Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Incomplete IIH as a form of CFS

Discussion in 'Latest ME/CFS Research' started by Jon_Tradicionali, Mar 30, 2015.

  1. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    An interesting angle.



    What do lumbar puncture and jugular venoplasty say about a connection between chronic fatigue syndrome and idiopathic intracranial hypertension?

    EJMINT Original Article, 2014: 1448000223 (24th November 2014)
    Nicholas Higgins(click for full study), John D Pickard, Andrew M Lever

    Abstract
    INTRODUCTION: Similarities between chronic fatigue syndrome and idiopathic intracranial hypertension (IIH) invite speculation that they may be related. Cranial venous outflow obstruction plays a role in the development of IIH. Could it be a factor in chronic fatigue? This paper attempts to evaluate an investigative approach to chronic fatigue syndrome that allows for this possibility. METHODS: Since 2007, patients attending a specialist clinic at our institution diagnosed with chronic fatigue syndrome and with prominent headache have been offered CT venography, lumbar puncture and a trial of cerebrospinal fluid withdrawal looking for IIH. Also, if CT venography revealed focal narrowing of the jugular veins, patients were offered catheter cerebral venography and jugular venoplasty attempting to establish their clinical significance. RESULTS: In the 29 patients investigated to date, the mean cerebrospinal fluid (CSF) pressure was 19 cm H2O (range 12 – 41 cm H2O). Twenty-five patients responded positively to CSF withdrawal and in 5 the CSF pressures were high enough to allow an unequivocal diagnosis of IIH while in the remaining 20, symptoms improved with lumbar puncture even though CSF pressures were within the normal range. Twenty-one patients had focal narrowing of one or both internal jugular veins on CT venography. Fourteen of these have had jugular venoplasty, all of whom reported an improvement in symptoms afterwards lasting from a few minutes to more than 1 month. CONCLUSIONS: Chronic fatigue syndrome may represent an incomplete form of IIH. Cranial venous outflow obstruction deserves further investigation as a possible aetiological factor.
     
    Last edited: Mar 30, 2015
  2. barbc56

    barbc56 Senior Member

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    It looks there isn't a control group? Does this phenomenon occur in other diseases. Perhaps a comparison between healthy as well aa those with other health conditions (headaches?), might lead to a better understanding.

    I cant process the other information, too foggy at the moment,, so I may be misinterpreting the study.

    Interested in other's resonses.

    Barb
     
  3. SDSue

    SDSue Southeast

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    Florida
    I went down this rabbit hole for a while and finally did a trial of Diamox, which was a huge fail and left me with a massive headache. I figured it was cheaper and easier than a lumbar puncture. I wouldn't recommend it, but hey, desperate times call for desperate measures. lol
     
    Jon_Tradicionali and August59 like this.
  4. IreneF

    IreneF Senior Member

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    San Francisco
    My chronic headache is caused by inflamed sinuses.
     
  5. Valentijn

    Valentijn The Diabolic Logic

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    I doubt that IIH is as easy to misdiagnose as CFS as they think it is. They're using Fukuda, omitting any mention of PEM, even as an optional symptom, and including depression as a symptom. Not too surprising when they seem to think papers by Wessely, Chalder, and Crawley are reliable sources.

    My general impression is that these researchers really have no comprehension of CFS, and are not investing ME/SEID whatsoever.
     
  6. *GG*

    *GG* Senior Member

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    Concord, NH
    Really wish people would use more info in thread Title, why not spell things out, unless of course you think you will not get as much traffic that way. LOL I might just start a thread on this, and see what others think. Also, breaking this up, since many people have trouble reading/following such a large block of words.

    GG

    Peace out :)
     
  7. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    I think you forget that I too am a person with CFS/ME.

    Anyway, I always have a queue of 15-20 relevant articles ready for reading and sometimes post the ones I deem interesting.

    Entirely up to you if you want to read it or not.

    In your case though, I suggest you skip next time.
     

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