News from Scandinavia

Article about ME on the Swedish Brain Foundation's website.

Hjärnfonden: "Sjukdomen har stulit mitt liv"
https://www.hjarnfonden.se/2020/12/sjukdomen-har-stulit-mitt-liv/

Google Translate, English ("The Disease Has Stolen My Life")
Google Translate said:
"The disease has stolen my life"

Imagine you have the flu. You have a fever, body aches and can barely do anything. But it does not end but continues, day in and day out. This is how Camilla Engstrand describes what it is like to be affected by the diagnosis ME/CFS, a neurological disease that was previously called chronic fatigue syndrome. Read her story.

Tell us how you got your diagnosis. What were the first signs? Was the road to diagnosis long?

I fell ill with ME/CFS in 2015 after two severe, long-lasting pneumonias. The first signs were that I never recovered from the feeling of infection in my body. It felt like a chronic flu; I just waited to get well but never did.

I was constantly short of breath and had problems regulating blood pressure and heart rate, which made me constantly dizzy. The heart raced and the pulse rose with the slightest physical exertion. My brain felt like it was tough caramel. Suddenly I became sensitive to sound and light. I had a hard time remembering things, finding words and talking.

I was paralysingly tired, had a fever that came and went, a sore throat and swollen lymph nodes. On top of that a pain in the body that was constant. It was as if the system was hung up and did not restart after the infections.

Every time I went beyond my physical or mental ability, there was always a setback the day after. Then I was completely bedridden. The medical term for this is post exceptional [sic] malaise, PEM. [...]
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Jørn Tore Haugen, Master of Science in Engineering, has written a guest blog on "Life with ME by Sissel" titled "CFS/ME - A "factor" in plasma?"

The article is in both English and Norwegian version.

Sub headlines are:

  • Briefly about the blood
  • Briefly about glucose and synthesising to ATP
  • Fluge/Mella/Tronstad's group
  • Ron Davis' group
  • Prusty and Naviaux's groups
  • Karl Morten's group
  • Carmen Scheibenbogen's group
  • Jonas Bergquist's group
  • Julia L. Newton's group
  • Two other groups
    1. Alain Moreau's group
    2. Mady Hornig, Ian Lipkin and others
  • Summary
  • Final

Myalgic Encephalomyelitis, also called CFS/ME, is a disease without a known biomarker.

Research by several research groups, independently of each other, has, however, made findings in plasma that may help to narrow the search for the cause of CFS/ME. Plasma from ME patients has shown to provoke aberrant responses, a form of hibernating, both in cells from ME patients and healthy controls. At the same time, plasma from healthy controls has eliminated this abnormal response in both cells from ME patients and healthy controls. In addition, several groups have shown that a key enzyme in energy metabolism, pyruvate dehydrogenase (PDH), is down-regulated.
 
Kalliope said:
Jørn Tore Haugen, Master of Science in Engineering, has written a guest blog on "Life with ME by Sissel" titled "CFS/ME - A "factor" in plasma?"

The article is in both English and Norwegian version.

Sub headlines are:

  • Briefly about the blood
  • Briefly about glucose and synthesising to ATP
  • Fluge/Mella/Tronstad's group
  • Ron Davis' group
  • Prusty and Naviaux's groups
  • Karl Morten's group
  • Carmen Scheibenbogen's group
  • Jonas Bergquist's group
  • Julia L. Newton's group
  • Two other groups
    1. Alain Moreau's group
    2. Mady Hornig, Ian Lipkin and others
  • Summary
  • Final

Myalgic Encephalomyelitis, also called CFS/ME, is a disease without a known biomarker.

Research by several research groups, independently of each other, has, however, made findings in plasma that may help to narrow the search for the cause of CFS/ME. Plasma from ME patients has shown to provoke aberrant responses, a form of hibernating, both in cells from ME patients and healthy controls. At the same time, plasma from healthy controls has eliminated this abnormal response in both cells from ME patients and healthy controls. In addition, several groups have shown that a key enzyme in energy metabolism, pyruvate dehydrogenase (PDH), is down-regulated.
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@Kalliope do you know how to get in touch with Sissel or Jørn? There are some errors in this post, when they explain the biochemistry. The contact form does apparently not work if I am to understand a reply I got just now that Trine is not using the blog service anymore..
 
A Swedish novel about ME, based on a true story, is to be published in a couple of months.

(I have not read the book, so this is not a recommendation, just info.)

Blunda och räkna till hundra ("Close your eyes and count to one hundred") by Pernilla Soland.

In the comments below the linked Facebook post the author says that "the book is about ME, written from the perspective of a mother, focused especially on the onset of the disease and everything that followed". On the mockup of the book cover it says that the main character is a 13 year old girl.

 
P4 Dalarna: ME-sjuka hoppas få hjälp av coronaforskningen
https://sverigesradio.se/artikel/me-sjuka-hoppas-fa-hjalp-av-coronaforskningen
Google Translate said:
ME patients hope to get help from corona research

Many ME patients, who suffer from chronic fatigue and pain, now hope that research on covid-19 will also be of benefit to them.

At least ten thousand people in Sweden suffer from ME and the Swedish Association for ME patients welcomes the research.

"I hope they are seeing the connection between long-lasting symptoms, after viral infections," says ME sufferer Alexandra Forslund in Garpenberg.
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The Norwegian ME Association reports in their latest news summary that they have just published a new survey about disease course. The survey took place in 2019 and had 5 822 respondents. The survey had two main questions: what are typical disease courses and which factors have had a negative or positive influence.

The report was presented yesterday for the Norwegian Directorate of Health.

In the summary of the report they present ten main findings (hastily translated to English by me)

- ME is a chronic illness
- Many are moderately ill, which is serious
- Large fluctuations or deterioration are typical courses
- Recovery happens, but seldom (2% of the respondents)
- A peak in new cases in 2009, which coincides with the swine flu
- Severe disease is associated with early illness debut
- Pacing was the best "medicine"
- The health care system contributes both to better health and to deterioration
- The Norwegian Labour and Welfare Administration makes ME patients worse
- With better adaptions, treatments and understanding, it is possible to have a good life with ME.

Here is link to the report in full (Norwegian only)
https://www.me-foreningen.no/wp-content/uploads/2021/01/Rapport-undersokelse-forlop-komplett.pdf
 
Kalliope said:
The Norwegian ME Association reports in their latest news summary that they have just published a new survey about disease course. The survey took place in 2019 and had 5 822 respondents. The survey had two main questions: what are typical disease courses and which factors have had a negative or positive influence.

The report was presented yesterday for the Norwegian Directorate of Health.

In the summary of the report they present ten main findings (hastily translated to English by me)

- ME is a chronic illness
- Many are moderately ill, which is serious
- Large fluctuations or deterioration are typical courses
- Recovery happens, but seldom (2% of the respondents)
- A peak in new cases in 2009, which coincides with the swine flu
- Severe disease is associated with early illness debut
- Pacing was the best "medicine"
- The health care system contributes both to better health and to deterioration
- The Norwegian Labour and Welfare Administration makes ME patients worse
- With better adaptions, treatments and understanding, it is possible to have a good life with ME.

Here is link to the report in full (Norwegian only)
https://www.me-foreningen.no/wp-content/uploads/2021/01/Rapport-undersokelse-forlop-komplett.pdf
Click to expand...
I was just going to post this. Haven't read it yet, but look forward to doing so (although I guess there will be a lot of distressing answers). I can't remember if I answered the questionnaire myself.
 
Kalliope said:
With better adaptions, treatments and understanding, it is possible to have a good life with ME.
Click to expand...
Absolutely. I would estimate competent health care would cut total disease burden by 60-90%, meaning most of it, if not almost all of the total disease burden, is inflicted by neglect from health care services. Denial has consequences. It varies in time, by now it is 90%+, there has been no credible excuse for continued denial for many years. Almost all the pain and suffering is an ongoing choice made against our explicit dissent.

Impressive numbers given a 5M population. Massive applause to those who did this.
 
Kalliope said:
Here is link to the report in full (Norwegian only)
https://www.me-foreningen.no/wp-content/uploads/2021/01/Rapport-undersokelse-forlop-komplett.pdf
Click to expand...
Will this be translated into English? At least the bit about the different time courses should be more widely available as there's been so little research into this anywhere (section 4, starts on page 19). Very interesting reading. If anyone just wants to look at the graphs:
svingninger/svingende=fluctuating
forbedring=improvement
forverring=worsening
stabilt=stable
store=large
små=small
 
Ravn said:
Will this be translated into English? At least the bit about the different time courses should be more widely available as there's been so little research into this anywhere (section 4, starts on page 19). Very interesting reading. If anyone just wants to look at the graphs:
svingninger/svingende=fluctuating
forbedring=improvement
forverring=worsening
stabilt=stable
store=large
små=small
Click to expand...
I don't know. But I hope they're able to make a summary in English. They've published several very good and thorough reports based on surveys and I agree it would be great if more was available in English. Probably comes down to capacity.
 
Kalliope said:
Jørn Tore Haugen, Master of Science in Engineering, has written a guest blog on "Life with ME by Sissel" titled "CFS/ME - A "factor" in plasma?"

The article is in both English and Norwegian version.

Sub headlines are:

  • Briefly about the blood
  • Briefly about glucose and synthesising to ATP
  • Fluge/Mella/Tronstad's group
  • Ron Davis' group
  • Prusty and Naviaux's groups
  • Karl Morten's group
  • Carmen Scheibenbogen's group
  • Jonas Bergquist's group
  • Julia L. Newton's group
  • Two other groups
    1. Alain Moreau's group
    2. Mady Hornig, Ian Lipkin and others
  • Summary
  • Final

Myalgic Encephalomyelitis, also called CFS/ME, is a disease without a known biomarker.

Research by several research groups, independently of each other, has, however, made findings in plasma that may help to narrow the search for the cause of CFS/ME. Plasma from ME patients has shown to provoke aberrant responses, a form of hibernating, both in cells from ME patients and healthy controls. At the same time, plasma from healthy controls has eliminated this abnormal response in both cells from ME patients and healthy controls. In addition, several groups have shown that a key enzyme in energy metabolism, pyruvate dehydrogenase (PDH), is down-regulated.
Click to expand...
New guest blog from Jørn Tore Haugen, Master of Science in Engineering at the blog "Life with ME by Sissel".
The title is: Energy failure in ME/CFS

Sub headlines:
Mitochondria
What is PEM?
What is a CPET?
Overview studies
Learn more
The battle for truth

In this blogpost, Jørn Tore Haugen has summarized 24 studies showing abnormal lactate and oxygen values in CFS/ME-patients following such a bicycle test (CPET). He has also made an overview of lectures and webinars for those who want to learn more.

English: Energy Failure in ME/CFS
Norwegian: ME-syke har energisvikt
 
Aftonbladet: ME-sjuka Jessika: Jag ligger i sängen 22 timmar om dygnet
https://www.aftonbladet.se/nyheter/a/GaB8qJ/me-sjuka-jessika-jag-ligger-i-sangen-22-timmar-om-dygnet

Google Translate, English
Google Translate said:
ME-sick Jessika: I lie in bed 22 hours a day

Social Insurance Agency: It has not been proven that the ability to work is impaired

Jessika Rönn suffers from the disease ME, myalgic encephalomyelitis, where activity can make the symptoms worse. Now the Swedish Social Insurance Agency believes that she should start working again - despite the fact that she risks getting worse.

- I just screamed out. I just can not, says Jessika Rönn.

When Jessika Rönn was pregnant with her youngest son in 2011, she suffered from pregnancy poisoning. After that, it felt like she never got really well. In the winter of 2013, she then went on a severe pneumonia. Then the body hit backwards. My stomach ached, my body ached and my tiredness did not go away.

- I was completely gone and only got worse. After the slightest activity, I had to rest, says Jessika Rönn. [...]
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