Yes You remember better than me, but they have spoken to several offices and institutions, and I wouldn't be surprised at all if they've also spoken to the Norwegian Labour and Welfare administration. And do you remember the doctor from the Norwegian Labour and Welfare administration who recently called out ME in the media as a "trendy illness"? Yesterday he got appointed as judge for the Social Security Tribunal
That's OK. There would seem to be sufficient evidence to require him to recuse himself from hearing any case involving ME.
The major obstacle is everything that’s not in place, the lacks and all work that needs to be done in medicine. It all starts there, and when messy beyond, no surprise it’s messy full circle. I find it fresh and welcoming that somebody looks more closely at this from a judicial point of view. We need to highlight these angles to. It’s a fact that many patients gets pressured way to far, in order to undergo things that are controversial, and more important, don’t have the necessary medical evidence of benefit. A lot of eminence, and hardly any evidence make way for harm. In mild terms, that is very problematic. ME-patients are for sure not the only patients that may experience a lack of necessary understanding of a problem, but in which other areas does the welfare administration push patients to undergo things that have great possibility of doing harm both to the patients and the society? When sidelined in medicine like some kind of paria, well surely that also make way for double standards, extraordinary “flexible” interpretation of legislation and such. The individual cost of double standards are often quite horrific. It has all kind of legal and ethical problems to it. And as a thought; I would like to see the mere mathematics of how they think. What justifies that you push patients trough uncertain interventions? One patient benefitting, seven not experiencing anything of value, two experiencing harm. If so, what to do? How does this fit with fundamental medical principles? Besides the great individual costs, the push trough approach of the welfare administration actually are in conflict with what the intention and goal ought to be, - trying to get people better, maybe more productive and then again, function as contributors. Instead the opposite often happens when pushing them trough and patients ends up like lifelong costs to society. At last: worth mentioning that there are exceptions to malpractice and that some experience valuable help from the welfare administration , so it is not all black and white, but there are lengths to go before making the situation acceptable in legal and ethical terms.
This is the damage caused by not - -Defining harms in a reasonable & sensible way -Not having appropriate means to record harms -Not listening to patients or denying they are credible witnesses to their own experience It also highlights that the people in charge of decisions and policy making have no concept of life with chronic illness. In the past certain political leaders have spent decades under house arrest partly to stop the spread of ideas, partly as punishment. ME patients are prisoners within their own bodies, simple house arrest would be freedom beyond our wildest dreams! No one would out themselves through this voluntarily. None of us want to live like this.
This isn't specifically about ME, but still relevant. An opinion piece about the privatisation of healthcare in Sweden, written by senior professors at Uppsala University and Karolinska Institutet. (Sven Britton is a member of the Swedish ME patient organisation's scientific advisory board. Marie Åsberg is a psychiatrist and fatigue & burnout researcher, has been involved in several ME projects over the years.) Läkartidningen: Vart är vården på väg? Google translate, English: What will happen to healthcare?
Psychologist Grete Lilledalen has once again written a great opinion piece about ME in the journal of the Norwegian psychologist association. She is critical of the biopsychosocial approach to ME and warns against victim blaming. A typical course of illness is that previously mentally and physically healthy children and adults, often within a short time, develop a complex symptom picture consisting of cognitive, neurological and immunological disorders. Hypersensitivity to sensory stimuli, severe pain, chronic nausea, dizziness, migraine and unexplained fatigue are part of the symptom picture. The majority of ME sufferers have thus lived a normal life with work, school, physical and social activity. Grief, frustration and withdrawal are normal reactions to debilitating, life-depriving illness. Instead of building the stigma of "treatment resistance" and "victim blaming" one should look at whether treatment options can be improved and changed. På sporet av en mindre betent ME-debatt google translation: On the track of a less inflamed ME debate
Kränkt hos tandläkaren – nu får ME-sjuk kvinna ersättning https://sverigesradio.se/sida/artikel.aspx?programid=98&artikel=7417148
A new one from the same person, even worse than before. He gives the impression of being totally caught within his own ill-informed prejudices. https://www.varden.no/meninger/me-aktivisme/ google translate: https://translate.google.com/translate?sl=no&tl=en&u=https://www.varden.no/meninger/me-aktivisme/
The usual awful old guff. He also says- Right. It simply does not occur to them that the reason so many ME patients might seem to be struggling with life, is because they are sick. They might have gone to the doctor several times struggling to recover from an virus. Then when tests show nothing they don't know where to turn. Months or even years may have already elapsed since first onset. Patients are almost certainly in constant PEM, they are getting nowhere, without any answers and their physical and cognitive function is in decline. Why does it never occur to these guys that they have the cart before the horse?
This man does me speechless. I would like to know what his agenda really is. Why does this man need to speculate with his opinions about this? It's worthless anyway. Many of his "facts" to substantiate his speculations are not just bad, they are completely wrong too. For what it's worth, he got huge resistance in the comment-field below the article. None of them agrees with him. Edit: This doctor-propaganda makes patients lose faith and trust to the public health care. Not good!
And after over 40 years as a general practitioner and many thousands of patient interviews, Clinical opinion is the lowest ranking of formal evidence, and for good reason.
Everything is dealt with perfectly. It’s a thing of beauty. Medicine never fail and everything is discovered. If no answer already, it does not exist and/or it’s all some sort of failure by the patient. Period. There is no such thing as being chronically ill, even if we can’t intervene in any special way, don’t have any options available. And it is impossible to even hypothesize that there may be something wrong that we don’t fully understand, and that lack of repairing it/minimize consequences, actually may be cause that many patients don’t recover. What an unheard idea! May be both a humble and curious sound approach, but sorry we don’t do that here. After all, we know everything! And everyone not getting better or fully recovered is in that state because of so-called “perpetuating factors” of disease. These are based on all kinds of events and factors by the patient, just fill inn what suits you. We don’t care about facts, we just turn them completely upside-down. No need to discuss where money really has been spent in research. No need to look at results. No need to mention that biomedical research actually have been close to non-exciting, except from a small study here and there. No need to take into account that for over 30 years BPS have been in the driving seat getting most of small resources and produced more or less poorly designed and worthless research that tell us close to nothing. We still want more of this! In retrospect it takes is nowhere, but more, more! We won’t stop oversell it and the poorly results, although the approach hurts patients in all kind of ways, research wise, when they seek advice, are in contact with the welfare department or whatever. We just don’t want any well designed biomedical research of proportions that may produce important knowledge. We don’t want it, we want more of what we’ve had for 30 years and taken us nowhere. Period. No need for patients to engage and discuss if that still is well spent money. Cause it is. Cause we know better from 40 years of clinical experience. And 40 years of bad attitudes and prejudice towards what we don’t understand. But the patients are treated perfectly, and they should just shut up and be grateful for the perfectly handled situation and status. We know that some patients presumably are better with the trademarked protected LP. We also know that some are getting harmed by the same intervention. But we don’t really care about the latter. If one gets better and two gets harmed, well we don’t really bother? Medical principles are not that important, after all. Instead of trying to figure out why, how patients where before and after LP, how they complied and managed, instead of trying to diagnose patients better and learn, we just lump all together and oversell that everyone needs this, at least must try. Cause after all it can’t harm? Just look at 60-80 anecdotes, our evidence. No need to pay attention to the many hundreds and thousands experience of things the other way around. Although they already have tried the same approach and experienced harm, they should do it again! Baaaah. This guy produces this kind of stuff a couple of times a year or so. Instead of engaging properly and updating, it is old shit in old wrapping. The merry go round for eternity. Nothing to see here, move on.
Opinon piece Dagens Medicin ”Vår grund för diagnos ifrågasätts av Försäkringskassan” https://www.dagensmedicin.se/artikl...for-diagnos-ifragasatts-av-forsakringskassan/
Information film about ME and PEM from the Norwegian ME Association - Rogaland County. English version is in the making. https://www.youtube.com/watch?v=lZhTZ5OQDms
Two good articles in the latest issue of Vårdfokus, a Swedish magazine (paper and online) for healthcare professionals such as nurses, midwives and biomedical analysts. One is about a biomedical analyst with ME, what life is like for her now, and some facts about ME. The other is about ME research, Jonas Bergquist and the center in Uppsala. Sjukligt trött https://www.vardfokus.se/tidningen/2020/nr-3-2020-3/trott/ Google Translate, English ("Sick and Tired") Forskaren: "Jag är hoppfull" https://www.vardfokus.se/tidningen/2020/nr-3-2020-3/trott2/ Google Translate, English ("The Researcher: 'I am Hopeful'")
Jonas Bergquist says in the article: This autumn, a secret drug study is underway for the time being. Hope we'll learn more about it soon.
The Norwegian ME Association has a short online survey on ME patient's experience with alternative treatments. They also ask if ME patients have received advice by health care professionals to try alternative treatments. https://www.me-foreningen.info/2020...okelse-om-erfaring-med-alternativ-behandling/
The ME research team at Haukeland university hospital (Fluge, Mella et al) is looking for blood samples from healthy controls for their biobank. In order to avoid sources of errors, they can't include people who are close relatives to a person with ME, but partners, in-laws, friends and colleagues that - don't have ME or other chronic illnesses - live in or close to Bergen are welcome to get in touch. Announcement shared via the Norwegian ME Association - Vestland county
They've had it for years, and I believe they cooperate with others as well - Scheibenbogen, Quadram etc. From the English presentation of the research group by Haukeland university hospital: The group also conducts ongoing laboratory experiments based on a biobank containing blood samples and other biological materials donated by the participants in the clinical trials https://helse-bergen.no/en/avdeling...ysikk/research-and-development/mecfs-research
