Question I would like answer from researchers and Doctors

[Seven7]

This is a thread to ask researchers and doctors, maybe we can inspire research topics and Things that are the most prevalent concerns as a community. Please like if somebody list your issue instead of listing it again, so we make this easy to read.

1. Can my kid get CFS/ME? what to watch for? Tests I can do for her?
2. Why so many people develop OI and if there is standard treatment for it, why does not more CFS people get offer the regular treatment?
3. Why when we first fall sick / or relapse we get costochondritis?
4. Why can't I rehab my aerobic threshold no matter how much I try to re build it (properly and with medical help). Will I ever be able to increase it?
5. If patient say he is tired, why the doctors don't check the metabolic state of patients? I have never been tested for all the mitochondria inherited disease, why?? Specially if I have family history of bizarre symptoms.
6. Why I have good days and bad days following the exact same routine (I am an extreme from bed ridden to be able to function normal). Can't you study me or people like me as an individual and find the issue/???
7. Why do I get burning on the spine and in the brain.
8. If Inflamation is so obvious, why aren't we offered anti-inflammatory drugs during a crash to avoid deterioration like the MS people get offered.
9. Why don't they find out what is the best thing for the ER to do with us when we go desperately to the ER feeling so bad. Have a standard things we do to better a crash on the ER or stabilize us.
10. Some people claim they can infect other people, why not try to follow on those people that get newly exposed by this group?
11. Why do lymph nodes get painful if there is not an active infection? Why not to biopsy the lymph nodes that are often giving you problems?
12. Why don't we study dead ME people. So we can get anywhere to test whatever.

 

[ChrisD]

Is 3.Costochondritis common in all ME patients? I suffered this very badly at the start of my ME but I put it down to a suspected Bartonella infection.....

 

[Seven7]

Is 3.Costochondritis common in all ME patients? I suffered this very badly at the start of my ME but I put it down to a suspected Bartonella infection.....

That is a good question why is in my list (in case the infection is on soft tissue for example). Or is it a subgroup based on the triggered infection? I have the feeling that a lot of symptoms will depend on the reactivations of the patients, so the symptomology of CFS will be Chore symptoms + whatever symptoms per reactivation. And maybe if we identify those, we know which viruses reactivate per symptoms. Or might be present on all patients and is a sign of the infection site?!! All good questions.