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.
  • 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.
  • As long as there is no blood test or other clear diagnostic marker for this chronic illness, there is a risk of misdiagnosis of CFS - Chronic Fatigue Syndrome.

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

Contents for this article on Have I been Misdiagnosed with Chronic Fatigue Syndrome?

Please scroll down to read each of the following.

  • 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 Chronic Fatigue Syndrome
  • Environmental cause leading to a potential misdiagnosis of CFS
  • Other issues to exclude as a cause of fatigue and other symptoms

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

Chronic Illnesses to exclude when considering a diagnosis of Chronic Fatigue Syndrome include the following:

  • 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. The only treatment is through complementary healing methods.
  • 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.
  • Ehlers-Danlos (EDS)
    Consider Ehlers Danlos if your joints are hyper mobile and you bruise easily.
    There may be a link between EDS and Mast Cell disorders.
  • Mast Cell Activation Syndrome
    Pam on twitter kindly suggested I add Mast Cell Activation Syndrome to the list. It is a term used increasingly from around 2010. The symptoms appear to overlap with those of allergy. Please do your own research. It appears that testing is possible.
    Investigate Mast Cell Activation if you have sleep problems, allergies and brain fog.
    Also "histamine can mimic symptoms of anxiety and trigger depression and other psychiatric conditions"
    Quote from... https://healinghistamine.com/how-histamine-affects-sleep/
    Research from... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
  • 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 re-diagnosis with Lyme disease didn't lead to any quick or easy solution, but as a result of treating it with complementary / alternative healing methods, she is back on her feet again.
  • Sjögren's Syndrome
    Consider Sjögren's if you experience dry eyes. Even if you don't have Sjögren's Syndrome you might like to check out this article on foods that help  dry eyes.
    I know someone who had an operation for Sjögren's and recovered her energy.
    Dry eyes can also be a symptom of health problems due to mould exposure.
  • 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.
    However, depression is commonly experienced by people with CFS/ME, so you can have both. I consider depression to be a frequent consequence or symptom of CFS/ME.
    If you have depression on its own, then it may help to increase your level of exercise. If your depression is relieved by exercise, then you don't have the key Chronic Fatigue Syndrome symptom of post-exertional malaise.
  • Chronic Pain Syndrome (Type #CPS to find Chronic Pain Syndrome sufferers on twitter).
    I am not clear yet if the presence of Chronic Pain Syndrome indicates a misdiagnosis of CFS or if this is potentially a diagnosis you might have in addition to one of CFS. Please note that chronic pain is a common symptom of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
    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 people 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 be due to a drop in blood pressure - this is called orthostatic hypotension. Dizziness is also a common symptom of hypoglycemia.
    The cause of PoTS is not known. Ask your medical practitioner if any treatment is available. Visit www.potsuk.org for more information.
  • Multiple Sclerosis
    A friend's diagnosis was changed from Myalgic Encephalomyelitis to Multiple Sclerosis. Many symptoms  overlap, including chronic fatigue.
  • 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. Someone has advised me that she was misdiagnosed as CFS and was later diagnosed with UCTD. However, fatigue is not listed as a symptom. Please do your own research. You can read more about UCTD here.

Diet related conditions which can lead to a potential misdiagnosis of Chronic Fatigue Syndrome

It is well worth checking to see if a change to your diet can relieve the symptoms of Chronic Fatigue Syndrome.

  • Food allergies
    Food allergies can be tested for.
  • Food sensitivities
    I know someone who cut out various foods and has experienced long term recovery as a result
  • 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. Food allergies and
    food sensitivities
    Both food allergies and food sensitivities can cause serious symptoms including chronic fatigue.
    With a food sensitivity you may not notice feeling worse after eating a certain food.
  • Hypoglycemia
    Consider hypoglycemia if you need to eat frequently and experience dizziness if you do not eat frequently. Reactive hypoglycemia is often a symptom not a cause of Chronic Fatigue Syndrome. Hypoglycemia is a prevalent symptom for people with CFS/ME. It is well worth adjusting your eating patterns to see if you experience relief.
  • Aspartame poisoning
    If you drink a lot of fizzy drinks or sodas, consider aspartame poisoning.
  • Leaky Gut Syndrome or intestinal permeability and Irritable Bowel Syndrome
    Leaky Gut is often mentioned by alternative practitioners. The NHS is unconvinced by this health label and unconvinced by the claims made for diets that can help.
    In contrast, the NHS take Irritable Bowel Syndrome IBS seriously and offers advice.

    Consider that you may have IBS, and therefore a misdiagnosis of CFS, if fatigue is accompanied by
    bloating, diarrhoea, constipation and stomach cramps.

    Advice for gut health includes eating fermented foods like kefir
    and avoiding unnecessary antibiotics.

Deficiencies that can lead to a potential misdiagnosis of Chronic Fatigue Syndrome

  • 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.
    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
    Or cut and past this link for an article on ME/ CFS and the thyroid.
  • 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.
  • Hormone Deficiency
    I have read two accounts of hormone deficiency causing CFS symptoms lately. This is a new one on 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 CFS symptom of post exertional malaise.

Environmental cause leading to a potential misdiagnosis of CFS

As with so many other possible causes of CFS, the following diagnoses may replace or go alongside a CFS diagnosis. 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 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 Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, or if you notice that your symptoms reduce greatly when you stay elsewhere.
    To find out more, search online for the names of Dr Jack Thrasher, Dr Shoemaker, Dr Janette Hope or Dr David Ross. These doctors have done research in the subject of mold as a cause of illness.
    AVOIDANCE is the first bit of advice, but there are also detoxification protocols you can follow.

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 CFS may follow on from a back or neck injury. The treatment is gentle physiotherapy.
  • 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 CFS.
    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 can 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 CFS.
    Read more at https://www.bbc.co.uk/news/uk-northern-ireland-43245267

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 people 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.

Wishing you healing both within and beyond illness,


Katherine T Owen

Katherine is author of this website www.HealingCFSME.com

She is author of Be Loved, Beloved (lulu.com or kindle)

The cause of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis is not known. Nonetheless, those of us living with the illness often get asked the question: What is the cause of CFS?
Click through to read some suggestions of how to answer this question.

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