ME Research UK posted a message on their Facebook page which is copied below. What is particularly significant to me is not just their confirmation of ME as a severe physical illness, but that they state a prevalence of around 200,000 people in the UK. This is close to the figure given in the film which applies to the illness suffered by the people in the film.
Although 200,000 is a high incidence for an illness, it is way smaller than the spectacular figures for ‘CFS or ME’ given by Esther Crawley. These were widely publicised and are given on the Bristol University website as a prevalence of 1-2% – which is 6000,000 to 1.2 million people in the UK. http://www.bris.ac.uk/news/2013/9313.html The CFS/ME Research Collaborative gave a figure three times larger than MERUK, claiming over 600,000 people were affected.
It is important to remember that illnesses with completely different prevalence rates can not possibly be the same illness. They do not have the same signs, symptoms or causes and a ‘one size fits all’ treatment approach will have life destroying consequences for some people, as the film shows. Patients are then blamed and abandoned because they do not fit the officially promoted view!
ME AWARENESS WEEK 2013 – Let’s be Aware of the Science of ME!
Posting taken from ME Research UK Facebook page ME Research UK
The past 20 years have seen significant progress in the scientific understanding of ME.
The major findings are:
• Inflammation and immune activation are involved. The evidence of chronic T cell activation, increased cytokines, raised oxidative stress, and low natural killer cells point to a chronic state of low-grade immune upregulation.
• Infection is important. Illness starts with an acute, infectious-like episode in many patients. The main agents implicated in causing or maintaining the disease include enteroviruses (such as coxsackievirus), Epstein-Barr virus, cytomegalovirus and human herpes virus 6.
• Neurocognitive abnormalities are prevalent. It is well established that cognitive problems – mainly with memory, attention/concentration and reaction time – frequently occur.
• Endocrine (hormonal) abnormalities can be found. Hypothalamic-pituitary-adrenal axis dysfunction is a well-recognised feature.
• Psychiatry is not the answer. We know that the illness is not a form of depression, nor a primary psychiatric condition. As in other chronic diseases, psychological interventions can help some people to cope and to manage their symptoms until a cure is found.
• Genetic factors play a part, as shown by family and twin studies.
• Neurological abnormalities can be detected. There is good evidence of autonomic nervous system dysfunction, including ‘orthostatic intolerance’ which causes problems on standing. Also, brain structure and blood flow abnormalities have been identified, and central sensitization, due to an abnormal increase in the firing of nerve cells in the spine, may be important.
• Muscle function is impaired in some patients, with abnormalities to both skeletal muscle and cardiac ‘bioenergetics’.
• Symptoms are serious, and chronic illness is common. We now know that the most common symptoms of ME – including pain, sleep disorders and problems with vision – are day-to-day challenges affecting the quality of life of patients, most of whom endure long-term chronic illness.
• Prevalence is high. Epidemiological studies show that ME – under its many different names, such as postviral fatigue syndrome, ME/CFS, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome etc. – affects around 200,000 people in the UK and 1 million in the USA. This makes the disease more prevalent than multiple sclerosis, systemic lupus and HIV infection.
Biomedical research has made significant progress, but imagine what could be done in the next 20 years by a concerted effort to fund programs of research across the globe!