Symptoms

A neuroimmune disease with many symptoms

ME/CFS comes with a wide variety of symptoms — from profound muscle weakness to debilitating cognitive dysfunction to an abnormal intolerance to otherwise minor exertion. However, the symptoms are not random — there is a pattern.

One way to understand the pattern of symptoms in ME/CFS is to review the official diagnostic definition of ME/CFS.

Another way to begin to understand the symptoms in ME/CFS is to listen to discussions between patients. The following are some relevant discussions.

Patient discussions

Neurological

Neuroinflammation:

What exactly is “neuroinflammation”?

A classic 2014 study finally provided proof of neuroinflammation in ME/cfs patients.  Now people are trying to replicate this study.  Interestingly, most of the neuroinflammation appeared to be in the subcortical (autonomic) brain, instead of in the cortical (conscious) brain.  What could these research efforts tell us about the neurological symptoms of ME/cfs?

What is the difference between the subcortical (autonomic) brain and the cortical (conscious) brain?

Cognitive dysfunction (“brain fog”):

In the brain there is a regular firing of nerve cells that form a “thalamo-cortical loop” between the thalamus and the cortex. A reduced speed of this rhythmic firing has been linked to both slow information processing and poor attention/concentration. Since this rhythmic firing can actually be measured with an ElectroEncephaloGram (EEG), does this mean that brain fog could possibly be measured with a simple, non-invasive test?

Hypersensitivity to light (photophobia) and to sound (hyperacusis):

“Sensory gating” is where the brain automatically filters out irrelevant senses so that you can concentrate on relevant tasks. Sensitivity to sound (hyperacusis) & light (photophobia) are common in ME/cfs. Could this be a failure of “sensory gating”?



Dysautonomia:

What exactly is “dysautonomia”?

Orthostatic Intolerance (OI) is a very common symptom of ME/cfs, and may also be seen in Long Covid. Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension (OH) are two types of orthostatic intolerance. But what exactly is the physiological mechanism behind these types of orthostatic intolerance? And what is the role of dysautonomia of blood vessels, blood volume, and the baroreflex?

Do your fingers wrinkle in warm water? Did you know that this finger wrinkling is actually controlled by the autonomic nervous system? Does a lack of finger wrinkling mean dysautonomia? What if anti-inflammatories restore your wrinkles?

People with Severe ME: Do you get light-headed and pale just from sitting up in bed? A new publication finally confirms what you already know- that sitting up causes a sudden drop in blood flow to the brain, due to a type of dysautonomia called “orthostatic intolerance”.

Brain MRI abnormalities:

Does your brain MRI show white matter abnormalities, also known as “T2 Hyperintensities”? Did your neurologist tell you they are “perfectly normal” even though no healthy person your age has them? You’re not alone.

Muscle twitching and sudden limb jerking:

People with ME/cfs often experience involuntary movements such as muscle twitching (fasciculations) or sudden limb jerking (myoclonus). What is the difference between these two types of neurological symptoms?

Anhedonia and Emotional Apathy:

Anhedonia is the condition where you no longer derive pleasure from the things that used to bring you pleasure. Emotional apathy is the condition where you no longer feel the emotions you would normally feel in a given context. (These are both distinct from depression.) Have you developed anhedonia or emotional apathy as a result of coming down with ME/cfs?

Derealization or depersonalization:

Ever feel completely detached from reality? Or feel like you’re detached from yourself? One Phoenix Rising member made a video to try to describe to others what it’s like to live with a feeling of derealization or depersonalization.

Mood Swings:

Some ME/cfs patients report that they developed mood swings as a result of coming down with ME/cfs, something that they never had experienced before. Has this happened to you?

Cardiovascular

Palpitations and arrhythmias:

Do you get frequent “heart-pounding” symptoms, such as palpitations or arrhythmias, that you feel or hear? Have you identified any triggers that cause the “heart pounding”? How do you deal with them?

Exercise intolerance:

Do you have trouble doing any sort of aerobic exercise? You’re not alone, as this exercise intolerance is a core feature of ME/cfs. Interestingly, it happens to have the same physiological basis as orthostatic intolerance!



Respiratory

Air hunger:

Do you experience “air hunger”, that out-of-breath feeling? Even with normal blood oxygen levels? How do you deal with it?

Frequent sighing:

Do you sometimes find yourself sighing repeatedly for no reason? Could it be a type of “air hunger” or is something else going on?

Pain

Rib cage pain:

Costochondritis is a painful inflammation of the rib cage cartilage, and is an intermittent symptom in some ME/cfs patients. Do you notice intermittent pain in the rib cage area? Does it interfere with sleeping on your side?

Gastrointestinal

Problems swallowing (dysphagia):

In the most severe cases of ME/cfs, problems swallowing, problems moving food through the intestines, nausea, and spontaneous vomiting can lead to serious malnutrition. Now, a scientific publication finally talks about this serious issue and discusses the tragic misunderstandings that comes with it.

Worse symptoms after eating:

Some ME/cfs patients report that their symptoms worsen after a meal. What might be behind this? Does this happen to you?

Reflux: heartburn, coughing, vomiting:

What do nausea, heartburn, and coughing have in common? They are all symptoms of different types of gastrointestinal reflux. Reflux occurs when the autonomic system fails to fully close a valve (sphincter) in the throat or stomach. What are the four different types of reflux, and which are associated with which symptom?

Excessive thirst and urination:

People with ME/cfs are sometimes said to “drink like a fish and pee like a racehorse”. Do you experience a lot of thirst, or frequent urination? Why do our bodies do that?

Eyes

Blurry vision:

Do you sometimes get blurred vision? When you try to read, do the letters dance around? Has your illness led you to give up trying to read the things that you used to love reading?

Dry eyes:

Do you suffer from dry eyes? Have you noticed any connection with any other of your ME/cfs symptoms?

Dilated pupils:

Some ME/cfs patients report dysfunction of the pupils in their eyes, whether unusual dilation in both eyes (mydriasis), in only one eye (anisocoria), or rhythmic contractions (hippus). Could this be another type of dysautonomia?

Miscellaneous

Teeth clenching and grinding:

Do you find that you go through periods of noticeable teeth-clenching or teeth-grinding?  Do these periods correspond to taking certain vitamins or minerals?

Erectile dysfunction:

Although it is not often talked about, erectile dysfunction appears to be a possible symptom of ME/cfs. Perhaps this is not surprising, as this appears to be another type of dysautonomia!

Neutropenia:

Have you noticed a consistently low neutrophil count? Or outright neutropenia?

Environmental sensitivity:

Scientists are increasingly finding traces of human-made chemicals throughout our environment. We don’t know if these chemicals are related to environmental sensitivity, but one member attempted to list the different possible chemicals found in our environment, for anyone looking to limit their exposure to these chemicals.

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