Professor Gerd Kvale on Long Covid

[Kalliope]

Spotted this today on Twitter. It's the professor and psychologist Gerd Kvale sharing her opinions about Long Covid.

Gerd Kvale has developed a fast version of CBT for anxiety and OCD, with good results in clinical trials. She has also published a paper with psychiatrist Bjarte Stubhaug (who treats ME with mindfulness etc) on his CBT version for ME.

TIME Magazine wrote about the treatment a few years ago:
“Patients say it’s hard work and one of the most challenging weeks of their life,” Kvale says. “But the change that they experience through these four days is sort of magic and life-changing.”

There's a center in Norway treating people with the Kvale-CBT called Helse i Hardanger. They have decided that the treatment works for back pain, diabetes, chronic obstructive pulmonary disease and Long Covid too.

One of the doctors working there, psychiatrist Marthe Jürgensen, recovered from ME with the help of Dr. Stubhaug. She used to be the deputy of Recovery Norge and is part of the COFFI network.

Here's a quick translation of what Gerd Kvale says about LC in a newspaper:

Gerd Kvale, professor at the Universitetet in Bergen and leader of a long Covid treatment at Helse i Hardanger explains how the body can respond after a viral infection as covid:

- When we get ill, the body's most important task is to make sure we don't get worse

- The alarm system in our body helps us to behave in a way that gives the biological defence
peace to work. The biological defence can be fever, pain and discomfort.

- In order for the biological defence to be effective, it's important that the alarm goes off one time too many, rather than missing a time.

- This means that the alarm often goes off after an infection is over.

- In this phase we often see that those affected try to find explanations to the variations of the ailments, and naturally tries to do things to stop them deteriorating. For instance by avoiding situations they know - or are afraid of - may lead to increased symptoms.

- It may also be that the patient is trying to gather energy in order to be able to do something they really want to.

- Sometimes - when they're really fed up by the ailments - they push on with activities completely out of range of what's feasible for them to do

- There's a number of different things one can do to try to gain control of the symptoms. The problem is that for each time the alarm goes off, you give feedback to the biological system that the alarm was accurate.

- This increases the probability both for the alarm to become sensitised - in other words go off faster - and generalised - in other words goes off in more and more situations.

- When you are to break the patters of symptoms regulation it's wise to do this systematically and with guidance - not just push on with increased activity - or continue with the patterns that's become ingrained. Individualised guidance is key.

source:

 

[Kitty]

It'll be drive-thru CBT next.

 

[Trish]

Blink and you miss it CBT.
Subliminal CBT.
CBT on an app that you play during sleep.

 

[rvallee]

Sometimes - when they're really fed up by the ailments - they push on with activities completely out of range of what's feasible for them to do

And why would it not be feasible to walk across a room or brush our teeth if there's nothing wrong with us? Ridiculous nonsense. They're not talking about the acute phase here, it can be long after and when they all insist that there's nothing wrong so there should be no reason why simple things are not feasible for us. It makes zero sense, this is complete unreason.

 

[Hutan]

It's not quite zero sense, I can see why they might think that. I suspect many of us thought, when we first weren't bouncing back from an infection like we expected to, that we just needed to ease ourselves into things, and tried to do that. And failed. Often we've tried repeatedly, and often we haven't done it on our own, we've worked with exercise experts.

But, this idea, when held by health practitioners, does come from a place of arrogance. It assumes we haven't tried what they are suggesting, or that we are so stupid that we couldn't do it properly. It assumes that these experts hold some magic key. But we've seen the GetSet Julie schedule, read the Pace therapist manual and the BACME twaddle. Many of us have spent time with the CBT practitioners and watched the videos of people who claim to know how to cure ME/CFS. There's no magic there.

And the idea seems to assume that we have never had, and overcome, an illness before. Some members have had cancer and recovered, all of us have recovered from some sort of infectious illness. We each have a history of recovering. So, it seems odd, if all we need to do is just that right amount of activity, not too much and not too little, that a relatively mild infection could cause this sort of intractable system breakdown.

Why, if it's just a matter of how we respond to a period of convalescence, does the phenomenon occur after some sorts of infections, but not others? Why are the recovery rates in trials of CBT and GET so rubbish?

 

[JemPD]

It's not quite zero sense, I can see why they might think that. I suspect many of us thought, when we first weren't bouncing back from an infection like we expected to, that we just needed to ease ourselves into things, and tried to do that. And failed. Often we've tried repeatedly, and often we haven't done it on our own, we've worked with exercise experts.

But, this idea, when held by health practitioners, does come from a place of arrogance. It assumes we haven't tried what they are suggesting, or that we are so stupid that we couldn't do it properly. It assumes that these experts hold some magic key. But we've seen the GetSet Julie schedule, read the Pace therapist manual and the BACME twaddle. Many of us have spent time with the CBT practitioners and watched the videos of people who claim to know how to cure ME/CFS. There's no magic there.

And the idea seems to assume that we have never had, and overcome, an illness before. Some members have had cancer and recovered, all of us have recovered from some sort of infectious illness. We each have a history of recovering. So, it seems odd, if all we need to do is just that right amount of activity, not too much and not too little, that a relatively mild infection could cause this sort of intractable system breakdown.

Why, if it's just a matter of how we respond to a period of convalescence, does the phenomenon occur after some sorts of infections, but not others? Why are the recovery rates in trials of CBT and GET so rubbish?

Indeed.

When i first saw this thread title i thought it was about GERD - ie Gastro Esophageal Reflux Disease.

which is amusing to me, since their ideas are all regurgitated ideas that have already been thoroughly masticated, refluxed and spat out.

 

[Sean]

And the idea seems to assume that we have never had, and overcome, an illness before. Some members have had cancer and recovered, all of us have recovered from some sort of infectious illness.

Or the whole range of normal limitations and disorders humans have to deal with.

For example, I have had normal age-related mild osteoarthritis in the hands and hips for a decade or so. It has never been a big problem for me overall. I know what to do and how to manage it. The medical advice for it has been useful and easy enough to implement and get results from. While I would prefer not to have it I don't find it particularly distressing or more than a minor background issue in my life. (So far, of course. It is a progressive condition, so it will likely get worse as I get older.)

Similar for minor lower back issues.

But apparently I am a complete moron and pathetic cry baby, and worse, when it comes to managing ME, despite forty years of experience living with it, and more than a passing acquaintance with the formal literature about it.

 

[Sid]

- In this phase we often see that those affected try to find explanations to the variations of the ailments, and naturally tries to do things to stop them deteriorating. For instance by avoiding situations they know - or are afraid of - may lead to increased symptoms.

- It may also be that the patient is trying to gather energy in order to be able to do something they really want to.

- Sometimes - when they're really fed up by the ailments - they push on with activities completely out of range of what's feasible for them to do

You’re doing too little AND too much.

 

[RedFox]

- In this phase we often see that those affected try to find explanations to the variations of the ailments, and naturally tries to do things to stop them deteriorating. For instance by avoiding situations they know - or are afraid of - may lead to increased symptoms.

- It may also be that the patient is trying to gather energy in order to be able to do something they really want to.

- Sometimes - when they're really fed up by the ailments - they push on with activities completely out of range of what's feasible for them to do

This describes my experience perfectly, but unfortunately, she uses this as evidence ME is mental. A better model is that of oscillation of a dynamical system. When there's a delay between the input and output of a system, oscillation emerges. We see this in springs, where the the force returning the spring is delayed relative to the spring's motion, electronic oscillators, poorly-tuned governors, etc. When you have ME, your sense of energy becomes deranged because there's a delayed effect (PEM). The delay itself leads to oscillations. Your emotions play no part in this, contrary to the BPS model. You are less incapacitated, you do something, but your symptoms don't stop you. Then the PEM hits 24 hours later, and you're incapacitated, so you rest. When you become more functional again, the cycle repeats. In essence, you have become an unstable dynamical system.

 

[Sean]

You’re doing too little AND too much.

The Goldilocks Model, in which only the therapist knows how much is Just Right.