r/cfs

I’m having a real difficult relationship with my screen time (I acknowledge the privilege of tolerating screens). Screen use carries many downsides for our condition; cognitive strain, eye strain, high blue light around sleep, internet addiction and drama, etc.

On the other hand, it can give me the little hits of stimulation that help manage through the day. I can’t go exploring in the world, so I can briefly play a video game to scratch that itch. I can’t go hang out in social spaces, so I look for communities online. The internet allows us to stay connected when people don’t understand us IRL, and stay up to date on treatments and research. All of these things rack up a lot of screen time at the end of the day.

What motivated this post was the culture around screen time limits. I have strict limits on apps like Instagram and TikTok, which I do follow. Then the problem is I just end up finding other sites to distract myself.

If you’ve spent time on the internet I’m sure you have seen ads for apps/devices to cut down screen time. They always say, I cut out screen time and I got to enjoy “real life!” One ad literally made a comparison between a “good” person exercising and working on projects vs a “bad” person laying in bed scrolling on their phone. Hey guys let’s just throw away our phones and go on adventures right? Of course I want to do that, I’m so sick of my phone and the internet, but I literally can’t run away and have fun. I hate this moral ableism and I hate that I get ads like this (among other ones like gym culture).
If I didn’t have technology or access to the internet, I would really struggle more.

It also lends into this gross stereotype of people with ME/CFS as “lazy/anxious people that need to touch grass”.

Yes I understand there are other low energy activities, but things like books are practically impossible now cognitively. This is more of a vent post, but I would like to hear others thoughts on this.

TLDR;
I struggle a lot with screen time, and the guilt that comes with it. I also feel like screen limit culture shames us

I’m amazed that healthy people can do so much! Blows my mind hearing/seeing healthies do normal stuff. Like wtf, are you an Olympian? What do you mean you went jogging, showered, got lunch with a friend, worked 8 hours, went to a concert?!

Im currently on day two of my period and I feel like I am crashing
Everything is heightened
I can’t handled the light anymore at all I have to close my blinds even with a grey day outside
grass cutter is out side and it’s making me wanna cry with how loud it is
I can’t imagine doing anything but lay here and hope for some relief I can’t even nap to help

When I first got sick, a lot of friends came by. At the time, I don’t think any of us really understood how much my life was changing.They brought all kinds of things that they thought might make my life easier: hot compress pads, electrolytes, magnesium spray, compression socks, neck pillows, eye masks, herb tea, protein drinks, cooling stickers, soft blankets, massage balls, a notebook to record symptoms, and AUVON TENS device, because a friend remembers that I used to say that my muscles were tight after exercise. At that time, some things were even a little funny. But now everything reminds me of someone, trying to stay with me in their limited but sincere way.Hot compress pad reminds me of my friends who used to run together. Massage balls remind me of people who used to drag me to the gym. Protein drinks remind me of that gym bag that I haven't touched for a long time. Even those small recovery devices will remind me of my sore self after exercise, instead of my tired self just living now.I miss the days when I could casually promise others to go out.I miss running, miss lifting weights, miss complaining about normal muscle soreness. I also miss the life where I don't have to calculate how much this will cost my body before making a plan.I don't blame others for slowly moving away. Life always goes on, and I know it's hard for others to understand a disease that makes your world smaller and smaller. But sometimes when I look at these "useful little things" in the room, I feel that they are like a small museum, collecting my old life.I don't know when it started, and loneliness is no longer like something that comes to visit me occasionally. It became the only thing that remained.

M 45 UK, in a relationship with a small family diagnosed with CFS mid 2024. My home dynamic as many of you know can relate can be intolerable for a lot of the time due to a fundamental lack of understanding and compassion for our condition. I would like to have someone who is in a similar life phase to myself who I could be mutually beneficial as we navigate a very challenging and sometimes impossible situation in our lives. My cfs is mild to moderate and has made me completely change my work and life. Thank you for reading. Please DM me if of interest.

I'm currently planning for the future and creating an Advance Healthcare Directive.

If I were to become so severe that I lost full cognitive capacity, what treatments should I put down to fully refuse?

I suppose even fully severe ME patients are forced into psychiatric sectioning, so I should put that down and graded exercise therapy.

But is there anything else? I'm specifically thinking of feeding, medications, etc.

Any advice would be greatly appreciated!

Caroline Kingdon was presenting Biobank research which has shown people with ME/CFS (not speaking about severe ME/CFS, but the rest of us) to be more functionally impaired than people with MS and cancer. This was not compared to easily treatable cancer, but with *severe* cancer and is undergoing quite a lot of treatment.

And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales. ME/CFS is recognized as life shortening

https://www.instagram.com/reel/DYj_Qj7sEWD/?utm_source=ig_web_copy_link

I want to create some accessible art tutorials for people with chronic illneses and it would help me a lot to understand what are the most common challenges for making art in the community,

Multiple choice option for people with low spoons today;

1. Low physical energy
2. Low Mental energy
   3.Hand coordination
3. Lack of skill or training
   4.Lack of tools
4. Financial reasons
5. Lack of experience
6. Hand strength
7. Difficult instructions

Additionally, it would help me to hear what kind of creative things you guys are already doing or wish to do, so that I know what interest and skills already exist, thank you!

It's about an 11-year-old girl who gets ME/CFS, told through a haunted house story. Finished the audiobook yesterday and loved it. The author has been diagnosed with me/cfs herself, which explains why it's described so very well.

Really recommend it if you haven't come across it yet - I know it's written for kids/YA but it's just so well done. And there's no simple "oh you're cured" ending either.

That is the question I would like your opinions on, if you wouldn't mind.

Whoever has considered shaving [edit: buzzcutting!! My bad, fellas] their heads - whether you followed through with it or not - please tell me your experiences?

What influenced your decisions the most?

Short and long (including life-story-essay 'long') answers are welcome!! ;p

Thank you all in advance♡

I have been sick with ME for over 2 years now. Severe since October 2024.

In October 2024, I had a very severe crash, which is what caused my deterioration from mild to severe long term. During that crash, I lost everything. My partner at the time became my caretaker, then burnt out and left me. I lost my job and my ability to work. We had to sell the house we bought together. I had to move across the country from Portland to Tennessee to be with my parents for care-taking. I have nothing left. Previously I was in a financially secure, happy period in my life. Now I am very financially unstable and frankly unhappy.

I have friends still, who I mostly talk to online. But even that is isolating. I can no longer engage in the hobbies that originally brought us together. The hobbies I had that I previously enjoyed before getting sick are impossible for me now. I just really don't know how to build and live a life that i would want to live, given my health. I am bedbound. It is really hard for me not to despair.

And I miss my ex so much. Its been over a year since we spoke! its insane that I still miss them. They say time heals all wounds but I honestly don't really believe that anymore. The normal thing that heals isnt just the passage of time but the accumulation of new experiences and the knowledge that you can be happy in a new environment. I don't get that. Time passes and every day is the same, barring my fluctuating symptoms. Which is itself a source of distress.

TLDR: Got sick ~2 years ago and am really struggling with loneliness and purpose.

cat tax

SUMMARY: I'm trying 45 grams/day of dark chocolate. Only on day 4, so too soon to be sure about causality; but it may be helping with mood, attention, orthostatic intolerance, and physical appearance.

DETAIL: Every morning, I eat 45 grams of vegan chocolate chips, 69% cacao. I eat no other chocolate.

Though it's too early to be sure that there's a causal link, I've noticed better mood, better attention, better physical stamina (in the sense that there's less orthostatic intolerance), a reduction in the recent flareup of a podgy look in my chest and belly (from inflammation?), and a nicer face (less of the inflammatory puffiness; smaller pores; color seems more even; usual dry patch isn't dry; and the two creases between my eyebrows are much less visible). My appetite for Coca-Cola is much less.

As for my attention: I've been able to watch a movie in chunks of about 20 to 30 minutes. Ever since I got CFS (5 years ago), my norm for movie-watching has been chunks of 3 to 5 minutes, 15 minutes if I'm lucky. (Before CFS, I could turn on Turner Classic Movies and watch three in a row.)

Orthostatic intolerance: I still spend a lot of time lying down—but, when I am sitting up or on my feet, there isn't nearly so much desire to get more horizontal. Just before writing this post, I spent a while washing dishes, and it didn't make me feel sick. Yesterday, I had a long shower—and afterward I kept on with my activities, instead of lying down feeling sick.

Why am I doing this? Until I started this experiment, it had become my norm not to eat much chocolate (I'd go many weeks without). Recently I had some at night, and got the sense that it was keeping me wide awake for many hours, in a way that p.m. coffee and Coke didn't. I looked it up, and read that it might be the theobromine in the chocolate, acting as a stimulant. I also had a feeling that, in the many hours after the chocolate, I was not as PEM-y as I should be after the day's errands. That got me curious about chocolate in CFS; I found "High Cocoa Polyphenol Rich Chocolate May Reduce the Burden of the Symptoms in Chronic Fatigue Syndrome" (https://pmc.ncbi.nlm.nih.gov/articles/PMC3001690/pdf/1475-2891-9-55.pdf).

By the way, the study found that the chocolate was not associated with weight gain, despite the calories in it. The authors hypothesize that the increase in feeling energetic causes a compensatory increase in activity. I suspect that the subjects also, despite being told to maintain their diet, subconsciously made compensatory reductions because of the chocolate.

In case it matters: the chocolate chips are made by Enjoy Life, the Dark variety; the listed ingredients are unsweetened chocolate, cane sugar, cocoa butter; the 45 grams have 210 calories. I eat them in the morning, to keep them from messing up my sleep.

We'll see how it goes.

I seriously have no idea how I’d ever live alone. I didn’t have much upper body strength when I was healthy but now it’s non existent. I tried to open a jar of salsa while I was home alone and I think I overexerted by doing so. I just gave up. Do you just avoid jars or is there a trick for this?

Hi,

A few months ago, I posted about my legal case against the Idaho Department of Health and Welfare (I deleted it). I'm the bedbound person with severe ME/CFS, POTS, MCAS, and hEDS who's been fighting for a written, asynchronous, remote communication accommodation because phone calls for official business trigger extreme post-exertional malaise and do not allow me to meaningfully participate.

I made it all the way to the Office of Administrative Hearings. They granted my accommodation and found "sufficient cause" to proceed with a written hearing. The judge urged me to get an attorney because my claims are "highly complex." I've been trying. I contacted all of the primary legal aid in Idaho, including, but not limited to: the ACLU, Disability Rights Idaho, the Idaho Volunteer Lawyers Program, Idaho Legal Aid Services, and dozens of private attorneys. No one will take my case on contingency. The Supreme Court's decision in Cummings v. Premier Rehab gutted emotional distress damages under the ADA, so there's no money in it for private firms. I've been forced to do everything alone.

I had a very experienced attorney reviewing my case. It was someone who has spent decades fighting DHW. He asked for my materials, gave me strategic advice, and told me I was doing well. Then he said he's retiring due to his own health issues and can't take new clients.

I'm back to the drawing board, and I'm crushed. I didn't come this far to give up.

The system is designed to exhaust you into silence. The merits of my case are strong enough that it's been taken seriously by anyone who's looked at it. But it's still not enough to get the help I need. And I've looked absolutely everywhere I can conceive of. People say they care about issues like mine until they have to show it.

So what am I trying to accomplish by posting this? Visibility is the only leverage I have left. The kind of attorney I need is a unicorn: someone who does ADA Title II and Section 1983 civil rights litigation against state agencies, who is willing to work with written, asynchronous, remote communication as an accommodation, and who will take a case with no guaranteed payout. It's probably the hardest thing I've ever done in my life. But I know there must be someone else somewhere in the United States who would care enough to realize that this is a fight for an extremely vulnerable community.

If you know a lawyer, please tell them about me. And if you can share this post, please do. My reach is small. I'm stuck in the same circles. I haven't totally burnt out yet, but no one can do this sort of thing alone.

Before anyone says it, yes, I know talking about my case online is not what lawyers recommend. If the system worked, I wouldn't be here. If any community understands that, it's this one.

I cite the law because I was forced to learn it. I've been systematically violated at multiple levels, and no one was coming to save me. Knowing my rights kept them from completely steamrolling me.

If you've read this far, thank you. Even if you can't help, I'm grateful to be seen by my community.

TL;DR: Bedbound with severe ME/CFS. The Office of Administrative Hearings granted my written, asynchronous, remote accommodation and found sufficient cause against Idaho DHW. The judge urged me to get an attorney. I've exhausted every legal avenue in Idaho. No one will take my case on contingency. I need a unicorn: an ADA/§1983 civil rights litigator willing to work with written communication. Please share.

Hello! My name is Andrew and I'm a disability lawyer. I'm doing a webinar in a few weeks about disability benefits with Staci Stevens from Workwell, who plans to discuss the 2-day CPET.

I have recently seen a few references in this community to concerns about the 2-day CPET. Would anybody here be willing to share those concerns with me, so I can better understand them and help support my clients? I hope to also explore and address those concerns during the webinar.

And the free advice I'll give in advance to anybody worried about undergoing a 2-day CPET, or if you aren't located in NY or CA - a strong neuropsych report combined with a statement from your physician that the 2-day CPET could be detrimental to your health can be an effective alternative. Just make sure to undergo a neuropsych with someone who understands fatigue-related illnesses so they don't mistake your fatigue for a lack of effort.

Hey all, among the many other symptoms, I believe brain inflammation has been the hardest for me. Some of my symptoms were - (one sided) migraines, sensory sensitivity, extreme agitation, insomnia, brain is hot feeling, losing train of thought easily, noticed change in connecting my brain to my body (motor skills). Usually at the same time I'd have facial pain, congestion, and sore throat. Could either be viral flareups, pure migraines related, or something else.

Either way, what has helped me has been tylenol, sensory deprivation for days, cold compresses on my head, high doses vitamin c, zinc, elderberry, lysine, lots sleep meds to try to sleep it off, stretching my neck, and ofc doing everything possible to not induce a flare again. Massages sometimes helped. Noticed a difference with HBOT, don't have enough data if it helped long term.

Wondering if anyone else had something similar and what helped them?

TL; DR. Many people with severe ME/CFS experience temporary improvements from treatments or supplements, only for the effects to fade weeks or months later. As someone who is extremely severe myself, I no longer know whether trying new treatments is worth the emotional and physical cost if the body eventually adapts to everything.

I remain deeply shaken by the death of James Strazza a few days ago.

Two years earlier, during the fourth year of his illness, he experienced a significant improvement with oxaloacetate. However, the effect of the supplement was only temporary.

Whitney Dafoe also improved with low-dose aripiprazole (LDA), but later reported that it stopped working after about two years as well. I honestly have no idea how he continues to maintain the benefits of that improvement today, aside from a very risky protocol he reportedly followed.

Why do supplements and off-label treatments seem to stop working so quickly in ME/CFS? Is it simply that the brain adapts to them? But then again, many people take antidepressants or antipsychotics for years while remaining on the same dose with stable effectiveness.

I am extremely severe myself, and I no longer understand whether it even makes sense to try something new if the effects will fade after a few weeks or months.

I have noticed the same pattern even with simple supplements. For example, when I start magnesium or melatonin, I may feel a noticeable change for one or two days — and then suddenly nothing It feels as if the system rapidly adapts to everything, or perhaps the illness itself keeps overpowering every temporary improvement.

I hate that this is my reality
About once a day I will get extremely angry and negative about everything
Anyone offering me advice makes me feel so much rage
Thinking of the fact I got iller because I let awful people take advantage of me and now they live great lives while I lose more everyday
Seeing regularly healthy people get sick and complain about it or get the treatment they need makes me feel like an evil person for hating them for getting the help they need

Not being recognised for living for others and seen as selfish when I would of left this world already if it meant I wouldn’t hurt my family but I stay only for them

Doctors acting like they know better when they don’t even know the name of my condition

Family members still not even understanding my illness when I flare so bad and it still shocks them

The fact I wasted my 20s having an eating disorder to finally recover at 29 just for my body to throw it back in my face so I won’t live fully in my thirties

The fact my ex that was abusive and made me crash from mild to moderate is living the life I wanted and suffers no consequences

I hate that it’s made me so miserable and mean
I am a kind and gentle person but I don’t know how to be that anymore

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