News from Scandinavia

Opinion piece by Sven Britton (member of the Swedish ME association RME's scientific advisory board) in the journal of the Swedish Medical Association:

ME/CFS-patienter överges när Bragéekliniken läggs ned
https://lakartidningen.se/opinion/d...tienter-overges-nar-brageekliniken-laggs-ned/
Auto-translate said:
ME/CFS patients abandoned as Bragée Clinic closes down

On 15 December 2023, the Bragée specialist clinic for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a model clinic in Stockholm in terms of both patient and staff care, came to an end.

I have been working there on an hourly basis as an infection consultant for four years. The clinic has been running for six years and has diagnosed/treated over 3,000 patients with this condition. The Bragée clinic continues, but now with a focus on pain rehabilitation, while ME/CFS patients are referred to regular health centres for the time being. A knowledge centre for post-infectious fatigue has been established at the Infectious Disease Clinic at Karolinska University Hospital in Huddinge, where medical centres can ask questions about ME/CFS, which in at least 50 percent of cases begins with an infection [1]. The region's four academic health centres in Gustavsberg, Jakobsberg, Liljeholmen and Torsplan can also take care of these patients with disabling multiple problems.

This patient group suffers from not being taken seriously by the health care system and the Social Insurance Agency. The lack of an accepted surrogate marker means that the condition is neither classified as a somatic disease nor included in psychiatric criteria. At the Bragée clinic, patients have been helped by a team of doctors, psychologists and physiotherapists and occupational therapists. The clinic has an elaborate treatment programme, including education about the disease and how patients can best help themselves with the support of their families.

There is as yet no single cause of the disease or treatment, nor is one to be expected, as the disease is not uniform but is caused and sustained by various partly unknown factors within and outside the patient. Research on ME is active, not least in the area of stress/infection. The intensive research carried out on long-term disabling fatigue in a certain percentage, mainly women of working age, even after a mild covid infection, can help here [2]. At the Bragée clinic, for example, we have been able to show that ME patients, unlike controls, excrete large amounts of Epstein-Barr virus in saliva in connection with a covid infection [3].

ME can affect both sexes at all ages, but again, women in the age range 20-60 years predominate [4]. A very recent comprehensive national survey in the USA on the prevalence of long-term more or less disabling ME suggests that 1.3 per cent of the population suffers from the disease, mainly women of working age [5]. The disease thus causes suffering for a large number of people and very high costs to society.

It is my hope that ME patients, who now feel lost and abandoned following the closure of specialist clinics in all the country's metropolitan areas, will be respected and recognised by the general health service. This is the important first step towards help and improvement. In many cases, patients are given the universal advice to start exercising ('pull your socks up'), which can be fatal, as the only specific symptom for this group of diseases is severe deterioration from physical exercise, which is otherwise a panacea for most diseases, including psychiatric ones.

The disease has a low status not only among patients but also among doctors, many of whom embrace DN journalist Hanne Kjöller's conclusion that doctors perpetuate the disease and make it worse through various interventions when no treatment is available, because the disease is created in the patients' minds [6]. Doctors and patients are for once on an equal footing: we are both despised, each in our own way. This favours the patient-doctor relationship and facilitates the path to healing.

I hope that interest in helping patients with this difficult and mysterious disease will increase. There are many avenues for research, and I am confident in the region's ambitions to contribute to this.
 
The Swedish Covid Association has published a map on their website, with information about all the post covid clinics in Sweden.

"The Swedish Covid Association has carried out a survey of the post-covid clinics in Sweden. At the time of the data collection (January 2024), four of the country's 21 regions had some form of post-covid clinic."

Karta över mottagningar
https://covidforeningen.se/vard-och-stod/karta-over-postcovidmottagningar/

postcovidmottagningar-sverige-feb-2024.jpg
 
The Swedish Covid Association has sent a letter to the Ministry of Social Affairs regarding the situation of post-infectious conditions in Sweden, with a number of very important questions. (ME and PEM is mentioned.)
:thumbsup:

Våra frågor till regeringen
https://covidforeningen.se/vara-fragor-till-regeringen/

Google Translate, English

The Swedish Covid Association on X/Twitter Auto-translate said:
"Is it possible to study "the impact of the pandemic on children's health" - but at the same time exclude all direct consequences of the spread of infection?

Yes, according to the Public Health Agency of Sweden.

What is the government's response? @jakobforssmed

This is one of several legitimate questions in our latest letter to the government. Which also addresses:

The regions' dismantling of post-infectious specialist care, at the expense of knowledge development, patient safety and equal care.

The fact that we still do not have an authority that monitors research on what COVID-19 causes in the bodies of those who do not recover. How can we then estimate the impact of COVID-19 on public health and the national economy, as well as the need for investments in healthcare and research?"

 
There was a terrible article about euthanasia and ME in Dagbladet the other day, with Vogt talking about it being grostesque and happening because people losing hope when recovery stories are not told (and then referring to the importance of Recovery Norway). Story ends with Fors from NTNU (involved with the lightning process study) talking about their research that (supposedly) show mild and moderate patients can recover with CBT. Both ignore that the patient case they discussed was (very) severe (Dutch) so even IF the studies they refer to actually showed recovery, it has nothing to do with a severe case.
 
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That's really sickening that they use other people's tragedy to advertise quackery. I hope they get lots of complaints.
I agree. Her life and suffering was not to be reduced to a rhetorical point for Vogt to use.

The newspaper shared the article on Facebook. Critical and factual comments from ME sufferers have now been hidden by the newspaper so that the comments are not visible for others than facebook friends. It's so surreal..
 
Erased in life. And erased again in death. By the same people. Grotesque is the right word. There are others.

I wonder what goes in the mind of the editors who hide the comments. This is such a sickening failure of journalism, it simply has no justification and probably runs afoul of journalistic regulations, but it's usually the case that when it comes to us, these things simply don't matter.

There is probably some authority where a complain could be lodged and would be accepted, make them backtrack, but it would be too late at this point. The lie will have made several turns around the world by the time truth put a single foot on the ground.

Truly sickening.
 
More on Swedish radio yesterday (2 minutes, in Swedish) :thumbsup:

Specialistklinik stängde – patienter blir utan medicin
https://sverigesradio.se/artikel/specialistklinik-stangde-patienter-blir-utan-medicin
Auto-translate said:
Specialist clinic closed down - patients left without medicine

[Image caption] Marie Sundgren has the neurological condition ME-CFS, but her GP does not prescribe her medication.

"CRIED IN BED"

Patients suffering from a rare neurological condition that often leaves them completely bedridden are finding it difficult to get their medication after a major specialist clinic closed at the end of the year.

The idea was that health centres [ie GPs] would take over the treatment of the patients, but in Region Uppsala, for example, health centres are advised not to prescribe the drugs because there is insufficient scientific support.

"I cried in the car on the way home, I felt so defeated," says Marie Sundgren, who has the neurological disease ME-CFS.
ETA: She has been diagnosed with ME after covid-19.
 
Swedish Radio: Studio Ett 19 februari
https://sverigesradio.se/avsnitt/studio-ett-19-februari

On today's episode they are talking about, among many other things, ME patients being moved from specialist care to primary care.

The episode is available to listen to on their website.
@MittEremltage comments on this in her latest blog post. Well worth a read, as always :thumbsup:

Sveriges Radio missar den avgörande frågan
https://mitteremitage.wordpress.com/2024/02/20/sveriges-radio-missar-den-avgorande-fragan/

Google Translate, English
Auto-translate said:
The focus of is on the consequences of the Stockholm region, after terminating the agreement with the Bragée ME Centre, opening its own specialist clinic that only accepts patients for assessment. Responsibility for treatment lies with primary care, which now largely does not continue to prescribe the drugs tested via the Bragée ME Centre.

The report states that the reason why primary care does not prescribe these drugs is that there is no evidence. The drugs mentioned are B12 injections, LDN and Q10 [...].

When the region terminated the contract with the Bragée ME Centre, they chose to close the clinic prematurely. This meant that patients were discharged to primary care a whole year earlier than the region had anticipated and they were thus forced to accelerate the work of getting the post-infectious clinic up and running on time. However, it is highly unclear whether the clinic would have been given treatment responsibility instead of primary care if it had opened later. [...]

People with ME often have very negative experiences of primary care as many doctors lack knowledge of the disease. There are also ideological aspects of care that influence, where ME is judged as medically unexplained symptoms (MOS) or a functional condition. Regardless of whether ignorance or ideology is involved, this often leads to incorrect treatment and iatrogenic harm. The fact that Region Stockholm then chooses to place the main responsibility for treatment on primary care is deeply problematic and can lead to ME sufferers continuing to be harmed to a large extent without primary care even realising that they are doing harm. [...]

However, the RME [Swedish ME Association] chairperson argues that although there is a lack of evidence, there is proven experience with the medicines and that this is the reason why patients have been prescribed these medicines in the past. [...]

The question that came up for me when I read the reports is whether there is enough science and proven experience to prescribe the medicines in question according to the off-label principle. That is to say:

Is it enough that there is proven experience if you also say that there is no evidence?

I have no answer to this question. [...]

Whatever the answer to this question is, many people with ME have already found themselves in a terrible situation. And that is terribly unfair.
 
LP coach Live Landmark had an opinion piece last week about a so-called ME epidemic in Norway and how Denmark and Sweden are much better at handling ME. Denmark with not using the diagnose, and Sweden by shutting down ME clinics. (google translated link here).

Just a few years ago, this opinion piece would have been celebrated, liked and shared by many. This time it received little attention and mostly factual, critical comments on social media, so I didn't think it worth sharing here as it fell flat to the grown.

However, three doctors are today coming to Landmark's rescue by confirming her argumentation; the paediatrician and researcher Maria Pedersen, leader of the national competence center for ME/CFS Ingrid Helland (colleagues of Wyller) and research director of the Norwegian Institute for Public Health, Signe Flottorp:

Tar et oppgjør med ME-holdninger: - Noen blir provoserte når de hører de kan bli friske
google translation: Dealing with ME attitudes: - Some people are provoked when they hear they can get well

quotes:

- Of the several hundred children and young people I have visited, there are only a few who have not improved in the time I have followed them. The vast majority have become significantly healthier and many have become completely healthy, says Helland.

...

The two see a clear improvement in children and young people who receive organized activity. Preferably very low activity at the start, with a gradual increase over time.

...

- We have regularly admitted children and young people with inflammation of the brain and spinal cord at Rikshospitalet. These patients need a completely different treatment than the CFS/ME patients. It can also be seen as frightening to receive a diagnosis that suggests that this is what you have, explains Pedersen-

In Denmark, the new ICD-11 diagnosis "bodily distress syndrome" is frequently used, instead of CFS / ME.

- The name itself can point to an illness that is caused by too much stress over a long period of time. This perhaps makes it easier for patients to understand treatment and measures that can help one recover. Then it's a very different message to get, says Pedersen.

...

In 2023, 50 researchers and doctors from six different countries signed what is called the "Oslo Declaration".

They were critical of the use of diagnoses such as ME, chronic covid, fatigue and burnout. The symptoms overlap, and you can recover from it , they thought.
 
Finding it ironic that the journalist behind an article in Khrono on people who go after research fraud today is the same guy that keep writing sympathetic articles about BPS researchers and anti-scientific pwME.
Richard Horton, most famous for being the guy who published one of the worst cases of research fraud, has said that in his opinion half of all scientific papers are wrong. Not in his journal. Nope, not him, as editor-in-chief famous for one of the most harmful examples of that in history. Not despite being one of the guy most known for it, because for some reason his role in the entire affair is brushed over and all the blame is on the discredited researcher.

Some people walk around with poop on their shoes and rant about how everything everywhere smells like shit.
 
News segment on Swedish radio (1 min 40 secs):

FHM-rapport tar inte upp hur barn påverkats av covid
https://sverigesradio.se/artikel/fhm-rapport-tar-inte-upp-hur-barn-paverkats-av-covid?s=03
Auto-translate said:
The Public Health Agency of Sweden's report does not address how children have been affected by COVID-19

When the Public Health Agency of Sweden investigates the effects of the corona pandemic on children's health, it focuses entirely on how closed schools and cancelled activities have affected children.

How the children and their families have been affected by actually getting sick is not included, according to information to Ekot.

The Swedish Covid Association, with 4,000 members severely affected by the disease, is critical of this. The Swedish Public Health Agency declined to comment on the issue.
 
Fairly long article on long covid today, in one of Sweden's largest newspapers.

It's a sympathetic and very informative article, but ME is again not mentioned (annoying, especially since Petter Brodin used to do research on ME).

Fyra år efter pandemins början: Inom ett år har vi läkemedel mot postcovid
https://www.dn.se/sverige/fyra-ar-efter-pandemins-borjan-inom-ett-ar-har-vi-lakemedel-mot-postcovid/
Auto-translate said:
Four years after the start of the pandemic: Within a year we will have post-covid medicines

[...] - The basis for a curative or effective symptom relieving treatment is that we understand at the molecular level what is wrong. Many studies are ongoing and I am hopeful that we will have more drugs within a year," says Petter Brodin, a paediatrician and researcher in immunology at Karolinska Institutet. [...]

- Nine out of ten of our patients have some form of cognitive problem. Some can't read a book, don't understand what people say, lose their words and can't go shopping. They have enormous mental fatigue," says Christer Lidman, senior physician at the post-covid clinic at Karolinska University Hospital in Huddinge.

He explains that patients cannot train their brain and memory in a meaningful way.

- 'You can train to improve your memory tests, but you can't improve your memory in everyday life,' says Mr Lidman.

Fatigue can in some cases be reduced with the help of central stimulant drugs, such as medication for ADHD. Activity adaptation is important to prevent setbacks, and the occupational therapist has an important role here.

- We also try cortisone in some cases, which can be a stimulant," says Mr Lidman.

Low doses of naltrexone, used to treat alcohol dependence, have been shown in studies to help people with severe fatigue and pain. [...]

Another neurological condition known as POTS (postural orthostatic tachycardia syndrome) affects the autonomic nervous system, which regulates heart rate, blood pressure and other functions that adapt the body to different positions. A person with POTS who gets up from a sitting or standing position for a long time may experience a racing pulse, palpitations, dizziness and fainting.

The cause is unknown, but viral infections (such as COVID-19) seem to trigger POTS. The treatment available is mainly for symptom relief, such as support stockings or heart medication (beta-blockers). [...]

- "In our studies, we also see that a certain type of cells called T cells do not seem to be activated to recognise and reject virus-infected cells," says Petter Brodin.

He believes that it is no coincidence that women are mainly affected by post-covid. They usually get a milder covid infection than men, which means that the immune system is held back.

- This also increases the risk of having the virus remaining in the body. I think this is the core of the condition," says Petter Brodin. [...]

In a study at Karolinska Institutet, researchers are testing treatment with the antiviral drug Paxlovid (nirmatrelvir/ritonavir) in adults with severe post-covid.

- "Within a year, we should know whether the drug succeeds in eliminating the virus," says Judith Bruchfeld, one of the researchers behind the study. [...]

3. Heart and vessels

The risk of cardiovascular disease is higher after a covid infection. For example, changes have been observed in the so-called endothelial cells that line the walls of blood vessels. They help regulate blood flow and blood pressure, among other things. One explanation could be that the endothelial cells are not working properly, which increases the risk of blood clots.

Studies have also shown an increased risk of heart failure, atrial fibrillation, arrhythmias and stroke after a COVID-19 infection. Circulation problems also affect other organs, such as the kidneys, pancreas and spleen. It also increases the risk of type 2 diabetes.

(Some of you might remember this interview with Brodin and Bruchfeld from 15 March 2023 where they expressed the same thing, they believe there will be a cure within a year/before the end of 2023.)
 
Fairly long article on long covid today, in one of Sweden's largest newspapers.

It's a sympathetic and very informative article, but ME is again not mentioned (annoying, especially since Petter Brodin used to do research on ME).

Fyra år efter pandemins början: Inom ett år har vi läkemedel mot postcovid
https://www.dn.se/sverige/fyra-ar-efter-pandemins-borjan-inom-ett-ar-har-vi-lakemedel-mot-postcovid/


(Some of you might remember this interview with Brodin and Bruchfeldt from 15 March 2023 where they expressed the same thing, they believe there will be a cure within a year/before the end of 2023.)
@MittEremltage comments on her blog today:

Ett svek skadar!
https://mitteremitage.wordpress.com/2024/03/10/ett-svek-skadar/
Auto-translate said:
The fact that the media and Swedish post-covid researchers consistently avoid talking about ME in connection with recognising post-covid is a huge betrayal. The overlap between the diagnoses is large. The article mentions POTS but as far as I can see neither PEM nor ME.

Why?
 
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