Ignorance makes sick in ME even sicker

"Ignorance makes sick in ME even sicker,"

"Debater: Active euthanasia is not justifiable, at the same time you can accommodate some understanding"

"This is an opinion piece. It is the writer who stands for the views that are put forward in the text, not Against."

"the DEBATE. ME is a severe disease that is often triggered by an infection (estimated in the 70-80% of cases), that is to say, you will not be healthy, despite the fact that the infection is probably leaving the body. ME is a neurological disorder in which the sufferers have impaired cognitive ability and many other flu-like symptoms. "

"There is a lot of international research and also some research in Sweden. Much evidence points to that it is about a dysfunktionalitet in the immune system that affects many of the body's systems negatively.nnMånga of the sufferers are so disabled that they can not leave the dwelling, and a the right proportion is absolutely sängbundna. Some need help with everyday things and others need help around the clock. The vast majority can't work."

"► Different diagnostic criteria creates problemnEtt major problem with diagnosis is that historically there are different diagnostic criteria, and the risk of confusion is not only great, but are unfortunately often. The oldest, the most well-known, the diagnostic criteria (Oxford 1991) covers a very broad group, where symtomkravet in principle only consists of unexplained fatigue of at least six months. "

"It does not exclude psychiatric diagnoses, such as this disease, which is treated in a completely different way because it has another unexplained aetiology. "

"the Fukuda criteria (1994), the most used internationally, but certainly psychiatric diagnoses, but does not require exercise-induced deterioration, which is called PEM (Post-Exertional Malaise).nnKardinalsymtomet for ME according to the so-called Kanadakriterierna which is the latest criteria (from 2003) is the exercise-induced deterioration (PEM), for at least 24 hours after the effort. "

"Such a symtomkrav have only Kanadakriterierna, and precisely the criteria to follow in each case the county of Stockholm in the diagnosis of ME. In Stockholm there is, incidentally, the two specialist clinics in the country."

"► Multiple learning outcomes misleads and contributes to the negative stigmatiseringennDå and then presented to both large and small studies where it is claimed that ME patients will get better aktivitetshöjande measures, often in combination with cognitive-behavioral therapy or similar treatments. "

"It is a ”slap in the face” on the many ill people who are really trying to do what they can within the limits of their little energy without becoming even worse. "

"None of these studies have had focus on only Kanadakriterierna. Of course, it does affect families negatively, when they see how bad their partner or children will be of too much activity, both of both mental and physical in nature."

"n► Several high-profile deaths in recent åretnTyvärr arise many problems with the diagnosis, in addition to the disease itself, mainly depending on the above-described and widespread misconceptions and ignorance. The knowledge is generally very low in the primärsjukvården, where the confusion with the psykatriska diagnoses can lead to the wrong treatment. "

"Even among municipalities and public authorities, such as for health Insurance, there is widespread ignorance, even if they do not focus on the diagnosis, but more on ability to work.nnPå recently there have been several high profile deaths where the ME-sick either committed suicide or been killed by close family members. "

"Active euthanasia, or dråpu002Fmord, is in itself obviously not a justifiable act, but at the same time you can accommodate some understanding for the difficult the illness can drive people to madness when the society is not doing enough, but in practice, even against the sick. Unfortunately, there are lots of examples of it. "

"By the experience the organisation has, it is perhaps not the municipalities, which tend to be the most difficult thing to have to do with, more then the social insurance office that all too often do not accept doctor's medical certificate in respect of ME-patients. It has become a considerably tougher climate for ME-sick. Often we are approached by the severely ill who have become utförsäkrade and need help. "

"► What needs to be done?it is necessary, first and foremost, awareness of the diagnosis for all professionals who come into contact with this patient group. The general ignorance leads to stigmatization of the disease state. Of course, it is also important to allocate more funding for research and set up more clinics."

"Norway are investing significantly more than Sweden on research in the ME and are farther forward on their view of ME. Denmark, which lagged behind Sweden in the development of the diagnosis, has now decided to take a closer look at ME from a somatiskt (physical) perspective and not mentally. It is a great achievement for Denmark, ME sick and, hopefully, also for ME sufferers in other countries. "

"nMats Lindström, president of the Association for Svårdiagnostiserade infectious diseases (FSI) which works for better diagnostics and care within the health care system."

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