Haven’t gotten a flu, cold, nada.

If you don’t have access to masks, check out Covid Action Map to find Mask Blocs in your area. They will provide masks for free 🩷

——— LINKS

Covid Action Map:

Google doc:

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The original was posted on /r/cfs by /u/Sunbeams_and_Barbies on 2024-08-05 17:18:55+00:00.

I was wondering if I have a CFS issue. I finally talked to my dr and he suggested it sounds like apnea.

I snore. I am always so tired. I wake.up.with a headache so many days. I have a mildly sore nasal passage many days. High hemacrit on the blood test. Mildly elevated BP Starting to struggle managing my weight because workouts feel exhausting. Debilitating brain fog some days.

I'm hopeful he is right and I may have found a solution.. wondering if anyone else found a smoking gun this way?

** I do not to my knowledge have the classic stop breathing episodes that people mention with apnea.

Thanks

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The original was posted on /r/cfs by /u/CelesteJA on 2024-08-05 13:59:35+00:00.

So, there's a funeral coming up. It's for someone who I've never really "met" before. As in, I met them as a baby. They were the wife of a family member's brother, of who I also only met as a baby.

I understand that funerals are for the living, but I'll be honest, I would be useless at consoling anyone in my severe state, and I'm scared of getting worse.

My family are not understanding of my CFS. And I'm afraid that they're going to shun me for not attending.

I plan on pushing through my CFS to attend my parents funerals, whenever they might be (no doubt my siblings would abandon me if I dared not attend my parents funerals). But I just don't think I can push through through attend every funeral that occurs. I'd rather "save" the pushing through for people I personally know. I hope that makes sense.

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The original was posted on /r/cfs by /u/Ok-Heart375 on 2024-08-05 13:14:52+00:00.

What are your aggressive rest goals for today? What challenges might you face? How do define your aggressive rest?

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The original was posted on /r/cfs by /u/Scr3aming3agl3 on 2024-08-05 01:07:45+00:00.

I've thought about getting one as whenever I walk I am dizzy and light headed. So it is more for having something to help me kerp my balance and not fall. What do you guys use?