It’s been going downhill for quite awhile.
Getting an appointment is a matter of waiting, and their advice should your symptoms worsen is “go to the ER.”
As far as doctor’s misdiagnosing or giving bad advice, that’s also been around for awhile: I’ve had MS for 20 years, but when all I knew was that my legs didn’t seem to be working right...the first 3 neurologists I saw offered these diagnosises:
1. It’s menopause. (I was in my early 40’a)
2. I didn’t exercise enough, and needed to walk more.
3. I wasn’t paying attention to my gait and needed to pick my feet up when I walked.
Finally ended up in the ER and couldn’t walk at all...then they decided it was neurological and the investigation turned toward that.
I have to see doctors due to my disease and complications associated with it. Do I trust the doctors to have the answers and to know what to do, not really. So you have to be your own advocate, do your own research, and then make sure you have a doctor who’s willing to listen and work with you, and treat you as an individual.
I went out on SS disability with CFS 16 years ago.
But 10 years ago I was worked up by a neurologist for MS because I developed spasticity in my arms and legs making him think I might have the late onset type of MS called primary progessive (PPMS) that men tend to get more often than women after age 50.
Unfortunately, I have read that in many cases this can be conclusively be diagnosed on autopsy!
In the meantime, for the past ten years I have been taking 40mg of baclofen/day (10mg every 5 hours) just to be able to keep moving my arms and legs smoothly).
This probably has nothing to do with my ME/CFS as it is not normally associated with ME/CFS.