News from Scandinavia

Google translation of the response by Karl Johan Tronstad, Øystein Fluge, Olav Mella

 

To add to my previous comment, here are the Google translate links for each comment.

Comment dated 01/12/2017 - https://translate.google.co.uk/tran...m-og-pyruvat-dehydrogenasefunksjon&edit-text=

Comment dated 06/12/2017 - https://translate.google.co.uk/tran...mentar/fortsatt-ikke-uproblematisk&edit-text=

Comment dated 10/12/2017 - https://translate.google.co.uk/tran...017/12/kommentar/poesi-med-pyruvat&edit-text=

Comment dated 11/12/2017 - https://translate.google.co.uk/tran...nase-og-kronisk-utmattelsessyndrom&edit-text=

 

Thank you @Andy I didn't know you could just click on each response for full text. That made it a lot easier

Thank you also @strategist ! There's another reply as well from Tronstad/Fluge/Mella from today. I've added it to my previous post about the debate.

 

Basically what they are saying is that it's not possible to compare a genetic defect of pyruvate dehydrogenase (PDH) with suppression of PDH (technically, increased expression of inhibitory pyruvate dehydrogenase kinases). Also that the abnormalities observed in patients are difficult to explain as being due to a sedentary lifestyle or dietary changes.

 

The article is now available and not behind a paywall. I hope that google translate will do the rest to make it readable.

 

Looks like you need to sign up to be able to view it.

 

Sorry, from here I have access to it. Is it OK to post the full article here ( I can´t recall how to post it on a "curtain")? I guess it should be of interest as Prof. Blomberg now is associated to the team at OMI.

I hope that google translate made it good enough:

A crisis commission is needed for the disease ME

A National Crisis Commission is required to investigate the ME / CFS disease. It considers one of Sweden's leading researchers in the field, Professor Emeritus Jonas Blomberg.
By Henrik Ennart

Jonas Blomberg, Professor Emeritus in Clinical Virology at Uppsala University.

"The disease ME / CFS - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - has in recent years developed into one of the clearest reasons for long-term sick leave.
But despite the fact that the disease counted in number of cases is in line with MS, and it is suspected to be able to contribute a large part of all sick leave for more than 14 days, in Sweden there is almost no money at all for research.

"We need to take a joint approach both clinically and on the lab side to get to the bottom of the disease: What is this? In Norway, it has been done more than in Sweden, but in most places it is based on the occurrence of a fire, "says Jonas Blomberg, professor emeritus in clinical virology at Uppsala University and one of those in Sweden who got the most involved in disease.

A better word, then, is exhaustion syndrome. Typical of the disease is that you get extremely physically exhausted already in light physical activity.
He believes that the established research funds often go into trampled moors and easily ignore this kind of new, multifactorial systemic disease that does not fall under any individual specialty

"Today, ME patients are sent between specialists and occupy a lot of resources with repeated sampling that rarely leads anywhere. In addition to the fact that a larger investment could help many people, I think society could save a lot of money on having a strategy. Those who allocate research funds ask for evidence but do not want to give the chance to emerge, says Jonas Blomberg.

The causes of the disease are not known but there are diagnostic criteria. The knowledge about these is unevenly spread within the healthcare sector. In addition, the often life-long disease, although common in the Western world, is less explored than other diagnoses.

"In the 1950s I followed my dad who was a neurologist home to patients who were in the then almost unknown disease MS. That's about how the ME patients are seen today. They get lost and must constantly explain their illness, "says Jonas Blomberg.
Misunderstandings contribute to the fact that the disease is often called fatigue syndrome. That is, many patients mean that calling cancer for an ill-illness, because fatigue is just one of several symptoms.

- A better word is, in that case, exhaustion syndrome. Typical of the disease is that you get extremely physically exhausted already in light physical activity, says Jonas Blomberg.
As SvD said earlier, the US National Institute of Health recently recently upgraded its prioritization of the disease and doubles its research funding for ME / CFS this year.

While the Swedish research is going on idle, the US Health Agency, the National Institute of Health, is increasing funding for ME research to $ 13 million this year.
"I'm very happy for this venture to come true. NIH has acknowledged that ME / CFS has been extremely underfinanced and that this must be addressed. But there is a long way left, says Anne Örtegren, author of the newsletter mecfsnyheter.se and who is suffering from the disease for many years.

 

Today on TV in Sweden about ME/CFS in "Efter 10 med Malou/ After 10 with Malou" at 10 am on channel 4 . It´s a talkshow but also serious. An ex-politician and advocate with ME/CFS and an active politician were interviewed. Quite good.

I´m happy to see that there is a flow in media of interviews and articles about ME/CFS since a week ago. It should lead to a breakthrough here sooner or later. And we haven´t heard from the dismissive and Dr. M*ts R*im*rs ( a and e) yet.

 

Great news about Efter 10 med Malou. Didn't she recently interview the autor Karin Alvtegen on ME? Do you have a link to today's programme?

Unfortunately the doctor has written a new blogpost at Dagens Medicin (a newspaper for health-related news) supporting Lightning Process, the "patient"-organisation Recovery Norway (with people who have made themselves well by their own efforts - very pro LP and CBT), and CBT/GET.

My impression is that Swedish ME-patients are trying not to get too much attention to his texts or drive traffic, so am unsure whether or not I should link to it? It is complete nonsense. but there is a commentary section where someone is already making very good points.

What do you think? Add link or not?

 

Here is link to today's programme of Malou efter tio about ME, health care (or lack of) for ME-patients in Sweden and the need for more research.

Duration 16 minutes. Language: Swedish

Pernilla Zethraeus har varit svårt sjuk i ME/CFS sedan 2002

 

Here is a link to a twitter thread about the blog post, at least.
https://twitter.com/user/status/940888294522486785

 

Yes, but it was some time ago. Good that you found the link!

I had missed the latest article by that doctor. Sigh! The comments by "Sten" are very good and I think the development around the world in research about ME/CFS is the only way to silent M R´s voice. He is sharp and should be updated with the ME research, if he would like to, so I´m confused and guess there is another agenda. The truth will win one day.

In my opinion, people who are interested should read the article, but as you say it´s complete nonsense. As a ME-doctor said to me: Who cares about M R? I guess we, PWME do, but not many doctors.

 

Professor Vegard Bruun Wyller joins the debate. He is an ME-researcher with a bio-psycho-social approach to ME and one of the editors of the Journal for the Norwegian Medical Association.

Ukritisk medieopptreden av ME-forskere
google translation: Uncritical media performance by ME researchers

This tabloid message was rapidly spread in social media, and may have influenced both public opinion, bureaucratic decisions (including research funding) and patient self-perception. The latter may cause patients to fail to receive effective treatment. A recent intervention study shows the effect of the "Lightning Process" method (4), which is a variant of cognitive behavioral therapy. Patients with chronic fatigue syndrome should of course be encouraged to try such methods, but many will probably say no if they believe in the (incorrect) message that the disease is "in the blood". Thus, they miss an opportunity to improve their level of functioning and, at best, become completely healthy.

 

@Kalliope and @Helen , I'm starting to wonder if these items shouldn't be posted as individual threads moving forward. A new thread has appeared based on Bliksrud's original attack on Fluge and Mella, which you list earlier in this thread, probably as it wasn't so easy to spot that it had already been posted in this thread. If, as seems the case, ME is being talked about more frequently in the press and elsewhere in Scandinavia, it's likely that this thread will just become very long and difficult to keep track of what was said on what subject. Just a personal suggestion, and I appreciate, as I'm sure everybody else does, your efforts to keep us up-to-date.

 

I get your point @Andy I was hoping this could become an archive in time of the media cover and ME-debate in Scandinavia - but yes, I realise this thread might be confusing to follow.

 

@Andy and @Kalliope. Please do what you think should be the best.

 

The 6th article in a week !!! about ME/CFS has just been published in the Swedish newspaper Svenska Dagbladet. The first news on the first page!
The newspaper is well reputed and read by many in position to do something to the situation; doctors, researchers, politicians, filantropes/donators etc. I think this will benefit us all, as there probably will be more money granted for research, and first of all acceptance of the disease.

https://www.svd.se/om/kroniskt-trotthetssyndrom

Scary ignorance of ME - patients need help
Many still hear that the disease ME is imaginary, psychiatric or because of stress. The situation of the patients in Sweden is completely unacceptable - both human and socio-economic. Says Joachim Stokstad, journalist and relative.

Chronic fatigue syndrome
ME / CFS, Chronic fatigue syndrome, is one of the fastest growing diagnoses in Sweden. The disease is characterized by the condition of the patient being impaired by physical activity. Many people therefore stay for a long time. Now the Swedish Social Insurance Agency asks the National Board of Health to assess the disease.

@Andy , feel free to move this post if you´d like to.

 

I´m happy to tell that today the newspaper (well-reputed and conservative) that I mentioned above publishes, I think, the eighth or ninth article about ME/CFS. Most articles are behind a paywall, but some important articles are free. In one article the Minister of Health expresses frustration and the need of more knowledge about ME/CFS to all people.

https://www.svd.se/om/kroniskt-trotthetssyndrom

I told some relatives about my diagnose about a week ago, and now they are sending me articles and support of all kinds. I wish that all of you soon will experience this moment of breakthrough. It was the best Christmas present to Swedish ME-patients, and hopefully the ME-community now will get more money that will serve us all.

 

I am so happy to hear this, @Helen So great that the articles in SVD get much attention.

My impression is that things are really moving forward in Sweden. Finally! And you don't have obstacles as LP-coaches claiming to have the cure or an established biopsychosocial "expertise" on ME.

 

Yes, indeed and I guess Norway and the other Northern countries will follow. We don´t have the LP-coaches here, but we have Dr. Mats Reimers and some other ME-deniers, who actively and openly dismiss us.