News from Scandinavia

Haven't seen it myself, but here's a summary


Microsoft translation:
In today's interpellation debate, Minister for Social Affairs blamed @lenahallengren a lack of consensus on diagnostic criteria for not setting up a centre of Excellence FOR ME/CFS. Bad excuse. The Canadian consensus criteria were highlighted in the SBU :s expert report and are used in the Stockholm Region.

ETA: SBU = The Swedish Agency for Health Technology Assessment and Assessment of Social Services
 
write up by Linda Tannenbaum on trip to Denmark
(from an email)
Visiting our friends in Denmark
Written by Linda Tannenbaum, OMF Founder & CEO/President

After our meetings in London, I continued on my End ME/CFS Worldwide Tour 2019 with a stop in Copenhagen, Denmark on Sunday, June 2nd. It was very important for me to be in Denmark and shine an international light on the many challenges Danish patients are facing, and show them the USA, OMF and the world care, and understand their challenges.

Upon my arrival, I was welcomed by Helle Florgaard (Board Member) and her husband and Cathrine Engsig (Vice-Chair) from the Danish ME Association/ME Foreningen. At my talk, there were about 40 attendees including the chairman of The Swedish National Association for ME Patients (RME), Kerstin Heiling, who came all the way from Sweden. Most of the attendees were patients and caregivers. We had a lot of engagement and many questions. At the personal meet and greet afterward, I had the pleasure to talk to some patients; their personal stories keep touching my heart.

Denmark%202019%201.jpg

Left to Right: Left: Vibeke Vind (Scientific Consultant Danish ME Association), Linda Christensen (Board Member Danish ME Association) Linda Tannenbaum and Cathrine Engsig (Vice-Chair).
Picture middle: Linda and Cathrine; Picture right: Vibeke, Cathrine, Linda.

It was not only important for me to give an update on what OMF is doing to accelerate open collaborative research to unravel ME/CFS, but I also wanted to raise awareness, share information and especially bring hope to Danish patients. The people were very nice and thanked us all for spreading hope.

“It was lovely to have Linda come all the way to Denmark and bring hope and research updates,” according to Cathrine Engsig. “The situation in Denmark for ME patients is not good. Although the parliament has decided that ME is a somatic disease and should be treated as one, the Danish doctors don’t agree with the politicians and are angry that this happened. They don’t have much knowledge about ME. Doctors don’t recognize the disease and only one private doctor is known to give the diagnosis in Denmark due to the heavy influence of psychiatry on the government level."

In London, I already had the honor of meeting with Dr. Jesper Mehlsen. Dr. Mehlsen is seeing patients and doing research in Denmark and we look forward to collaborating with him. Dr. Mehlsen is a very caring doctor; he understands the disease, sees many patients and treats their symptoms.

After the meeting, we all had a nice dinner together with several members of the Danish ME Association, where we talked about the ME/CFS situation in Denmark and exchanged hope and ideas to conquer this terrible disease together. We especially want to thank our new friends from the Danish ME Association, in particular, Rebecca Hansen (Chair), Cathrine and Helle for their warm welcome and a perfectly organized event! We truly hope that with these Worldwide Tour talks – and blogs – we can offer some hope and much needed scientific information so that health authorities will better understand this terrible disease.
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This blog post is about why it might be difficult but sometimes also very important to criticise "the good guys". It's well worth a read.

It's relevant not only because of the Montoya news and how it is currently being talked about on social media etc, but also in relation to the situations that during the last few years keep sparking reoccurring conflicts in Swedish ME groups (which does more harm to the ME community: silencing justifiable criticism and continuously sweeping serious problems under the rug, or acknowledging the problems and talking openly about them?). Is this a big source of conflict in other countries too?

https://mitteremitage.wordpress.com/2019/06/07/en-elefant-i-rummet/

Google Translate, English ("An Elephant in the Room")

Google Translate said:
[...] For me, an event like this becomes a reminder that we must not glorify people who do good in the ME world to the extent that we at the same time protect them from relevant criticism.

For example, we must also be able to talk openly about how we are treated by healthcare staff at our ME centers. Researchers within our field must be scrutinized in the same way that we want others to be scrutinized. We must be able to criticize people who are on our side, if the criticism we propose is relevant. And we can not look the other way just because we ourselves are in desperate need of change in our disease situation. We must not close our eyes to wrongdoings.

Unfortunately, I have seen the trends. That some say we must speak (only) well about our specialist clinics, about our ME specialists. And those who put forward relevant criticism have been criticized for this. I myself have received criticism from other ME sufferers because I highlighted things that I considered to be problematic.
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(I'd say that's very "politely" put of the blogger... Sadly, people have been silenced, censored, bullied, ostracised and defamed etc, for expressing justifiable criticism.)
Google Translate said:
We must not be so afraid of losing what we have, that we cannot criticize what is relevant - because specialist care also needs to be developed and become both more person-centered and accessible. And we must be able to identify and criticize abusive behaviour.
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Google Translate, English ("An Elephant in the Room")

 
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mango said:
This blog post is about why it might be difficult but sometimes also very important to criticise "the good guys". It's well worth a read.

It's relevant not only because of the Montoya news and how it is currently being talked about on social media etc, but also in relation to the situations that during the last few years keep sparking reoccurring conflicts in Swedish ME groups (which does more harm to the ME community: silencing justifiable criticism and continuously sweeping serious problems under the rug, or acknowledging the problems and talking openly about them?). Is this a big source of conflict in other countries too?

https://mitteremitage.wordpress.com/2019/06/07/en-elefant-i-rummet/

Google Translate, English ("An Elephant in the Room")


(I'd say that's very "politely" put of the blogger... Sadly, people have been silenced, censored, bullied, ostracised and defamed etc, for expressing justifiable criticism.)

Google Translate, English ("An Elephant in the Room")

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I agree with the view of the blogger and patient, but not sure how big of a problem this actually is? My opinion is that the climate for (constructive) criticism in all directions overall are quite good, also among “the good guys”. Could be wrong.

In Norway there are no clinics, so that kind of solves itself in its peculiar unsatisfactory way. But there surely is room for a lot of improvement on a more general level. I imagine that every ME-patient in contact with the healthcare system have experienced at least one, often several episodes that objectively easily should be categorized as unacceptable.
 
Danish Medical Journal (Ugeskriftet.dk) has published an article about the status of CFS/ME. It's good to see references to Wilshire et al and Twisk et al, but the authors still suggests that a subset of ME-patients might benefit from GET. They also define ME as a functional disorder..

The recommended treatment modalities for patients with ME / CFS have been centered on graded training and cognitive behavioral therapy. In recent years, the utility of the graded exercise in the treatment of ME / CFS has been questioned.This partly based on the increasing recognition of the metabolic disorders of ME / CFS, and partly based on a critical review of the clinical studies that lay the basis of these forms of treatment [24, 25].

A key issue and basis for great disagreement with the approach to patients is whether we should "spare" or "push" them.We do not have a definitive answer, but suggest that much of the disagreement is based on the fact that a subset of this poorly-defined patient group will benefit from being "pushed" into graded training and cognitive therapy while at the other end of the spectrum will be patients who, at the cellular level, will be harmed by training and therefore must be "spared" [25, 26]. In both groups, symptomatic treatment can be attempted in close collaboration with the patient, where sleep problems, orthostatic intolerance, pain and other key symptoms can be handled carefully according to current guidelines.

It is stated that there is currently no evidence-based treatment modalities aimed at the basic disease process in ME / CFS, as this is not known.

Myalgisk encefalomyelitis eller kronisk træthedssyndrom
google translation: Myalgic encephalomyelitis or chronic fatigue syndrome

Summary:

Louise Brinth, Henrik Nielsen, Kim Varming, Susanne E Boonen, AC Gonzalez Ebsen, Paula Fernández-Guerra, Anne Sophie Schou, Jesper Mehlsen, Niels Gregersen, Ivan Brandslund & Rikke Katrine Jentoft Olsen:

Myalgic encephalomyelitis or chronic fatigue syndrome

Ugeskr Læger 2019;181:V08180570

In this review, we discuss the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterised by extreme mental and physical fatigue with associated symptoms of pain, disturbed sleep, cognitive and autonomic dysfunction, as well as post-exertional malaise. This condition is often preceded by an infection, severe physiological and/or psychological strain. Over the last decades, research has demonstrated mitochondrial, neuroendocrine, immunological, and metabolic perturbations in patients with ME/CFS, giving hope for the development of new biomarkers and new treatment modalities.

 
One of the authors, Mehlsen, has been invited by the Swedish patient organisation RME to give a talk on "Meeting ME/CFS patients in a clinical setting" at their public seminars this fall.

Will he be talking about treatment recommendations? If so, will he be recommending GET, like this article of his does? Will he be talking about functional disorders? :(

I wonder why RME choose Mehlsen, out of all the people on the planet, to give this particular talk. Why not one of the more experienced clinicians from one of the Swedish biomedical ME centers, for example? Why someone from another country, a country that has a completely different (arguably much more problematic) clinical approach to ME?

Andy said:
Two conferences later in the year from RME.

16th October in Stockholm
https://rme.nu/5763-2/

17th October in Umeå
https://rme.nu/konferens-17-oktober-2019-umea/

Both links not in English.
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mango said:
One of the authors, Mehlsen, has been invited by the Swedish patient organisation RME to give a talk on "Meeting ME/CFS patients in a clinical setting" at their public seminars this fall.

Will he be talking about treatment recommendations? If so, will he be recommending GET, like this article of his does? Will he be talking about functional disorders? :(

I wonder why RME choose Mehlsen, out of all the people on the planet, to give this particular talk. Why not one of the more experienced clinicians from one of the Swedish biomedical ME centers, for example? Why someone from another country, a country that has a completely different (arguably much more problematic) clinical approach to ME?
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I didn't know Mehlsen, but googling him would suggest no need to worry to much?He was engagede in removing ME from functional disorders in Denmark. He is very clear in this statement at the danish ME association:
https://me-foreningen.dk/om-me/informationsmateriale/

Also, I didn't read the article as recommending GET, but initiating the idea that there are patients who should absolutly not do GET and are likely to be harmed.

The same argument is beeing introduced here by various people. As a way to get the discusion moving foreward, and opening for seperating ME-patients from the muddle of CFS.

edit: words - how do they work? some went missing, some extra :-P
 
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inox said:
I didn't know Mehlsen, but googling him [...]
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Thank you! I too googled Mehlsen earlier, but those links didn't show up in the search result for me. Instead, I got links to his paper with Per Fink et al The Danish study of Functional Disorders, among other things...

Very helpful to get some insight from the perspective of Danish pwME and ME Foreningen, thank you :)
 
mango said:
Thank you! I too googled Mehlsen earlier, but those links didn't show up in the search result for me. Instead, I got links to his paper with Per Fink et al The Danish study of Functional Disorders, among other things...

Very helpful to get some insight from the perspective of Danish pwME and ME Foreningen, thank you :)
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Oh, and I didn't see that functional disorder paper - that would have worried me too! Don't understand why he is involved in that, but the things I'm finding seems good? He signed this for instance, appealing to the Netherlands:
https://www.meaction.net/2018/07/20...ands-to-invest-in-biomedical-research-for-me/
 
News article about a woman who just got compensation for developing ME after a shot with the flu vaccine Pandemrix.

ABC Nyheter: Kvinne fikk ME etter Pandemrix-vaksine - saksøkte staten og vant
google translation: Woman got ME after Pandemrix vaccine - sued the state and won

Trude Schei from the Norwegian ME Association says in the article:

- No matter which vaccine is involved, there is a risk of someone having a serious side effect. But in a societal perspective, the vaccination has great value because it provides protection that makes many very sick.

- Therefore, it is a social responsibility to care for those who become ill by the vaccine. I find it very positive that those who have had a negative effect from the vaccine receive compensation, says Schei to ABC News.

She thinks that taking care of those who have had serious side effects, along with research on why someone gets these side effects, will increase confidence in the health authorities and the vaccination program.
 
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Kalliope said:
News article about a woman who just got compensation for developing ME after a shot with the flu vaccine Pandemrix.

ABC Nyheter: Kvinne fikk ME etter Pandemrix-vaksine - saksøkte staten og vant
google translation: Woman got ME after Pandemrix vaccine - sued the state and won

Trude Schei from the Norwegian ME Association says in the article:

- No matter which vaccine is involved, there is a risk of someone having a serious side effect. But in a societal perspective, the vaccination has great value because it provides protection that makes many very sick.

- Therefore, it is a social responsibility to care for those who become ill by the vaccine. I find it very positive that those who have had a negative effect from the vaccine receive compensation, says Schei to ABC News.

She thinks that taking care of those who have had serious side effects, along with research on why someone gets these side effects, will increase confidence in the health authorities and the vaccination program.
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Sometimes I wonder if that's one of the reasons we are suppressed, that this may be one of the consequences of vaccination and the anticipated disaster it would cause.

For the record I would still be 100% in favor of mass vaccination, even if it were the main culprit. It's still entirely worth it on balance. But, you know, don't freaking hang us out to dry and actually work on fixing it. We can have both, it's not a mutually exclusive choice.

I don't give it big odds, probably just one factor out of many. I've had many immune reactions in my life, including a vaccine and antibiotics. It's probably more of an accumulation of things that just leave the system in a sustained state of emergency.

Because overall it would be 100x more damaging if it turned out to be an important factor that had been suppressed. Antivaxxers would jump on it and it would wreak havoc on public confidence in health care systems. It would likely add even more to fuel the fire than the Wakefield paper.
 
Kalliope said:
The Norwegian ME Association just announced that they are open for applications from Norwegian researchers for clinical trials into symptom relief for sleep difficulties, pain and/or stomach/digestive problems.

They have 1.3 million NOK (150 000 USD, 1 18 000 GBP, 132 000 EUR) for this purpose.

Announcement: 1 300 000 kroner til forskning på symptomlindring
google translation: 1 300 000 NOK for research on symptom relief
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That’s great. Well done to all who donated, fundraised or in some way were involved. I think I would have preferred the money wasn’t restricted to clinical trials/symptoms relief. I think it’s important to work out the biology so we have a better understanding of what is involved, what drugs might be required, what objective measures could be used to measure clinical response, etc.
 
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