News from Scandinavia

Don't know if this has been posted

The news of the meeting of parliament the opportunity to ME / CFS disease and its status in Finland

https://www.youtube.com/watch?v=yUKiMzbnjUE

 

SVT: Sjuka Sture Eklund får rätt till sjukpenning: ”Skönt det är klart”
https://www.svt.se/nyheter/lokalt/n...-far-ratt-till-sjukpenning-skont-det-ar-klart

 

Article in Aftenposten about young people who struggle with mental illness and social pressure.

One young lady got EBV and broke her collarbone at 15, got diagnosed with chronic fatigue, “also called ME” and stayed home for three months. Wouldn’t accept that it would be chronic, and worked hard to get back to school. Says it’s scary with these diagnoses that ‘allow’ you to take it easy.

It’s not uncommon to be ill for several months after an EBV infection, my cousin struggled for six months before being back to normal. It’s horrible, and I’m really glad this girl got better. I am however horrified that anyone would give her an ME-diagnosis that quickly.

https://www.aftenposten.no/amagasin...a-overens-med-hvordan-de-unge-faktisk-har-det

I won’t bother with Google translate because it’s a long article mostly about other issues, and the gist of the ME-related story is summarized above.

 

I agree; this obsession with early diagnosis is IMO flawed.
I think that maybe an initial diagnosis of Post Viral fatigue (if it is following a virus/infection) and prescribing full rest (ie not just told to 'take it easy')for a few months and then reassess after that would be more prudent.
But for adults in particular this would not go down well with employers or the Government who want people back at work as soon as possible.

 

I wouldn't diagnose ME until 3 years. I think there needs to be an intermediate diagnosis of something like "proto ME" before that, as it could go either way.

 

Well the BPS crowd wants that essentially none gets diagnosed with ME/CFS because it is apparently so horrific to hear the words ME/CFS mentioned that the diagnosis itself incapacitates people. This is what Jörgen Malmquist argued in a Swedish newspaper article earlier this year. It seems his only concern was how patients would react to such a diagnosis, not the disease itself. MUS or functional disorder sounds less worse.

 

Its an article about «The young people (who soon shall take over the world), but all we are talking about is their fragile psychic health». It is of course great that the girl presented with CFS got better.

The journalist writes CFS «also known as ME». First the mandatory mistake «CFS» is ME and lot of different things are clumped together. But why in the first place have this anecdote in this kind of article?

There are a couple of really bad things, when the girl described that she kind of could lay at home and find some kind of joy in the diagnosis? What kind of statement is that, and it really makes you wonder about the diagnosis she was given? We know all about the many misdiagnosis. The very troublesome part is some statements that she is convinced that the mental job was what got her out of bed again. Well. of course that part is important, but for many it has limits. Many patients do exactly this job, but maybe improves just a little, nothing or maybe deteriorate. The problem with this kind of statement, is that you lose all the complex factors that impact long-run prognosis. What an average reader without necessary knowledge is left with, is probably that recovery/getting better «is only up to the person». If it only was that simple. She also makes some weird statements that some diagnosis (probably also ME?) been a kind of apology for not giving it all, which you have to. You have to work. It is not about pleasing the world before taking a break, but it gets wrong when life is more spare-time than work»??

Ouch. Good the girl got better, but this is another bad one, and not representative for ME-patients.

 

Just went and searched Michael Sharpe on Twitter as I wanted to see if he'd had any response to his tweet about the Grauniad podcast he's in today. He's retweeted a tweet from Live Landmark to his feed.

https://twitter.com/user/status/1056938956082872322

 

That's nice of them. I agree, it's a "must" read.

 

Live landmark, is that related to the landmark self improvement cult?

 

No - she is the person who brought LP/lightning process to Norway and is heavily involved in promoting of LP for ME-patients (beeing a former patient herself). Some may call that a cult, but not likely the one your thinking of?

 

The little I know is that lightning process is a money maker cooked up by Phil parker.
So “live landmark” is somebody’s legal name? It Sounds like something out of an indy horror movie, the front company owned by organ harvesting zombies.

 

It’s pronounced more like Leeveh than ‘live’, but yeah

 

It's her legal name, yes.

Live is pronounced more like "leave-eh". Sounds different to english speakers I'm sure, but Live is a common enough female name over here 2 858 females to be exact, just checked with the Statistics Norway database Landmark a bit less common, only 420 persons have that last name - and the norwegian meaning is more "a field of land".

But I rather go with zombies

 

Jinx, @inox !

 

I don't know who this is, but seems like a Swedish journalist is looking for experts/researchers on ME so thought I'd share the request here
https://twitter.com/user/status/1059046479451643904

 

Shared above tweet with Sten Helmfrid.

 

That must be a great feeling for the activists, to have that power...if only I could feel that too...and if only I could see the change that comes along with it... (cynisism)

 

That's really odd, I agree. I think most of us were maybe glad to have a name for one's disability, but to find joy in the diagnosis? The symptoms remain the same, no matter the name. I mourned for 6 weeks and said good-bye to my old life, at least for some time, and I set the goal to get back to it. Haven't worked yet though...

 

https://twitter.com/user/status/1060926666464223233


---

Sent: Friday 9 November 2018 14:35
To: cureme@me-cfs.se
Subject: Swedish reporter is preliminary interested in PACE trial



Dear Sirs,

In Sweden we had extensive reporting of the the surgeon Paolo Macchiarini and his fraudulent research, which led to his and others fall. SVT made several investigative television programs where the fraud of Paolo Macchiarini was exposed. SVT is the public television broadcaster of Sweden. A sort of the counterpart of BBC.

https://www.theguardian.com/science/2017/sep/01/paolo-macchiarini-scientist-surgeon-rise-and-fall

https://www.bbc.com/news/magazine-37311038

Now, a medical reporter/journalist of SVT says she is interested in the PACE trial for maybe the future. She can be contacted via PGP encrypted email if wanted she says. Testimonies of persons with insight in the PACE trial might be interesting for her to read. Her contact details are below.

Yours Sincerely, Kasper



Josefin Lennen Merckx
Medicinreporter
SVT Nyheter Rapport & Aktuellt

phone +46708847056 connection 47308
josefin.lennen-merckx@svt.se