What is ME/CFS?

The short answer – ME (myalgic encephalomyelitis) is a debilitating disease which affects the body’s central nervous system causing a varied range of serious symptoms.

The long answer

ME (myalgic encephalomyelitis) is a debilitating auto inflammatory disease of the Mitochondria.

Auto inflammatory diseases cause Immune cells to mistake the bodies own cells as invaders and attack them. With ME/CFS, proteins in the mitochondria which transport energy to other cells are attacked.

The body has a primitive innate (inborn) immune system and an adaptive (learning) immune system.  In auto inflammatory diseases, this innate immune system reacts, even though it has never encountered auto antibodies or antigens in the body.

ME/CFS is believed to be genetic in nature, not contagious and can be triggered by simple viral infections or physical trauma when the immune system is under immense strain.

The main issue is the lack of energy being produced and transported to cells and as the body cannot function without adequate energy as time passes the body starts to shut down thus causing many neurological issues.

CFS is an alternative terminology for ME used by health professionals in the uk however there is ongoing controversy with this. See here for more details.

Where does the illness come from?

Scientists now believe that ME/CFS is a genetic mutation which lays dormant until triggered by the immune system. Triggers include :

Virus/Biological

Viral infections that may trigger Functional Neurological Disorder and Myalgic Encephalitis include:

People who catch these types of viruses usually only experience a mild illness (virus dependant) but in some cases the virus travels through the blood stream and attacks the brain or the Lymphatic Nervous System causing Encephalitis or Functional Neurological Disorders.

Physical trauma

Physical trauma, such as a car or motorcycle crash, can trigger ME and Functional Neurological Disorders.  As many as 25 percent of people with FND/ME report that they had an accident that occurred right before their symptoms showed up.

Scientists believe that physical trauma may cause biochemical changes in the brain that trigger the disease. Accidents, injuries, or sudden trauma to the central nervous system (CNS) may result in the different symptoms of severe muscle pain, fatigue, sleep problems and other conditions associated with ME/CFS.

Toxic Substance Exposure

It’s estimated that indoor air pollutants, including mold and mycotoxins may be contributing to more than 50% of patient’s illnesses.

Many patients are unaware that a toxic home or workplace is contributing to their symptoms.

Molds secrete mycotoxins, that can be measured in the urine, such as ochratoxin, aflatoxin, and trichothecenes.  Exposure to mold and mold components is well known to trigger inflammation, allergies and asthma, oxidative stress, and immune dysfunction in both human and animal studies.

Molds have the ability to produce various  symptoms, such as skin rashes, respiratory distress and various types of inflammation, cognitive issues, neurological symptoms, and immune suppression.

Brain Trauma

Psychiatrists used to believe that the illness was a psychological disorder but in 2017 ground breaking research found concrete evidence that ME/CFS is a biological disease of the auto inflammatory variety and not triggered by psychological issues.

The International Classification of Disease (ICD-11) which is due to be finalised in 2017 will have this disease within the neurology section for the first time.

Symptoms of ME

There are many debilitating symptoms of these diseases which vary from patient to patient. This can make it harder to diagnose and treat however there is a distinct set of procedures to gain a diagnosis and FND ME is not diagnosed by elimination of other disorders.

Here is a list of the most reported symptoms:

  • Visual symptoms including loss of vision or double vision
  • Sensitivity to bright light
  • Sensitivity to sound
  • Poor memory and concentration
  • Brain Fog
  • Speech symptoms including dysphonia (whispering speech), slurred or stuttering speech
  • Blackouts (also called dissociative or non-epileptic seizures/attacks) – these may look like epileptic seizures or faints
  • Chronic pain – including fibromyalgia
  • Dizziness
  • Tinitus
  • Headaches
  • Sinusitus
  • Sleep disturbance – either insufficient (insomnia) or excessive (hypersomnia)
  • Limb weakness
  • Post-exertional malaise (PEM)
  • Muscle pain
  • Joint pain
  • Nausea

Treatment for ME

As the causes of ME are varied, so is the required treatment. Recovery of these diseases is very rare and unreported however some symptoms can be relieved with the use of medications.

Before ME/CFS was confirmed as a biological disease, the standard treatment technique was mainy psychiatric – CBT and Graded Exercise Therapy.  But many patients have reported their conditions worsening following Graded Exercise Therapy – some then being bed ridden or requiring wheel chairs.

“The ME Association continues to criticize the use of graded exercise therapy (GET) and cognitive behaviour therapy (CBT) as primary interventions in ME/CFS.

Their position is based on consistent and robust evidence on activity management collected from large numbers of people with ME/CFS – with their latest report indicating that over 70% found that GET made their symptoms worse.

Reputable research has demonstrated that there are significant abnormalities in the muscle, brain and immune system – all of which are almost certainly involved in the production of ME/CFS symptoms, including exercise induced fatigue.

It is deeply depressing to find that NICE is continuing to recommend two forms of treatment that are often ineffective, and in the case of GET potentially harmful.”

Much more research is required and with your help, FiND ME can make a difference.

For references and citations please click here.