Chronic Fatigue Syndrome: HIP's Roadmap for Testing and Treatment

Extensive guide to ME/CFS testing put together by a patient

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    Chronic Fatigue Syndrome (ME/CFS) - A Roadmap for Testing and Treatment Part I: Diagnosis by Hip


    A superb resource on diagnosing the problems found in ME/CFS with an emphasis on pathogen testing, antivirals, adjunct treatments many doctors (low dose naltrexone/B12/methylation), gut issues (IBS, SIBO, Celiac, etc.), POTS and others.

    Also includes test laboratories, a list of US, UK and European ME/CFS experts and a place to get good bulk supplements at a cheap price.

    Produced by a patient with extensive knowledge of ME/CFS. It's great to see all this information in one place.

    Introduction

    Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and usually abbreviated to ME/CFS, is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and an array of other symptoms.

    The following guidelines will help you determine: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory tests can be performed to identify the infections and other possible factors that underpin your ME/CFS, and: (3) what treatments you can follow to address these infections and factors, and treat the symptoms that arise from them.

    Chronic Fatigue Syndrome - Diagnosis

    There are currently no laboratory tests or biomarkers that can be singularly used to diagnose ME/CFS, so diagnosis is performed on symptoms alone. ME/CFS manifests a whole array of clinical symptoms, both physical and mental/cognitive, which typically include the following:

    SYMPTOMS
    • Persistent fatigue not due to ongoing exertion, and not really relieved by rest. The fatigue is of a new onset, and greatly reduces activity levels, compared to before the onset. Unrefreshing sleep, often with a disturbed circadian rhythm.
    • Cognitive dysfunction (also known as brain fog) which consists of: short-term memory and working memory deficits, problems recalling words or names, loss of focus and awareness, disorientation.
    • Mood disorders which may include: emotional sensitivity, emotional lability (unstable or exaggerated emotion) and irritability. Anxiety, panic attacks, and depression are common comorbidities in ME/CFS.
    • Post-exertional malaise: physical or mental exertion triggers a state of profoundly worsened symptoms. This appears right after the exertion, or hours or days later. This state then lasts for days or weeks.
    • Abdominal: gut pain, irritable bowel, diarrhea.
    • Headaches of a new type. Chest pain.
    • Tinnitus, dizziness, balance problems, fainting. Irregular heartbeat. Chronic sore throat or a recurring sore throat. Chronic cough. Sensitivities to sounds, light, chaotic or busy environments, heat or cold.
    • Intolerances to foods, alcohol, odors, chemicals, pollen or medications may appear. Dry mouth, dry eyes, blurred vision.
    • Muscles: aches, pain, weakness, or tingling sensations in muscles. Lymph nodes: enlarged or painful in the neck and armpits.
    • Joint pain: moving from one joint to another, but without swelling or redness.
    • Orthostatic intolerance: an upright posture (standing up) creates symptoms such as fatigue, dizziness, nausea, greatly increased heart rate, sweating, lightheadedness, blood pressure drop, and sometimes passing out.

    For the complete set of symptoms formally used for ME/CFS diagnosis, see the CDC 1994 CFS Criteria, theCanadian Consensus ME/CFS Criteria or the International Consensus ME/CFS Criteria.

    Ruling Out Other Conditions

    The inherent problem with diagnosing ME/CFS by its symptoms is that many of the same symptoms manifest in other diseases and conditions such as: Lyme disease, hypothyroidism, celiac disease, lupus, anemia, hepatitis B or C, and many others.

    Thus if you have symptoms resembling chronic fatigue syndrome, you and your doctor first need to rule out diseases and conditions with very similar symptoms before a diagnosis of ME/CFS can be given with reasonable certainty.

    CONDITIONS

    Lyme disease


    Lyme disease is believed to be caused by a chronic infection with certain species of Borrelia bacteria. These bacteria are contracted through the bite of infected Ixodes ticks. When Borrelia is first contracted through the bite of an infected tick, it often (but not always) causes a characteristic erythema migrans rash.

    Early symptoms of Lyme disease include: fever, headache, fatigue and depression. Borrelia ELISA + western Blot Dr A Martin Lerner uses western blot and ELISA to test for Borrelia burgdorferi IgM and IgG antibodies.1

    This combination of ELISA followed by a western blot (also called immunoblot) has been shown to be nearly 100% reliable in diagnosing Lyme disease.1Results are considered positive only when both the ELISA and western blot are positive.1

    More info on testing for Lyme disease: Lyme Testing

    Symptoms: in Lyme there is often pain and swelling in the large joints, most often the knees; by contrast in ME/CFS there can sometimes be pain in the joints, but this occurs without swelling. Facial palsy can occur in Lyme, but this does not occur in ME/CFS. These differences in symptoms can act as a differential diagnosis, to help distinguish Lyme disease from ME/CFS. Living or working in a Lyme risk area increases the likelihood you may have Lyme. This chart shows the incidence (and thus the risk) of Lyme across US states.

    Note: although here we are trying to differentiate Lyme disease from ME/CFS, some doctors view Lyme as just a particular form of ME/CFS.

    Hypothyroidism

    Hypothyroidism occurs when your thyroid gland does not produce enough of the thyroid hormone thyroxine. The symptoms of hypothyroidism are quite similar to those of ME/CFS. Hypothyroidism is diagnosed by a blood test which measures the levels of various thyroid hormones.

    Celiac disease

    Celiac disease is an autoimmune reaction triggered by gluten, causing damage to the small intestine and nutrient malabsorption. Celiac disease symptoms vary widely between patients, but can resemble those of ME/CFS.

    Info: Celiac Disease Symptoms. Transglutaminase antibody blood test and an upper endoscopy with biopsy of the duodenum are used to diagnose celiac disease.

    Since celiac symptoms greatly improve after removing ALL gluten from the diet, if you feel much better going gluten-free, it hints you might have celiac disease (though gluten sensitive people without celiac disease will also feel better going gluten-free).

    Systemic lupus erythematosus (SLE)

    SLE is an autoimmune diseases that can cause various symptoms such as joint pains, muscle pains, skin rashes, fatigue and brain fog.

    Testing - Antinuclear antibody test (ANA). Nearly all patients with systemic lupus erythematosus (SLE) will have a positive ANA result, but in ME/CFS patients a positive ANA is no more common than in the general population (around 3% to 15% of the general population have a positive ANA).1

    Though note that ME/CFS patients who also have autoimmune conditions such as Sjögren's syndrome or Hashimoto’s thyroiditis are more likely to have a positive ANA. So while not perfect, the ANA test can be a useful tool to help distinguish SLE from ME/CFS.

    Up to 50% of SLE patients exhibit a red butterfly rash on the face, which is not found in ME/CFS.

    Anemia

    Anemia is a decrease in the number of red blood cells, or a decrease in the amount of hemoglobin in those cells, either of which results in a reduced ability of the blood to carry oxygen. The symptoms of anemia are similar to those of ME/CFS. Anemia can be diagnosed by a full blood count.

    More info on testing for anemia: How Anemia Is Diagnosed and Treated.

    Hepatitis B or C virus infection

    Chronic hepatitis B and hepatitis C viral infections can produce symptoms that resemble those of ME/CFS. Hepatitis B virus can be caught from unprotected sex, including anal and oral sex, and also from sharing needles to inject street drugs. Hepatitis C virus is most commonly caught by sharing of needles to inject street drugs, and is sometimes caught from unprotected sex. Your doctor or a sexual health clinic can provide testing for hepatitis B and hepatitis C virus infections.

    For more info on diseases that have similar symptoms to ME/CFS, see: AAFP ME/CFS Differential Diagnosis, Dr Myhill's ME/CFS Differential Diagnosis and Diseases similar to ME/CFS.