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"An ongoing medical scandal of major proportions"
Published today 0:49
ME needs attention, says the five authors of the article. The disease is characterized among other things by a chronic fatigue, which can not rest away.
Photo: Chris Pancewicz / Alamy ME needs attention, says the five authors of the article. The disease is characterized among other things by a chronic fatigue, which can not rest away.
Affliction that belittled. At least 40,000 Swedish suffer the often incurable disease ME, which is characterized by chronic pain and fatigue. This means that more has ME than breast cancer or ms. Yet, awareness and knowledge embarrassingly low. It must be modified, writes representatives of five parliamentary parties.
It is often said that the medical knowledge content traded for each new decade. This means that new knowledge comes to about known diseases, but also to new diseases and disease groups sometimes can be defined. Unlike the previous knowledge, it is the latter often subject to more suspicion from both the profession and the public, a suspicion which, unfortunately, often bordering on prejudice or pure contempt for the messenger's commitment to wanting to inform and seek help for those affected.
Today, diagnosis of fibromyalgia accepted worldwide. So it was not before 1990, when the 2-4 percent of the population, of which 90 percent are women, who suffered from this chronic pain conditions often mentioned in the patient's medical records SVBK; "Pain, ache and burn the witches." This contemptuous attitude toward suffering fellow men then came to be amended so that, hopefully, the ones shown in this unsympathetic attitude realized that it was they and not the patients who had no current medical knowledge.
A fibromyalgia related chronic neurological disorder, which today unfortunately is prone to the same contempt in Sweden that fibromyalgia was more than 30 years ago, the disease myalgic encephalomyelitis (ME). ME is characterized by chronic fatigue syndrome that does not go to rest away. It can be traced back to England in the fifties for then to describe an outbreak of an exhausting illness that hit previously healthy people as an aftermath to viral and bacterial infections. WHO classified the disease in 1969 as a more extensive disorder of the central nervous system.
After a major outbreak in the U.S. in the 1980s is ME today considered to be a widespread disease with an estimated prevalence of at least 0.4 percent of the studied populations. Although these are still lacking in Sweden, the same presence here mean that, conservatively, 40,000 Swedes may suffer from the disease today. ME is in this case more common than for example, multiple sclerosis (MS) and breast cancer (source: Gotahälsan).
Despite this, both the awareness that knowledge about ME embarrassingly rudimentary compared to most other diseases in both health care and the general public in Sweden in 2014. By that diagnosis is greatly neglected in our country compared with many other countries following natural to treatment, investigation and treatment of ME has largely been absent from almost all of our health care principals care. This must be modified!
ME disease affects both adults and children, men and women, but more often women. You see two peaks in the age of onset, one between about 15 and 20 years of age and one between about 35 and 45 years of age. It is therefore not unusual for relatively young people affected and that several families diagnosed by the process of any infectious disease. It occurs in epidemics that even groups of people are affected, either in a particular geographic region or among people who hang out socially. But the dark figure is still high when most affected, perhaps as many as 80-90 percent of the sick, do not get a correct ME diagnosis within a reasonable time. In turn, it follows that the necessary measures can be taken to support both sick as relatives often absent.
ME has a mixed symptom picture with disorders of both mental and physical functions. Besides the characteristic, almost paralyzing, fatigue, not to be confused with the now so common diagnosed mental fatigue syndrome usually occurs pains in muscles, joints, and sometimes a specific type of headache, occasionally even of migraine-. Different types of sleep disorders are common, and typically is that you do not feel refreshed after even a long period of sleep. Physiologically considered disorders of the immune, nervous and endocrine systems, as well as symptoms of cardiac, vascular, gastrointestinal system may occur.
ME is also characterized by often substantial variations with generally poorer health status for a shorter as well as longer time intervals. Such relapses of ME is unpredictable but can be triggered by stress loading of either body or mind. ME is unfortunately for most sufferers a life-long disease. The prognosis for full recovery is poor and only a few to more than 10 percent is estimated today to be able to regain the same level of health as they had before the onset of illness.
Internationally, much research into ME. Subsequent years' results of this suggests that some type of serious neuro-immunological activation, possibly due to an autoimmune process may be background reason for ME debuts clinically. The onset of ME affects your ability to work, the individual's social relationships, taking care of oneself and also the normal self-image could be damaged, which can lead to a crisis.
Unfortunately still missing curative or general treatment that can relieve most of the ME symptoms simultaneously. The treatment on offer may focus on individual symptoms and providing support for self-help with the goal of improving quality of life will be achieved. Despite the fact that not everyone will be improved a lot, there is still a hope today for many to some relief and improvement should be achieved, provided that current knowledge about ME better reach out in Sweden than is currently the case.
We parliamentarians therefore, across party and block boundaries, formed a network to support the ME-patients. The network aims at using the Patient Association for ME better than before reaching out with information to healthcare and the public about the condition. The network has also pledged to create a national center of excellence in support of diagnosis, treatment, and research into ME.
We want from our national political platform with joint forces affect government and relevant authorities to act urgently to create such an important support to a neglected group of people who are suffering from too badly drawn attention of public health scourges that are around around us right here and now.
What could be more appropriate than to peddle this political ambition of the Swedish people during the month of May when international ME-day falls, so that the problem can be lifted to greater awareness in all countries? Not to take such an opportunity would be in our opinion that politicians ignore an ongoing medical scandal of great proportions.
Finn Bengtsson (M) Sven Britton (S) Barbro Westerholm (FP) Agneta Luttropp (MP) Eva Olofsson (V)
