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

Khrono has an article on this now. Focuses on the controversy, though nice quote from Nina Steinkopf as a headline. Silje Reme is interviewed, with comments from Nina Steinkopf.

«Oslo-erklæring» om ME møter motstand. — Bør lytte til majoriteten av pasientgruppen
"Oslo declaration" on ME meets resistance. — Should listen to the majority of the patient group

Today was the closing seminar of the research project "Tjenesten og MEg" (thread here) where pwME's experiences with healthcare, welfare and other relevant services have been explored. The overwhelming response is that patients are not listened to. I think Khrono could have interviewed some of those researchers not a patient representative (Steinkopf is great, but it is an uneven playing field when one is a patient and the other is a professor).
 
Frustrating article. The journalist doesn't seem to do any attempt to figure out what is going on or what the truth is. They just quote the researchers and then a short response by a patient/advocate who doesn't agree. It doesn't give readers any background or insight.

A good journalist would have looked into the matter himself/herself and asked critical questions: didn't the PACE trial had null results for recovery/employment? Why doesn't the consortium address the reports of harm by GET? Why are no current patients or patient organisation involved? Isn't the new perspective proposed the same as the one proposed by Wessely et al. in 1989? etc.
 




Adam @ABrokenBattery's tweet:

"Hi @ellapickover [URL='https://twitter.com/eblackburne']@eblackburne[/URL], I have put together a quick thread in response to your recent article 'New hope for 'incurable' disease that leaves sufferers shattered'. There may be some things you are not aware of."



The article Adam is responding to:-


'New hope for 'incurable' disease that leaves sufferers shattered'

'Little is known about ME - or chronic fatigue syndrome - but people with the condition can suffer for years with many left feeling their is no hope'

'the new paper, from the Oslo Chronic Fatigue Consortium, which is made up of researchers, clinicians and patients including some academics from the UK, suggests that there is not a “specific disease process” behind chronic fatigue syndromes, including “post-Covid conditions”.

'Academics said symptoms are “more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided”. They also suggest people with chronic fatigue syndromes should avoid “prolonged rest, social isolation and sensory deprivation”.

https://www.walesonline.co.uk/news/uk-news/new-hope-incurable-disease-leaves-27783441


etc, etc. The journalists just parroting the devious, manipulative fiction narrative by the BPS cabal.
 
I know that the title of the article is really annoying given that we know this has been the dominant paradigm since at least Incline Village if not earlier. However, it's possible that the authors now perceive that the ground is shifting and feel like they're now the beleaguered minority. They've taken a lot of losses lately like PACE FOIA and NICE Guidelines 2021.
 
Apologies if this has been posted already. I saw it posted to a Facebook group I'm a member of.
The poster didn't put which newspaper it was in. A couple of comments mention the Daily Mail but the journalist looks like they work for the Independent I newspaper and it does remind me of its formatting though I'm certainly no expert on UK papers.

I wonder is there any chance the Science Media Centre or some other body have sent out a press release/similar?

382829125_10100159604446103_1245747113629852739_n.jpg
Click to expand...
 
Last edited:
And another one! The BPS/psychosocial cabal tactic of flooding the press with their disinformation, their well worn tactic.


Nottingham Post. There is a template as these articles are the same word for word, a few jiggled sentences maybe. Dross.


'New hope for 'incurable' disease that leaves sufferers shattered
Little is known about ME - or chronic fatigue syndrome - but people with the condition can suffer for years with many left feeling their is no hope'

https://www.nottinghampost.com/news...gwFAs5qwLTGEUSKDyIHYbD6IeJwMEqILdOrscU9QVPsoE
 
Lou B Lou said:
And another one! The BPS/psychosocial cabal tactic of flooding the press with their disinformation, their well worn tactic.


Nottingham Post. There is a template as these articles are the same word for word, a few jiggled sentences maybe. Dross.


'New hope for 'incurable' disease that leaves sufferers shattered
Little is known about ME - or chronic fatigue syndrome - but people with the condition can suffer for years with many left feeling their is no hope'

https://www.nottinghampost.com/news...gwFAs5qwLTGEUSKDyIHYbD6IeJwMEqILdOrscU9QVPsoE
Click to expand...
Same thing with the lazy "Long Covid is inflated" editorial. Looks like the SMC doing a push on both here.

Meanwhile record sick leave news are being blamed on 'stress' and mental illness. It's really remarkable just how much propaganda there is on medical issues. I knew to some degree but it's as bad as what polluting industries and other nasties do. It really raises many questions about how common this is, because it's clearly core to health care policy.
 
Trish said:
It really is horrific that a bunch of ignorant and irresponsible clinicians have such an influence over the media. We really do live in a post truth age.
What on earth can we do?
Click to expand...
It takes two to swallow an obvious lie: a liar and someone willing to not care how obvious the lie is. At this point I barely blame them, they're being handed praise and awards by their peers. How could they really suspect that they could possibly be wrong given this? They got everything they wanted, everywhere they go they're elevated and everything they say is presented as genius work, even when they parrot the same old stuff they always did. Even though it's all been debunked, there are never any consequences.

We just keep at it. We're right and they're wrong, and it doesn't matter yet but it will eventually.
 
From the tweet above
"Paul Garner: "Real illnesses that people can recover from". Top people in the field in chronic fatigue and post-covid conditions. Current dominant narrative of "incurable disease" itself harms people."

So many issues in that.
1. Is Paul Garner himself actually recovered? There are plenty of indications suggesting not e.g. his retirement.

2. 'Chronic fatigue' could be anything - many causes, many of which can be treated and many of which people recover from. Mentioning 'chronic fatigue' just muddies the waters.

3. 'Post-covid conditions' are also diverse - and similarly some can be treated and some people recover from

4. It is of course true that many people recover from post-Covid fatigue + other symptoms, even those who meet ME/CFS criteria. It's just the same with people recovering from post-EBV infection fatigue + other symptoms. I don't think many people dispute that. Prospective studies seem to suggest that recovery is more common than not in the first year. So, to imply that the dominant narrative is that a lot of people don't recover from Long covid is nonsense.

It's slightly different to talk about an "incurable disease" though. A cure is something that is applied to the person - a programme of activity, a drug, and that stops the disease. I think it is true that the dominant narrative is that there is no cure for ME/CFS - both NICE and the CDC say that, and I agree with them. There is no good evidence that there is any cure right now.

5. As to whether a dominant narrative of "incurable disease" harms people? Well, it probably does. But, if it is the truth, what should we do? Pretend that there is a cure so patients don't feel upset when they learn that they have a disease that doctors can't fix, and so doctors don't have to feel inadequate ? I imagine people with other currently incurable diseases also feel upset when they learn they have something that can't be fixed. But, facing up to that is the first step towards the research needed to find a cure.

I guess I'd say to Paul Garner 'Face our (and possibly your) reality. There is no cure for ME/CFS at present. What you are doing is making the experience of people with ME/CFS worse, and making it harder to find real answers.'
 
Hutan said:
But, if it is the truth, what should we do? Pretend that there is a cure so patients don't feel upset when they learn that they have a disease that doctors can't fix, and so doctors don't have to feel inadequate ?
Click to expand...

Similar to Dr Norman Swan today on ABC radio at 6:15 — "[Graded exercise therapy] is controversial with a small group of people with chronic fatigue syndrome. But if you look at the ... population of people who've got ME/chronic fatigue syndrome, there is good evidence that cognitive behavioural therapy, in the absence of medical therapy... what are you going to do? Are you going to sit with your symptoms?"
 
SNT Gatchaman said:
Similar to Dr Norman Swan today on ABC radio at 6:15 — "[Graded exercise therapy] is controversial with a small group of people with chronic fatigue syndrome. But if you look at the ... population of people who've got ME/chronic fatigue syndrome, there is good evidence that cognitive behavioural therapy, in the absence of medical therapy... what are you going to do? Are you going to sit with your symptoms?"
Click to expand...

So depressing that Dr Norman Swan keeps parroting Andrew Lloyd’s BS. Does not even have the decency to read the Pace trial himself and look at the raw data. He has interviewed Sharpe, White Wessely and Lloyd multiple times over the years and never had a patient or specialist on who deals with the disorder daily. Seems he will never get out of his mind that post infective fatigue states are not psychosomatic illness with deconditioning.
 
He can't last forever. There is the younger presenter of the Health Report, Tegan Taylor. She seems to be a bit more switched on when it comes to this issue. Maybe she would be willing to allow people with other views to present them?

Perhaps someone could point Norman Swan to our list of organisations asking for the flawed Cochrane 2019 Exercise therapy review to be removed? These organisations represent a considerable percentage of the people who are informed about ME/CFS world wide - not just a 'small group of people'. Perhaps he could be invited to read the comments on the petition?
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom