The situation of Myalgic Encephalomyelitis Patients in Ireland - A Summary

 Let's Talk about 

Myalgic Encephalomyelitis

(ME)

1 National M.E. Policy- adopt ICC

2. Appoint a consultant

3. Train Health Professionals

4. Include M.E. in all training of GP's Nurses and Social Care

5. Create clear Clinical Pathways

The situation of Myalgic Encephalomyelitis Patients in Ireland

Summary

•        ME  is an acquired, complex, neurological disorder affecting multiple body systems. It is classified by the WHO in their International Classification of Diseases as Neurological (under code G.93.3) since 1969

•   Despite what the public are led to believe, it is not difficult to diagnose. The International Consensus Criteria 2011 is a comprehensive diagnostic tool for medical professionals and was developed by world experts with a combined total of 400 years treating over 50,000 patients with ME throughout the world

•        Common symptoms include headaches, bone and muscle pain, swollen lymph nodes, muscle weakness, muscle spasms, seizures, neck pain, vision abnormalities, cognitive impairment, photo sensitivity, noise sensitivity, paraesthesia, bladder and bowel dysfunction, digestive dysfunction, sleep dysfunction, cardiovascular abnormalities, etc

•      The body’s ability to generate and produce energy at a cellular level is seriously impaired, meaning systems and organs cannot function properly, causing progressive systemic deterioration

•        Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal system of ME Essentially this means that any action – physical, cognitive, emotional, social – which demands energy from the body will impact on the patient’s condition, causing a marked worsening of all symptoms which can last for days, weeks or months – sometimes even causing a permanent, non-recoverable relapse.

•      Many people with ME are dependent on carers to meet their basic needs for food and personal care

•      ME is a spectrum disease and those at the very severe end cannot eat or swallow, cannot toilet themselves, cannot speak, are paralysed and living in excruciating pain with a myriad of complex systems

•       People with ME have compromised immune systems, leaving them open to opportunistic infections and other pathogens. There is a high rate of cancer amongst patients.

•       Deaths among the ME population are rarely attributed to their ME but more usually attributed to secondary causes such as cancers, cardiac issues and, in many cases, suicide. Many ME patients throughout the world have taken their own lives because they simply cannot live with the neglect of this condition and the lack of hope on the horizon

•        Life expectancy is shortened as systemic deterioration becomes cumulative

•       There are an estimated 9,000 to 18,000 people living with Myalgic Encephalomyelitis in Ireland. These figures are based on extrapolating from data in other countries. There is no collation of data on numbers with the condition here in Ireland

•        People with ME in Ireland are often left to rot in darkened bedrooms because their doctors do not understand or ‘believe’ in ME.  

•        There are NO ME specialist hospital consultants within the HSE

•        The HSE have failed to put in place clear diagnostic criteria and appropriate careplan pathways for people with ME in Ireland

•        The Royal Academy of Medicine in Ireland concluded in a published paper on ME in September 2010 “There is a need for further education of the medical profession on this debilitating condition and there is clearly a need for further research into treatment which directly impacts upon the quality of sufferers”. Eight years later, this is still the case. Nothing has changed.

•        Children as young as four years of age have been diagnosed with ME There are older young people ‘stuck’ in the Irish paediatric hospital system because there are no appropriate adult hospital services to refer them on to.