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The Link Between Empty Sella Syndrome, Fibromyalgia, and CFS: The Role of Increased Cerebrospinal Fluid Pressure (2023) Hulens et al.

Discussion in 'ME/CFS research' started by Milo, Jan 25, 2023.

  1. Milo

    Milo Senior Member (Voting Rights)

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    Full title:

    The Link Between Empty Sella Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome: The Role of Increased Cerebrospinal Fluid Pressure

    Abstract:

    The etiopathogenesis of fibromyalgia (FM) and chronic fatigue syndrome (CFS) is not yet elucidated.

    Hypothalamo-pituitary-adrenal (HPA) axis dysfunction is reflected in the hormonal disturbances found in FM and CFS.

    Some study groups have introduced a novel hypothesis that moderate or intermittent intracranial hypertension may be involved in the etiopathogenesis of FM and CFS.

    In these conditions, hormonal disturbances may be caused by the mechanical effect of increased cerebrospinal fluid pressure, which hampers blood flow in the pituitary gland.

    Severe intracranial pressure may compress the pituitary gland, resulting in primary empty sella (ES), potentially leading to pituitary hormone deficiencies.

    The aim of this narrative review was to explore whether similar hormonal changes and symptoms exist between primary ES and FM or CFS and to link them to cerebrospinal fluid pressure dysregulation.

    A thorough search of the PubMed and Web of Science databases and the reference lists of the included studies revealed that several clinical characteristics were more prevalent in primary ES, FM or CFS patients than in controls, including increased cerebrospinal fluid pressure, obesity, female sex, headaches and migraine, fatigue, visual disturbances (visual acuity and eye motility abnormalities), vestibulocochlear disturbances (vertigo and neurosensorial hearing loss), and bodily pain (radicular pain and small-fiber neuropathy).

    Furthermore, challenge tests of the pituitary gland showed similar abnormalities in all three conditions: blunted adrenocorticotropic hormone, cortisol, growth hormone, luteinizing hormone, and thyroid stimulating hormone responses and an increased prolactin response.

    The findings of this narrative review provide further support for the hypothesis that moderately or intermittently increased cerebrospinal fluid pressure is involved in the pathogenesis of FM and CFS and should stimulate further research into the etiopathogenesis of these conditions.

    Open access here
     
  2. CRG

    CRG Senior Member (Voting Rights)

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    Conclusions

    "In this narrative review, we found several disease characteristics that are similar in primary ES and FM/CFS. Hormone secretion responses to pituitary challenge tests were similar in all three conditions. Primary ES is mainly caused by increased intracranial pressure. According to our hypothesis, similar to primary ES, the hormonal disturbances in FM/CFS may be attributed to compressive effects of the cerebrospinal fluid on the pituitary gland, impeding the blood flow in the pituitary gland and the pituitary stalk.

    Furthermore, similar neurological and ophthalmological signs, obesity, headaches, and fatigue are prevalent in primary ES and FM/CFS.

    Therefore, these findings provide further support for the hypothesis that moderately or intermittently increased cerebrospinal fluid pressure is involved in the pathogenesis of FM/CFS."

    -------------------------------------------

    Not sure about the strength of this but it sounds as though this is something the deserves further exploration.
     
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    I have a primary empty sella.
     
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    No, I'm not sure either—it does feel a bit as if they've picked out the symptoms they wanted and ignored the ones they didn't.

    I wonder how many ME patients have even had their CSF pressure measured? It's pretty invasive, and I can't imagine it would be done as part of routine diagnostics for someone with an ME presentation. I don't understand how we know it's "more prevalent".
     
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  5. Trish

    Trish Moderator Staff Member

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  6. RedFox

    RedFox Senior Member (Voting Rights)

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    It's rather speculative if you ask me.
     
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  7. shak8

    shak8 Senior Member (Voting Rights)

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    What is the incidence of FM or ME in people with Idiopathic Intracranial Hypertension (IIH)? https://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

    If their hypothesis were true, wouldn't you expect to see a much larger percentage of FM or ME in cases of IIH than in FM or ME patients without IIH?

    So why not bring an epidemiologist into their group and a FM specialist-rheumatologist or ME expert clinician?

    What doesn't correlate is the type of pain that FM patients experience, that severe wrenching aching pain. It is not related to the spinal nerves (CSF-induced, cerebral spinal fluid=CSF).

    Also, the ever-present muscle weakness that is mentioned in the review and references (empty sella et al) is not the type of muscle weakness in FM or ME. FM and ME muscle weakness is related to exertion and probably a cellular deficit or within the mitochondria. It is not a mechanical (spinal nerve) process.

    Also, if CSF were elevated to a level of clinical damage (FM or ME induction) wouldn't headache be a presenting and continuous symptom? N=1 (me), I don't have headaches since childhood.

    There are many different causes for the associated symptoms that the hypothesis group correlates to FM or ME.
     
    Last edited: Jan 26, 2023
  8. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    I often wonder why they do all these literature reviews, a narrative one this time… I think I have heard this story before (but have not read paper). Sounds like part of a research proposal.

    When are they actually going to do more proper brain imaging on a large cohort of properly diagnosed pwME, delineate the comorbidities properly and then do some functional MRI.

    I think this theory died out some years ago as a no goer and is invasive if you don’t have neurological symptoms and signs of ICH. (A physician should be able to rule this out for the diagnostic work-up for ME to exclude other conditions).

    A lumbar puncture is not a pleasant procedure, (it’s is also hard to perform) and not done routinely, there is a risk of infection and a whopping headache after.
     
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  9. Milo

    Milo Senior Member (Voting Rights)

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    Literature review papers represent the initial work to form a hypothesis, and indeed apply for funding to test it. It is also an opportunity for collaborators to work together and perhaps even include students (undergrad, masters and PhD), as it is them that do the brunt of the tedious work.
     
  10. Grigor

    Grigor Senior Member (Voting Rights)

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    I find it quite interesting. Lots of it fits how I experience aspect of ME but I'm not too impressed with the review itself.
     
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  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    I think a lot of this (speculation) is based on the fact that you can't easily monitor intracranial pressure --- e.g. I don't think you can pick up (moderately) high intracranial pressure via MRI.
    My wife has syringomyelia and our daughter has disabling fatigue, so I'm not entirely dismissing this.

    EDIT - if "(moderately) high intracranial pressure" was an issue then would you expect a higher incidence of minor strokes or similar? Anyone looked for this?
    @Simon any way to check for this via the DecodeME project/questionnaire minor strokes or similar - indication of (moderately) high intracranial pressure?
     
    Last edited: Jan 29, 2023
  12. Ash

    Ash Senior Member (Voting Rights)

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    I certainly feel like I have pressure in the head/eyes. I would like to know if this is actually the case and I’d love to get some relief. But wouldn’t want to have to get lumbar punctured to find out. A pure nightmare :bear:
     
  13. JemPD

    JemPD Senior Member (Voting Rights)

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    I had lumbar puncture originally during investigations - 20 odd yrs ago, & the CSF pressure was very high they said - the dr doing it even cried out when the liquid shot out (apparently - so he told me when i asked what was wrong... obviously i couldnt see). I was prescribed some kind of meds to bring it down (dont remember the name now although i probably would recognise the name if i saw it). I couldnt take them because they gave me such bad pins & needles in hands/feet (a recognised side effect), that it was intolerable and prevented me sleeping.

    So they just said "oh well, its probably not important anyway, it'll help if you lose weight" - & sent me off to the psychiatrist who Dx 'Somatisation Spectrum Disorder', and that was the end of that.
    i weighed 12 stone & i'm 5'6 so i wasnt exactly obese! & losing 2 stone of course made no difference whatsoever.
    So i never did find out why the pressure was high or if it meant anything, or indeed if it remains high now.
     
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  14. Ash

    Ash Senior Member (Voting Rights)

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    What absolute shockers. :panda:
     
  15. CRG

    CRG Senior Member (Voting Rights)

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  16. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Diamox (acetazolamide)
     
  17. JemPD

    JemPD Senior Member (Voting Rights)

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    yes! thank you
     

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