Thank you!
My main goal isn't necessarily treatment, moreso management. I'd like a medical professional to be able to back me up when it comes to any assistance i may need (accommodations at work/school, wheelchairs, etc.) I also hate not knowing, so i would prefer a "useless" diagnosis of me/cfs if it's correct - rather than avoiding it, or exchanging it for more treatable things. Of course, comorbidities exist, and if i meet criteria for them and they are treatable, that's a bonus lol
Basically, at this point, a doctor would help me most with a validating diagnosis [if applicable] (which would help my family believe me and allow me to have a name for this crap), and assistance getting aids that would increase my quality of life and allow me to continue working+going to school.
It is very difficult to get aid or assistance without producing any evidence of your disability. The website "how to get on (disability)" Can give you some clues, but generally, in the US, a 2 day cardio pulmonary exercise test and autonomic testing Is the bare minimum for getting this.
Not knowing how old you are, you mentioned school, it sounds like you have a lot of years in front of you and not a lot of work history to be able to qualify for disability.
It might be prudent to think about what you'd like the rest of your life to be like. Do you want to spend the next 50 years like you are now? If you do nothing as far as treatment, it is unlikely that you will improve, and you may actually get worse to the point you are bed bound 100% of the time. I don't know about you, but I find this to be not very desirable.
Working I'm going to school require sustained effort over time and the ability to show up and do what you're supposed to do and produce the required work product. This typically requires mental and physical exertion, something that is challenging for most ME/CFS patients. And even if you can do it at one time or for a while, there's no guarantee that you'll be able to do it on an ongoing basis.
We are fortunate to have this illness at a time when there has actually been a lot of research done. The vexing thing is there is no one size fits all treatment, because there are about 25 or more known problems for patients with me / CFS and each one of us has a different subset of that large number. You may have 7, I may have 12, others will have different numbers, plus different comorbidities, different exposures to viruses, bacteria, different diets, different microbiomes, different toxic exposures, different stress levels, different genetics, etc. This has made one size fits all research to cure us all incredibly difficult.
This does not mean all is lost. There are a fair number of us who have read the research and worked with doctors to investigate various problems by doing appropriate medical testing and then trialing treatments when problems are found, in many times, combinations of treatments for this complex disease. Through these methods, many of us have improved to the point of being able to have a somewhat normal life. Not all of these experiments are successful, nor are they necessarily easy to come by, an educating ourselves on the science, and being persistent and finding and working with doctors who are curious and committed to helping us has paid off. These are complex illnesses, but treatment is possible, and the time to pursue this treatment is before one is in such bad shape that coming back from a cascade of difficulties is not as horrifically difficult.
As for your family, there is now a large body of information on this illness that you can share. I would look up the US Institute of Medicine / National Academy of Sciences 2015 report on ME/ CFS I'm sure the summary and diagnostic criteria with family. Another good resource is the recent ME/CFS Clinician's Coalition document for doctors and the recent Mayo Clinic proceedings discussion of ME / CFS. You might also look into what the NIH has been doing to study ME/CFS and how they are now studying long covid in comparison to ME/CFS. It is a very real disease with devastating consequences.
Good luck in finding help.
