Developing a biopsychosocial model and self-management treatment for fatigue in paediatric multiple sclerosis (CFS included a bit), 2019, Carroll

Possibly only abstract available online at the moment:

https://kclpure.kcl.ac.uk/portal/en...is(b2b8bf27-5410-4241-be98-8a9a86016739).html

https://kclpure.kcl.ac.uk/portal/en/persons/susan-carroll(c9101ea1-a5ab-494a-a5ca-fb00091d741d).html

 

And what do we say about correlation? That's it's not causation. Especially when it's so obviously a consequence of. Good grief these people are so desperate to show that the last 3 decades of this BS have not been the complete and total waste that it was. This is just embarrassing. What kind of start to a career is that as a thesis? It's malpractice to actually do that to someone.

Who was it who commented to Wessely on a panel "do you hear yourself talk?" This obsession with finding a psychological model of "fatigue", whatever is meant by this here, is seriously pathological and deranged. There are flat-earthers out there who are less ridiculous in trying to come up with evidence and are at least embarrassed when their experiments show them wrong.

Having the option of actual medical care, not much surprise that people would decline to participate in this nonsense. So much easier to manipulate people when you have successfully blocked all other options. Incredibly, despite this, the conclusion is always and forever shall be: more research is needed. Because reasons, as usual.

Still there is a lesson to be had: if patients say no to nonsense, it stops the train. Something to consider moving forward, and definitely related to discouraging ME patients from joining organizations and support groups. Maybe advising ME patients not to agree to any kind of nonsense just because it comes from licensed medical professionals, that they don't have to desperately try obvious pseudoscience when it looks this ridiculous.

 

The culmination of some 23 years of education.

There's still time for this individual to become severely addicted to video games and thereby curtail her negative impact on the suffering of real human beings.

 

I thought about this paper a bit more yesterday and in some ways it's devastating to the entire BPS ME model. It's roughly the same stuff as FITNET and something like a dozen other attempts at self-managed CBT for "fatigue". I'd put FINE in that category and possibly PRINCE, if I remember correctly what it was about. There's a recent one by Knoop as well. Always fails on practical measures, always concludes otherwise.

Here the paper positively compares the "fatigue", or whatever their interpretation of fatigue is, between CFS and MS, they are at a similar enough level. The fatigue component of the BPS CFS model is strictly generic and as such comparable, if not identical, to the BPS model of MS "fatigue". For all practical matters, the "fatigue" discussed here is perfectly equivalent to the "fatigue" in the ME BPS model, meaning it should work just the same.

MS patients have clinical options. They have access to high-quality medical care from GPs and specialist clinicians and nurses. I have seen very often in discussions that involve people with MS that they rate "fatigue", though probably the same issue and that it's more of a flu-like sickness feeling, and brain fog (as the Reddit discussion in this thread showed once more) are pretty much the most disabling symptoms for MS patients. Similar reports from pretty much every immune-mediated and autoimmune diseases are found: those symptoms are some of the most disabling but specialists are not interested. In the thread I linked about brain fog for autoimmune diseases it states that 90% of autoimmune disease patients rate those as the most impactful symptoms.

In the BPS model, fatigue is this generic "feeling of tiredness" and is nonspecific. So the "fatigue" used here is considered equivalent whether it's MS, Parkinson's, ME or Lupus. There should be no particular difference between those diseases about the specific symptom of fatigue. So there is no reason why it should "work", which is false but BPS proponents still claim so, in ME but found to be so utterly useless by MS patients that they would decline to even participate in a prospective study.

Because there are still ongoing trials of similar internet-delivered self-manage CBT for fatigue in CFS. Some in the past are considered a success. Yet MS patients, who should technically be equally impacted, find it so ridiculous they decline to participate in high enough numbers that it doesn't even get off the ground.

The BPS approach is to never attempt to falsify, always try to prove it right instead. The rejection of ME patients is argued to be a pathological refusal against psychological treatments, and yet perfectly equivalent MS patients reject it in even greater number because they have actual alternative and are not coerced into being "good patients".

Makes me think of chi masters going against real opponents. So used to deal with a closed bubble of people who play along and throw themselves on the ground, suddenly doesn't work as well when facing people who don't give in to the make-believe. The emperor should definitely not be foolish enough to lend his invisible garment, yet clearly is.

 

What's that smell?

 

https://www.researchgate.net/profile/Susan_Carroll4/research