IMEA    
INTERNATIONAL M.E. ASSOCIATION
 
MISSION  AND  GOALS

        

The mission of the International M.E. Association is to provide information and support for people with Myalgic Encephalomyelitis (M.E.) and other HGRV (Human Gamma Retrovirus)-associated illnesses, along with their families, friends and caregivers. It is  also our mission to support research into the biomedical causes of M.E and other HGRV-associated illnesses. This includes research into HGRV (Human Gamma Retrovirus) and other HRV's (Human Retroviruses).

M.E. is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and  muscles, including post-exertional malaise and neurological/cognitive manifestations.


We encourage research into the HGRV retrovirus and other HRV's,   We include in our organization those people
who present or have been diagnosed with M.E according to the International Consensus Criteria regardless of whether they have HGRV or other HRV's.

            
                                                THE NEW INTERNATIONAL CONSENSUS CRITERIA

 

A – Must have post-exertional neuroimmune exhaustion (PENE).

 

            Post-Exertional Neuroimmune Exhaustion (PENE pen ׳ -e) Compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand

with prominent symptoms primarily in the neuroimmune regions.

Characteristics are:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which

may be minimal such as activities of daily living or simple mental tasks, can be

debilitating and cause a relapse.

2. Post-exertional symptom exacerbation: e.g. acute

flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion may occur immediately after activity or be delayed by

hours or days.

4. Recovery period is prolonged, usually taking 24 hours or longer. A

relapse can last days, weeks or longer.

5. Low threshold of physical and mental

fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

 

B – One symptom from three neurological impairment categories

 

            At least One Symptom from three of the following four symptom categories.

1. Neurocognitive Impairments a. Difficulty processing

information: slowed thought, impaired concentration e.g. confusion, disorientation,

cognitive overload, difficulty with making decisions, slowed speech, acquired or

exertional dyslexia b. Short-term memory loss: e.g. difficulty remembering what one

wanted to say, what one was saying, retrieving words, recalling information, poor

working memory

2. Pain

a. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes,

behind the eyes or back of the head that may be associated with cervical muscle

tension; migraine; tension headaches

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints,

abdomen or chest. It is non-inflammatory in nature and often migrates. e.g.

generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria),

myofascial or radiating pain.

3. Sleep Disturbance a. Disturbed sleep patterns: e.g. insomnia, prolonged sleep

including naps, sleeping most of the day and being awake most of the night, frequent

awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares

b. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep,

day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances a. Neurosensory and perceptual:

e.g. inability to focus vision, sensitivity to light, noise, vibration, odor, taste and

touch; impaired depth perception b. Motor: e.g. muscle weakness, twitching, poor

coordination, feeling unsteady on feet, ataxia

 

C – One symptom from three immune/gastro-intestinal/genitourinary impairment categories.

 

          One Symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen

with exertion.

e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be

tender on palpitation

2. Susceptibility to viral infections with prolonged recovery periods

3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel

syndrome

4. Genitourinary:e.g. urinary urgency or frequency, nocturia

5. Sensitivities to food, medications, odors or chemicals

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not

specific to ME but their activation in reaction to exertion is abnormal. The throat may

feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the

tonsillar fossae, which are an indication of immune activation.

 

D – At least one symptom from energy metabolism/transport impairments.

 

1. Cardiovascular: e.g. inability to tolerate an upright position – orthostatic

intolerance, neurally mediated hypotension, postural orthostatic tachycardia

syndrome, palpitations with or without cardiac arrhythmias, lightheadedness/

dizziness

2. Respiratory: e.g. air hunger, labored breathing, fatigue of chest wall muscles

3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal

fluctuations; sweating episodes, recurrent feelings of feverishness with or without low

grade fever, cold extremities

4. Intolerance of extremes of temperature

 

And then there's:

 

Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion, (PENE), but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

 

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Authority and confidence are assured with familiar names such as Dr. Bell, Dr. Chia, Dr de Meirleir, Dr. Bateman and researchers such as Dr. Mikovits, Dr. Broderick, Dr. Light and Dr. Klimas. The less familiar names and the research they have done deserve to be looked up and studied. The whole 29 member panel deserves an award for their work on this very important development.

See:  http://www.mecfsforums.com/wiki/Myalgic_Encephalomyelitis:_International_Consensus_Criteria


GOALS:

* Continue to assure M.E. is coded as a neurological disorder in the future

* Obtain funding for HGRV research

* Obtain blood screening to prevent the spread of HGRV's through blood and blood products

* Present publications that offer effective praise and criticism of HGRV research

* Help to obtain clinical trials for the treatment of M.E. and other HGRV-associated illnesses

* Raise public awareness of M.E. and other HGRV-related issues

* Insist on strict definitions and criteria for M.E. and HGRV in research

* Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis" (M.E.) or this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)

* Encourage development of effective treatments for M.E. and other HGRV-related diseases

* Obtain research to determine causation of M.E. and other HGRV-related diseases

* Obtain research to determine pathophysiology of M.E. and other HGRV-related diseases

* Encourage Development of reliable and readily available testing for HGRV





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Disclaimer: Information contained on this site is not intended to provide medical advice, diagnosis or treatment.
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