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

This dialogue should include a wider range of views,

Yes, we certainly don't want to continue the practice of the previous several decades where one view completely dominated the whole discussion and decision making process. That would indeed be an intolerable injustice. :whistle:

All they are proving is the most ancient of political truths that power never cedes willingly. It has to be taken. Fortunately we live in an era when, at least in this situation, it can be done by peaceful means. For that I am grateful, and so should they be.
 
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They want to hear from patients who have recovered?

I recovered after a 3 year bout of mild/moderate M.E., by resting as necessary and not challenging my body until it apparently healed itself. I was well for 7 years and then had a nasty relapse and am in my 7th year of moderate/severe.

Do you think they want to hear from me? I don't hold with any of their nonsense so I suspect not!
 
Research from several fields including neuroscience, evolutionary biology, and physiology provides promising explanations for understanding symptom onset, development, and persistence. Faced by perceived threats to our wellbeing, our brain networks generate alarms in the form of symptoms, such as fatigue and pain, to warn us and shut us down. These alarms may be seen as crucial processes selected through evolution to keep us safe. More specifically, pain signals tissue damage, and fatigue signals a disbalance between effort needed, expected reward and available resources [Citation27], but they are also regulated and influenced by context. These perceived threats to our safety can evoke a stress response of automated bodily defense mechanisms consisting of interlinked immunological, hormonal, cognitive, and behavioral adjustments. This response is initially temporary and adaptive, but may become persistent and maladaptive chronically affecting sleep and cognitive functioning [Citation28,Citation29]. A high level of neuroplasticity in this alarm system risks associative learning, whereby the alarms are reactivated by innocent cues (by classical conditioning). The way we experience a situation is strongly influenced by our previous experience and expectations [Citation22,Citation30,Citation31]. Other processes that contribute to symptom persistence include unconscious bias in attention and interpretation, sensitization to stimuli and changes in perception effort [Citation32].
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Why is this nonsense being presented as scientific explanation? That's just a vague speculation. The references have barely anything to do with ME/CFS.
 
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The ‘Oslo Climate Consortium’ consists of influencers and businessmen who question the current narrative that climate changes, including worldwide forest fires, are incurable processes. Instead, we propose an alternative view, based on what Henrik's dad said (he knows because a Norwegian friend of his in Tromso says there is still tons of snow there), which offers more hope to people. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors (like Facebook or government enquiries maybe), rather than a specific climate process.

Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. (But we're just bullshitting really.)

We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided.

We also question the idea that the best way to cope with the illness is by reducing fossil fuel burning and cutting down trees. Instead, we propose that recovery is often possible if people are helped to adopt a less threatening understanding of their house burning down or being flooded and are supported in a gradual return to normal activities.

Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including Henrik's dad's friend who still flies a private jet so has no hassle.
 
I'm so sick of them turning associative learning on its head. In the beginning people don't expect to feel ill after any activity, we learn exertion causes us to crash. Not the other way around as they keep proposing.

Jonathan Edwards said:
we propose an alternative view, based on what Henrik's dad said (he knows because a Norwegian friend of his in Tromso says there is still tons of snow there)
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This reminds me of posting an image of a very summery early spring day in Bergen; green grass, clear blue sky, brilliant sun... and having a family member in Tromsø reply with an image of the heap of snow outside their building that was three times as high as her :rofl:
 
Jonathan Edwards said:
I loved the phrase 'based on research'. How can it not have occurred to people like Garner, Sharpe, Chalder, Floptop, that to academic community a phrase like this will sound pretty much like 'my dad said'.
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I think I've mentioned it on the forum before, but in my clinical training we have been taught to tell difficult patients our treatments are "evidence based" and then not discuss it any further.
 
Kalliope said:
Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.
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Sure, I'm happy to hear about those who recovered, especially if there are statistically significantly more of them in the active treatment group of a clinical trial than in the control group, and recovery is clinically real and long lasting, not just filling in questionnaires differently.

Anyone else who recovered, I wish them well and envy their good fortune, but I'm not interested in what whacky stuff they were trying at the time of recovery, or what stories they tell themselves about how superior they are at controlling their minds and bodies.

I have read the article.

The 'sciency bit' reads to me like the description of what LP trainers tell their clients as part of softening them up to be brainwashed to pretend they have recovered. It's unsurprising that they conflate ME/CFS with burnout and every other cause of fatigue.

The rest of the article is patronising and insulting garbage wrapped in a nasty tone of superiority with a bit of hero-scientist victimhood thrown in.
 
They write (my bolding):

"As a Consortium of researchers, academics, and clinicians interested in the causes and treatments of fatigue and fatigue related conditions, as well as representatives of patients who have suffered from these illnesses themselves, we propose that a different narrative also needs to be heard."
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It is not so clear who of the authors is a representative of ME/CFS patients. Do they mean Henrik Vogt?
 
They also write:

"By contrast, the approach often recommended by the public narrative of inactivity, isolation, and sensory deprivation, risks worsening symptoms and associated disability."
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I wonder who they think is recommending isolation and sensory deprivation. These are not viewed as coping mechanism (a choice) but something that the illness forces onto patients.
 
Kalliope said:
Chronic fatigue syndromes: real illnesses that people can recover from
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Individualized rehabilitative treatments such as cognitive behavioral therapy (CBT) and graded exercise therapy (GET), based on this understanding and given within a supportive therapeutic relationship, help patients to gain control of their illness [Citation42]. When given correctly by appropriately trained therapists these treatments can offer useful improvement for many and recovery for some [Citation43].
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no mention of harms?

conclusive evidence of recovery without fiddling the results?

talk about echo chamber. Do they ever listen to patients, or read other research, reviews,reports other than their own? (looking at the citations, nah).
 
ME/CFS Skeptic said:
They write (my bolding):

"As a Consortium of researchers, academics, and clinicians interested in the causes and treatments of fatigue and fatigue related conditions, as well as representatives of patients who have suffered from these illnesses themselves, we propose that a different narrative also needs to be heard."
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It is not so clear who of the authors is a representative of ME/CFS patients. Do they mean Henrik Vogt?
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Vogt suffered from tinnitus, and I think he thinks that's relevant because he regards both tinnitus and ME as under the same umbrella. LP coach Live Landmark was diagnosed with ME but says in her talk about LP that the method gave her a choice of either having an incurable disease or a stress related condition she could do something about.

ETA: Vogt is no longer leader of Recovery Norge, but I guess he can still claim he represents the members?
 
These statements are also quite remarkable:

"Persistent fatigue also occurs in many other illnesses [7,10–12] and is therefore unlikely to indicate a distinct illness with specific pathology."

"The experience of pain, for example, can arise from expectations based on prior experience, without any neuronal input from peripheral sense organs and influenced by the interplay of biological, psychological, and social factors."

"Those who have improved or recovered through cognitive, behavioural, and stress-reducing strategies can offer special insight into both the experience of illness and the ways out of it. Unfortunately, their personal stories are rarely promoted or represented by advocacy groups as they do not match the ‘incurable physical disease’ narrative."

"We call for change. Specifically, we propose that doctors and health professionals should feel free to discuss and express different understandings of these illnesses. They should also be free to recommend any evidence-based treatments that offer a realistic hope of improvement and even recovery"
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I don't quite understand the latter: aren't they free to recommend evidence-based treatments?
 
Kalliope said:
Vogt suffered from tinnitus, and I think he thinks that's relevant because he regards both tinnitus and ME as under the same umbrella. LP coach Live Landmark was diagnosed with ME but says in her talk about LP that the method gave her a choice of either having an incurable disease or a stress related condition she could do something about.
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Thanks. But it seems that the conference does not include anyone who currently has ME/CFS or who is a representative of a ME/CFS patient organisation?
 
ME/CFS Skeptic said:
Thanks. But it seems that the conference does not include anyone who currently has ME/CFS or who is a representative of a ME/CFS patient organisation?
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I assume also Garner is included as a representative of patients. But other than Vogt being a member of Recovery Norge, then no, you are right, no current ME/CFS sufferers or patient organisations included.
 
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