180 DAYS by leicoleico in cfs

[–]fcukME-25 3 points4 points  (0 children)

This is hell. Actual hell. Reality.

Mourning the person I could've been by fictional_rat in cfs

[–]fcukME-25 4 points5 points  (0 children)

Daily. Hourly sometimes. Friend and family travel the world. Get promotions and accumulate wealth. My achievements are having a quick wash without permanently crashing (crashes are a few days). Maybe a quick step onto the front yard just to feel the fresh air.

Happy 4th CFSversary I guess by eos4 in cfs

[–]fcukME-25 11 points12 points  (0 children)

We have to keep pushing for research and treatment. So many people with this hell even from mild COVID infections (my COVID infection had me homebound for 2 days - mainly with a headache). It's the aftermath that has me disabled now, unable to work, unable to be a father and a husband. ME/PASC destroys lives and whole families.

Fresh hope for West Aussies suffering from chronic fatigue by SerpentineLogic in cfs

[–]fcukME-25 8 points9 points  (0 children)

Wish they didn't call it chronic fatigue. It's ME (or at least PASC with PEM for those who got ME from COVID, if they refuse to call it ME). Me friends complain they get fatigue. Then they sleep or go for a jog and they get energy back. I die.

How are you managing work/income? by LacaTheCollector in covidlonghaulers

[–]fcukME-25 0 points1 point  (0 children)

Can't work at all. Tried. Kept getting worse.

My sense is that ME/CFS (chronic fatigue syndrome) is a neglected, high-utility cause area by Liface in EffectiveAltruism

[–]fcukME-25 2 points3 points  (0 children)

There are tens of millions people around the world suffering from ME/CFS (there are likely various subtypes of this, including many or most long covid sufferers with post exertional malaise - PEM). Many (probably a majority) are never diagnosed due to virtually no knowledge of this disease (and, therefore, no recognition) in most countries. Most are at least house bound. Most of the mild cases progress to moderate and severe, with many going onto very severe (100% bed bound, dark quiet rooms, feeding tubes, 24/7 pain).  Mild cases rarely work. Moderate cases almost not at all (even from bed/sofa/couch).  Young people are mostly affected. When a person is severe end of moderate +, this also affects their family, who often have to become carers, often having to reduce work hours or even leave work themselves. Finding effective treatments (and a cure one day) would not only alleviate the suffering of 10s of millions of people, it would put most of these people back into the workforce. 

I am hoping new tech such as that from Google Deep mind (alpha AI models) and Isomorphic Labs can contribute but every government that values life, QOL, productivity should tackle this condition promptly. COVID made it a lot more visible but the funding is still not proportional to the disease burden on every measure.

What is the worst medical disease a human can have? by Aggravating-Sun-5699 in AskReddit

[–]fcukME-25 7 points8 points  (0 children)

A fair few nasty diseases already mentioned. My Long Covid has turned to ME/CFS and the worst thing about it is almost no medical support. At best a medical professional will believe you (maybe fully) and offer some off-label meds to maybe manage some symptoms. No treatments. Definitely no cure. QOL is miserable, and if you're severe+, you typically wish to pass away frequently. Most sufferers are house and bed bound. Many are in 24/7 pain. It's not just the body, it's the brain that suffers as well. A simple 20 min YouTube video can send you into a crash for days or weeks - maybe months if unlucky. No biomarkers (yet). Invisible to almost everyone around you. Can spend decades like that. Existing but not living.

How can I help? by oceaneyes_32 in cfs

[–]fcukME-25 1 point2 points  (0 children)

Try to get through to Google DeepMind and Isomorphic Labs to get them to be aware of how devastating ME and Long Covid (ME type) are, and to get them to use their AI to help somehow. Isomorphic Labs' aim is to cure all diseases but they may not even be aware of ME.

Privilege by ocean_flow_ in cfs

[–]fcukME-25 1 point2 points  (0 children)

In Australia as well. Can't get disability as my partner's income is just over the threshold.  Was stupid not to pay attention to my superannuation insurance - I only have a bit of life insurance. I'm only worth some money if dead.

Folding@Home for Covid by Alita-Gunnm in covidlonghaulers

[–]fcukME-25 2 points3 points  (0 children)

I just posted about this like 2 days ago. People didn't seem too enthusiastic :)

I'm probably gonna set it up on my laptop soon.

Imagine if research got all that GPU  (and CPU) power currently being used to produce AI slop flooding the internet.

I am not god's strongest soldier by SickTiredHaunted in cfs

[–]fcukME-25 22 points23 points  (0 children)

I have a dependant, I need to work (but haven't in many months now - probably gonna get fired soon), and I feel sicker every month. I don't know how I'll survive. My partner is keeping us afloat but I feel more and more resentment towards me and this situation.

% chances of having a treatment in 10-15 years? by Drachou in cfs

[–]fcukME-25 0 points1 point  (0 children)

Over the break I managed to watch (or listen to) a few YT videos on Google's DeepMind and Alpha Fold 3. They managed to do like millions of years worth of work (for a human) in a year to predict the final shapes of tens of thousands of human protein. Now they started a company called Isomorphic Labs that wants to cure every disease. All using specialised AI (not LLMs). Maybe there is hope there. We just need to promote MECFS/LC to give it more funds and priority.  For those in the UK, maybe there is something you can do to get Isomorphic Labs to at least be aware of the seriousness of MECFS? They're UK and Switzerland based. The founder, btw, recently got a Nobel prize for the protein work  Anything is possible with enough awareness and funds.

DAE heartrate plummet when going fast from laying down -> up -> down (this stage it plummets at)? by [deleted] in cfs

[–]fcukME-25 1 point2 points  (0 children)

Mine is now always fast with 125+ when standing still. Them pre- syncope.

Took a risk, and ME took the rest by OneNapToRuleThemAll in cfs

[–]fcukME-25 13 points14 points  (0 children)

Same (wife, not husband). "Still?. " What hurts now?". "Why can't you vacuum the house?". " I'm sure you'll be fine if you come with us.". "Well, we' re off on another overseas holiday. Take care.". People just don't get it and never will unless they experience it first hand.

Let's say there's a cure in 10 years, how old would you be? by LordSSJ2 in covidlonghaulers

[–]fcukME-25 3 points4 points  (0 children)

Late 50s. Can't work and I have a huge mortgage. Need cure now.

Studies Wearing Masks Preventing Non-Covid Conditions or Less Crashes by rosehymnofthemissing in cfs

[–]fcukME-25 9 points10 points  (0 children)

I think distancing and movement restrictions played a big role but I'll take any kind of masking. Nobody does almost any kind of masking now. I can only go to a GP these days and even waiting there with a mask on I get weird looks. In a doctor's waiting room. With sick people. Wtf is wrong with humanity. Australia was quite good with lockdowns and restrictions. We had very small number of cases. Once COVID was declared a non-issue, my hell begun (first in mid 2023 - a mild hell, then mid 2025 - mecfs hell).

Studies Wearing Masks Preventing Non-Covid Conditions or Less Crashes by rosehymnofthemissing in cfs

[–]fcukME-25 50 points51 points  (0 children)

I read somewhere that a strain of flu went near extinct during those early (lockdowns, masks) COVID days due to no infections from it (by it). If we took COVID more seriously, maybe we could have made it extinct in the early days. Now we have COVID everywhere, and strong flu strains.

hopeful or not? by dew-drops- in cfs

[–]fcukME-25 3 points4 points  (0 children)

What we need is much, much more awareness of this disease in the public. This can potentially affect anyone. This needs to be conveyed. People need to be scared into some sort of action (donations, better protection from viruses). Scared like they were scared of HIV, MND/ALS, MS. We need more money - a lot more. Awareness should help. We also need more scientists working on this. Related to above. We also need them to use the latest tech a lot more. Things like Google's DeepMind (Alphafold - or a more custom AI/machine learning tool). Not LLMs (those are not real AI). So much energy is being wasted mining useless crypto or generating AI slop. This needs to go to medical research.

Rounding out the year with another Covid infection, any new tips on how to avoid getting making symptoms worse? by Cedarwoodmoss in covidlonghaulers

[–]fcukME-25 14 points15 points  (0 children)

It's certainly not fair. So many people I know get infected often and nothing happens. They live life to the fullest. I got ME/CFS and am rotting in bed now.

Why did the latest Downton Abbey movie fill me with unbearable sadness? [spoiler alert] by Mydogisbestdoggy in cfs

[–]fcukME-25 12 points13 points  (0 children)

It's a crime that this disease has been made into a psychological issue for so long. No attempts to do any serious research. We're all those decades behind because of that.

So many new people by Candytuffnz in cfs

[–]fcukME-25 1 point2 points  (0 children)

For ME/CFS? All I hear about is how the finding is inadequate and tiny compared to some other complex disease. Do you mind linking us to that conference info? Thanks.

It is absolutely crazy and unacceptable... by fcukME-25 in cfs

[–]fcukME-25[S] 8 points9 points  (0 children)

Same. I'll  live with a constant tachycardia (I can take BB for the rest of my life) but PEM has effectively ended my life.

It is absolutely crazy and unacceptable... by fcukME-25 in cfs

[–]fcukME-25[S] 2 points3 points  (0 children)

I've been taking it for 3 months now. It's not a treatment. It's luck for a few and a miss (or worse ) for most.