The Murderer's Brain vs ME/CFS(via SPECT)

Discussion in 'Fibromyalgia Main Forum' started by mindblower, Sep 24, 2008.

  1. mindblower

    mindblower New Member

    Hi, all.

    Functional lesions(holes) and hypoperfusion in the brain are a part of ME/CFS pathology often found in the right dorsolateral prefrontal cortex(DLPFC), right basal ganglia, and thalamus using SPECT imagery(as opposed to MRI scans that cannot show these). Here's an interesting interview with Dr Amen discussing the functional lesions found in Murderer's brains, which illustrates the point that such hardware issues are important to identify in order to provide effective treatment:

    Also to pass along, as I know many with ME/CFS don't have insurance that covers having SPECT done, is a non-profit organization committed to helping those in financial difficulty obtain it for free as needed and prescribed by your doc. It's called the Recovery Assistance Program that can be reached by calling 714-560-6120.


    [This Message was Edited on 09/24/2008]
  2. monicaz49

    monicaz49 New Member

    Great info mindblower..thx

    but how do you convince a doctor you NEED Spect?? Its not a diagnostic tool.


  3. mindblower

    mindblower New Member

    you asked, " do you convince a doctor you NEED Spect?? Its not a diagnostic tool..."

    Well, first of all, let go of the idea that docs limit themselves to testing only when they have a diagnostic test at hand. That's simply false and there are often tests done for different conditions that are not diagnostic yet do help create a clearer clinical picture to help guide treatment.

    This would be the purpose of SPECT in ME/CFS, not to forget it could help silence a psychobabbler doc/family/friend "support" system into getting CBT or talk therapy(addressing software issues) may not cut it for your actual hardware problem. Also, bringing your doc a copy of this discussion, including the link to Dr Amen's interview, wouldn't hurt.

    If push comes to shove and doc still doesn't comply with your request for SPECT or any other well reasoned test for that matter, then find one that will. They're around and it's your health.


    [This Message was Edited on 09/24/2008]
  4. mindblower

    mindblower New Member

    "re do u think it could be useful? i mean for tx indications etc, do u have any personal examples?"

    Check before and after treatment brain scan examples, review Mena and Goldstein 1993 ME/CFS SPECT study that can be found in his published books as well as by googling him online, and review ME/CFS research studies using SPECT.

    A PET scan, very similar to SPECT, of my brain showed assymetrical bilateral hypoperfusion of the thalamus(thalami), which is linked to chronic pain and central fatigue. No one knew of this link at the time I had the scan done, but now it focuses my treatment process without wasted motion on all the "headfake" experimental snake oil treatments surrounding an ME/CFS diagnosis.

    [This Message was Edited on 09/25/2008]
  5. mindblower

    mindblower New Member

    Get a SPECT done and go from there regarding treatment. EEG doesn't cut it for this purpose.

    Stimulants may be good for one person, lousy for another, and in many not produce results that stick. This sort of process risks wasting a lot and missing a lot.

    Given the high rate of treatment failures(including many CNS meds.) within the ME/CFS population, it's wise to narrow treatment focus and eliminate nonsense suggestions with good data. And now this non-profit for accessing free SPECT allows for more of exactly this.


  6. acer2000

    acer2000 New Member

    you asked, " do you convince a doctor you NEED Spect?? Its not a diagnostic tool..."

    Dr. Amen is using for exactly this purpose. And in head injury and ADD he seems (at least to the outside observer) to be having a lot of success in targeting therapy. Sure beats trying a bunch of drugs and seeing what sticks (which seems to be the current best effort by the psychiatry community).

    WRT CFS, who knows...

    I think QEEG is relatively worthless for CFS. Its not specific enough, and the only treatment that is ever used in respone to it is EEG biofeedback which in my opinion is dangerous for someone with CFS. Maybe in ADD/ADHD its more accurate and a better treatment modality...[This Message was Edited on 09/25/2008]
  7. mindblower

    mindblower New Member

    "...but hey if you lived in the midwest where would you go for spect? fly out west to an amen clinic or anyone known to do a good job on it in mw?"

    SPECT is ubiquitous to major health care centers anywhere. Flying to one of the Amen Clinics in California, Washington, or Virginia too for that matter is not a bad idea, though flying is more problematic for some.

    From what I know Amen is signed on to do SPECTs at no charge when you go through this non-profit. But another option might be to contact them and let them know the hardship of traveling outside the MW as they may have alternate solutions for getting a good SPECT at no or reduced cost for those not near an Amen.

    [This Message was Edited on 09/26/2008]
  8. mindblower

    mindblower New Member

    Call the Recovery Assistance Program people(ask for Laura) directly.

    Phone#: 714-560-6120

    They(She) might know more than Amen itself in terms of all options for getting a brain SPECT for free or at least covered by what insurance you do have no matter where you reside.

  9. mindblower

    mindblower New Member