A health care scandal that had run in silenceþ.

[Guest guest]

The following is a Google English translation of an opinion piece

published today in a Swedish newspaper.

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Google English translation-

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original-

http://www.svd.se/opinion/brannpunkt/en-vardskandal-i-det-tysta_6938371.svd

A health care scandal that had run in silence

March 20, 2012

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 V & auml;stra G & ouml;taland 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:

1. The first- Establishment of specialist ME/CFS clinics in each

county that can provide diagnostic, counseling, symptom-relieving

treatment, and follow international biomedical research.

2. The second- Establishment of a national competence, starting from

the specialists' knowledge of ME/CFS project in Stockholm.

3. 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 EVENG & Aring;RD

Professor, Department of Clinical Microbiology, Ume & aring; University

Footnote: Professors above signs the article, as independent

researchers. They have no financial links to the RME or any other

patient group.