The average situation living with ME/CFS?

[RobeAnJa]

I’m sorry if this is a stupid question, but I’m investigating if I have ME/CFS and sometimes it is scary to read articles and posts about the disease. I see news articles about crowdfunding for different surgeries, and stories about people who can’t talk and all sounds and light make them worse. I’m sorry but this is all new to me, as I would imagine you have heard many times before. I would think that these are the most severely ill.

I am fully aware that everyone is different, but my question is about the average person with ME/CFS, how would you say that this person lives day to day? Level of activity and health?

I searched for threads about this but could not find any.

I found some information on Me-pedia about prognosis, illness severity and recovery: https://me-pedia.org/wiki/Prognosis_for_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome

 

[Swim15]

I’ve wondered this too and how people afford to live much less try to treat themselves. I’m fortunate I’ve got a good family that’s helping out but I don’t see that lasting forever and it’s causing a huge amount of stress

 

[gbells]

Yes sensitivity to light and noise is common.

One of the common ME viruses, HHV6, makes SITH1 protein which causes depression. I think this predisposes people to it. Also, the light/sound sensitivity is very stressful and makes it hard to live in apartment complexes with rowdy, undiscriplined children that tend to be in publically supported housing. I once had a complex target me for eviction because I complained about kids yelling as they played loudly in the street outside my apartment. The parents had no interest in getting the kids to behave and be respectful of their neighbor. I ended up moving. If I didn't have legal assistance I could have lost my housing support over false charges filed by the neighbor. In general it is best never to approach problem neighbors directly as they usually retaliate with false charges. Always contact management and avoid interacting with problem neighbors. Document everything. Management has an obligation to protect the confidentiality of people making complaints so you totally avoid retaliation.

 

[Wishful]

The really severe ME cases are scary. Mine has been fairly mild. It's really reduced my ability to enjoy life, but I'm managing to continue day to day.

There might be a poll here about severity. It might help to know just how rare the really severe cases are.

 

[RobeAnJa]

There might be a poll here about severity.

Thank you!
Found it: https://forums.phoenixrising.me/threads/poll-how-severe-is-your-me-cfs.52320/
Also found this: https://forums.phoenixrising.me/threads/poll-about-whether-you-have-got-better-or-worse.76689/

 

[Wishful]

I'm surprised that the numbers for severe are that high, but it's reassuring to see that very severe is only a few percent. The downside of low numbers of very severe is that if it was significantly higher, ME might have gotten more research funding. A few celebrities getting very severe ME would have been useful ... except for the celebrities, of course.

 

[Rufous McKinney]

I'm surprised that the numbers for severe are that high, but it's reassuring to see that very severe is only a few percent. The downside of low numbers of very severe is that if it was significantly higher, ME might have gotten more research funding.

This is a very important question. Much more attention should be paid to disease trajectory.

From the PR poll mentioned above-

1) this is not random, so its only a hint...and a larger sampling is needed for it to have validity.

2)I would argue mild people are less likely to show up in PR...and SEVERE people are more likely to need support and would show up here.

I was mild for decades. I might not have called it mild- when I was enjoying those episodes of illness, collapse, symptoms blowing up etc.

so its possible to be mild for decades, and I worked full time for a whole career with MECFS.

But I got much worse- rather abruptly. Over a few months...its possible I received a second hit- like I might have picked up an enterovirus after being an Eppstein Barr victim most of my life.

 

[nyanko_the_sane]

In my case and in people I know personally, ME/CFS symptoms can get worse over time. I find that I spend more and more time in bed. This of course leads to all kinds problems in itself. An inactive lifestyle is never good. I like to tell friends I am training for an interstellar mission. So NASA come research us!

 

[Rufous McKinney]

So NASA come research us!

I listened to a presentation by the NASA expert on- going without gravity. She was very focused on the most important exercise we do- simply standing up, against the force of gravity.

I am fortunate I'm able to be up and in a chair quite a bit. And then later I seem to want to collapse on any available surface...the pull of gravity- I feel it. But meanwhile, if you can Just Stand Up....

thats something.