News from Scandinavia

Kalliope said:
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
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Great, thanks.
 
The Norwegian Minister of Health and Care Services, Bent Høie, recently gave a speech addressed to the youth thanking them for all the sacrifices they've given, everything they've had to put on hold, during the corona crisis. He understands that missing out on things as a teenager is something completely different than when you're middle-aged. You can never get back the summer you turned 14. He says the youth has not been forgotten. This was a speech that touched many and was very well received.

Today 19 year old Alexandra, who has suffered from ME since she was only six, has written a response directed to Bent Høie asking what about youth with chronic illnesses. Does he remember them too?

I don't know how you can stand there and say "We haven't forgotten you". You have forgotten about us. You do everything you can, so the youth can go back to school and celebrate school graduation, go on class trips and more.

What do you do to make us with ME able to go to school, class trip and celebrate school graduation? Nothing! Are you supposed to only care about young people who are healthy? Why are you the Minister of Health and Care Services when you don't care about me? About us? "Us" are all the children and adolescents who are sick year after year.

Bent Høie, du gjør meg forbanna!
google translation: Bent Høie, you make me furious!
 
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Henrik Vogt has been active on social media lately where he warns doctors against exaggerating the dangers and uncertainty surrounding the corona virus. He's referred to this JAMA article The Iatrogenic Potential of the Physician's Words which among other states "some of the information that physicians convey to their patients can inadvertently amplify patients’ symptoms and become a source of heightened somatic distress.."

Yesterday he was interviewed by the newspaper Morgenbladet where he among other was asked:
You have previously been involved in debates about ME and chronic fatigue syndrome. Does that affect how you relate to the corona debate?

- I have developed an allergy against painting too bleak a picture. Research shows that it can cause anxiety at the beginning of the course of illness. It creates excessive worry, a loss of quality of life and that one reduces one's life too much. In this case, it can mean that you take strong measures and stop going places because you are afraid of getting infected.

He also says:
Intensive care physicians have an intellectual conflict of interest in seeing only the most severe patients. While the general practitioners, like me, see those patients quite rarely, but we see the psychiatric patient who is having a bad time because they don't get any follow-up.

The article is paywalled, but still wanted to share this bit. His approach may very well have a grain of truth to it. It's just so frustrating that he chose ME patients to prove his point leading to a rejection of a patient group's disease reality and the research backing that reality up. ME won't increase or become worse by talking honestly about it. Perhaps on the contrary.
 
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After her latest opinion piece (discussed here), Nina E. Steinkopf received a video greeting from severe ME patient Solveig who gave permission to share it further. Solveig tells a tough story of severe deterioration after an infection and after having followed the advice to suppress symptoms. She ended up in darkness in a nursing home. She is still at the nursing home, but thankfully experiencing an improvement.

Lyttet til råd fra terapeuter - ble liggende på sykehjem i 8 år
google translate: Listened to the advice from therapists - ended up in a nursing home for 8 years
 
mango said:
There's a new biomedical, private center for ME, POTS, FM etc in Stockholm. They do research into ME as well. (I don't know enough to comment on it yet. Cautiously optimistic, though!)

http://redclinic.se/
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That's quite some news. They seem to aim for patients from abroad too as the whole website is in English as well as Swedish.
I'd like to see more information about them, at least the names of their health care professional(s), but hope there is reason to your cautious optimism, @mango
 
Kalliope said:
I'd like to see more information about them, at least the names of their health care professional(s), but hope there is reason to your cautious optimism, @mango
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I don't know why they haven't yet published at least the name of the main doctor/researcher? I don't want to write out their name here, in case there's a good reason it is currently being withheld, maybe it's a question of timing or something?

I'm sorry there isn't more public info to link to at the moment. (What I know so far is mostly from private email convos etc.)
 
mango said:
There's a new biomedical, private center for ME, POTS, FM etc in Stockholm. They do research into ME as well. (I don't know enough to comment on it yet. Cautiously optimistic, though!)

http://redclinic.se/
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An expired job ad (March 2020), looking for a nurse:
https://arbetsformedlingen.se/platsbanken/annonser/23855968
Ad Google Translate said:
In modern premises in Vällingby Medical Center, we are in the process of building an operation where we will receive young patients with neurometabolic diseases from all over the world. The clinic is completely private which means that the patients pay for all their care themselves. The clinic includes a research laboratory, aiming to develop the outpatient business through clinical research.
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There's also a Facebook page:

https://www.facebook.com/RED-Clinic-100102771615257/
 
The Norwegian ME Association has hired a new health professional adviser and wishes MD Nayana Geetha Ravi welcome as a colleague.
They have written an introduction of her, and when asked what she wants to do in her new position Nayana Geetha Ravi answers:

I plan to take a patient-centric approach as a counselor. So my focus will be to create a better partnership between patients and healthcare professionals and to help deliver better treatment, follow-up and care.

I will work on developing evidence-based information material that can help to create a better understanding of the disease and of patients' living conditions among health professionals and other actors.

I think it is also important for me to work closely with all the counties to ensure that we can reach the grassroots patients to support them in the best possible way. Medical knowledge is my strong point, and I want to keep up with all the new developments within ME to ensure that ME patients in Norway receive the best possible treatment and support.

ME is still a disease we know too little about and I will try to promote further research and collaboration.

My goal is to work closely with the health sector and other stakeholders to ensure the quality of life for ME patients.

ME-foreningen ansetter ny helsefaglig rådgiver
google translation: The ME Association hires a new health professional adviser
 
A great opinion piece by psychologist Grete Lilledalen in the medical newspaper Dagens Medisin. She has written articles and opinion pieces about ME before and is good at explaining the patients' situation and the debate for fellow health care workers.

When new methods are used and patients are selected according to strict criteria, the conditions for providing the right treatment to the right patient increase. We prevent those who improve from activity from becoming scared to move, and we prevent those who become sick from exertion from being subjected to treatment that causes aggravation.

SHOW FAITH! While we wait for good methods to distinguish between patient groups, it is necessary to have faith in the patient. Patients' own experiences must be the starting point when approaching medical / therapeutic. We must avoid undocumented claims of "social contagion" , avoid the suspicion of those who are recovering, and avoid the characteristics of patients as "activists" when they are arguing against treatment that has been harmful to them.

ME-debattens Catch-22
google translate: The catch 22 of the ME debate
 
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I liked her previous article but this one not so much. The narrative that there are two groups of people, one helped by cognitive approaches and the other not, seems to be an illusion created by flawed research practices.

Even if there were such two groups, it would still be scandalous to permit flawed research to influence guidelines.

Those offering CBT/GET and LP are probably very happy with the narrative that some people are genuinely being helped by the treatment. I think it is assumed that the treatment is more than a feel-good placebo but it's unclear how that is supported by research, considering the difficulties in adequately controlling for nonspecific effects in psychotherapy trials.

She does say some good things as well.
 
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strategist said:
I liked her previous article but this one not so much. The narrative that there are two groups of people, one helped by cognitive approaches and the other not, seems to be an illusion created by flawed research practices.

Even if there were such two groups, it would still be scandalous to permit flawed research to influence guidelines.

Those offering CBT/GET and LP are probably very happy with the narrative that some people are genuinely being helped by the treatment. I think it is assumed that the treatment is more than a feel-good placebo but it's unclear how that is supported by research, considering the difficulties in adequately controlling for nonspecific effects in psychotherapy trials.

She does say some good things as well.
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I think you are raising a good point! But I wonder if Grete Lilledalen's take might reach more people. According to a lot of health care workers in Norway, ME is a stress disorder or something similar that can be helped with psychotherapy. They've been told this numerous times from sources they trust and from patient anecdotes proudly presented by Recovery Norge. It might be easier to accept a nuance of that message rather than that they've been wrong about everything. As a first step at least.
 
@strategist Remember this article is aimed at a Norwegian audience, where we have a ‘patients’ Organization for self-declared ‘well’ again from ME - making lots of noice about (among other things) how activity made them better, and the me associations advice (pacing) was hurting their recovery.

I’m reading this article in the contects of our local debate, tackling the semantic of the rethoric pushed heavily by one side.
 
The Norwegian commercial broadcasting TV2 has an article today about Pål.

A morning show to the channel recently declared him as an "Everyday Hero". Since his wife Gunn became ill with ME 15 years ago after several infections. She deteriorated after following advice from doctors to exercise.
Pål has been her carer for all these years and also does volunteer work. His sister-in-law says about Pål: - He cares and makes a difference in the world. He's my biggest role model, and proves that real love conquers everything!

TV2: Pål har pleiet sin alvorlig ME-syke kone i 15 år
google translation: Pål has cared for his severely ill wife for 15 years

Edited for spelling mistakes
 
strategist said:
The narrative that there are two groups of people, one helped by cognitive approaches and the other not, seems to be an illusion created by flawed research practices.
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I can see where you're coming from & agree.

However, with poor diagnosis using outdated criteria there are people diagnosed with ME who are not exercise/exertion intolerant. The risk of misdiagnosis is quite high. I think it was found to be 40%+ of UK patients referred to specialist services.

I think ignoring those patients the risk is you add fuel to the illness denial claims. These people do exist and have a CFS diagnosis.

I think the argument to have faith in the patient and believe they are credible witnesses to their own experience is a good one. Why believe one patient's experience over anothers. Just because their reports may differ doesn't mean either is lying or deluded and doing so reflects the health care professionals bias in what suits.
 
Invisible Woman said:
However, with poor diagnosis using outdated criteria there are people diagnosed with ME who are not exercise/exertion intolerant. The risk of misdiagnosis is quite high. I think it was found to be 40%+ of UK patients referred to specialist services.

I think ignoring those patients the risk is you add fuel to the illness denial claims. These people do exist and have a CFS diagnosis.

I think the argument to have faith in the patient and believe they are credible witnesses to their own experience is a good one. Why believe one patient's experience over anothers. Just because their reports may differ doesn't mean either is lying or deluded and doing so reflects the health care professionals bias in what suits.
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I agree there is a problem of misdiagnosis and diagnostic uncertainty but that doesn't mean the other patients necessarily have a stress and anxiety related illness. I'm also not convinced that rigid application of narrow diagnostic criteria is good. It's unclear if doing this is beneficial and I can see how it could hurt some patients. There are already services for people with stress and anxiety related illness. I think ME/CFS services should offer something different.

Patients are often wrong about the cause of their illness. I've read the comments of people with other serious "organic" disease and some of them are convinced that stress caused their illness. Presumably they felt stressed before the onset of their illness and so concluded that stress must have been the cause. Other patients will say their illness is stress related because reducing stress helps them feel better, but I think that doesn't tell us about the actual cause of the illness. Patients know their symptoms best but can also hold all sorts of unreliable beliefs about their illness. Causality is hard to figure out.

PS: in my opinion the results of clinical trials like PACE and SMILE do not seem to support the idea that there is a substantial portion of patients for whom these therapies work.
 
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To clarify, PACE (according to the original protocol) does show results that are a little worse than those found to be produced by sham therapy in a previous review by none other than Wessely.

Some CBT proponents might also say that it's OK that CBT is just a placebo because for this particular problem a placebo can be considered an effective treatment. This claim introduces the difficult problem of trying to figure out how much of the effect of CBT is a placebo and how much of it is a specific effect on the illness in the context of an illness without good objective markers of severity. The effect produced by CBT however does not seem to be larger than that of placebos in conditions where placebos are considered to have no effect on the illness. It actually seems to be a small placebo effect. The Rituximab trials showed a much stronger placebo effect but strangely we don't see CBT/GET researchers wanting sham infusions of immunotherapy for patients because it's a better placebo.

It's useful to have clarity of what a nonspecific treatment effect is. A nice dinner, a massage, a purring cat, a nice conversation, an inspiring talk or the promise of symptom relief and so on will make people feel better but they are not something that can be considered to have an effect on illness. Some people might need a therapist. That's fine, they are generally available. It doesn't make sense to describe CBT/GET as treatment for ME/CFS when it doesn't seem to have any specific effect on the illness and just produces some nonspecific effects. I think there is an issue of informed consent here because patients are being told there is treatment for ME/CFS when there is not. There are other ways to make patients feel better than filling their head with unreliable and false ideas about the cause of their illness.
 
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