Sweden: 'A health care scandal that had run in silence'

20 March 2012: http://translate.google.se/translat...det-tysta_6938371.svd&sl=sv&tl=en&hl&ie=UTF-8

A health care scandal that had run in silence

'We have a large number of seriously ill people who are denied care by the county. Tens of thousands of people suffer from the disease ME / CFS, which is misleading has been called chronic fatigue syndrome. The acute care shortages must now be addressed, writes several professors with the National Association for ME patients.

Imagine that you wake up one morning with severe flu symptoms. The body aches, your head hurts, you feel feverish and exhausted. You have trouble thinking clearly, your throat hurts and you'll barely out of bed.

Then imagine that it will pass. That it continues year after year. Minimum effort makes you worse. The doctors you meet are at a loss, some people claim that you imagine.

The best advice to you is to go home and learn to live with this. That is the situation for thousands of Swedes who suffer from illness myalgic encephalomyelitis, ME / CFS, also known under the misleading name "chronic fatigue syndrome".

ME / CFS is a hard hitting, chronic illness. In 75-80 percent of cases are associated with the onset of infection. Research has demonstrated abnormalities in the nervous, immune and endocrine systems.

Women get the disease twice as often as men. Even children are affected. International research shows that the prevalence is about 0.4 percent, which would mean that Sweden has 40 000 ME / CFS sufferers.

America's health and infectious disease control authority CDC notes that ME / CFS sufferers are just as disabled as patients with MS, SLE / lupus, heart disease or cancer patients during chemotherapy. The hardest hit are tied to their home or completely bedridden. Some require constant care.

Although the disease affects so hard, are almost all ME / CFS patients in Sweden today without care. The knowledge of ME / CFS in the health care system is very small and only a few of those affected have the right diagnosis. The symptoms are often misidentified, causing many unnecessarily degraded.

Almost every county has no care range for ME / CFS patient group. Those who do not live in Stockholm or Gothenburg, or have money to pay privately have practically no opportunity to receive care.

In Norway, a strong performance. Norwegian Directorate of Health, among other things stated that there should be ME / CFS clinics in all Norwegian health regions, as well as mobile teams for home visits to the most severely ill. It should also be set up specially adapted hospital beds with protection from noise and light that might otherwise make the worst sufferers worse.

In Sweden, however, happens to almost nothing. In Stockholm, a unit was established, where patients living in the county may have diagnostic and some help with rehabilitation, but the reception is still only a temporary project and patient pressure is enormous.

Gottfries Clinic receives patients from Vstra Gtaland and Halland. In 17 out of 20 counties missing the opportunity to see a specialist physician with knowledge of ME / CFS.

So we have a large number of seriously ill people who are denied care by the county. Who is responsible? Autonomy of local governments is high in Sweden, but of course the state must act if there is a total lack of care in an area where councils do not live up to their responsibilities.

Last week avstyrkte Parliamentary Social Affairs Committee a motion on the National Board would investigate ME / CFS patients' situation and make suggestions for improvements. No reasons are given in the answer, only references to the "rare disease", a term which, under the Board's definition does not include ME / CFS.

Also on the research side is ME / CFS neglected. There are many promising line that could lead to increased knowledge of disease mechanisms and effective management. Nevertheless, and despite the fact that there are interested and highly competent scientists in Sweden who wants to invest in the area, lack of funds for ME / CFS research.

Therefore, it is certainty that the government makes a specific focus on ME / CFS. Again, Norway serve as a model. The Norwegian government has decided to establish a national competence center for ME / CFS and the allocated earmarked funding for promising biomedical ME / CFS research, and a biobank for ME / CFS.

We now want to see that the Government and Welfare, SKL and the county is acting to address the acute care shortage and ensure that we focus resources on ME / CFS research. Three steps on the road:

The first Establishment of specialist ME / CFS clinics in each county that can provide diagnostic, counseling, symptom-relieving treatment, and follow international biomedical research.

The second Establishment of a national competence, starting from the specialists' knowledge of ME / CFS project in Stockholm.

The third A special investment in biomedical ME / CFS research in the forthcoming research bill. It is important that it is conducted independent research to confirm or refute the findings contained.

LISA FORSTENIUS

Chairman of the National Association for ME patients (RME)

JONAS BLOMBERG

Professor Emeritus, Department of Clinical Microbiology, Uppsala University

JONAS BERGQUIST

Professor, Department of Chemistry - BMC, analytical chemistry and neurochemistry, Uppsala University

BIRGITTA EVEN FARM

Professor, Department of Clinical Microbiology, Ume University

Footnote: Professors above signs the article, as independent researchers. They have no financial links to the RME or any other patient group.'

Indeed. Norway out in front again - if they can pull it off that is. I don't know where it's all going in Europe or the UK. We seem to be spinning our wheels in some respects and in others doing buggar all [sigh].