News from Scandinavia

It's good of them to bring attention to this, but I wish they'd underlined that it is biomedical research that's needed the most when they write (my bold. text google translated):

 

I agree with you. But as has been discussed here on the forum before, RME does want there to be an emphasis on psychosocial research and care too. Psychosocial research grounded in a biomedical view of the disease, I would hope, but still... RME has a history of silencing members who criticise BPS. Also, the RME person who wrote/signed the piece is a retired psychologist.

 

Watch the interview with Björn Eklund here:
https://www.tv4.se/artikel/jIGROJUZ...bades-av-me-lag-i-saengen-23-timmar-om-dygnet

Watch a part of the interview with Björn Bragée here:
https://www.tv4.se/artikel/71qQqKd4...tidscovid-samma-som-me-bjoern-bragee-reder-ut

ETA: Agnes Arpi is also interviewed in the long covid video.

 

An English language summary of the report is now available at the NOrwegian ME Association website:
https://www.me-foreningen.no/wp-con...-on-the-course-of-illness-English-summary.pdf

 

It's a rather ironic accusation since the BPS have never been open to the idea that the primary cause and need for treatment is a biological one. ALL of their research is a testament to that. They take as 'proof' that ME or MUS are all psychosomatic the fact that up until now there has been no definitive biological mechanism found. And they have been at it for decades while people are still getting and staying ill despite their 'effective' treatment.

I know I'm repeating myself but what they need to do is answer the question of whether people would recover without any treatment by using some robustly designed transparent trial if they want to really prove that it is their treatment that is effectively treating people or not.

And this is not directed at you @Midattsol as I know you and we all here know this. I understand your frustration.

 

Also, I'd just like to add that any such study would need to be large and longitudinal out past 5 years. Covid I think offers such an opportunity.

 

Thank you @trudeschei. Really interesting how different the time course of ME is from the typically presented one for so many respondents. As for the number of responses you got - 5822 - that's just amazing.

 

I had no idea that the recovery number was so low. My thoughts on a study are moot if this is the case.

Although I couldn't find (not saying it's not there) information on how long people were followed nor if the people responding were captured at the beginning of illness (though I assume this must be the case).

If this recovery number is accurate then there is a load of trouble ahead for the BPS cabal though I suspect that by now they are working on two tracks -- official pronouncements that their research is all good and based in fact and quietly carrying on with a very altered type of treatment in clinic while calling it the same thing as they've always done.

Their real problem may be any zealots that trained early and are true believers and refuse to be retrained. I guess we will see what we will see as time moves forward.

 

Here are my thoughts after watching Malou's interview with Björn Eklund and Bragée.

It felt a bit odd, like an advertisement for Björn Eklund's book, which he apparently has distributed to officials in the Swedish government's Social Committee.
But it is framed as something that will give ME patients hope -
because one person played Russian roulette with his life, and won.
When others in the same situation weren't so lucky and suffered severe deterioration and were left indebted. Or even died. None of this is mentioned in the show.

I wish the Rituximab situation would have been elaborated upon and described with more nuance.
They just mention they've talked about the study before, and the results were negative, eg. did not give any evidence to use the medicine as a treatment for ME patients.

Eklund describes how he decided to "up the ante" when he didn't feel any difference after the forth treatment. He increased the dosage from 2x500 to 5x1000 and says he started to feel better after the first dose of 1000.

Eklund says he traveled to Norway two more times for doses of 2x2000, and felt increasingly better.
He describes himself as 90% recovered now, but is taking antivirals prescribed by Jonas Axelsson from the RED Clinic.

I find it strange that a patient can decide the dosage of such a strong medicine themselves. It's also weird that 'Malou efter tio' chooses to highlight such a special and individual story and frame it as significant for the ME field at large.
That single individuals recover or improve considerably isn't new, whether spontaneously or in connection with a treatment.

The fact that the Norwegian doctor Dagfinn, who administered the medicine, had his license revoked was not mentioned either. That's undeniably interesting information.

There's a lot of spin, and things are omitted that would nuance the picture.

I don't know who's responsible, if it's Malou or if Bragée could have contributed to a more well rounded picture.
The editors of the show don't seem to do much research before the features on ME.

Bragée said it would be great if larger and more studies could be done on Rituximab, but the medicine is so expensive that no clinic can afford to do a study.
Is that really something that should be done?
More studies on Rituximab?

Isn't what we need to move on to be able to categorize different subgroups?

But they weren't able to distinguish any subgroups in the Rituximab study either, is that correct?

By the way, how did Fluge and Mellas' Cyclophosphamide study go?

I haven't read Björn Eklund's book, but single individuals with ME recovering and/or improving isn't new, so I really don't understand how this story creates hope?

That ME researchers applying for grants, from the NIH for example, get them approved, that would give me hope.
Or that the research grants for ME were on a par with grants for MS or Alzheimer's.
Or that knowledge of ME in health care systems, municipalities and Social Security Agencies was so great, and the disease so accepted, that we got the support and care we need without hesitation and while being treated with respect. That would give me hope.

Björn Eklund felt he could just as easily "throw in the towel", "had nothing to lose" when he had been bedridden 23 hours/day for 2 1/2 years. That doesn't mean all severe ME patients feel that way, and not the whole time.

More biomedical specialist clinics (like Stora Sköndal, which is closing down) would improve the situation a lot for people living with ME. Because it's not just about the disease itself, but also about being mistrusted and neglected by the healthcare system, society at large and sometimes even friends and family.

I would love to get better, but even if I don't, I want to live. I love my life, however restricted it might be, and personally I would never risk my life for a chance to get well. "

Edit: clarity, grammar

 

I agree 100%! Thank you so much. So many incredibly important observations/points..!

 

This is an older video of Swedish tennis player Robin Söderling talking about his mononucleosis/glandular fever and lingering symptoms in English. He got GF in 2011 at the age of 26, and this video is from 2014. He hadn't played tennis for years and he officially announced his retirement about a year after the video. I know this is quite old but I couldn't find it on this forum and thought it was worth posting.

The part about his illness starts around 2:20 and they mostly talk about this until the end of the video. I wonder how he is doing now.

https://www.youtube.com/watch?v=LyFdr3onUgY

 

I did a quick Google search. Seems like he did a big Radio Interview in 2020 that several written media quoted.

https://www.tennis.com/pro-game/202...ens-nine-years-later-i-feel-good-again/89539/

 

Thanks! Oh no, anxiety, panic attacks, mental health?! I thought he described ME/CFS so very accurately in the interview! I'm glad he is back to normal though, that must feel great.

 

Great timing for a hit piece same week as the National Committee for Medical and Health Research Ethics will be having the complaints concerning the planned study on Lightning Process on their agenda.

I'm sick to my stomach after having read the article and the way he describes patients. This was a low move, even from him.

 

I wonder if actually someone else than ME patients might have asked some critical questions concerning LP and the planned study, and that this is the reason behind the article? Wyller wants his institution to stand up for him. His appeal might indicate that they're not.