Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

I suspect there are people within these groups whose job it is to generate the press releases and ensure they're disseminated and picked up. It's an embedded and costly utility to promote. It was one of my responsibilities in the research firm I worked for before I grew too sick. Take a subject, reduce it to boilerplate, front it with a snappy first paragraph. It can be assembly line packaged news, and it saves journals $'s while helping them seem tuned in.

 

Moved post

Article from a research news site with interviews with Professor Silje Reme, Professor Tronstad and the Norwegian ME Association.

Some quotes:

ME patients are often advised to be careful about exerting themselves, so that they do not develop symptoms afterwards.

- This does not happen with the other conditions. We recommend gradually increased activity for all forms of exhaustion. Fatigue and other symptoms after activity are unpleasant, but not dangerous, says Reme.

...

- Neither can PEM, which can be increased fatigue or pain, be measured in the body, but is a subjective experience, says Reme.

The symptoms are undoubtedly real, but they do not always stem from physical illness.

...
(Professor Tronstad)
- We have already analyzed several thousand different molecules in the blood and found extensive differences in ME patients compared to healthy ones. At the same time, there is some variation within the ME group, he says.

...

The ME association does not see any solution in uniting the two research directions on ME - that which looks for biological causes and that which believes that ME is due to a mixture of biological, psychological and social factors.

- They don't talk about the same patient group once, so I don't understand how they can agree. In that case, one side has to say that they were very wrong, says Trude Schei.

Forskning.no: Folk kan bli friske av ME, long covid og utbrenthet, ifølge 50 forskere og leger
google translation: People can recover from ME, long covid and burnout, according to 50 researchers and doctors

 

You made me laugh out loud. For a while. Still smiling. Thanks for that.

 

ME Association Statement by Dr Charles Shepherd and Russel Fleming

Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!

quote:

While we focus on trying to bring positive change on behalf of people who have been neglected for far too long, others are choosing to go against evidence-based recommendations and the overwhelming views of the patient community.

This latest effort from Norway appears to confirm that a concerted effort is underway from a handful of professionals – some of whom have clear conflicts of interest – that are once again trying to self-aggrandise at the expense of people who have been maligned and stigmatised.

Their day is done, and they need to recognise this fact. Instead, they should focus their own energies on the positive developments that have been achieved by working with us all to improve health and wellbeing for everyone with ME/CFS.

 

Keep telling the truth. They're very well organized and have a lot of people they can get news to quickly but there has already been a paradigm shift where their treatment isn't the go-to treatment anymore in a lot of places. I consider this Oslo-thingy a nuisance but far from a loss as long as we keep countering their narrative. What they say is old wine in new bottles and we should make that abundantly clear as a community. Seeing the community note on Garner's account, the comments on social media, the pushback from scientists and activists alike I'm actually in a positive frame of mind about this whole ordeal.

 

Moved post

What a muddled mess of an article if the translation is accurate. Tronstad tells about the biological abnormalities that they've found, then Reme gets to chime in with her bullshit. Tronstad and Schei seem to do a good job. PEM is mentioned as the most important factor differentiating ME from other diseases by Schei but isn't elaborated on. Seeing the rest of the article I'd imagine that's an editorial decision rather than hers, but I don't know.

Everything Reme said was bullshit, but this bit by forskning stuck out to me:

Tronstad has nothing to do with the Oslo Declaration as far as I know, which decent scientist would? Sticking that last sentence at the end of this paragraph might sow doubt about that for a casual onlooker. It builds on the Oslo groups' bullshit that they're about biological causes but also about psychological and social causes. When in reality they only focus on psychological and social causes, which we of course know can't explain this disease.

 

News article on Stockholm University's website:

Ny forskning breddar uppfattningar om kroniska utmattningssyndrom och postcovid-tillstånd
https://www.su.se/nyheter/ny-forskn...ningssyndrom-och-postcovid-tillstånd-1.678099

Google Translate, English

 

from the autotranslate in @mango 's post above

they really are extraordinary. We get a miniscule bit of traction in some quarters that actually the old paradigm might just be wrong, and they present the old paradigm as being a completely new one and the press start fawning all over them... again.

I mean what the actual _ ?

Its just surreal

 

The bit in bold... This is what some doctors have been expecting of women with all sorts of diseases since the time of the Ancient Greeks, so it isn't new.

 

I have posted a blogpost about the false claims of Stockholm university:

Google translated:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

"a gradual and controlled approach to increasing activity is crucial for rehabilitation".

There is nothing controlled or gradual about how you are supposed to behave after LP. The 2 approaches are diametrically different, you basically can't support/suggest both!

GET proponents claim that harms from GET are from not doing it correctly but with Lighting Process there is a free for all about how one behaves after it. You are basically signalling you are not truly concerned about the safety of patients or that you don't really care about the details of a graded activity program if you promote LP.

 

If that reasoning held water it would undo the history of pretty much every known disease, i.e., every disease would be rooted in psychological factors - until technology or innovative/lucky thinking found a biomarker. So all diseases would be assumed psychological until Science finally catches up with reality.

Which sort of says it all about psychology as a medical utility.

 

Psychosomatic explanations for illness are a placeholder that exists to control patients until the biomedical science catches up and makes the illness treatable.

Get the patients high on positive thinking and they won't bother others with their complaints. Alternatively, instill in them belief that they brought this on themselves and have no medical problem and then they won't waste the doctor's time (who can't help anyway).

 

It’s this inversion of reality by switching the subject/object fur every single fact to make it look like they aren’t the old and dodgy psych isn’t the only thing allowed to be looked into for 40yr etc that makes me think they aren’t just deluded but are calculated. There is constructivism where you distort your own reality and then there’s learning to keep a straight face whilst you swear black is white and that you’ve no idea where the cake went even though you know you’ve hit chocolate all over your face that the person you are swearing blind to must also see.

in this case it’s being the one nicking all the funding each year fir forty years trying to pretend ‘it’s their turn now’ , again , just like we are a bunch of toys/pawns to predate on as a game of funding where doing the least useful thing for the end-user is s laugh because it isn’t measured and track record of having applied for the same funding to do the same iterative was always going to be useless thing wasn’t going to result in nothing useful do you can gravy train by saying nothing works yet again the next year. As if it doesn’t massively harm pwme in the process and that doesn’t matter anyway.

 

KBT kan hjälpa mot extrem trötthet vid postcovid
https://sverigesradio.se/artikel/kbt-kan-hjalpa-mot-extrem-trotthet

(Sveriges Radio is Sweden's national publicly funded radio broadcaster.)

Comments on the article by @MittEremltage on their blog:

Gammal skåpmat
https://mitteremitage.wordpress.com/2023/10/02/gammal-skapmat/