I went through the same thing. I'd want to do exercise - partly because this was when they still believed it would help our condition - and no matter how gently I eased into it, I would always suddenly (with no warning) crash. I've since learned that despite the guilt and wish to do more, it's best to just go with the flow, even if it is downhill, the decline is only going to speed up if you try to push yourself.

cmiat, thank you so much for replying! That helps me a lot. I was operating under the assumption that doctors still recommend "graded" exercise for CFS treatment. Apparently they no longer do that? That just sets me free. And it's so helpful to hear your experience. I can cope from day to day without feeling that guilt hang over my head. Thank you again.

The treatment of CFS with GET and CBT was adopted mostly because of a large study done in the UK called the PACE study. It has since been shown to be not only flawed, but the data deliberately manipulated to get the results they wanted. Unfortunately, not all doctors have caught up on that fact. I had to tell my own doctor about it and give her links to articles about it. I can't give them to you now though, since I no longer have them. A search would turn the information up if you're interested though.

Mind you, many people do find CBT helpful - myself among them. Not as a cure for the fatigue - which it can't do, since this isn't a psychological condition as many still believe - but as a way of learning to cope with the loss and depression which it commonly causes.

Yes, I've had depression most of my life and CBT helped that but it didn't help my chronic fatigue.

I have exercised in some form or another all my life... until CFS. I used to try, but I've given up. I'm not opposed to walking to the corner and back - about a 7 minute walk. But not the same day that I have to cook a meal or run an errand.
What I'm wondering is where did you find a doctor to help you? I've spent hours trying to find a doctor for this. I do have a doctor who acknowledges this, but doesn't have any suggestions except hormone therapy - which is now normal.

I have a small rebounder and a small stepper - will do like 50 small bounces on rebounder lean on one leg then the next- feet dont leave surface.
My well meaning - but delusional son gave me a Fitbit ..(.to get me moving!)
Know you are supposed to do 10,000 steps- my neighbor brags that she does 17,000! I did 6,000 a few times- usually 2-3.
It does help- as I can push to the next 100 in a minute on stepper or rebounder.
If you can do a minute here and there it does trick the cfs monster- I'm on and off the stepper or rebounder before he wakes up and sees me there! I feel like it's the giant from Jack In The Beanstalk- Fee- Fi-Fo- Fum...I smell the blood of an Englishman!!!!
Gotta go on and off quick- exercise benefits are cumulative. You can get to 30 mins and have lots of steps.
I have to move, I have lymphedema in my right leg.
Also get breathless so easily- have to build up my lung capacity.

No exercise is something I wouldn't ever consider. I refuse to just consider.
Days I can only do 30 seconds at a time. Just do it more times.
Try it or a couple of laps around your living room- or around your house- whatever works in your life

Good Luck!!

Marilyn

Thanks Marilyn! I do try to keep exercising. My problem is I just get so wiped out I can't make myself do anything but maybe I should try anyway. Probably every little bit helps.

Actually, every little bit pushes you further into danger of a permanent decline in your condition. I struggled with it for a long time, thinking the same as you but have learned the hard way. Trying to push yourself when your body isn't up to it only makes things worse in both the short and long terms. It's true that my current condition - which is to say almost completely housebound - was due to a very stressful situation that lasted months, but it's demonstrated to me that pushing through NEVER helps CFS.

I don't do any dedicated exercise, but I do housework. I have a schedule, Monday do this, Tuesday do that, etc. (Sunday is rest day). While doing the housework I do as much as I can standing until my heart rate goes up and then I sit on my rollator til it calms down and do the rest from there. I started this back when I learned about the MECFS anaerobic threshold. It's the point (theoretically and anecdotally) when you should stop and rest so you don't end up with PEM. After years of pushing and then crashing for days I had to accept that I'd rather do little bits all day than lots and then nothing. It's frustrating to take 2 hrs to mop the 800 sq ft of hard floors we have instead of pushing to do it in 15 min, but, if I do it in small sections I can live to fight another day as they say. Better 2 hrs to do the floor and then have the energy to fold clothes sitting watching my "story", rather than 15 min of pushing (or any exercise that gets my heart pounding) and crashed in a dark room the rest of the day. If I had one and only one piece of advice for pwme (people with ME) it would be this. Slow and steady wins the race. Here are some links to anaerobic threshold. There's lots more out there. Do bear in mind that each person's threshold is individual and the numbers they give are general. My base heartrate when up and moving is 68. My threshold is 82 which is very close to their calcs but your experience may vary. Wishing you peace. https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/ http://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope#:~:text=The%20anaerobic%20threshold%20(AT)%20is,calculated%20as%20220%20minus%20age.

A month ago I saw my general doctor (who does not know much about ME/CF. She suggested that I do a few leg lifts. I am in a wheelchair and did 2 legs lifts (from the knee), then after 3 days I increased to 3 leg lifts per day. This is about as slow as is possible. I felt encouraged! Then I crashed for 2 weeks. So OK! OK! OK! I won't do any more exersice. (OOOOOOOHHHH!!! I can't spell anymore). I've been sick all my life, I'm 70.

A month ago I saw my general doctor (who does not know much about ME/CFS She suggested that I do a few leg lifts. I am in a wheelchair and did 2 legs lifts (from the knee), then after 3 days I increased to 3 leg lifts per day. This is about as slow as is possible. I felt encouraged! Then I crashed for 2 weeks. So OK! OK! OK! I won't do any more exersice. (OOOOOOOHHHH!!! I can't spell anymore). I've been sick all my life, I'm 70.

I am new and I find exercising to be draining. I noticed since 2018 whenever I try to exercise I get sick. House chores are getting harder to do. I find setting a 10-15 minute timer to do and then setting a 20 to 30 minute timer to rest helps a little. But by the end of the day my body screams. I am finding that sitting up for an hour on the computer or desk is painful hard. My body keeps screaming in pain. Yet when I have a good day no pain but if I try to do too much I reverse. I am going around in circles