What Is M.E/CFS?
Posted on 2002-10-10
What Is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
M.E/CFS is a potentially disabling and chronic condition affecting the central nervous system and the immune system. There is no known single cause of M.E/CFS, although for many it may be a viral trigger. Some sufferers may have a sudden onset, whilst for others it may be a slow and gradual process, with no easily identifiable trigger. M.E/CFS can vary greatly in severity and duration.
Diagnosis of M.E/CFS
There is no specific diagnostic test for M.E/CFS. Patients should be assessed using a holistic approach, for it is only by taking a detailed history of the patient, identifying certain characteristic clinical features, and the investigation and elimination of other illnesses, can a diagnosis of M.E/CFS be made. By the end of the first 6 months a diagnosis should be confirmed for a patient presenting with these characteristic symptoms. M.E/CFS is a complex illness and the list of symptoms can be extensive and profound in the more severe cases.
Research
There is an urgent need for research into the cause of M.E/CFS. Current research shows that dysfunction of the central nervous system and the neuro-endocrine system, particularly the hypothalamic-pituitary-adrenal axis, with secondary immunological disturbance are involved in the development of the condition. It may be in some cases that infection persists.
Prognosis
The complexity of the illness means that prognosis is equally difficult to predict. Some patients will make a slow and gradual progress over several years to full recovery. The majority will make variable progress, with relapses, which may be severe and prolonged, but may reach 70-80% of their former function. Others remain severely disabled with little progress, needing help with their personal needs. A smaller percentage may deteriorate and be bed-bound for much of the time.
Is there a cure for M.E/CFS?
To date there is no known cure for M.E/CFS. Treatments or medications that help some patients do not necessarily help or alleviate those symptoms for others. The patients who obtain a diagnosis of M.E/CFS at an early stage of the illness, and then follow an appropriate management programme, resting during acute stages and relapses, using pacing activity and self management are those who seem to make the most significant progress.
To be classified as having M.E or CFS, the following criteria must be fulfilled and be present for at least 6 months:
A: Severe, debilitating and disabling fatigue, usually made worse by physical exercise - delayed onset of fatigue is characteristic of this illness
B: Plus 4 or more of the following main symptoms:
Main Symptoms:
1. Impaired Cognitive Functions (inability to concentrate, calculation difficulties, memory disturbance, special disorientation, frequently saying the wrong word, being in a 'fog').
2. Chronic Sore throat - often with recurring flu-like illness.
3. Tender and swollen lymph nodes - especially in the neck or underarms.
4. Muscle Pain.
5. Multi-joint pain.
6. New Headaches - often severe
7. Non-refreshing sleep
There are other symptoms which can also be present in many patients with M.E/CFS. These are:
- Sleep disturbance (insomnia, hypersomnia - often with vivid dreams or nightmares
- Severe Muscular weakness without muscle wasting
- Paralysis or Paresis - weakness or short lived paralysis
- Numb or tingling feelings
- Twitching Muscles
- Changes in visual acuity and photophobia -intolerance to light
- Changes to hearing - sensitivity to noise
- Alteration of taste and smell
- Tinnitus - ringing in the ears
- Disequilibrum - severe dizziness
- Feeling spaced out or cloudy
- Blackouts
- Depression
- Anxiety
- Emotional lability - mood swings, may be related to fatigue
Other main symptoms may include:
- Nausea
- Abdominal Pain
- 'Irritable Bowel Syndrome', wind, diarrhoea
- Weight change - usually gain rather than loss
- Temperature disregluation with cold hands and feet
- Low grade fevers, abnormally hot or cold
- Symptoms worsened by extremes of temperature
- Night sweats
- Heart Palpitations
- Severe nasal and other allergies
- Multiple sensitivities or allergic reactions to medicines, food and other substances
- Severe premenstrual syndrome and exacerbation of all symptoms before and during periods in women
Other symptoms may also include:
- Rashes
- Dryness if mucous membranes eg, throat, mouth and eyes
- Ulceration of mouth
- Uncomfortable or frequent urination
- Muscle Spasms
- Chest Pain
- Shortness of breath on exertion
- Disordered sensation in tongue - difficulty moving tongue
- Intolerance of alcohol
- Decreased libido and occasional impotence
- Personality changes (usually a worsening of a previous mild tendency)
- TMJ Syndrome - pain/tenderness of jaw
- Carpal Tunnel syndrome - pressure on nerves in hand with pain/tingling
- Food cravings - especially carbohydrates
- Finger/toenails and hair stop growing
- Hair loss
- Slow healing process of scratches/cuts/bruises
This list is not exhaustive, during the course of M.E/CFS there may be other symptoms experienced that do not appear on these lists.
If you have any questions or would like further information please feel free to e-mail me.