Misdiagnosis of
Myalgic Encephalomyelitis

What else could this ME illness be?

Misdiagnosis of Myalgic Encephalomyelitis may occur when a deficiency is causing the symptoms

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Contents for this article on Do I have a Misdiagnosis of Myalgic Encephalomyelitis?

Please scroll down to read each of the following.

  • Deficiencies that can lead to a potential misdiagnosis of Myalgic Encephalomyelitis
  • Environmental cause leading to a potential misdiagnosis of the chronic illness ME
  • Other issues to exclude as a cause of fatigue and other ME symptoms

Or click through for the previous article on possible misdiagnosis of Chronic Fatigue Syndrome - I refer to the illness as CFS in that article instead of ME.

  • Chronic Illnesses to exclude when asking if you have been misdiagnosed with Chronic Fatigue Syndrome
  • Diet related conditions which can lead you to be misdiagnosed with CFS

Deficiencies that can lead to a potential misdiagnosis of Myalgic Encephalomyelitis

  • Underactive thyroid
    Even when a thyroid test comes back as normal, some people have found that their symptoms disappear when treated for thyroid deficiency.
    Tears Behind Closed Doors is a book written by a woman diagnosed with Myalgic Encephalomyelitis who turned out to have thyroid deficiency. After treatment, she experienced a new lease of life in her later years.
    Missing the outer third of your eyebrow can be a symptom of thyroid issues.
    Go here to take the Quiz: Do I have a thyroid problem
  • B12 deficiency
    People with B12 deficiency share many ME
    symptoms. A misdiagnosis of Myalgic Encephalomyelitis is possible. B12 deficiency is probably not tested for enough and is therefore under-diagnosed in the UK and elsewhere.
    Click through to a colleague's website to read about the symptoms of B12 deficiency.

    Among the possible causes of B12 deficiency are exposure to toxins, the presence of an autoimmune disease, or the taking of certain drugs, including undergoing chemotherapy.
  • Hormone Deficiency
    I have read two accounts of hormone deficiency causing CFS symptoms lately.
    This is a new information for me.
    For those in the UK, there is a "London Hormone Clinic". Referral is possible although I don't know how hard it is to get it.
    One potential treatment is bespoke bioidentical hormone lozenges which you have to pay for yourself. HRT may be an option for some.

    Peri-menopausal symptoms (or menopausal symptoms)
    Peri-menopausal symptoms can include fatigue, insomnia, joint pain, memory lapses and mood swings.
    If you are female, of a certain age, and your periods have become irregular or stopped, consider that you may be peri-menopausal. However, you are unlikely to experience the key ME/CFS symptom of post exertiona
    l malaise.
  • Anticholinergic syndrome – a dramatic deficiency of the neurotransmitter acetylcholine
    As with many items in this article, rather than a misdiagnosis of Myalgic Encephalomyelitis,
    anticholinergic syndrome may overlap with a diagnosis of ME/CFS, or may even be a possible explanation for this chronic illness.

    For more information move to
    This syndrome cannot be identified by blood work because acetylcholine breaks down rapidly.
    The syndrome is
    identified by the presenting symptoms.

    All conscious muscular movement requires acetylcholine.
    Acetylcholine is integral to the proper function of the peripheral nervous system.

    Related research:
    33. Spence VA, Khan F, Belch JJ. Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic fatigue syndrome. Am J Med. Jun 15 2000;108(9):736-739.
  • Pyroluria - This often manifests as social anxiety along with other symptoms.
    It can be testetd for with a urine test.
    A defiency of Vitamin B6 and Zinc can be easily corrected in some cases with natural healing supplements.

Please note that mineral and vitamin deficiencies are common in those diagnosed with the illness ME.
Over many years I tested low for red blood cell magnesium.
Such deficiencies do not indicate a misdiagnosis of ME but are a cause or consequence of the illness.

Environmental cause leading to a potential misdiagnosis of Myalgic Encephalomyelitis

The following diagnoses may replace or go alongside a diagnosis of Myalgic Encephalomyelitis.
Avoidance of environmental factors brings great relief to many but can be difficult to achieve in the modern world.

  • Multiple Chemical Sensitivity (MCS)
    The body produces symptoms in response to some of the chemicals in every day domestic products. Consider MCS if you have been exposed to toxins such as amalgams or chemical spraying.
  • Can mold cause illness? = Can mould cause illness? (UK english spelling)
    A reaction to mould toxins can lead to a possible misdiagnosis of Myalgic Encephalomyelitis /CFS. Consider this if you have mould in the house.
    Mould toxins become a more likely cause of CFS symptoms if more than one member of your household has a diagnosis of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, or if you notice that your symptoms reduce greatly when you stay elsewhere.

    To find out more, search online for the names of the following doctors who have done research in the subject of mold as a cause of illness.
    Dr Jack Thrasher,
    Dr Shoemaker,
    Dr Janette Hope
    Dr David Ross.

    AVOIDANCE is the first bit of advice, but there are also detoxification protocols you can follow.
  • Mercury poisoning from dental amalgam or nickel poisoning from nickel crowns
    (My thanks to Jackie Scoones - see twitter account below - for alerting me that I had missed this out in this graphic.
    Strange omission as it's one of my own pieces of the puzzle in the journey of illness! )
    You can read about it in this article on ME Subgroups.
Tweet to Katherine Owen, in reply to the request for causes of Myalgic Encephalomyelitis symptoms.

Other issues to exclude as a cause of fatigue and other symptoms

  • Neck injury
    A neck injury - even a minor one - can cause symptoms such as chronic fatigue, dizziness and nystagmus.
    Symptoms of a neck injury may result from impaired blood flow to the brain.
    (What is nystagmus? - Nystagmus is a constant uncontrolled movement of the eyes which may not be visible to the observer.)
    I think - please do your own research- that the Perrin technique works on the theory that a misdiagnosis of Myalgic Encephalomyelitis /CFS may follow on from a spine/back or neck injury. The treatment is gentle physiotherapy.
  • Craniocervical instability
    Jen Brea and Jeff at www.mechanicalbasis.org both experienced dramatic recovery from Severe Myalgic Encephomyelitis after diagnosis with Craniocervical instability followed by surgery.
    It is also called cranial cervical syndrome  hypermobility of the cranial-cervical junction, atlanto-axial instability, atlanto-occipital instability, craniocervical instability, craniocervical injury, upper cervical instability and others.

    Click through if you think a problem with your spine or neck might be at the root of your symptoms. Both Jen and Jeff see this not so much as a misdiagnosis of Myalgic Encephalomyelitis as the cause of their ME symptoms.
  • Functional neurological symptoms (FNS)
    Consider this if you experience involuntary movements.
    A friend sent me to this website by a neurologist explaining some FNS conditions which may lead to a misdiagnosis of Myalgic Encephalomyelitis.
    However, the neurologist (and webmaster) suggests that you might have more luck finding treatment for CFS than for functional neurological symptoms. Even if you relate to the symptoms he outlines, you may still choose to accept your diagnosis of CFS, ME or Fibromyalgia.
    Dystonia and NEAD (Non epileptic attacks) are related diagnoses.
    Laboratory tests may play a part in a diagnosis of dystonia.
  • Haemochromatosis
    Haemochromatosis is a genetic condition also known as
    the Celtic curse. The condition leads to tiredness and joint pain with easily depleted energy levels.
    It is due to high levels of iron in the blood.
    Blood tests reveal the condition and it is treated/ managed by the patient giving blood at regular intervals. 

    Male and female can be carriers of the gene, but the illness only affects the females.
    Haemochromatosis sometimes leads to a misdiagnosis of Myalgic Encephalomyelitis.
    Read more at https://www.bbc.co.uk/news/uk-northern-ireland-43245267

It's okay to accept a Myalgic Encephalomyelitis diagnosis

A final note if you are wondering if you have a misdiagnosis of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.

Your symptoms may be horrible.
You may have trouble believing that you could be so ill without a clear treatment protocol.
But this is the reality for many people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

Many of the chronic illnesses listed in this article and the previous article are similar to ME/CFS in that they too have no clear diagnostic marker and no clear treatment pathway.

If you have been given a Myalgic Encephalomyelitis or a Chronic Fatigue Syndrome diagnosis by a medical practitioner, you may choose to do the following:

  • accept this diagnosis
  • follow the advice to pace activity and rest
  • Pursue alternative healing methods.
    Please know that many people with a clear diagnosis such as cancer still choose to pursue alternative or complementary healing methods.
  • find the biggest life you can whilst living with ME/CFS.

Whether you choose to challenge a Myalgic Encephalomyelitis / Chronic Fatigue Syndrome diagnosis or live with it,
I wish you every blessing.

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Wishing you health both within and beyond illness,


Katherine T Owen

Katherine T Owen runs this website - www.HealingCFSME.com.

She is author of Be Loved, Beloved (Read it in paperback at lulu.com or on kindle)

CFS/ME Articles related to Misdiagnosis and What else it could be

The first part of this article on Misdiagnosis of CFS /ME includes the following:

  • Why is there a risk of misdiagnosis of CFS?
  • Chronic Illnesses to exclude when asking if you have been misdiagnosed with Chronic Fatigue Syndrome
  • Diet related conditions which can lead you to be misdiagnosed with CFS

Click here to read the first part of the article.

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