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Spironolactone as a treatment for CFS in patients with positive Epstein Barr virus serology, 2020, Campo and Taylor

Discussion in 'BioMedical ME/CFS Research' started by Hutan, Mar 21, 2021.

  1. Hutan

    Hutan Moderator Staff Member

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    https://onlinelibrary.wiley.com/doi/full/10.1111/imj.11_14849
    (It's free access but I think it's just a poster)

    Jorge do Campo 1 and Vivienne Taylor 2

    1 Noosa Hospital, Queensland, Australia
    2 Ibuki Medical Centre, Noosa, Queensland, Australia

    Abstract

    Background: Epstein Barr Virus (EBV) is a widely disseminated herpes virus (human herpes virus4). The majority of primary EBV infections in humans are thought to be originate in the oropharynx. Oropharyngeal epithelial cells are permissive for viral replication. EBV is the etiologic agent of infectious mononucleosis. The host cells of EBV are the B and T Lynphocytes. The EBV persist as a latent asymptomatic infection for life in adults and is associated to B cell Lymphoma, T cell lymphoma, Hodgkin lymphoma, Burkit‐lymphoma and Naso‐pharyngeal carcinoma. The EBV has been implicated in the pathogenesis of MS as high EBV titres have been reported in patients with MS. Patients with positive EBV serology and CFS could be considered as carriers of a chronic infection related to EBV. In patients with CFS positive levels of EBV antibody have been reported but there is no definitive evidence that chronic EBV infection is responsible for the symptoms. Spironolactone has an antivirus effect against EBV by inhibiting EBV SM protein function.

    The present report is related to a group of patients with Chronic Fatigue Syndrome (CFS) and positive serology for EBV who voluntarily decided to try low dose Spironolactone for their condition.

    Population and Method: 21 patients with positive serology for EBV infection and CFS were included All the patients were treated with multi‐vitamins. Patients were invited and educated about potential benefit and adverse effects of Spironolactone; patients started Spironolactone at dose of 12.5 mg to 25 mg a day.

    Results: 21 Patients seventeen Females age 54.2 +11, four Males 63.7+5. All the patients had multivitamins and Spironolactone. Five patients presented intolerance to Spironolactone. 16 tolerated the dose of 25 mg a day 5 of these patients had no more CFS and all the rest improve in fatigue and general symptoms.

    Conclusion: The EBV positive serology should not be ignore when associated with CFS it could represent a latent chronic infection.

    The Spironolactone treatment will open a perspective of new antiviral drugs. In this group of patients has demonstrated improvement in general condition and some of them had no more fatigue.
     
    Last edited: Mar 21, 2021
  2. Hutan

    Hutan Moderator Staff Member

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    It's an open label study. The authors don't tell us how 'no more CFS' or 'improve in fatigue and general symptoms' was measured. So, unfortunately, this study doesn't really tell us anything. The reported complete cure of CFS in 5 out of 21 patients is interesting. But there are so many questions that this brief article doesn't answer. For example, what criteria were used to diagnose the CFS and how long had the patients had CFS before starting the trial? How long did the treatment last? Did any patients continue on the treatment after the trial? What was the status of the patients several months later?

    How do we get researchers to stop wasting their time and that of their patients on open label trials? A simple blinded cross-over study would not have been much more complicated to arrange and manage, and it would have gone a long way to giving us good information about whether it is worth spending more time and money looking at this treatment.
     
    Michelle, Milo, sebaaa and 11 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    @Simone, do you know anything about this study, or Campo and Taylor? How did they get hold of 21 CFS patients?
     
  4. Milo

    Milo Senior Member (Voting Rights)

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    What is ‘positive serology’ means? IgM+ (Suggestive of active infection) or IgG positive? early Antigen +?
     
  5. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    An endocrinologist here trialled Spironolactone on his ME/CFS patients in the late 1990s. An old friend from uni happened to be a colleague of his and wrote me a prescription for it. I tried it for 6 months and noticed no effect (I'd had an EBV onset about 8-9 months earlier).

    It's strange how all these old treatments from the 90s (eg, niacin) are suddenly making a comeback.
     
    Last edited: Mar 21, 2021
  6. Wonko

    Wonko Senior Member (Voting Rights)

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    Whole new group of punters who haven't experienced enough to know that 'simple' fixes don't work.

    No matter how many monks from far away were 'involved' in producing them.

    IMO it should be illegal, but it seems a lot of this old marketing led 'research' is actually being promoted/paid for by the authorities. Just so they can say ' we are doing something, look at how much money we're spending'.
     
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  7. Mij

    Mij Senior Member (Voting Rights)

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    I don't know what viral infection I had at onset, but it wasn't considered important by ME doctor.

    I continue to have reactivations of EBV and HHV6 and would consider taking a medication to shorten the duration? I don't understand how that would 'help' or treat CFS though?
     
  8. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    Last edited: Mar 21, 2021
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    Link doesn't work.

    This is a corrected version

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4822607/

    However, in common with @Mij I fail to see how this would help anyone unless the hypothesis is that ME is directly caused, and maintained, by EBV was correct.

    Which, as far as I know, has been pretty conclusively refuted over the years.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Goodness knows what the Royal Australian College of Physicians are doing publishing this.
    It hasn't even been checked for grammar.

    Edit: I see it may be just a poster. But it is still not good enough to present at a meeting.
     
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  11. Simone

    Simone Senior Member (Voting Rights)

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    I was aware of it. I was sent the abstract in June. I don’t know anything about their method, but I agree with the concerns raised here.
     
    Trish and Hutan like this.
  12. Andy

    Andy Committee Member (& Outreach when energy allows)

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    This seems to be the same thing republished.

    SPIRONOLACTONE OFF-LABEL THERAPEUTIC BENEFIT IN ME/CFS

    Background

    In The RACP Congress 2020 we presented an abstract which demonstrated the results of patients treated with spironolactone for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with Epstein Bar (EBV) positive serology. Spironolactone has an antivirus effect against EBV by inhibiting the EBV SM protein function (1). Patients with positive EBV serology and ME/CFS may be carriers of a chronic latent infection. As reported by multiple authors in previous research ME/CFS is a neuro-inflammation. When investigating patients with magnetic resonance spectroscopy it was described widespread metabolite abnormalities in ME/CFS. Areas of increased temperature include right insula and thalamus, putamen, frontal cortex, and cerebellum. The areas of neuro-inflammation are in the microglia and the microglia cells are macrophage of the central nervous system, these macrophages are indistinguishable from bone marrow derived macrophages. Emerging research indicates that Angiotensin Converting Enzyme 2 receptors (ACE2) may be responsible for protective effect of microglia (2). Spironolactone increase the ACE2 receptors activity (3).

    Population and Method
    21 patients (17 females) with positive serology for EBV infection and ME/CFS were included All the patients were treated with ascorbic acid oral 50 mg/Kg. They have supplementation with Cholecalciferol 1000 Units/day, Vitamin B12 intramuscular 1 mg every 4 weeks, Thiamine 100 mg a day and Folic acid 5 mg a day. Patients were educated about benefit and adverse effects of spironolactone before treatment then starting dose was 12.5mg a day increased to 25 mg a day after the first follow up.

    Patients used the pedometer as management strategy for every day activity. The target has been to limit the physical activity to avoid exercise triggering fatigue crisis.

    Patients were follow up in outpatient clinic and GP clinic.

    Results
    21 Patients 17 were Females age 54.2 +11, four Males 63.7+5. Five patients presented intolerance to spironolactone. 16 tolerated the dose of 25 mg a day. Five of these patients had no more CFS and all the rest improved in fatigue and general symptoms.

    Improvement in cognitive skills was the early manifestation of spironolactone benefit. Patients reported to be less brain foggy, more alert and they found it easier to focus when doing normal every day activities. They also were less irritable by noise and light and described themselves to be able to do multi task again. Later, after six weeks, they improved their tolerance to walking exercise.

    Conclusion
    Patients with ME/CFS improve their cognitive skills when treated with spironolactone.

    Spironolactone increased macrophage ACE2 receptors activity and in the microglia this effect may represent a reduction of neuro-inflammation.


    Open access, https://onlinelibrary.wiley.com/doi/10.1111/imj.1_15291
     
  13. Trish

    Trish Moderator Staff Member

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    Looks like it's one of 5 poster presentations selected for the 'best poster presentation prize'. So, yes, the same thing republished by the same organisation.
     
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