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Doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'

Discussion in 'General ME/CFS News' started by Firestormm, May 17, 2014.

  1. Firestormm

    Firestormm Guest

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    leela, Sushi, Esther12 and 11 others like this.
  2. alex3619

    alex3619 Senior Member

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    Thanks @Firestormm. It looks like an important alternative diagnosis, not the least because its treatable. There have been discussions about this kind of thing in a number of threads though. However if it was more often found, diagnosed, and treated, then many thousands would be better off.

    There is something important here that might be overlooked. With up to 30,000 cases per year, and misdiagnosed, there could be over 100,000 such cases, easily. That might account for a big chunk of the non-ME CFS diagnoses!
    Last edited: May 18, 2014
    leela, Sushi, SOC and 2 others like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    oh boy, not another common missed diagnoses thrown into the "CFS" washing machine.

    I think we need a list of alternative diagnoses each with a link to a story backing each one (like this article) so people can more easily go throu the alternative diagnoses list and work out what they may or may not have. We cant trust our doctors to do this so its simply up to us to try to make sure all this other stuff is ruled out.

    This is especially important to those who arent showing the common ME abnormalities on their test results! I refused to accept my own possibly ME diagnoses until I had 3 of my test results showing common ME abnormalities. I suggest others do the same as you certainly wouldnt want to miss something possibly treatable!!
  4. golden

    golden Senior Member

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    I need lists like this.
    What are the common M.E. Abnormalities tests again please someone?
  5. Min

    Min Senior Member

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    This highlights that CFS is merely a dustbin diagnosis; once it is given by lazy doctors all hope of testing or treatment for the patient’s real illness is gone, they are now in the nightmare world of the fatigue clinics.
    Abha, leela, justy and 3 others like this.
  6. Tito

    Tito Senior Member

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    I remember 10 years ago there were accounts of people with CFS being treated with growth hormone who were experiencing what seems to be a complete recovery (going back to full-time employment). i don't know why the idea was abandonned.
    leela likes this.
  7. alex3619

    alex3619 Senior Member

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    Most ideas in CFS and ME research are abandoned as nobody can get funding. Its a dustbin diagnosis in part due to lack of research, which is in part due to lack of interest. When something is mired in ignorance and prejudice few work on trying to bring light to the subject. It seems that millions of disabled people do not change that.
  8. Bob

    Bob

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    It's interesting that this is a slightly more accurate description than what I'd expect in an article purely about CFS. Still not giving the full picture though.
    Last edited: May 18, 2014
    leela, Ambrosia_angel, Sushi and 6 others like this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Scroll down and look to links on the right at http://sacfs.asn.au/index.html .. till you see the Canadian Consensus Overview (third link down under ME/CFS Diagnostic Criteria and Guidelines) . In that there is a whole page on abnormalities found in ME/CFS (which are basically abnormalities found generally in ME).

    (I'd tell you exactly where to find it in that document but cant open the link as I accidently stupidly removed the program in my computer that opens things. I think it may be towards the end of the document or right at the end.. its clearly titled .. you could also try to look for it in the index of the document).
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Interesting!
    I've had concussion "officiall"y twice but know it' smore than that
    and MRI scan showed slight abnormality of pituitary at same time as blood tests revealled it wasn't regulating testosterone production
    but the assholes did no follow ups, no SPECT or more MRIs though they said such should be done....cause with ME/CFS in UK, they won't do follow up scans
    Sushi, justy, alex3619 and 2 others like this.
  11. alex3619

    alex3619 Senior Member

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    http://www.pituitarysociety.org/public/specific/hypopituitarism/signs_html.aspx

    The pituitary gland produces a range of hormones, and has a duct that directly leads to the hypothalamus. Not all hormones may be directly affected. I suspect that in ME and CFS most of these hormones needs to be tested. Several of them are implicated in ME.

    Interestingly a problem with too much melanocyte stimulating hormone, not to mention low cortisol, could potentially explain why the tops of my feet are brown. Its not a tan.
  12. Esther12

    Esther12 Senior Member

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    I'm not sure about the specifics of this article, but just from minimal reading about brain injury and CFS it seems obvious that there's going to be overlap, and that also lots of people whose brain injuries aren't identified and diagnosed will end up with a diagnosis of CFS.
    SilverbladeTE and Bob like this.
  13. A.B.

    A.B. Senior Member

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    I have pituitary abnormalities and should probably investigate more. According to my understanding, pituitary dysfunction can cause symptoms similar to CFS. I also do not have any obvious signs of infection, and do have blood sugar regulation problems, which are both consistent with symptoms coming from a pituitary problem. It has been difficult to get help with this in the past though.
    justy and Valentijn like this.
  14. Iquitos

    Iquitos Senior Member

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    So, what are the tests for this? Hormone levels?
  15. A.B.

    A.B. Senior Member

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    Various stimulation tests that can track how well the endocrine axis responds to stimulus, but I don't know much and neither seem my doctors.

    PS: the patient in the article had an ACTH stimulation test, which was negative (it is more suited for diagnosing adrenal than pituitary problems). She then had a glucagon stimulation test which is more reliable and came out positive.
    Last edited: May 18, 2014
  16. peggy-sue

    peggy-sue

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    I've had a fair few head injuries, several going back to when I was a child.
    I went headfirst over the handlebars of my trike, landing on the road on my head;

    an (ex) brother bent an iron bar an inch in diameter over my head,
    (I'd pinched a handful of sand from his side of the sand pit),

    and my Dad dropped the big set of swings we had in the back garden on my head.
    He just turned the hose on me, to clear up the blood and chill it to stop the bleeding.

    I've fallen dowstairs drunk, and (apparently) bruised my brain.

    I don't believe a doctor was involved at any time.

    I don't feel hunger or thirst, I've always had dreadful sleep problems. I don't think I even have circadian rhythms!
  17. Firestormm

    Firestormm Guest

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    Iquitos likes this.
  18. justy

    justy Senior Member

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    Whilst reading this a memory came back to me of when I was involved in a road accident - I was a pedestrian and got hit by a car as I was crossing the road - about 3-4 years before first becoming ill. I rember the feel of the metal on my face and the noise it made as my head hit the car. I came too in the middle of the road. I didn't go to the hospital because by the time the ambulance came I felt ok and just went home.

    I also have had two post partum haemorrhages, which can cause sheehans syndrome. Dr Myhill wondered if I might be suffering from this. ACTH stim test (short one) normal, but ive never actually seen the results. The endo then wouldn't see me again as the test result was normal.
    peggy-sue likes this.
  19. Aileen

    Aileen Senior Member

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    Perhaps some of you should contact the Pituitary Foundation mentioned in the article to find out where to go to be assessed. Also what parts of your medical history, including falls etc that should be stressed to the doctors. Ask how to get certain tests and if you've tried unsuccessfully in the past, see if they have advice on a different approach to take.
  20. peggy-sue

    peggy-sue

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    I'd forgotten too, I was in an accident, in which the car rolled over, many years ago.
    We all just got out and ran away.

    I can remember, like you, @justy, the "coming to" bit, and other tiny odd details - like stuff falling in my eyes, and worrying it was broken glass and going blind. (It was just the car floor muck)

    I didn't know the folk I was with - they were the friends of the kids of my parents' friends we were staying with, and I had been told the driver hadn't been drinking anything but grapefriut juice.
    Turned out he hadn't, but that alcohol was the only drug he wasn't on, and the car boot was full of illegal stuff.

    Sensible advice, @Aileen!
    justy likes this.

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