taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
@Kati I hope you reconsider. Getting patient care, for me, right now is even being able to get a doctor to see. Any doctor, not even an ME/CFS doctor. It is legal for doctors here in the U.S., GPs, cardiologists, rheumatologists to refuse any treatment at all because a patient has CFS. That is, I can't get treatment from any docs right now (not ME/CFS docs) for my co-morbid conditions or even get a check-up from a GP, because docs are allowed to refuse me treatment on a problem unrelated to ME/CFS, just because I have ME/CFS. Asking for docs not to refuse treatment is patient-care. If you and others can see any doctors, for OI, for a check-up, for something that flares up, consider yourself very lucky.
oceiv. I do understand where you are coming from with this, it is the same here in Australia with doctors refusing to see or treat you if they don't want too. I was turned away from so many doctors who told me that they did not want me as a patient (the worst the ME, the more doctors do not want anything to do with you).
I saw OVER 30 different doctors (over many many years) and NONE of them would even try to treat common ME/CFS symptoms (my sleep issues etc were all left even thought at times I was going 3 whole days and nights without sleep till I was hallucinating). My last two doctors which took me on ONLY did it cause I had a ME/CFS specialist involved by then recently thought, I'm back to no doctors again as my doctor moved and I ended up in hospital again going that far to see her. Most of my ME/CFS conditions, some treatable ones, go untreated.
With all this being said I have though also experienced that "bad doctors" or ME/CFS nieve health professionals, these are often worst then having NO doctor. There are huge factors involved in getting patient care for ME/CFS patients. There are steps which need to take place first before that can probably happen eg maybe we should be demanding better doctor education on ME/CFS and for our condition to not be being left out of most the medical text books (thing is I'd worry that they also would put GET and CBT in it as the top two treatments and that then may influence doctors for a long time).
How do you propose that better patient treatment is done? Is that something whoever gets the petition calling for better patient treatment is going to understand?
(maybe there needs to be a separate thread for each common goal to be discussed)
Maybe calling for a better support system in place for severe disabled ME people would be a more successful thing then calling for better medical care?? (Ive not a clue as I don't know how the American disability system works)
......
I like the asking for an apology idea but the thing is while GET and CBT are still being recommended as top treatments by the other report, I doubt we could ever get one at this point of time.