Psychology Today: In Search of a Coherent Understanding of ME/CFS and Long Covid, Jake Hollis

Key points

• Modern medicine routinely fails to make sense of ME/CFS and long covid.
• This incoherence, along with wider stigma, leaves sufferers frustrated and confused.
• A systems view of illness encourages us to consider how states of imbalance arise across bodily systems.
• Viewing symptoms as signs of being dysregulated, not broken, can open the way for the possibility of recovery.

The article is quite muddled, this is how it ends:

A New Hope

Clearly, a systems framework for understanding ME/CFS and long covid gives rise to many further pressing questions. Zooming out of the physiological mechanisms at play in ME/CFS and long covid, we can also do well to consider what wider biological, psychological, and environmental factors give rise to this state of imbalance in the entire organism.

The prospect of making sense of your supposedly “medically unexplained” symptoms as a potentially reversible state of dysregulation and dyshomeostasis across multiple bodily systems lends itself to possibility, hope, and agency. This understanding offers the possibility of creating a new, healthier set of conditions which may foster greater regulation and homeostasis — and therefore recovery. This is how I make sense of my own recovery from ME/CFS and long covid. I look forward to going deeper into this fascinating area with you in future posts.
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So we can expect more to come home from him. Jake Hollis calls himself " The Fatigue Psychologist" and you can already find a few things about him if you look him up on S4ME (letters to the Guardian).

https://www.psychologytoday.com/int...oherent-understanding-of-mecfs-and-long-covid

 

This seems to be a surprisingly common theme in medicine from Freud to Wessely, to replace science with literary invention.

 

In my opinion, retrospectively inventing an inspiring narrative can occur in the reconstruction phase of one's life, after the illness has significantly improved. This occurs because we want to give value and meaning to what happened. We also want to explain to others why we were missing from life for so long, but these others are often unable to bear the harsh reality, so there is a pressure to tell a positive story.

If someone asks me, a disabled person, what I do for work, I don't want to upset them with the truth and disturb the conversation, I want to say it in a way that allows a leasant conversaion to continue. It's things like these that create pressure to tell a positive story.

The reconstruction phase would be the phase where the illness has already improved, the capacity to do things has returned, but one hasn't mentally adjusted to this new reality yet, and is disoriented and struggling to make the transition from sick to healthier person. Habits and thoughts that are appropriate for a sick person must be abandoned, new ones must be introduced. The old habits would be considered very negative for a healthy person (these things depend a lot on the context). So there is often emphasis on letting go of negativity.

While this reconstruction phase can include changes and habits that promote further improvement of the physical illness, it is not what led to improvement in the first place. It seems that some people struggle to separate the psychological level from the physical, lack objectivity or are overly positive (perhaps to compensate for a very negative experience).

 

How can someone that’s trained on the human mind be so oblivious to bias?

It’s about as nonsensical as Eye movement desensitization and reprocessing.

 

Interesting to see the way the dysregulation argument is laid out and all the familiar false steps of the 'systems' approach fashion.

I was reminded again of our search for mechanisms for RA and lupus on Thursday, listening to a seminar on the rare condition progressive pulmonary fibrosis, which included words like dysregulation, systems and multidisciplinary. It became clear by the end that the team had no theory of how the disease came about, just the same sort of explainaway word strings that Hollis invokes. People do this in biomedical research just as much as in psychology now. Maybe Jo C and I need to sit down and work out the answer for PPF, but to be honest ME/CFS is the priority!

A major part of this is something I am trying to find a term for but is sort of 'The fallacy of explanation by normality'. As far as I can see all psychology uses this fallacy. You work out an account of how our minds normally respond to world events. How we respond to loss or stress or desire or whatever. You then use that theory of normal responses to explain illness.

But the catch is that illness is obviously not just normal response to world events because it only occurs in a few people at certain times and loads of other people in the same world are well. So it cannot be explained by the theory of normal responses. It can only be explained by some other factor in addition. For RA, after ten years, we suddenly twigged to what that factor could be. It wasn't going to be 'molecular mimicry' based on normal rules of immune response. Something completely unexpected had to be added in.

Progressive pulmonary fibrosis is weird in that it looks a bit like an autoimmune disease, a bit like cancer, a bit like Alzheimer's, a bit like ankylosing spondylitis, and a bit like osteoporosis. But although we have a fairly good idea of the 'additional factor' for most of those (in Alzheimer's it is still unclear) for PPF none of them seem to be feasible. It seems that there is a type of additional factor that nobody has even dreamt of.

Like for ME/CFS.

To be fair, dysregulation may be a reasonable word for many of these situations, but without a specific flip switch it tells us nothing and leads people into the fallacy of explanation by normality.

 

So this fallacy is to explain illness as the results of the lack of normality, rather than explaining the lack of normality as the result of illness?

 

No the fallacy is to use normal mechanisms to explain abnormal illness. It makes no sense to do that but nobody has noticed.

Psychologists do not have any accounts of normal mechanisms. That is because their 'science' is, like eighteenth century chemistry, a purely observational one without any mechanisms. Nobody knows anything about mind mechanisms. Nobody knew anything about valency mechanisms until quantum theory explained them. If your science is purely observational you cannot explain deviations from normal because all you have are the known patterns of normality. In the old days nobody could explain why calcium sometimes has a valency of 1 when almost all the time it is 2. Quantum theory tells us why. Nobody can explain post-natal depression on the basis of normal psychological dynamics after childbirth even the psychologists think they can. They have nothing to explain why it happens to just a few mothers.

 

Can you elaborate on this?

Is it for example the idea that everyone experiences fatigue, but that ME/CFS have somehow trained their perception of fatigue to such extreme sensitivity that they feel like they're experiencing a level of fatigue that is normally present in major illnesses?

Or is it more the idea of trying to explain an illness by thinking of a normal person, and how they experience events and things like fatigue, and then trying to build an explanation around that?

 

A sort of medical Scully Syndrome?

https://tvtropes.org/pmwiki/pmwiki.php/Main/ScullySyndrome

 

That, and of course it cannot work because the normal person does not have ME/CFS.

 

Sort of similar.

 

The Paul Garner effect.

 

This reveals a lot about the problem, because it's also modern medicine that invented the weird stuff he's promoting here, and it applies even more directly because it's affirmative. The model he's promoting was created by modern medicine, for modern medicine. Well, by the parts of modern medicine that don't work, but happen alongside the parts that do. Medicine routinely fails to make sense of all sorts of things. Until it does. Logical fallacies don't change that.

"The empire strikes back" makes a lot more sense here than A new hope. This is just the same old nonsense. It's not zooming out to a broader view either, the psychobehavioral ideology is as shallow and narrow as anything gets. It is far more reductive than biomedicine, which is the only part of medicine that actually works.

And, yeah, I remember the name. The dude who wrote another letter selling his business, being given another go by PT to promote his business as an advertorial. That's a very odd use of this publication.

 

I'll second that. You can chalk it up to human nature to think x caused y when they see y happening after x. But what they sometimes forget is that ME/CFS patients are desperate bunches who have tried just about anything and everything just like themselves, to escape the prison they are in.

The premise that the Fatigue Psychologist started out with, the sense of coherence on the health outcome, is a correlational study done with well-defined pathologies. It could well be that those who had better prognosis also had better sense of coherence. You can't deduce from it that the sense of coherence leads to better physical outcome.

In his view, it's the holistic approach to ME/CFS that lead to his recovery (or, how he made sense of his recovery). But he's forgetting that there are plenty of other patients who hold holistic multi-systemic, multi-factorial view of ME/CFS, and yet remain sick. That is not to say that hope and agency are useless and there is no harm in believing that they do effect outcome. But you just can't tout them as some sort of treatment since all we have are anecdotes without evidence that they effect the prognosis.

 

Not in the mood to read, but if we change ME/CFS and LC to HIV+ how horribly offensive would it be? Also, if we substitute with “spontaneous human combustion” how hilarious?

 

I hope he'll acknowledge that there are many people with other stories for their recoveries - I got better because I took these expensive supplements! because I got acupuncture and reiki and crystal healing! because I realised I'd never really been ill at all! because the people at my church prayed for me! because I did keto/went vegan/ate only between the hours of 12 and 4! because I did eight weeks of expensive rehab in a clinic! because I'm genetically superior! because I went to Germany and got my blood washed! - and all those stories give them a sense of 'coherence' and 'agency' and 'meaning' just as valid as his own.