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Link between Glandular Fever and CFS/ME

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by sickanon, Sep 19, 2017.

  1. sickanon

    sickanon

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    I have been ill for the last nine months with Glandular Fever. Originally, I was told I would recover within six months, and foolishly I continued working fulltime even after my diagnosis. Eventually, I lost my job, and thus my dream of being a graphic designer, due to my illness. Since my diagnosis, my health has deteriorated rather than improved. I live with chronic fatigue, chronic pain, headaches, muscular pain, swollen glands, and sore throat. I am in constant pain. In my efforts to find answers as to why I have failed to recover, I discovered in my online searching that there is a strong link between Glandular Fever and CFS/ME. I was wondering if there's a possibility the virus has led to me developing a chronic illness? And how might I go about getting diagnosised? My GP is currently refusing to entertain a rediagnosis, and inisists that my primary diagnosis is still Glandular Fever / Post Viral Fatigue. I'm tired of not being taken seriously by medical professionals.
     
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  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    I hear you about the incompetency of some health care professionals.

    Do you have the hallmark symptom of ME: post exertional malaise?
     
  3. sickanon

    sickanon

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    Yes, minor activities leave me absolutely exhausted and in pain.
     
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  4. Eastman

    Eastman Senior Member

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  5. Daffodil

    Daffodil Senior Member

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    @sickanon that's what happened to me...still sick 24 yrs later, life ruined.

    probably the EBV triggered some kind of autoimmunity which may or may not be linked to bacterial infection or HERV activation or incomplete EBV replication, etc etc.... or something entirely different that no one knows about.

    if I were you, I would get to a specialist ASAP because you still have a very good chance at recovery. I would recommend Dr. Kenny DeMeirleir.

    xo
     
  6. Hip

    Hip Senior Member

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    It says here that:
    Similarly, this study found that after mononucleosis (glandular fever), which is mostly caused by Epstein-Barr virus (but sometimes caused by cytomegalovirus or other viruses), ME/CFS was found as a follow on in 9% of cases.

    Another study found that at 6, 12 and 24 months after mononucleosis, 13%, 7% and 4% of patients respectively met the criteria for ME/CFS, so ME/CFS-like symptoms are not uncommon after mononucleosis, but you can see from these diminishing percentages that over time, people can recover.

    That is to say, at 6 months 13% had ME/CFS-like symptoms, but by 24 months, only 4% had them. So that indicates out of the people that were still ill at six months, around two out three of those had recovered by 24 months.

    So it is still possible that you will recover, but if your fatigue is still there many months from now, it may be that you have developed ME/CFS.

    If you develop ME/CFS from your Epstein-Barr virus infection, some ME/CFS patients find that antivirals for EBV help: see the Epstein-Barr virus section in this roadmap document for more info. Although ME/CFS is a difficult beast to treat.


    You said your are in pain; what sort of pain are you experiencing? Is it mainly muscular pain?
     
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  7. Esther12

    Esther12 Senior Member

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    I think that this is the largest study on this?: https://www.ncbi.nlm.nih.gov/pubmed/16950834

    Those who get glandular fever are substantially more likely to suffer from CFS even a long time after infection. Most of those who are ill at nine months still go on to recover, so fingers crossed for you. Some do not, and we do not know why. Unfortunately, there's a lot of quackery and not a lot of good research so it's very hard to suggest anything for you. My instinct is that it's probably best to just try to relax and do what you feel like - hoping that your body will sort itself out, but no-one really knows. Best of luck.
     
  8. sickanon

    sickanon

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    Muscular pain and what I can only describe as a painful pins and needles/burning feeling, mostly in my limbs. Although I have heard that recovery times can vary massively in Glandular Fever patients, the longer I'm ill, the less optimistic I am about making a full recovery. I am well aware that I may have sabotaged my chances of recovery by continuing to work aftet my diagnosis. I didn't realize just how serious the consequences of this virus could be till much later.
     
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  9. sickanon

    sickanon

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    I went to the doctor this morning. It's official, I have Chronic Fatigue Syndrome. There's no hope for me. I'm not going to get better.
     

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