Gez Medinger videos: Part 1 Pacing - Ben Marsh, Part 2 GET - Todd Davenport et al.

Video: Fatigue, Pacing and PEM Management | Lessons from ME/CFS - With Dr Ben Marsh

I know this video has been mentioned on another thread but I think it might have been missed by many and deserves a thread of its own.

In Episode 3 of our expert interviews series, Dr Asad Khan talks to Dr Ben Marsh about his experience of ME/CFS over the last 4 years, and what lessons the Long Covid community can learn about activity management, fatigue and post exertional malaise. Follow Dr Ben Marsh on twitter @bendymarsh

0:00 Introduction
1:17 Life before ME
2:02 When did it change?
2:50 The first 12 months
3:45 When ME kicked in
5:30 The Symptoms
8:53 PEM and its invisibility
11:40 The label of 'pyschosomatic'
19:34 Graded Exercise Therapy
26:29 NICE removal of GET
27:51 PEM / GET risk
29:26 Difficulty of pacing
33:30 Physiology of PEM
38:52 CBT as a treatment
41:12 Summary

 

Episode 8 has just been posted. It covers Pacing, and the promised part 2 looks quite juicy... (you'll have to skip to the end to find out why)

 

Episode 8 very good @Lucibee

looking forward to psrt 2

 

Merged thread

Video: Run-DMC: Pacing vs Graded Exercise Therapy | The Academic Battle - in Reality

"In part 2 of this film about the role of pacing and Long Covid we ask about the role of Graded Exercise Therapy, whether it is safe for patients, the possible role for CBT, and what thoughts the panel have about the biopsycho-social model for chronic illness.

The panel includes:
Prof. Todd Davenport, University of the Pacific, Dept of Physical Therapy
Sue Pemberton, Specialist Occupational Therapist - Yorkshire Fatigue Clinic
Darren Brown, Clinical Academic Physiotherapist - NHS
Ruth Ainley, Clinical Specialist Respiratory Therapist"

Code:

https://youtu.be/_rvwe8HAXqE

 

In theory I ought to be very positive about this video, it is addressing constructively many important issues not least PEM or post exertion symptom exacerbation, and the dangers of GET. Also I feel bad about criticising what is a well communicated position, representing a massive step forward in understanding the care of both people with ME and people with Long Covid displaying similar symptoms.

However I am left feeling uncomfortable:

• The video seems to skirt round stating clearly that repeated post exertion symptom exacerbation for some at least can cause a deterioration in their condition which may be permanent
• The speakers word everything in a positive way, presenting their stabilisation as a stage in rehabilitation, which could lead the audience to assume that for everyone it will be part of ongoing improvement and everyone can reasonably expect to ultimately resume normal life, return to work, etc
• Though the video talks about steps, about remaining within current activity limits, it does not make it clear that we have no way of knowing what will be the pattern for different individuals: some will experience ongoing improvement, some will improve through good activity management in these incremental steps but only to a fixed ceiling, some will get worse regardless of what they do, for some improvement resulting from activity management is not necessarily permanent and relapse is an ongoing risk/danger, some wil experience regular cycles of relapse and remission independent of how well they manage their activity, etc.

Obviously this approach is essential to minimise the negative impact of ME or Long Covid on your life and to try to stabilise your condition, however for some stabilisation will not happen. Further, though I agree with the assumption that good pacing sets up the best conditions for any spontaneous recovery to occur, this remains an assumption. I worry that it skirts over our current ignorance, that we can not even give approximate percentages as to the proportion showing different patterns of recovery/stabilisation/deterioration.

While any medical management should allow the support of those that improve and are ultimately able to return to something resembling a normal life, it should also allow the support of those that will never return to work and will require ongoing support for daily living activities.

The risk of this positivity is that it continues to ignore those with very severe conditions, focussing on rather on the needs of those with mild to moderate impairment, and allows people (patients and clinicians) to potentially develop unrealistic expectations.

 

The 'dysregulation' model Sue Pemberton talks about & which is detailed on her Yorkshire Fatigue clinic website here... theory-model-nov-2020_[9279]-12628.pdf (yorkshirefatigueclinic.co.uk) sounds remarkably like the Hyland Model discussed here on this thread "Body Reprogramming: Patient guide for recovery using the Hyland model" | Science for ME (s4me.info)

No strength to say more, but i'm uncomfortable with it.

 

Agree @Peter Trewhitt

 

I listened to a little bit but don't manage audio very well......

Like @Peter Trewhitt, I am loathe to criticise something which is miles better than so much of what's gone before.

I can understand they may be trying to address a wide audience with a large variation in severity.

However, we still do not have evidence for some of the things being stated with such confidence, in my view.

One of the problems for me is the assumption that PEM is all there is to it. If you haven't got symptoms of PEM then there's no risk. We don't really know what PEM is or what causes it or why it is sometimes instant and at others delayed.

We don't know if cumulative damage is being caused even if we don't actually trigger PEM symptoms. PEM could be far downstream of the problem. For some, probably a minority, activity could well be crossing an invisible threshold that causes long term deterioration.

The problem is that minority is also the group that carries the worst disease burden.

There is a risk that optimizing treatment for the many, the milder cases, we may be throwing the sickest under the bus.

 

I get the strong impression that therapists just find it too hard to let go of the idea that they know what to advise - when nobody does.

As far as I can see all that needs to be said to patients is:
1. Exercise is not going to make you better and may make you worse.
2. Once you ARE better exercise may be fine but take it very carefully to begin with and do not push it.

I think Sue Pemberton got closest to saying that, nearly.

 

Why is it with ME and presumably now Long Covid even when people start to get it right they still get it wrong?

 

I suspect they may be unable to imagine that people can be left severely disabled for the rest of their lives, and they want to be encouraging.

 

I think people have unrealistic hopes about being able to control the trajectory of the illness with some treatment approach, be it pacing or something else.

Pacing is fine but let's not have it take the place of GET with the same false promises of improvement and recovery.

I don't like the idea of finding a stable baseline either. My observation is that doing too much results in a more fluctuating symptom pattern and doing less reduces fluctuations but I cannot eliminate them with the right behaviour. How much I'm able to do changes over time. So there is no stable baseline and the person cannot find it. All they can do is adapt to the ever changing illness severity. And that's the recommendation that "finding a stable baseline" should be replaced with.

The idea of a stable baseline is I think a component of the incorrect GET model which assumes that no illness is present.

 

You have laid it out very well, Trish. To have had this knowledge in the early days of my ME would have made a big difference.

Nowadays I watch what I am doing with a heart monitor which helps me know when to rest and is a valuable tool. When I started in was in some groups about it with many of the members being new patients using that and pacing. To my surprise many of them thought of it as a treatment, rather than a way of managing as best you can.

Some of them were very upset when they had flare ups because they had been so meticulous. New patients have to be told that baseline varies from day to day and all we can do is help our bodies have as good a chance of fighting the disease as we can.

ME is a disease of broken cellular energy metabolism. We can do our best to minimise our energy requirements to keep the damage to a minimum but our bodies will heal themselves or not.

We have so little knowledge of the newly ill that I don't know if recovery is possible or if we just find a way to live with our limitations like well controlled diabetes.

We don't know how many actually have ME rather than a time limited post viral but the same regime will help both.