Also, they didnt' do any brain scans, which i thought was very strange. I want to get these things done but I'm not even sure if it'll help me.
I actually was admitted for presumed MS/POTS. Tingling/numbness is one of my biggest symptoms.
Weird ... a brain scan should be done to rule out MS. But once a certain type of doctor gets "CFS" into his head as a possible diagnosis, they might stop biomedical testing entirely. They believe that testing makes us think we're sicker, and that any abnormal results are probably false positives anyhow.
They pushed central sensitization as a main theory really, really hard. They said that most diseases will inherently cause some kind of abnormal response in the brain and therefore lead to more symptoms.
This is, at best, a vague theory with no evidence supporting it. Basically they start from "we can't find the cause of the symptom" then immediately conclude "your brain is just making you think you have symptoms even thought you're fine." It's superficially a little more biological than the previous (now disproven) theories used to bridge the gap between symptoms and the use of CBT to treat them, but it's just as nonsensical as the rest.
The best demonstration of this in the case of ME/CFS is that we have a lot more going on than pain or other sensitivity. How would central sensitization cause PEM? Or OI? Or swollen lymph nodes? Or ataxia? Or muscles giving out? It's completely absurd, yet ME/CFS is one of the diseases for which they push the central sensitization theory the hardest.
I'm looking into Vanderbilt next.
I'd suggest going with an ME specialist. If you can't get support for that, then at least go in with a list of demands for what you want tested with a non-ME specialist. No brush offs allowed! And always get a copy of all of your test results. Some doctors won't understand abnormal results, so won't say anything, and others will be convinced that abnormal results are a false positive.
Do I believe there is a place for CBT and GET with ME/CFS patients....yes.
No. Maybe real CBT, but not the symptom-denial bullshit that is the topic of discussion in this thread. And I have never heard of a patient needing GET to become more active. We naturally become more active when we can be. The bigger problem is preventing ME patients from being more active than their body can handle.
I also still can't wrap my head around the lumped untreatable conditions.
They believe that all of those conditions are psychosomatic, or have a large psychosomatic component causing some or all symptoms. Hence they see it as one illness, but with all the crazy people imagining different physical symptoms and having different diagnoses as a result.
But psychosomatic theories have an abysmal track record. Many have been disproven over the years, and none have been proven to exist. Peptic ulcers used to be caused by stress, but are now cured with antibiotics to kill the bacteria responsible. MS used to be the disease of hysterical housewives. Autism used to be caused by unaffectionate mothers. AIDS used to be caused by the stress of the gay lifestyle.
Now that technology and knowledge have evolved, these examples of supposed psychosomatic illness are shockingly ridiculous. It's even more ridiculous that ME/CFS is still being seen as psychosomatic, when basic and mainstream tests objectively prove PEM, OI, immune dysfunction, metabolic dysfunction, etc. It's completely absurd - but it's also the entire foundation of the careers of these supposedly "respectable" quacks.
And Mayo, unfortunately, is a place which is very supportive of those quacks.
