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The original was posted on /r/cfs by /u/glennchan on 2024-04-10 05:35:57.

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The original was posted on /r/cfs by /u/Caster_of_spells on 2024-04-09 21:49:53.

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The original was posted on /r/cfs by /u/Public-Pound-7411 on 2024-04-09 19:47:50.

Recently, I’ve been remembering more and more examples from the literary canon of characters who are described as having terrible nerves that make them reclusive (rich characters) or being shiftless and lazy and unwilling to work (poor characters) who probably had ME or something similar.

The first one I went to look back on was the character of Mr. Fair-something (brain fog) who hires the protagonist. In chapters eight and nine have the initial descriptions of him and…wow, Wilkie Collins definitely knew a severe ME patient in the Victorian era!

Sadly, he held them in a lot of contempt but the descriptions of the man’s affliction are uncanny. He’s sensitive to bright light and sound, any exertion takes such a toll, he is moody, and he even marvels at others’ ability to accomplish simple tasks. It’s definitely worth reading or listening to and is likely in free online libraries.

Some others I can think of and plan to look at are Moliere’s The Imaginary Invalid and Persuasion, which I think may actually have two characters with invisible illness, Mrs. Charles (again, not great with the last names today) and Anne’s penniless friend in Bath who is there to take the waters.

I thought it might be interesting to compile a list, so if you can think of other examples, please comment them below. Particularly, if you know of any outside of the English language canon. It might be interesting to compile them all into a book or essay.

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The original was posted on /r/cfs by /u/WhitneyDafoe on 2024-04-09 21:02:57.

New Severity Scale for ME/CFS

by Whitney Dafoe

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

I wrote this new severity scale for ME/CFS about 2 years ago.  I really wanted to express how severe the illness can actually get which is not at all reflected in our current mild-moderate-severe-v.severe scale.  And I wanted to make it more accurate to our lives.  It’s not perfect, I know, mostly because every ME/CFS patient is so different.  

It’s not possible to reflect everyone’s situation perfectly or account for all the millions of particular circumstances all ME/CFS patients face in one scale because every category would need a 50 pages long description.  But I tried my best to make it as useful and inclusive as possible.  

It has been changed for publication in a few ways that I don’t like, mostly making the Extremely Severe categories labelled with A, B, C, D etc because it doesn’t mean anything without having to look at the scale and read it.  A more descriptive Extremely Severe category name would be more useful to us I think so you would know what it meant from the words alone or could at least remember what they meant.  But there is always room for improvement and change down the road. 

I really hope I did you all justice and that this may be useful for us if nothing else, for a template for moving forward to make a scale that is even better.  I have already read some great ideas for improvement.  

I love you all.  Whitney ❤️ 

ps. please go easy on me, I really did my best at the time but I'd love to hear your ideas and how this scale works for you and would affect you.

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The original was posted on /r/cfs by /u/FallenTorch on 2024-04-09 20:47:36.

Sanders’s Moonshot for Long Covid treatment calls for $10 billion in funding over the next ten years. They are currently looking for input from the patient and medical community to figure out how the proposal can be strengthened. (The link contains more information on how but I haven’t had time to read the full proposal yet).

This is the kind of response we need so fingers crossed it goes somewhere. There was a lot of bipartisan interest at the HELP Long Covid Congressional Hearing in January but it was unclear what if any action would come as a result so hopefully a proposal like this picks up traction.

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The original was posted on /r/cfs by /u/rvc1989 on 2024-04-09 20:46:22.

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The original was posted on /r/cfs by /u/Significant_Owl_8777 on 2024-04-09 16:47:24.

I'm self conscious to even go to work. I have been fatigued for a long time now and recently been having bouts of anxiety and panic attacks so now I've had a breakout of acne from the stress... So I look pale, dark bags under my eyes, eyes are red and watery from lack of quality sleep, and acne. I look like a walking corpse and it's embarrassing. You can see I'm sick. It's probably untreated sleep apnea at work slowly killing me.

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The original was posted on /r/cfs by /u/NanaBanana2011 on 2024-04-09 03:19:29.

What kind of doctor have you found to be the most helpful in dealing with/treating your CFS? (fibromyalgia too if you have it). I’ve heard that rheumatologists and neurologists are good but I’ve never seen them so I don’t know.

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The original was posted on /r/cfs by /u/just0newish on 2024-04-09 09:34:07.

Do you have to pace that too? I cant really tell if it does for me but it feels like i just have to be neutral all the time just to be extra safe

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The original was posted on /r/cfs by /u/spherical-chicken on 2024-04-09 15:20:24.

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The original was posted on /r/cfs by /u/Financial-Water-9128 on 2024-04-09 10:38:19.

Maybe about 3 weeks ago I was bedbound about 95% of the time. I could get up for basic tasks like making food or going to the bathroom.

However suddenly I’ve gotten quite a lot better recently. I’m still getting symptoms a little but they’re a lot less extreme and I’m able to do a lot more. Yesterday I sat outside for 10-15 minutes in the sun, which I haven’t been able to do in about 2 months! I managed to do laundry the other day, and tidy up. Things which I usually find incredibly difficult.

I don’t know where this has come from but I’ve just suddenly improved a lot. I‘ve been resting vigorously for about 3 months now so I think that must be why? But it just seemed so random. I’m happier than I have been in a long time though. I’m still taking it way easier than I think I’m able to (to be safe), but I’m definitely improving and it’s been great!

I’m only on month 9 so I believe I have a fairly good chance at recovery still considering my young age (20). I’m going to keep trying and hoping. Thank you all for all of the support :)

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The original was posted on /r/cfs by /u/Over-Nobody-9116 on 2024-04-09 08:46:11.

Does anyone have any theories why this is? It’s one of the symptoms I struggle to get my head around what could be happening to cause it.

My best friend became profoundly affected 2 months ago and it breaks my heart I can’t even provide silent company anymore even with eye mask and ear plugs - it seems just knowing I was there was enough to make him feel crashy so we had to stop visits. This disease is so strange and cruel.

Edit: thank you all for your sensitive explanations, everything you’ve said makes sense. Hang in there y’all, stay hopeful💛

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The original was posted on /r/cfs by /u/That-Sea1178 on 2024-04-08 11:09:20.

Is it possible to go from severe bedbound to moderate by resting more for very long time so

I’m basically severe I’m able to have a screentime of an hour a day and 100 to 150 steps -if I was to reduce my screentime to 30 minutes, so reduce it by 50% and do the same with steps. Is it possible that’s in a year I could Have a screen timer of 3 hours and be able to walk 1000 steps ?

I was able to stay stable and keep this baseline for 1 1/2 years. What would really like to have more than one hour of screen time a day and improve

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The original was posted on /r/cfs by /u/lobas on 2024-04-08 21:57:34.

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The original was posted on /r/cfs by /u/A_Ordinary_Name on 2024-04-08 19:24:10.

I am on the far side of mild or early moderate, and I wondered how many hours you guys tend to sleep a day? Not just lay down, but actively sleep. For me it’s usually about 12 hours. I am hoping im not sleeping too much which is making CFS worse.

Also, if you want to include how long you stay in bed too I wouldn’t mind! Particularly if you are mild or moderate. I feel bad about how much time i’m in bed, which is like, 8 of the hours I am awake. Maybe it’s making me even worse.

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The original was posted on /r/cfs by /u/ifidcyoudc on 2024-04-08 22:07:24.

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The original was posted on /r/cfs by /u/CorrectAmbition4472 on 2024-04-08 06:54:15.

severe/very severe

My mom is so stressed out from caring for me full time (I’ve been sick and disabled and living here for 15 months now) that she has to take the summer off and go elsewhere and so I’ll have a caregiver or other family member.

Change stresses me out but I also am grieving a lot of my own life I was independent and never had any mental struggles I had a career etc.

I have a lot of thoughts of feeling that I am burden to everyone in my life (I do work on this in therapy when I am well enough to attend my virtual sessions) and they are not afraid to share how horribly this has impacted their lives I think that’s what hurts the most. I don’t have the capacity mentally to take that on.

Everyone around me is so horribly stressed out about the situation and we’re trying to figure out how to make this work long term since I have no signs of improving and this is going to be really financially taxing. The stress makes me feel even worse than I already do from all of the physical shit I deal with daily.

I want to try to find resources that could maybe help us out but at the same time I wish this never happened so I wouldn’t have to watch everyone else’s lives fall apart and suffer because something bad happened to me

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The original was posted on /r/cfs by /u/Lunabuna91 on 2024-04-08 10:22:25.

Original Title: Calling all allies of ME from across the globe. At the request of Millie’s family, we’re holding a Twitterstorm on Tues 9 April to make some major noise. This MUST TREND. Please get involved then using #BringMillieHome AND #DontLetMEDie. Share articles. Share the petition. Tag the NHS Trust.

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The original was posted on /r/cfs by /u/itsalwayssunny_2324 on 2024-04-07 20:24:52.

Hi guys it's me again posting for the 2nd time today because I'm going absolutely out of my mind. what symptoms remain for you that mostly never go away no matter what? do you experience feeling good when you are not in a crash or do you experience symptoms of fatigue, flu like symptoms as a constant?

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The original was posted on /r/cfs by /u/Turbulent-Weakness22 on 2024-04-08 10:00:16.

On Saturday I managed to leave my house and hang out with some friends while they played board games. They set me up a bed next to the table so I could sleep when I felt like it and listen to them when I was awake. I love that they did this for me to feel included. I managed to sit up and play 2 games. 1 Round of Yahtzee and 1 round of Quirkle. Both games I was the undefeated champion of when I was still only mild. I lost both games so badly, my score was half of that of the person who came second last. I don't really care that I lost the games, because it's the playing that is the fun part. But it really showed me just how mentally slow I am now. I can see it in all areas of my life but the score was something very definitive. Flowers for Algernon killed me when I first read it and I just can't believe this is my life. Anyone else experiencing any similar?

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The original was posted on /r/cfs by /u/its_all_good20 on 2024-04-08 07:56:53.

I have been sick for four years. I know my illness. I have been severe and mostly moderate with a period of mild remission for a few months until I got Covid again this past fall. After Covid I have been mostly bed bound- largely due to aggressive pacing and lowered baseline - but I luckily kept some of the “remission” aspects of a better sleep cycle (thanks to cannabis) and some improvement in HrV. Although my HR became extremely Brady/tachy again after reinfection.

Anyway- I work from bed and need help to wash my hair , get meals etc. that’s my level. But I had a couple of decent days and the delulu “I’m better!” Set in… then I decided to try half an adderall (10 mg very small dose) and monitor my heart rate. I have raging adhd and have been unmedicated for several years. I recently got a new prescription but hadn’t tried it. I thought I would take half- monitor my heart rate - and determine if I felt safe adding it to my morning pills before starting work to help with brain fog …

Anyway….. I got super fake energized and wound up Scraping the wallpaper off a wall in my kitchen for an hour. I know better. I know pacing. I know stimulants. But I did it anyway. I got so blissfully lost in the zone of hyper fixation and feeling the energy to do something I wanted to do- and I just kept going. Now I feel the lactic acid. I couldn’t walk back to bed after. I feel that feeling in my head- IYKYK. I feel the nausea and the buzzing. I will be paying for my folly.

So dear friends- and those who are new- this is why we all say be mindful of stimulant use. Of course it can tax your heart- but you can also get lost in the joy of fake energy and wind up in PEM that takes days to recover from. Or lowering your baseline. It’s not worth it. If you need to take them (and I get it. I have adhd AND my HR goes to the 30’s) I get it. But be smarter than I, and put boundaries in place to protect yourself from your own zeal.

This is not a disease of lazy. It’s a disease of the desperate desire to move and create and work and grow-stuck in bodies that punish us for living.

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The original was posted on /r/cfs by /u/StarsThatGlisten on 2024-04-07 18:17:54.

How do you all cope with strong emotions?

I’m severe and need to rest and sleep but it’s very hard when I have strong emotions. I’m feeling very hurt at the moment by being badly treated by someone I once trusted and I just can’t relax or sleep properly, but I can’t do any of the things people suggest to process emotions (journaling, seeing friends, talking, going outside, etc) as I have severe ME.

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The original was posted on /r/cfs by /u/gaypunkratz on 2024-04-07 15:57:39.

I’m on the train to go back to my state from seeing my bf and I am EXHAUSTED.

I have to force myself to get up at 7 am to get a train at 9. The good thing is I did.

But, having brain fog makes it hard for me to type and talk.

I used to have it more severe but after taking a semester off from college it helped me.

I am undiagnosed and I know I have this chronic illness. (In the process to get a diagnosis atm)

I wanted to see if people’s fatigue is fluctuating?

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The original was posted on /r/cfs by /u/Bluenymph82 on 2024-04-07 21:52:42.

I see a lot of folks mention the known fluish feeling and such like that, but I only get that if I push really, really hard or am unwell.

For me, PEM is:

• a heavier feeling of being fatigued/drained than the day prior

• my entire body having a weak/drained feeling as though I need to drag myself wherever I go

• heavier brain fog which causes me to talk less

• higher light and sound sensitivity (could also be because of my autism and ADHD)

• needing to rest a lot more vs. the days prior and spending 60%+ of my day on the ground/bed etc.

• less ability to read without getting even more tired

• headaches if it's really bad

I keep trying to deny I have CFS (recently diagnosed), but these are all signs of PEM, which I have, and all point to CFS itself.

In my mind, I keep thinking I'll just rest for a bit. I'll take a year off to care for myself and get better. Thing is, I've been trying to get better for the last 3-4 years with limited success (and never close to 100%).

I need to accept this. I need to finish signing up for disability and order a mobility aid because, while I might have the rare good day that makes me feel like I'm improving, I know it's only a matter of time before I slid back down the hill again.

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The original was posted on /r/cfs by /u/PerformerAble2291 on 2024-04-07 20:51:01.