Hi Kati! :Retro smile:
What you are describing is pretty typical (I enjoy such things every day). Is it only worse when you sit up for a while? Does it get better when you lie down? Are you able to concentrate better or longer lying down? If so, it is most likely related to perfusion/ cardiovascular problems. That could include dysautonomia (POTS, NMH, etc), hypoperfusion, and low circulating blood volume.
It seems to be worse when I am up for a while, I can have OI when I sit on the couch for a short time. However I had these cognitive episodes as described when exerting myself cognitively. This is when I realize that thinking requires more blood flow in the brain. Of note I have very seldom had cognitive difficulties while laying down, or at least not as severe.
I'm glad your rheumy ordered a SPECT scan! (Mine won't! :Retro mad

That has the best chance of documenting hypoperfusion. However, because it is done lying down and (except in a research study) without any simultaneous cognitive tasks, it's not a perfect way to image deficits due to cognitive exertion and upright stance. But standard SPECTs have shown hypoperfusion in many ME/CFS patients before. Hyde has some words of caution regarding the interpretation of SPECTs (especially in Canada) and other tests which he uses to diagnose ME; they're in his "Nightingale Definition" of ME which can be downloaded from this page:
http://www.name-us.org/DefintionsPages/DefHyde.htm
Thank you for the link, never visited that site before, though I have visited the Nightingale website which is getting a bit old and stale at the moment.
I believe the QEEG (which is basically an EEG run through a special computer program for more analytical depth) is done sitting up. It may document brain wave abnormalities and even localize them to particular areas of the brain, but you would have to find a facility equipped to do it and (probably) competent to analyze the results with respect to CFS.
The only other scans I know of that could be useful are PET, functional MRI (fMRI) and Bold MRI. A PET scan looks at brain metabolism and shows you areas of relatively high or low metabolic function. Again, it would be better if it could be done while the CFS patient is given some cognitive tasks (math problems, visual puzzles, whatever). Maybe you could make some up and try them while they run your SPECT scan! Worth a try. Someone who's into math on this forum could print out some word problems for you and the technician could suspend the paper above your head... or you could just try to explain to an imaginary layperson the methodologies of all four XMRV studies...
Isn't the SPECT and the PET scan the same thing?
You're right about neuropsychiatric testing; of all these tests it may be the most dependent on the knowledgeability of the interpretor (hint: ELLIE STEIN!). It is worth a shot if the SPECT is negative, however, and is often recommended to help document cognitive disability in other conditions. Just make sure you have an understanding psychologist doing the test and familiarize them beforehand with the type of deficits seen in ME/CFS patients. (I can try to find you some links if you need them.)
Thank you for reminding me about Ellie Stein. I am making an apt with my dr so we can discuss referrals and "the next step"
I can't remember if you've had a tilt table test? If positive, that could definitely fortify your documentation about OI problems. They aren't always done right; Rowe at Johns Hopkins gives a protocol for accurate results in CFS patients that you could ask a tester to follow. There is a newer test called ANSAR that supposedly does a better job than a tilt table and checks for more types of dysautonomia, but very few doctors have the machine (mainly neurologists) and it may be considered too new and experimental by disability companies.
I never heard of ANSAR before- does it pronounce like answer? - I tried to google it but didn't get much as it pertains to our condition. As for the tilt table test, haven't had it. I have asked the rheumy and she said that it was very seldom used in one of the prominent hospital in town- It may just collect some dust.
One other idea is a blood volume test (Chromium-51, I think); if that shows the kind of low blood volume that many ME/CFS patients have, it should also help your case.
I would love to have my blood volume measured. I have asked when I had a bone scan if they were doing it (nuclear medicine) and the techs told me not anymore, they don't get the Chromium in anymore (or perhaps it is not produced anymore). I asked him how then could you correctly measure the total volume and he told me through calculations (with Hematocrit) which would be plain wrong especially in our case.
Hope something here helps...?
Everyhing helped Dr Yes, thank you so much