Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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What makes CFS different from somatoform disorder

Discussion in 'General ME/CFS Discussion' started by bostjan01, Feb 7, 2018.

  1. Alexi

    Alexi

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    Did you look at the website neurosymptoms.org ? What do you make of it ?
     
  2. nanonug

    nanonug Senior Member

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    Does he have any evidence for this assertion?
     
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  3. Alexi

    Alexi

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    He references the neurosymptoms.org website
     
  4. nanonug

    nanonug Senior Member

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    Myasthenia gravis is generally diagnosed with a blood test that looks for antibodies against nicotinic acetylcholine receptors.

    MS is more difficult to diagnose but usually involves an MRI and/or looking for chronic inflammation in the cerebro-spinal fluid.

    I'd be very skeptical about strictly relying on electromyography for anything.
     
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  5. nanonug

    nanonug Senior Member

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    That's not evidence for his belief.
     
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  6. nanonug

    nanonug Senior Member

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    I'm looking at the following video that is embedded on the neurosymptoms.org website and the thought that comes to mind is Transient Ischemic Attack. A mini-stroke that damages certain neurons may potentially lead to neurological impairment which, upon retraining (establishing new neural pathways) leads to full recovery.

     
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  7. alex3619

    alex3619 Senior Member

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    I would like to add a caveat to this. CFS or ME that is sub-clinical, that is mild enough you cannot actually be diagnosed, might allow a fair bit of exercise. In patients with mild CFS or ME under weak definitions the same thing might apply. In patients with subclinical ME and complications that increase severity, such as EDS or OI, then there might be patients who can exercise.

    This does not apply at all to moderate to very severe patients. Its only in the mild and subclinical range that this might apply.

    It is also possible at a very mild range of severity that its very hard to figure out what the PEM response is, it might be greatly decreased. So it might be put down to a typical exercise response. We just do not know.
     
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  8. alex3619

    alex3619 Senior Member

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    I realise this question is rhetorical, but for others I want to point out the traditional divide is structural versus functional. So non-functional is structural, unless you are a BPS psych perhaps.


    Again a rhetorical question. The answer is yes.


    You should be confused. These help eliminate disorders, or are used to support a specific diagnosis such as MG. If nothing is found then they tell you nothing about what is wrong.

    When you are told this you are getting a non-answer.
     
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  9. Wishful

    Wishful Senior Member

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    One thing that convinced me that my symptoms weren't psychological was keeping a food/activity/symptom diary. I could go back and verify that something repeatedly triggered symptoms, even though I had no belief that they should have any effect. Likewise, things that I believed might affect symptoms didn't, or had opposite effects to what I believed they should be.

    Doctors eager for a 'somatization disorder' diagnosis would blame it on a change in lifestyle (lost job, relationship, etc). I would then point out that there weren't any changes in my lifestyle; I just one day started having these symptoms. That didn't change their minds much though...
     
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  10. Alexi

    Alexi

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    I’m due to see this neurologist again.....usual nhs follow-up.
    Gimme some good comebacks to challenge this load of cobblers !
     
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  11. nanonug

    nanonug Senior Member

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    On page 10 you'll find a diagnostic algorithm for SEID. See if you fit the bill. If you do, considering printing (professionally!) and taking to your neurologist. Give him time to digest. Then, eventually, ask him why you don't fit the bill.

    http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf
     
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  12. msf

    msf Senior Member

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    Just thought of a good answer to the opening question: science
     
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  13. adambeyoncelowe

    adambeyoncelowe

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    Bear in mind that 'functional neurological disorder' is coded under the 'conversion disorder' diagnosis (i.e., psychosomatic/hysterical). It's a recently made-up diagnostic category.

    If we're supposed to reflect that psychosocial issues affect lots of/most illnesses, then why isn't MS treated primarily with CBT? Or cancer? Or Parkinson's?

    This doctor clearly has his own biases. You don't have to accept his opinion. You could ask to be referred to an ME specialist, who will at least give you an actual diagnosis, even if they then want to treat you with CBT and GET (which you can refuse).

    Vague references to 'signals' and the like are untestable, and therefore unscientific. This is the bread and butter of FND.

    A few clues that suggest ME (none is diagnostic on its own, except perhaps the first):
    1. Symptoms that get worse after exertion. Especially if this feels quite flu-like, and kicks in after a delay of a few hours to up to three days. Keep an activity diary and use a step counting app or Fitbit. If you feel worse 1-3 days after activity, that indicates PEM.
    2. ESR < 5mm/hr. Anecdotally, this may support a diagnosis of ME. Some patients have raised levels, though, so it's not diagnostic.
    3. Alcohol intolerance - very common in ME, apparently. There isn't any research on this, but it's likely related to mitochondrial dysfunction and/or neurocognitive problems.
    4. A positive Romberg test. Indicates neurological problems.
    5. Sticky or very thick blood (in scientific terms, it's lost its deformability). Doctors often notice this in patients, though if you've ever done a finger-prick blood test, you may have noticed it yourself! Possibly diagnostic, but more info needed.
    6. Possibly increased prolactin levels after the buspirone challenge, or at least a nauseous feeling. ME patients usually don't do well on normal doses of SSRIs and similar drugs. This may not work if you have co-morbid depression.

    The two-day CPET isn't really done here, and you're unlikely to get scans done (although hypoperfusion, especially of the brainstem, may be a clue). You could probably find some neuropsychiatric testing online to measure brain fog rather loosely (you'd expect slowed processing), although it's not flawless.
     
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