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"Research" - looking for delayed diagnosis manifesting as MUS.

Discussion in 'Other Health News and Research' started by RogerBlack, Feb 22, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    To follow on from the hype around "medically unexplained syndromes".
    Is anyone aware of publications around delay in diagnosis where the patient presents to the GP with 'nonspecific' symptoms (or ones the GP doesn't know), or post-mortem diagnosis of disease, where the symptoms last >6 months.

    Ideally uncontroversial organic diseases, with objective tests your GP would understand, look up, see the symptoms, and be entirely happy with accepting as the cause of your mysterious symptoms.

    I've been unable to find such on pubmed despite moderate searching. Perhaps I'm being unimaginative and using the wrong keywords.
     
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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  3. Mohawk1995

    Mohawk1995 Senior Member

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    Not aware of any, but given that these are "medically unexplained syndromes" I would not think any should exist. That was sarcasm in case you did not catch it.

    I am aware of a case of a very busy and successful Pastor who was competing in Ultramarathons and training to do so nearly every day. In 2008 within the span of 2 weeks he went from that to being in the ICU on a Ventilator. The medical impression was that he had some fast acting muscle wasting disease, but everything was ruled out. They sent tissue and lab samples to Mayo, Cleveland Clinic, Stanford I think and more and 8 years later he has never received a diagnosis.

    It took him 3 months to just be able to walk independently with a walker. Over a year to be able to swallow again. He had to leave his position and eventually returned to work in the in 2013. He will always have deficits for the rest of his life. Very powerful story and chronicled in "An Honest Look at a Mysterious Journey" by John Stumbo.
     
  4. user9876

    user9876 Senior Member

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    I think that is research that should be done but I can't see it being funded in the UK because it is the british medical establishments dirty little secret that they dismiss all sorts as MUS or dismiss patients as the worried well. They won't want to be exposed.

    I do remember that there was a paper that talked about a number of MS patients first being diagnosed with ME.
     
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  5. RogerBlack

    RogerBlack Senior Member

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    I am not talking about 'anti-MUS' research.
    But research into specific conditions that reveal through the diagnosis delay - inherent periods when the condition was 'medically unexplained'.

    For these conditions, where the symptoms in question lead to a likelyhood of 'MUS' services being offered as a 'treatment', it would at least lead to an obvious baseline of the fraction of MUS patients who in fact have some objectively diagnosable condition.

    https://www.ncbi.nlm.nih.gov/pubmed/27149919 - after some searching. Of narcolepsy.
    https://www.ncbi.nlm.nih.gov/pubmed/27638835 - chrons '20% of patients had to wait up to 5 years' (where this considerably worsens the outcome versus being caught early)

    https://www.ncbi.nlm.nih.gov/pubmed/27571562 - Acromegaly -
    https://www.ncbi.nlm.nih.gov/pubmed/25139307 On Celiac
    Ideally I'd go down the list of the forums 'alternate or missed diagnosis', find those with undeniable diagnosis, and repeat the search in a targetted manner looking at specific symptoms to see how many are those symptoms highlighted in MUS 'treatment' and come out with an estimate of diagnosable patients that would be given a MUS diagnosis.
     
    Last edited: Feb 22, 2017
  6. Cheshire

    Cheshire Senior Member

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    The Voice of 12, 000 Patients - Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe
    http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf

    A wide survey based on questionnaires sent to 50 European patient organisations in 17 countries.




    upload_2017-2-23_8-10-4.png
    Prader -Willi syndrome (PWS), Marfan syndrome (MFS), Crohn’s disease (CD), Duchenne musculardystrophy (DMD), tuberous sclerosis (TS) and cystic fibrosis (CF), fragile X Syndrome (FRX), Prader-Willi Syndrome (PWS), Ehlers Danlos Syndrome (EDS)
     
    Last edited: Feb 23, 2017
    Kati, Snow Leopard, Woolie and 4 others like this.
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Much of the research done on this predates the www. It goes back to the 50s and 60s. There does not appear to be any convincing evidence this issue has changed. You will need a medical library, and to photocopy it, unless it has been transferred to electronic media. More recently we had some super dodgy research claiming that only 4% were misdiagnosed if diagnosed with psychosomatic illness. It was reaaallly poor research, and indefensible claims were made about the findings. I do not have a reference handy, though I think I looked at it a few years back.
     
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  8. RogerBlack

    RogerBlack Senior Member

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