News from Scandinavia

That seemed odd to me too. How and why would a patient 'activist' hack into his e-mail to send those messages?

 

No case to answer unless he provides evidence. Just more stigmatisation of ME sufferers.

 

The Swedish newspaper Expressen had yesterday an article about 27 year old Sofia who suffers from Ehler-Danlos syndrome and ME, but wasn't correctly diagnosed until she moved to Stockholm.

She talks about a life with a lot of pain and wrong treatments until she finally met a doctor who gave her a thorough assessment.

- Just coming into the clinic was such a relief. There was no one laughing, wincing or trying to push me down. They lamented and said I was not alone. It's such an amazing feeling to be believed and listened to.

Expressen: Sofia fick sin EDS-diagnos efter 27 år
google translation: Sofie received a EDS diagnosis after 27 years

 

Prof. Ola D. Saugstad has been a guest in a podcast about parenting.

The result is a good and informative podcast episode on ME. He talked about what ME is, its symptoms and about PEM.
He went briefly thought the history, different definitions of ME and how that can lead to different research results.
He emphasised the importance of rest and activity adaptation and that health care workers, family and friends must understand and respect the patient's limits.

The result is a podcast episode of 39 minutes providing a really good introduction to ME.

https://open.spotify.com/episode/6OEOiLDC5A8r8eyg8SMaLs?si=lRfoTWNXQ1imqRbfbCDhwQ

 

According to the Podcast's website it's also available in iTunes, CastBox and Acast besides Spotify. But I think for now the episode has only been released on Spotify. It's in Norwegian only, I'm afraid..

 

Found it on iTunes by searching for "foreldrerådet".

 

Good opinion piece in a medical newspaper by Sigmund Olafsen, PhD - adviser for master degrees in acoustics and public health.

Lack of data is probably an important reason for lack of objectivity in the ME debate. Another challenge is that studies of cognitive techniques have used, in part, very "creative" techniques in the statistical analysis, where published results do not match what patients and relatives experience.

Utfordringene i ME-debatten
google translate: The challenges in the ME debate

 

From the quote in @Kalliope 's post above

Very creative techniques are the least of it, we know from PACE that they deliberately sought to avoid collecting meaningful data on harms. Then, because there was no data on harms, encouraged the assumption the treatments are safe and cannot harm. A practice that continues in many UK CFS clinics today & I daresay clinics in other countries follow the same path.

Hard to see it as anything other than fraud really.

 

Brutal. And fair. We do not fight. We are being brutalized. We do none of the fighting, only the suffering. This is a war on US. Waged by people whose aims are harmful to us.

 

The Norwegian ME Association has a guest blog from father to a son who suffers from ME. He tells how he regrets following prof Wyller's advice on trying Lightning Process as treatment. The father is a therapist himself with additional education in cognitive theory and thought LP was the same as cognitive therapy. He joined his son on the LP course and describes it as a frightening experience.

We have made many mistakes as parents - because we want to help. Sending him on LP course is one of the biggest mistakes that has given me a lot of bad conscience and guilt. Unfortunately I feel that exposing my child to LP is a kind of abuse.

Min erfaring med LP
google translation: My experience with LP

 

Nina E. Steinkopf has taken a further look into rulings in the National Insurance Court in Norway regarding benefits for patients with ME.
It's heart breaking to read these rulings. about how ill the patients are and about everything they've tried, yet the court believes more treatment, as CBT, must be tried even though the patients has full support from their doctors that they're not able to work.

Avslag i Trygderetten på feil grunnlag
google translation: Refusal in Social Security on the wrong ground

 

https://translate.google.com/translate?sl=auto&tl=en&u=https://melivet.com/2020/06/17/avslag-i-trygderetten-pa-feil-grunnlag-1/

@Hilda Bastian if you can please also read this article on how patients are told they must undergo CBT/GET to obtain a disability pension. The argument is that that these can reverse disability and/or restore ability to work and neither of these claims are supported by credible evidence.

There's also another problem, not limited to Scandinavia, where patients may be forced to drop out of CBT/GET treatment because it makes them worse. It then becomes easy for disability assessors to refuse them disability pension on the grounds that the treatment was proven to be safe (eg. in the PACE trial) and the patient made no serious effort to get better. Since CBT/GET was created by people with links to the private health insurance industry, one wonders whether that was intended to be so.

 

Thanks - will read it.

 

Doesn't sound good. There a couple of forum threads about research papers co-authored by prosjektleder Egil Andreas Fors, e.g. the one on neuropsychological dysfunction in CFS/ME here.

List of Publications:
https://www.ntnu.edu/employees/egil.a.fors

 

I haven't watched this and I wouldn't understand it anyway! But thought you scandies might like......

https://twitter.com/user/status/1276037392013692929

 

Haha. Funny, I liked it.
But a scary true story behind this gallows humor.

 

You couldn't make it up.

Google translation of the captions for the non-scandies:

00:00 - 00: 05So we ask them to sign. Right here. Thanks, you won't get it back.

00:05 - 00: 07This is going to be so good! Think positive. You "do" ME.

00:07 - 00:10 "How much does this cost?" Why do you ask?

00:11 - 00:16 "No, I do not have much savings because of the situation ..". Sell your car?

00:17 - 00:21 "Yes if I get well then it's well worth it."

00:21 - 00:24 "She sold"

00:29 - 00:31 "She sold!"

00:31 - 00: 34 On the "course" we are in a circle and trampling on sheets

00:38 - 00: 40 That's all!

00:41 - 00: 47 I remember one in the group who was very critical, and raised my hand all the time to be skeptical ...

00:47 - 00: 50The participant asked "why does it help to ignore the symptoms?". "Is it based on research?"

00:50 - 00: 56I answered "of course", but it's not!

00:58 - 00: 59But Norwegian newspapers

00:59 - 01: 01 They believe in us!

01:04 - 01: 06 We can send them anything!

01:06 - 01: 08And they're advertising the LP!

01:13 - 01: 14 That's true!

01:14 - 01: 16 I've gotten so damn rich with those idiots

01:16 - 01: 20VG and Dagbladet ..

01:21 - 01: 27 I just send them piss and they go right on! "Studies" we have made ourselves!

01:35 - 01: 36We take $ 17,000 for each

01:36 - 01: 39And we have no clue, at all

01:41 - 01: 44 They say "it doesn't work, I'm much worse"

01:44 - 01:47 "Can I get the money back? Are there any rules about this?"

01:47 - 01: 49Have them empty pockets ..

01:50 - 01: 53I say "you haven't tried hard enough"

01:54 - 01:56 "Try again"

01:56 - 01:58 "Only 17 000kr"

01:58 - 02: 02And those who criticize us are called .... "activists"

02:05 - 02: 07 That's true!

02:10 - 02: 11Of Vg

02:11 - 02: 13And Dagbladet!

02:15 - 02: 17 I have a buddy scientist in Norway

02:17 - 02: 20 Who lives by researching this patient group and he laughs all the way to the bank!

02:21 - 02: 28Last now, he got millions to investigate if music can cure ME.We all knew it wouldn't show anything, but Dagbladet ...

02:29 - 02: 30Do they just read the abstract?

02:30 - 02: 32 They believe everything he says!

02:36 - 02: 39The "cured" took fewer steps

02:40 - 02: 42And the control group ...

02:50 - 02: 55 But it's so dangerous it worked for PACE

02:56 - 02: 58 Was there no real effect there either?

02:58 - 03: 04No you could have poorer functioning at the start of the study than at the end of the study..On questionnaires

03:04 - 03: 09 And still be considered cured ..

03:09 - 03: 11 But the magazines don't understand anything

03:16 - 03: 20 Want a new job?

03:23 - 03: 26You can make a millionaire on this!

03:31 - 03: 36And now we're going to "research" the LP too, it's golden times!