The time to be referred to as being "chronically fatigued" is OVER !
There are over 5000 reasons to treat ME as a complex , multisystem, metabolic-inflammatory disease, involving profound dysregulation of the central nervous system, cardiovascular abnormalities and autonomic nervous system dysfunction and ZERO, nada, nil, reasons to treat it as a psychiatric condition.
- Why are there no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis?
- Why is there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?
- Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ?
- Why is there is no system of reaching the house and bed bound and treating the most severely affected at home?
- Why are there no biomedical protocols to ensure that every hospital or GP setting knows what to do and how to treat a person with ME?
- Why are the most serious and severe symptoms simply ignored by the NHS?
- Why are patients not being adequately tested on the NHS to ensure that they actually have ME not chronic Lyme disease or other testable but neglected illnesses?
- Why is it acceptable to continue to use the inappropriate umbrella term “CFS” which provides no one with ME a suitable medical service , understanding or adequate investigation of their symptoms and continues to allow inappropriate biopsychosocial pathways to prevail instead of proper medical respect and treatment?
- Why is there no acute hospital ward for the most severely affected?
- Why are there no emergency advice lines specifically for ME?
- Why are GP's and hospitals and consultants allowed to choose whether they treat ME as psychiatric rather than medical illness?
- Why are the most severely affected so shut off from accessing NHS hospital outpatient or inpatient services, they are effectively left at home without adequate medical support reliant on the understanding of GP's without adequate health care monitoring or in depth understanding of the physiology of their illness?
- Why is psychiatry allowed to interfere, control, influence the care and ( lack of ) treatment of people with ME at all?
- Why will the government not make a stand to protect people who currently have the inadequate diagnosis of CFS, ensuring that they are properly investigated, treated and separated from mental health treatment protocols which deny or downplay their physical illness?
- Why are vested interests allowed to dominate ME today, leaving patients without adequate medical respect, proper recognition or understanding of their illness?
- Why are the most severely affected left at risk of misinterpretation and psychiatric abuse still, despite the death from ME of Sophia Mirza ?
- Why is there not a specialist team of highly medically trained specialists available to investigate and treat safely at home, the most ill, understanding the dangers of moving them from a safe environment, without risk of harm?
- Why are all the biomedical research papers which point to numerous physiological dysfunction simply ignored by the NHS and not included in treatment protocols or testing?
- Why is it acceptable and accepted by the government to place on indefinite hold the inappropriate and dangerous NICE guidelines, which were not deemed for for purpose since they were first published by the majority of charities and patient groups.
- Why is there no standard of care training for carers involved with people needing help at home which have ME?
- Why is there is no current consistency of information ? The NHS pathway is unsafe and the description of ME, incorporated into CFS factually inaccurate.
- Why is there a false pretence that people with ME will get better with no medical input ?
- Why are so many ME Charities hopelessly compromised, why are they not all :
- Calling for proper ME aids to be designed and provided for the most severely affected, who are harmed on every level by the ordinary environment ?
- Campaigning for a biomedical, not a psychosocial pathway ?
- Demanding psychiatry be removed from first line involvement in ME ?
- Leading the way in the separation of ME from CFS ?
- Backing high-end ME not CFS biomedical research ?
- Ensuring the ICC Criteria are applied across the board ?
- Raising awareness in the media of the real experience of Severe ME , not this constant promotion of “recovery” and “think yourself well”; the positive image denies the true reality ?
- Raising awareness of the psychiatric abuse of children and young adults with ME ?
- Being a voice to protect, rather than a voice to collude ?
As Thomas Hennessy said : You can NEVER be a second class citizen without your consent!" AMEN. The time to be referred to as being "chronically fatigued" is OVER! NO MAS! Let 2015 be the year we ALL take a stand !!