I'd like to say that for most of us, much of the research out there we cant make heads and tails of it, eg I was in a study 7 years ago and once published, it was too complex for me to understand it,I couldnt even get throu reading it. Ive followed ME/CFS research since the early internet days (I got ME/CFS 17 years ago) and I still cant make sense out of half of the studies out there thou I had a very good education (I got sick half way thou a 4 year diploma which included medical subjects). If your brain still can make sense of everything you are reading, you are very lucky. You also being already a researcher would be far more able to understand the research then many of us (expecting the very sick to suddenly become researchers?). Much of the research out there too is so complex even my own doctors cant make sense of it. Expecting very sick ME/CFS patients to be researching themselves is a bit much. I think you have very little idea of just how badly this illness is for many.
If what I said is irrelevent to what you've said, its cause Ive got confused on what has been said due to how my brain has been affected. Just trying to remember what Ive just read in your posts and reply to it, without quoting the parts, is hard for me.
Secondly. MOST of us cant get the tests we'd like and know we need. We arent doctors and hence we cant make the more naive doctors who dont know as much as we do about this illness test us. I have severe POTS and spent 6 yrs trying to get a tilt table test (I still havent had one). Ive seen 30-40 different doctors in the years Ive been sick (many of them specialists). Drs generally do not know what to do about me and refer me on.. I get refered on, refered on, refered on. Ive had to work out so many of my own issues, I had to do my own poor mans testing for POTS and then convince a dr to give me treatment for it (thou drs still havent tested me for it).
Its a case here of a very sick patient having to manage her own medical problems (im sure there are many of us having to do that at this site), both in diagnoses and then telling the drs how it needs to be treated. (the drs dont get time to do research of their own.. Im alone). I even had my severe orthostatic hypertension ignored eg sudden BP spikes of up to 170/138 as the doctors wouldnt listen enough to test me when I was standing up and kept insisting BP is only taken when someone is sitting (now its happening when Im sitting too so finally a dr the other day when to her shock saw my BP was 178, told me she was refering me to a specialist for my BP dysfunction.
Note Ive had this issue Ive been just trying to help myself now with the BP issue for 7 years!! no thanks to drs who wouldnt even take a standing test result expect one who did after I'd bugged him for 4 years to take my BP while I was standing and then freaked at seeing what my BP does in 1min of standing when he FINALLY listened to me and who refered me on to yet another specialist, a specialist who didnt believe the drs letter and didnt know how to test orthostatic issues and just went "that isnt possible" .
Note that was a professor at my cities main hospital who specialised in autonomic issues and then kept saying I didnt have pure autonomic failure (which I already knew!!) as my BP instead would be going up when laying down and not standing. She then (not really expecting an answer) asked me to explain to her how my BP would be going up high on standing (and thou I'd researched all that, I forgot with my bad brain so couldnt explain it). So I was back to square one. untreated severe unusual potentially lifethreatening issues with no doctors listening (unfortuantely the dr who had finally listened to me and seen it for himself and had refered me to that professor, he had a stroke so I couldnt get back to him).
I even took info in to the professor from a well known dr overseas who specialised in orthostatic hypertension in ME patients (Dr David Bell) but the professor said that wasnt right and just kept insisting I couldnt have issues like this going on "its not possible, its not possible for a POTS patient to also have high BP" doh.. hyeradrenalic POTS patients do commonly have high BP. The lack of knowledge coming from a professioner in autonomic dysfunction was astounding. (Its very likely due to your occupation, you could find drs etc paying more attention to what you say then what the average ME/CFS patient experiences with drs).
I also currently have the issue where Im having no treatment management (thou Im on drugs which are supposed to be monitored) as I cant get to any of my specialists as I dont drive and I cant take public transport and I dont have enough help to get places (I collapse with my autonomic dysfunction). Your post came across as making it sound like patients themselves are sick due to not doing the right things.. for many of us we are simply STUCK. Stuck not having doctors who know enough about this illness, stuck with doctors who wont read the info we take in to them about it, stuck cause we cant even get to good doctors. My condition is in decline.. cause day by day Im overdoing it just to do the necessarily things in life as I cant get enough support and arent getting the treatment I need.
I can not fly to another state to see a more knowlegable dr (last time I fly anywhere alone, the airport security was called as they tried to kick me off the plane, I was looking so sick ..struggling just to hold my head up and tremoring and spasming badly.. near a seziure that they tried to refuse to fly me but I refused to get off.. it was a nightmare and I made the plane very late).
Yes Im sure wrong info is giving here at times (one wouldnt expect it to be 100% right at a website like this) but I'd like to point out that the quality of info here in general is generally very good if I compare it to the stupid things Ive heard coming from drs mouths and out of other mouths of the general medical people and of places like the CDC in which exercise is recommended for ME people (their website is better then it was, still not good enough thou and not helpful for those like myself).
A dietian I'd been refered to one time (after this I never went back to her) told me that ME/CFS is caused by us watching too much TV. (I was too sick to even watch TV for a very long time and didnt even have a TV or computer for years). An Occupational Therapist made me much worst.. after her help and advice I was left again not even able to feed myself with a fork.
Anyway.. compared to what Ive experienced elsewhere.. generally the advice here is very good and Ive found better then the advice Ive got from the medical profession who have greatly endangered me and not only not been helpful much but at times have made me worst (I ended up with a prolapsed bowel after being given a drug commonly used in ME/CFS for sleep but this drug had the physiological affect of slowing down bowel peristalisis when I already had IBS-C due to the ME). Is it my fault I didnt know what physiological affects on the body drug does cause I didnt research it? I found out by wikipedia only after it gave me the bowel prolapse and I was then due to that needing enemas daily (so yet another specialist then had to end up in my care). Its isnt ME/CFS patients fault not knowing these things but drs themselves with not doing enough or being careful enough with this patient group. I dont know about your case but I get OVER 90 different symptoms with my ME and can only research so much!!!.
If you see something being said as wrong... you should post and say so. People are happy to get good info. I hope you hang around here if your experience ends up showing you that you are wrong. Sometimes this illness even if one is onto it from the start, isnt so easy to fix. (Many of the things going wrong can be very hard to find * and with such a dysfunction system, what is happening one day may not be happening the next and doctors just do not look for many things).
eg I'll give you just one example of something which someone could have issues with but which would be missed in most (I have many issues which have got missed for the 17 years since I first got ill). eg I have molybdenum deficiency (an essential trace mineral. We are supposed to get that from diet but in my own case I have a gene which affects it.. I I suspected this gene issue so had DNA testing done which showed I was correct and do have the gene issue). I knew I was deficient in the first place throu a hair test (which I know you probably wouldnt believe in)and due to the result of the hair test, I then supplemented it. I then had a 30% improvement with my brain, I hadnt been able to do maths in my head for many years but within 5 days of supplementation of it, I could do maths in my head again.
If you really want to get well you may have to keep an open mind and be open to things you would of previously never considered, as these can lead to knowing other things to look out for which can get backed up by proper medical testing. Most of us are not just researching accepted medical things to improve but going one step further to try to make sure no stone is left unturned one could say. If we are still sick, its certainly not at all due to a lack of trying. Some of us may never get to the bottom of all our problems till science improves more or drs become far better at dealing with ME/CFS. (even our best specialists have lots of ME/CFS people they cant help much).