As someone who has a milder form of ME/CFS I can understand the frustration that the moderate/severe crowd feels. Someone with mild-CFS/ME who can still drive or travel or work or study to some degree probably has more opportunity to get their stories into the media and they inadvertently might make the disease look less serious than it can be compared to someone is housebound or bed-bound.
I've been well enough to be able to travel to the USA for a few weeks to see a CFS/ME specialist and able to rent a car and travel around somewhat and then visit Miami while I was waiting a couple weeks for my test results to go through.
At Miami I was able to stay at a Hostel, do a few tours, enjoy the beach and even go to a couple of nightclubs but the entire time it was still completely obvious to me that I had far less energy than the rest of the tourists passing through the hostels. I'd have to rest throughout the day and the evening if I was going to visit a nightclub and even then after a couple hours on my feet I'd feel weak and end up sleeping in way later than anybody else in the Hostel. I remember getting up to go on a tour bus to Quay West and then feeling so tired on the bus that I slept almost the entire 3.5 hour trip even across the famous bridges which I'd always wanted to see. Having to go to sleep when other tourists begging me to go clubbing - people that had been doing that several nights straight with no punishment other than a short hangover.
Whereas I felt like a 70 year old. Well enough to get involved in a few things but only just. Was I able to blend in well enough - I guess so but my lack of energy would quickly become apparent to anybody after I'd gotten to know them well enough.
I can imagine that some would think from this that I don't have real ME but my condition getting to this stage took a lot of study and a bit of luck. I did not get any reliable improvement until I started B12 injections 18 months ago and got lucky with some antibiotics. I had very little help from doctors, every treatment that has helped me I've basically had to research and request from practitioners.
But before my B12 improvement it was horrible.
I couldn't understand why I could no longer walk without feeling exhausted, let alone exercise. I remember one day trying to do a few laps around an oval and the next morning feeling almost paralyzed with weakness. It took days to recover from that and I found that on many days all I could manage was walking around the block once. Many times I remember waking up and dragging myself to have a shower and then flopping onto the couch in complete exhaustion and not even having the energy to have an appetite.
Too tired to eat, too tired to sleep, too tired to walk. I tried other activities like prospecting and found that camping in arid areas would alleviate most of my symptoms until I returned back home. I remember at the club meetings trying to standup and talk to people when I felt so weak I was about to collapse. It seemed like my bones had turned to liquid.
I remember being unable to stand for more than a couple minutes at a church service and nearly having an accident trying to drive home afterwards when I drove through a Yield/Give Way sign without stopping because my brain fog was so bad I could barely process the information required to drive a car and didn't even see the sign.
I suppose I am fairly lucky compared to most with ME/CFS. Maybe because I lost my job soon after I got sick and didn't have the stress of trying to cope in a demanding job. Or maybe because of my background I researched as much as I could until I read about B12 injections - this was only possible with the internet - I'd shudder to think how I would have coped if I lived 30 years ago and got this as there was no Phoenix Rising. Perhaps I also got lucky finding out that camping in the desert seemed to alleviate symptoms giving my immune system the occasional holiday. Or maybe because we understand a bit more about the illness now it is easier to get specialist help than it was 30 years ago - at least in the USA...
So yeah the grass is greener here compared to someone housebound or bedridden but the grass looks even greener in the lives of the friends I no longer have because they wouldn't understand what it's like to have this illness. Friends from years ago that have moved on, gotten married, advancing in careers, having children, buying their first house....
And me well I'm basically back to where I was at 18 out of school with the last 12 years of study and work largely coming to nothing. Being out of work for a couple years and in a really tight job market means that career wise I've lost the best years of my life. I've also lost all the social networks and nearly all my old friends which as you get older gets increasingly hard to replace. So I have to face the reality that I may never be able to get married because I probably cannot meet another persons expectations.
So having mild ME/CFS is nothing to celebrate about. I can understand that I have no real comprehension of what is like to be in a state of permanent PEM and confined to bed for months but the illness has swung a wrecking ball through every aspect of my life so even for someone with mild ME/CFS life isn't a walk in the park and it's not enviable. In fact family see me able to do things and they automatically assume that there's nothing wrong with me so that adds to the pressure and stress on me from family members that just don't get it. People can't understand that I need about 11-12 hours of sleep a day just to be able to function the rest of the time.
The amount of sleep I need to function semi-optimally seriously cuts out a lot of the activities that a healthy person can engage in and does significantly limit your opportunities.