Misdiagnosis of CFS -
Chronic Fatigue Syndrome

A misdiagnosis of CFS is a natural concern for any of us diagnosed with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (aka M.E).

This CFS article is for you if you are asking or saying:

  • What if I have a different illness than Chronic Fatigue Syndrome?
  • Could a different chronic illness be the cause of CFS symptoms?
  • I want to check that I am not misdiagnosed with CFS, because I worry that there is a treatment out there that I could be getting.

Below, I give a list of other chronic illnesses with some overlapping symptoms to those of CFS.
For some or them, tests and treatment are available.
For others, as for CFS, alternative healing methods are the only treatments available. If there is no additional treatment, there may be little advantage to receiving another diagnosis.

Please note that there are other illnesses and conditions which should have been excluded before a diagnosis of Chronic Fatigue Syndrome was given.

Your medical practitioner should have arranged neurological tests and blood tests. Possibly you will have been given an EEG, an ECG and even a MRI scan.

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Why is there a risk of misdiagnosis of CFS?

For the following reasons a misdiagnosis of CFS Chronic Fatigue Syndrome or Myalgic Encephalomyelitis is possible:

  • Currently Chronic Fatigue Syndrome causes are not known, despite the fact that the illness affects over
    250, 000 people in the UK alone.
  • The possibility of finding a CFS cause is hampered by a lack of agreement about the symptoms needed to be diagnosed with CFS as we have seen above.
  • Chronic fatigue (not the syndrome) is a symptom of many different illnesses, and can sometimes be resolved fairly easily, for example if lack of sleep, hypoglycemia, or poor nutrition are responsible.
    There is a risk that someone presenting with chronic fatigue may incorrectly be given a Chronic Fatigue Syndrome diagnosis.
  • There is the risk of misdiagnosis of CFS - Chronic Fatigue Syndrome - as long as there is no blood test or other clear diagnostic marker for this chronic illness.

Move from Do I have a Misdiagnosis of CFS? to read about the criteria and symptoms which are necessary for a diagnosis of CFS.

A chronic illness with overlapping symptoms may lead to misdiagnosis of CFS

Illnesses to exclude when considering a diagnosis of CFS include the following:

  • 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 Chronic Fatigue Syndrome who turned out to have thyroid deficiency. After treatment, she experienced a new lease of life in her later years.
  • Adrenal Fatigue
    It is unclear if adrenal fatigue is the same thing as a Chronic Fatigue Syndrome diagnosis or something different.
    Those with adrenal fatigue often talk of having burned out and seem less likely than those with CFS/ME to talk of an illness as being the trigger. Only alternative healing methods provide treatment.
  • Addison disease is an adrenal disorder which may follow extreme physical training over an extended period. The adrenal gland shuts down totally and can be life-threatening. It is treatable through continual replacement of corticosteroids.
  • Coeliac disease
    People with coeliac disease are tired all the time because they are not absorbing nutrients from the food. They experience amazing relief from cutting out gluten to which they are intolerant. Coeliac disease often goes undiagnosed. There is a test for coeliac disease.
  • Lyme Disease
    Consider Lyme disease if you might have been bitten by a tick.
    Katina Makris wrote the book Out Of The Woods about her experience with a long-term illness at one point diagnosed as Chronic Fatigue Syndrome which turned out to be Lyme disease.
    Her rediagnosis with Lyme disease didn't lead to any quick or easy solution, but as a result of using alternative healing methods, she is back on her feet again.
  • Ehlers-Danlos (EDS) and Mast Cell disease
    Consider Ehlers Danlos if your joints are hyper mobile and you bruise easily.
  • Sjögren's Syndrome
    Consider Sjögren's if you experience dry eyes. If so, even if you don't have Sjögren's Syndrome you might like to check out this article on foods that help  dry eyes.
  • Depression
    Depression is a serious condition. It is often accompanied by chronic fatigue, but not by the full range of symptoms of CFS.
    I have met two men who thought they had CFS/ME but recovered their energy within a year and concluded that they had had depression.
    Depression is commonly experienced by people with CFS/ME. I consider it a consequence or a symptom, not a cause. If your depression is relieved by exercise, then you are unlikely to have Chronic Fatigue Syndrome.
  • Food allergies and food sensitivities
    Both food allegies and food sensitivities can cause serious symptoms including chronic fatigue.
    Consider food allergies or food sensitivities if you crave or notice feeling worse after eating a certain food. If you drink a lot of fizzy drinks or sodas, consider aspartame poisoning.
  • Multiple Chemical Sensitivity (MCS)
    Consider MCS if you have been exposed to toxins such as amalgams and chemical spraying.
  • Hypoglycemia
    Consider hypoglycemia if you need to eat frequently and experience dizziness if you do not do so. Reactive hypoglycemia is often a symptom not a cause of Chronic Fatigue Syndrome.
  • Chronic Pain Syndrome (Type #CPS to find Chronic Pain Syndrome sufferers on twitter)
    I am not clear yet if this an alternative diagnosis or one that runs alongside a dignosis of CFS since chronic pain can also be a symptom of CFS/ME.
    There is no clear treatment protocol for Chronic Pain Syndrome
  • Myasthenia Gravis
    Weakness is a key symptom of Myasthenia Gravis and might lead to misdiagnosis of CFS or Myalgic Encephalomyelitis. Blood tests and treatment are available.
    Symptoms can include a drooping of one or both eyelids, difficulty in swallowing, a changed facial expression, double or blurred vision, unstable walking, shortness of breath, impaired speech (dysarthria), and weakness in the arms, hands, fingers, legs, and neck.
  • Postural orthostatic tachycardia syndrome ( PoTS)
    Why do I feel dizzy when I stand up?
    Again this is often an overlapping condition rather than a misdiagnosis of CFS. Studies from both the UK and Australia indicate that PoTS is found in up to one third of those with ME/CFS.
    Consider PoTS if you are usually dizzy when you stand up and even possibly when you are lying down (- I used to be!) PoTS is due to your heart rate increasing by 30 beats per minute as you stand up.
    Alternatively dizziness on standing can also be due to a drop in blood pressure - this is called orthostatic hypotension.
    The cause of PoTS is not known. Ask your medical practitioner if any treatment is available. You can visit www.potsuk.org for more information.
  • Multiple Sclerosis
    A friend's diagnosis was changed from Myalgic Encephalomyelitis to Multiple Sclerosis. Many symptoms are overlapping, including chronic fatigue.
  • B12 deficiency
    People with B12 deficiency share many Chronic Fatigue Syndrome symptoms. A misdiagnosis of CFS 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.
  • Peri-menopausal symptoms (or menopausal symptoms)
    Peri-menopausal symptoms can include fatigue, insomnia, joint pain, memory lapses and mood swings. If you are female and your periods have become irregular or stopped, consider that you may be peri-menopausal. 
  • Undifferentiated Connective Tissue Disease (UCTD)
    Possible symptoms include aching joints, low grade fever, dry eyes, and a rash in response to being out in the sun. Fatigue is not listed as a symptom. Read more about UCTD here.

It's okay to accept a Chronic Fatigue Syndrome diagnosis

A final note if you are wondering if you have a misdiagnosis of CFS (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 living with Chronic Fatigue Syndrome.

Many of the chronic illnesses listed above are similar to CFS in that they too have no clear diagnostic marker and no clear treatment pathway.

If you have been given a Chronic Fatigue Syndrome diagnosis by a medical practitioner, you may choose to accept this diagnosis, follow the advice and find the biggest life you can whilst living with CFS.

You might also choose to pursue alternative healing. Please know that many people with a clear diagnosis such as cancer still choose to pursue alternative or complementary healing methods.

Whether you choose to challenge your Chronic Fatigue Syndrome diagnosis or live with it,
I wish you every blessing.


Katherine

Katherine T Owen

Webmaster and author of Be Loved, Beloved (Paperback at lulu.com. Also on kindle)

The cause of CFS is not known. Nonetheless, we need an answer on how to reply to the question: What is the cause of CFS?


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Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary.