News from Scandinavia

An aticle at Forskning.no about Exercise Induced Laryngeal Obstruction (EILO), where some researchers in Norway have tested the hypothesis that anxiety/mental health issues can cause EILO. At this forum people may not be surprised that pwEILO did not have more anxiety than a comparison group :)

Amerikanske forskere mener pustebesvær under fysisk anstrengelse kan skyldes angst. Vi ser ikke tegn til det i vår forskning
U.S. researchers believe breathing difficulties during physical exertion may be due to anxiety. We see no signs of that in our research
 
Another great piece on "basal exposure therapy" used in Norway to treat mental health conditions.

Include common themes found in the ME/CFS debate, such as non-relevant comparisons to cancer or other conditions, evidence based medicine, studies that do not look at harms, general quality of treatment studies.. With a few changes it could again have been written about pwME and LP.

Autonomi, medisinfrie tiltak og kunnskapsbasert behandling
Autonomy, drug-free measures and knowledge-based treatment

Love the comparison of how a study on healing was heavily criticized, while a study on BAT did not receive the same scrutiny, and for exposing how comparisons to other diseases, such as cancer, are not always useful.
 
Myndighetsjuridik (a law firm, I think?) published an article last week, an analysis of legal matters concerning ME/CFS in Sweden.

En rättsanalys av ärenden som rör ME/CFS
https://myndighetsjuridik.se/nyheter/en-rattsanalys-av-arenden-som-ror-me-cfs
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Are equal cases assessed in the same way, and how legally sound are the decisions made by the Social Insurance Agency and the courts?

The legal analysis highlights the major shortcomings in the handling of ME/CFS cases. Both the Social Insurance Agency and the courts need to place more trust in the professional judgement of doctors, but also in the individual's own description of his or her condition.

All too often, wrong decisions are made, where the decision-making authority departs from the all-important principle of objective and impartial assessment. Legal certainty in the handling of ME/CFS cases needs to be strengthened and assessments need to be more consistent. It is not reasonable for one person to be awarded compensation while another is denied despite the fact that the facts are virtually identical.
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(Not a recommendation. I haven't read the book myself.)

This book was published in Sweden last year, "The fantastic world of homeopathy: about ME and MS". Looks like it's part of a series of many books, including covid-19, "the vaccination pandemic", pregnancy, allergies etc...

I'm not familiar with the author, but he's apparently a well known homeopathy practitioner who has treated some pwME with "varying results", according to posts on social media.

Homeopatins fantastiska värld! : om ME och MS av Stefan Whilde
https://www.bokus.com/bok/9789177654827/homeopatins-fantastiska-varld-om-me-och-ms/
Publisher's description auto-translated said:
School medicine can't cure people with ME. Does that mean people with ME are incurable? No, of course not! The same goes for MS. An incurable disease? Well, that's for you to decide after reading this book.

The fact that orthodox medicine is unable to cure diseases and therefore calls them chronic is not the same as saying they are incurable.

In "About ME and MS" we look at the diagnoses and, more importantly, the people behind the diagnoses from a homeopathic perspective. Stefan Whilde explains the process of homeopathic treatment and carefully outlines the homeopathic medicines that are most central to the treatment of people diagnosed with ME and MS.

Jane Hansson is the guest author with the chapter "Jane on ME".
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ETA: A review by ETC of his anti-vaxx book. ("Warning: Anti-vaxxer sells extremely dangerous children's book")
 
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mango said:
Yesterday the regional board of Västerbotten decided on a supplementary budget, which according to the politicians means that a specialist clinic for ME/CFS in Umeå will finally become a reality.

Politician LiseLotte Olsson comments on the decision, saying "It is very gratifying that we can now finally start a specialist clinic for ME/CFS. At present, there are no clinics north of Stockholm and it is really positive to have a clinic in Västerbotten, for increased accessibility and help for patients in Norrland."

Her using the word "Norrland", which refers to the northernmost half of Sweden, is kind of misleading at this point in time, since we still don't know whether the new clinic will be accepting patients from other counties than Västerbotten.

Someone asked in the comments on Facebook when the clinic will open. I'd say that's a very important question, since there has been empty promises and many years of delays already... The politicians reply "We are investigating that at the moment and will get back to you as soon as we have an answer. But we are working towards it happening sooner rather than later."

Personally, I'm not getting my hopes up yet. Let's wait and see what happens...
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According to a news article published today, the opening of a ME clinic in Umeå, in the north of Sweden, will be delayed.

(Search for "Västerbotten" in this thread to read previous posts on this topic.)

Försenad öppning av ME-mottagning i Umeå
https://www.vk.se/2021-08-13/forsenad-oppning-av-me-mottagning-i-umea
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Delayed opening of ME clinic in Umeå

There is a lack of knowledge about the diagnosis of ME/CFS within the healthcare system and many people who seek help feel that they are not taken seriously. The clinic in Umeå will be the only public clinic in the country, but the opening has now been postponed for at least a month. [...]

- It's more complicated than you might think, and intensive preparatory work is now underway. We hope that we will be able to start seeing patients by the end of October," says Jennie Liling Ståhl, area manager for community health in Umeå and involved in the project. [...]

ME (Myalgic Encephalomyelitis) or Chronic Fatigue Syndrome is a disease that has been largely invisible in healthcare for many years. The symptoms can be reminiscent of burnout syndrome and many people with the disease have been disbelieved when they have sought help from the health care system. [...]

The symptoms get worse if you exert yourself mentally or physically at a higher level than the condition allows and there is no treatment that can cure the disease, but patients can get support to find the right balance in their daily lives, says Jennie Liling Ståhl at the region.

- The clinic will examine, diagnose and then provide advice and support to each individual patient. It's really about finding the right activity level for that person and providing the tools that are available," she says.

The new clinic in Umeå will be located in the same premises as the geriatric centre and the number of patients per day will not be very high, according to her.

- There are many people involved but no full-time positions because the clinic will only be open a few days a week. If it's going to be bigger, we need to reallocate resources," she says.

At present, there is only one private clinic in Stockholm, and Umeå's clinic will be the only public health clinic specialising in ME/CFS patients.

- This means that there are high expectations for Umeå to get started, and there is a risk that there will be a high level of demand. The catchment area is Västerbotten, but other regions have the possibility to send referrals to Umeå. But we have to start by taking care of our own population,' says Jennie Liling Ståhl.

Is there a risk that the clinic will not open this autumn?
- Things can always happen, but we really want to make sure that it not the case. [...]

Translated with www.DeepL.com/Translator (free version)
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Meanwhile, the postcovid clinic in Umeå has been open since May, with a multi-professional team (physician, physiotherapist, occupational therapist, psychologist and counsellor) from the Neuro centre's rehab group.

And yes, that's the same Neuro centre that continues to reject patients with ME, and its senior consultant/physician executive was quoted in the news some time ago saying that they don't believe in the diagnosis ME. :grumpy:

(Edited to add a link to the source in the last sentence.)
 
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mango said:
Meanwhile, the postcovid clinic in Umeå has been open since May, with a multi-professional team (physician, physiotherapist, occupational therapist, psychologist and counsellor) from the Neuro centre's rehab group.

And yes, that's the same Neuro centre that continues to reject patients with ME, and its senior consultant/physician executive was quoted in the news some time ago saying that they don't believe in the diagnosis ME. :grumpy:
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Imagine rejecting something as non-existent, as a professional, but accepting the same thing under a different label, completely oblivious that they are the same thing. Honestly I can't, this level of incompetence is beyond my imagination. You can't even satirize this, it's too absurd.

Seriously this is like accepting that hurricanes are a thing but typhoons aren't, as a climate scientist. I mean, seriously, how does that even happen?
 
mango said:
"A decision to open a clinic was made three years ago, but it was cancelled due to lack of funds."
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"Lack of fund" in passive voice. This is not a passive thing, funding was refused. Those aren't decisions handed down by angels, people make those decisions. Using the passive voice, as if this was imposed by some unseen force, removes accountability from a system that badly needs so much more.
 
Finland sets up Long Covid working group
https://yle.fi/uutiset/osasto/news/finland_sets_up_long_covid_working_group/12071244


Finland's Ministry of Social Affairs and Health has established an expert group to investigate the phenomenon of Long Covid.

...

The group is to be led by Risto O. Roine, Professor of Neurology at Turku University, and includes a further 14 experts from academia and public and private healthcare providers.​

Not in a hurry

The group will gather information up to the end of 2022, to evaluate the longer-term effects of Covid and see if it is a risk factor for other illnesses.​
 
Every time I see this person's face the content is terrible. Horrible gaslighter. And again, misrepresenting so completely they, at least in tweet, appear to blame the patients' objections as delaying the release of the guidelines, which is the complete opposite of reality. Absurd and easy to check, but also seems to be completely ignorant of its substance, that there is no treatment.

If medical writers can't even get basic facts correct about simple events, how can they actually get complex things right? I assume this is willful disinformation, because it's impossible to get so many basic facts incorrectly here.

Unrest? Protests? If we could do that things would be very different. Then again if we could do that we literally wouldn't be in this mess. Awful, I don't even want to read the rest but whatever here it is.
Tweet said:
New research and knowledge should provide better treatment for ME, but unrest and protests have led to new guidelines for treatment being suspended. It affects ME patients, and perhaps also those who struggle with covid-19, writes @ninaforskno
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rvallee said:
Every time I see this person's face the content is terrible. Horrible gaslighter. And again, misrepresenting so completely they, at least in tweet, appear to blame the patients' objections as delaying the release of the guidelines, which is the complete opposite of reality. Absurd and easy to check, but also seems to be completely ignorant of its substance, that there is no treatment.

If medical writers can't even get basic facts correct about simple events, how can they actually get complex things right? I assume this is willful disinformation, because it's impossible to get so many basic facts incorrectly here.

Unrest? Protests? If we could do that things would be very different. Then again if we could do that we literally wouldn't be in this mess. Awful, I don't even want to read the rest but whatever here it is.

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Maybe it needs a well informed comment being made.
 
Barry said:
Maybe it needs a well informed comment being made.
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many have tried. It all started some years ago when a biology professor attacked ME patients for criticising the PACE trial in a newspaper where she was science editor. That opinion piece got a massive amount of negative response, and ME patients have not been popular with her ever since.

And as she's written several texts about ME by now, she is to be considered a neutral expert in the field for other journalists to interview.
 
It’s so unhelpful, as the rest of her low standard “contributions”, that for some reason just is stigmatization of ME-patients as “troublesome”. If you have no interest in, and close to no knowledge of the history, this is what you get.

A couple of comments to the obvious flaws in the text. What exactly is so-called long-COVID? We don’t know yet, but in general it is it surely not ME. That some might develop ME later, well that shouldn’t surprise anybody. But as a start, one should be careful to equal two separate things like long-COVID and ME.

Garner is an anecdote, like other anecdotes in the opposite direction, not doing anything different from what he has done, except from his “start”. I don’t know he’s case, which one would need to know a lot more of to catch important nuances, but it is interesting that he spent at least three months “in bed” early on. Congratulations! I would not hesitate to label that as a “good start”. The problem is that is often not the case for ME-patients. Important! They will often continue “as best they can” early on and for way to long, and with big consequences. Garner should really appreciate that he had the “luxury” of “tucking in” and make some really hard and thoughtful thinking of what things might be the other way around. Anecdotes...?

Then I wonder, why don’t the author look at the data instead, look at recovery-rates, more precisely how many gets better, which is a more precise term than recovery. That’s much more interesting and telling, but she surely has no idea of the data. And it is simply not true that patients themself have just given up and “lies down” or tell anyone else to take such approach as some kind of general advice. That said, many long-time sufferers that didn’t have the luxury of Garner initially, they know that things probably could have been better in the long run if they could have had a whole different approach, other than the in this case quite useless keep calm and carry on. That’s why a sound advice from the ones carrying on way to much at the wrong time, would be to take it slowly for a while early on. But that is something completely different than the nonsense narrative of go to bed and stay there.

The other thing worth commenting, is why hasn’t ME-patients reacted to a small study on LP regarding chronic fatigue after cancer? The author seems to imply that since patients did react to study on LP on ME, they should have done the same here. Hmmm. Maybe true, but as she should be aware of, things are more than messy and many. Not to forget the obvious reason that ME isn’t chronic fatigue. That is a vital point of huge significance. Again, you can’t make the assumption that chronic fatigue is ME. That is a gigantic mistake. These distinctions are so important, it’s in the details, but as we know from this piece and many others, who gives a shit, and unfortunately these mistakes are repeated again and again.

My advice would be that if you’re an science editor, go to the data, read the sources, do it properly before “printing” bs.
 
For what it's worth, an excerpt from the half-year report of the Swedish pharmaceutical company PharmaLundensis:
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The company has continued work on its effective mercury-binding compound as a good treatment for the respiratory diseases COPD/Chronic Bronchitis and Chronic Fatigue Syndrome (ME/CFS). A large-scale synthesis is being prepared to produce as much of the substance as is needed for the forthcoming necessary toxicological and pharmacokinetic studies (1-2 kg). A GMP laboratory will manufacture all the substance to be used in the planned clinical studies.

PharmaLundensis believes that the finished product can provide very good efficacy in both chronic bronchitis and COPD. [...] We believe that these lung diseases, as well as chronic fatigue syndrome, have the same root cause, namely mercury vapour from tobacco smoke and/or air pollution, and should be treated in the same way, i.e. with substances that bind and excrete mercury from the body.
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https://news.cision.com/se/pharmalundensis/r/halvarsrapport-2021-01-01-till-2021-06-30,c3399953
 
Läkare behandlade ME-sjuka med pollen
https://www.expressen.se/gt/lakare-behandlade-me-sjuka-med-pollen/
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Doctor treated ME patients with pollen

A private doctor who treated his patients exclusively with alternative medicine methods is criticised by the Health and Social Care Inspectorate (IVO).

The doctor himself says that his patients receive dietary supplements and that he treats the neurological disease ME with pollen, among other things.

In its criticism, IVO states that the scope for a licensed doctor to treat patients with alternative methods is "very limited" and that the procedures are not scientifically sound.
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https://translate.google.com/transl....se/gt/lakare-behandlade-me-sjuka-med-pollen/
 
A new op-ed by ME patient Madelleine Müller appeared today in the Danish daily newspaper, Information. Fortunately, it is not paywalled and accessible freely here: https://www.information.dk/debat/20...ved-sygdommen-mistaenkeliggoeres-laegestanden (for non-Danish speakers, Google Translate is a few clicks away of course)

Madelleine speaks of the 'epistemic exploitation' sadly implicit in so many encounters between ME patients and health care professionals amongst others, e.g. the tendency of marginalised people (in this case patients) being demanded evidence of the very factors of marginalisation and stigma by those in power (often doctors). She references a recent conversation of her own with a doctor and also connects the dots to the current political landscape re ME in Denmark. In my humble opinion it is an excellent read with some extremely relevant points being raised. Hoping some of you will find it similarly helpful and empowering.
 
An article about research into ME from the tabloid newspaper Dagbladet who has a history of grim articles attacking ME patients. I'm not sure why this article is coming now and if this is a hint of how the BPS-group will try to position themselves going forward.

The article is paywalled, but here's a summary:

Title: Researchers: Three types of ME

Recent research points towards several subgroups that can be of need of very different treatments.

There's a short summary of the recent paper from Tronstad et al, that they found large differences in blood samples to ME patients and healthy control, but also that there were clear differences within the ME patient group. The results can partly be due to the illness itself, but also a result of ME patients having a lower activity level.

Signe Flottorp from the Norwegian Institute of Public Health says there are not sufficient evidence for defining subgroups in ME. She says subgroups is not all about biomedicine and genetics, but that health care workers in a holistic approach must always consider personality, life conditions, previous experiences and challenges.
"Such conditions can also influence expected effect of different treatments" says Flottorp.

The study "Cognitive Behavioural Therapy Improves Physical Function and Fatigue in Mild and Moderate CFS: A Consecutive Randomized Controlled Trial of Standard and Short Interventions" showed that individual CBT improves physical function in patients with mild to moderate ME. Some had very good effect, some had a little effect, and some had none effect, according to one of the researchers behind the study, Merethe Eide Gotaas. They are now trying to find out if there is anything in common in those who had very good effect, some effect and no effect. They are looking at factors as age, gender, pain, physical condition or challenges with memory. Their goal is to identify those patients who will have most benefit from CBT. They plan to publish their findings before Christmas.

Ingrid Helland from the National Competence Service for CFS/ME says several studies shows that different kinds of treatment can have good effect. One possible explanation may be sub groups within the patient group.
 
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