Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with CFS

Discussion in 'Latest ME/CFS Research' started by Laelia, Apr 17, 2017.

  1. Laelia

    Laelia Senior Member

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    This is old but I'm not sure if it has been posted anywhere on here?

    https://www.ncbi.nlm.nih.gov/pubmed/2146875
     
  2. M Paine

    M Paine Senior Member

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  3. AndyPR

    AndyPR RIP PR :'(

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  4. Esther12

    Esther12 Senior Member

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  5. Hutan

    Hutan Senior Member

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    Peterson PK, Shepard J, Macres M, et al. A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome. Am J Med 1990; 89: 554-560.

    Lloyd A, Hickie I, Wakefield D, et al. A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. Am J Med 1990; 89: 561-568.

    Rowe KS. Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents. J Psychiatr Res 1997; 133-147.

    Vollmer-Conna U, Hickie I, Hadzi-Pavlovic D, et al. Intravenous immunoglobulin is ineffective in the treatment of patients with chronic fatigue syndrome. Am J Med 1997; 103: 38-43.


    I think Kathy Rowe's study in 1997 found a positive result of IVIg for adolescents. I was surprised when I heard about it that it wasn't followed up. But if there was a context of follow-up studies in adults finding null results then that might explain it.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    From the MEA purple book (2017 edition):

    Treatment section: Immunomodulatory drugs

    · Intravenous injections of pooled human immunoglobulin have been assessed in five RCTs. Three reported benefits (DuBois 1986 – for “chronic mononucleosis syndrome”; Lloyd et al 1990; Rowe KS 1997) whereas two found no benefit (Peterson et al 1990; Vollmer-Conna et al 1997). There is no published evidence to support the use of intramuscular injection of human immunoglobulin or low-dose intravenous immunoglobulin in research-defined CFS. Immunoglobulin has also been reported to be of benefit in parvovirus-induced ME/CFS (Kerr et al 2003).

    NB: The NICE guideline on ME/CFS does not recommend the use of any immunomodulatory treatment for ME/CFS

    So, given the very speculatory nature of this form of treatment, it is unlikely to be prescribed on the NHS here in the UK

    CS
     
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  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    We tried getting someone interested in IVIG in Norway, but alas. It is however prematurely rejected, and should be researched again with strict criteria and objective measures.
     
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  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Exactly and well said.

    Until it means something medically to be an ME CFS patient in any study (biomarkers), unless we use as strict criteria as possible until then (ME-ICC), potential therapies like IVIG are wasted via negative studies that may fail, due to the heterogenous cohort issue.

    Hence 1 study say this works, 3 says it doesn't and the idea gets dropped in favour of useless CBT GET as that's cheap and helps place responsibility of recovery on the patient, not the state.

    Anti Science Governments love anything that demonstrates ME CFS diagnosese have real serious organic diseases inside them, which is why they love Fukuda CFS (PEM not required!) and British F48.0 psych Chronic Fatigue (active depression and past mental illness permitted at time of CFS diagnosis!).

    So naturally from this issue of no test confirming the diagnosis of ME CFS, you get 30 'CFS' patients in a study, and find zero response from IVIG vs placebo because the patients tested, no one even knows if the have ME or not.
     
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