Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Article: 2012 - the Year Ahead Pt II: ME/CFS Efforts Expand

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 22, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Thanks for those additional quotes. And it's worth remembering that you'd get a 50% classifier rate by tossing a coin!

    I think failure to replicate the initial findings on an independent sample is a common failing for CFS research, particularly where biomarkers are postulated. With a single sample, thresholds are set to maximise the preidctive power for that particular set of patients and controls, which is 'overfitting' data. This from Wikipedia explains the issue:
     
  2. Cort

    Cort Phoenix Rising Founder

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    It's astonishing how off they were. Those genes had almost no predictive value - and they appeared to have been validated at least once. Almost 60% of CFS patients were classified as healthy controls - ouch....Its kind of mind-boggling.
     
  3. MishMash

    MishMash *****

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    Haven't we been thru this with florinef? Can anybody raise their hand and say "this drug helped my ME/CFS symptoms"? I mean on a long term basis? I went thru all the tilt table stuff and actually spoke with Dr. Rowe afterwards. He is a consummate gentleman, a first rate researcher and medical practioner, and he really cares about ME/CFS patients; but this theory that taking IO negating drugs are helpful, in ME/CFS, is totally wrong.

    As Mitt Romney says, I'll bet $10,000, or one of my wife's two Cadillacs, or or.....
     
  4. Cort

    Cort Phoenix Rising Founder

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    This is a great question (and a poll would be good).. the study said no but Dr. Rowe regrets that study because he was and is still using Florinef to good effect in some (lucky) patients. ME/CFS is such a diverse field - one of the CAA's studies is looking at 3 different ways to affect blood flows. I imagine they will find that each of them is effective in some patients (achhh!!!).

    Rowe just did a small study which showed that fludrocortizone (is Florinef) is effective in relieving nausea in a portion of OI patients.

    Abstract
    INTRODUCTION/RESULTS: In 17 patients, chronic idiopathic nausea was associated with orthostatic intolerance (OI) by abnormal tilt table tests (88%) or gastric dysrhythmias (71%). After fludrocortisone treatment, there was >26% nausea improvement in 71%, 1-25% in 6%, and no improvement in 24%. In six subjects, EGGs repeated after >50% nausea improvement all remained to be abnormal, suggesting nausea is independent of gastric dysrhythmias. CONCLUSION: Association of EGG abnormalities and OI in this subset of nausea patients suggests a generalized disturbance of autonomic regulation.
     
  5. Ema

    Ema Senior Member

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    snowathlete and Valentijn like this.

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