Monday, 24 October 2011

Norway's Directorate of Health Apologises for Treatment of ME Patients

http://www.euro-me.org/news-Q42011-003.htm

The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen (click here).

After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage since then the Norwegian Directorate of Health gave a short statement on TV2 channel, see TV2 Nettavisen (click here).

A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME.

Such a public apology from a governmental health agency has never occurred before.

Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health made the following statement

"Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg."
"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Patients have thanked Norwegian channel TV2 for their massive media campaign - click here.

The TV2 channel has set up a web page containing all media coverage they have had – which includes easy access to writings and video clips - click here.


The Norwegian research project referred to has, at long last, got a mention on the BBC website -

Immune system defect may cause ME http://www.bbc.co.uk/news/health-15401746

Researchers in Norway believe Chronic Fatigue Syndrome (CFS), also known as ME, may be caused by a wayward immune system attacking the body.

The illness, the cause of which is uncertain and has no known cure, has attracted significant controversy.

A small study, reported in PLoS One, showed a cancer drug, which inhibited the immune system, relieved symptoms in some patients.

The ME Association said the findings were "very encouraging news".

Doctors in Norway stumbled across their first clue in 2004 when treating a patient with both Hodgkin's lymphoma, a cancer of the white blood cells, and CFS.

When she received cancer treatment, her fatigue symptoms improved for five months.

'Dramatic'

The latest study, carried out at the Haukeland University Hospital in Bergen, built on the previous discovery by testing 30 patients with CFS.

Half were given two doses of Rituximab, a cancer drug which eliminates a type of white blood cell, while the other half were given a fake treatment.

In those patients receiving the drug, 67% reported an improvement in a score of their fatigue levels. Just 13% showed any improvement in the sham group.

Øystein Fluge, an oncology consultant at the hospital, told the BBC: "There was a varied response: none, moderate, dramatic relief of all symptoms.

"Two had no recurrence [of their symptoms], their life was turned completely around very dramatically."

Their theory is that a type of white blood cell, B lymphocytes, are producing an antibody which attacks the body.

The drug wipes out the lymphocytes which in some cases may "reset the immune system", however, in other patients the fatigue symptoms would return when more B lymphocytes were made.

Caution

Mr Fluge said: "I think the fact that patients responded to treatment, improved cognitive function, fatigue and pain makes us believe we're touching one of the central mechanisms.

"But we're scratching at the surface, I would not characterise this as a major breakthrough."

The researchers are now investigating the effect of giving more doses over a longer period of time.

If their hunch is right it will throw up more questions, such as what is the immune system actually attacking and whether or not an actual test for CFS/ME be developed.

Dr Charles Shepherd, the UK ME Association's medical adviser, said: "The results of this clinical trial are very encouraging news for people with ME.

"Firstly, they help to confirm that there is a significant abnormality in immune system function in this disease.

"Secondly, they indicate that altering the immune system response in ME could be an effective form of treatment for at least a subset of patients.

"We now need further clinical trials of such anti-cancer agents to see if other research groups can replicate these findings."

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