Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

From: Dr. Marc-Alexander Fluks

Source: Teesside University
Date: February 19, 2021 (version august 2020)
URL:
https://research.tees.ac.uk/ws/portalfiles/portal/25523843/John_Franklin_PhD_Thesis.pdf
Ref:
https://research.tees.ac.uk/en/stud...lationship-between-physical-activity-and-myal


Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
--------------------------------------------------------------------
John Derek Franklin
- School of Health and Life Sciences, Teesside University, U.K.


Abstract

Background
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a
debilitating illness characterised by severe fatigue which causes a
significant reduction in levels of activity. Post exertional malaise
(PEM), unrefreshing sleep, cognitive impairment, and/ or orthostatic
intolerance are all key symptoms of the illness. PEM is described as a
unique attribute of ME/CFS which results in significant worsening of
symptoms following a physiological, cognitive, or emotional stressor.
Due to this, those with ME/CFS are required to manage their activity
levels to control PEM symptoms. Nevertheless, there is some evidence
that graded exercise interventions could improve symptoms in ME/CFS
although this is contested with some arguing that graded exercise
programmes cause a worsening of symptoms. The aim of this thesis is to
explore the relationship between ME/CFS and physical activity.

Methods and Findings
The first objective was to assess if people with ME/CFS had a reduced
peak oxygen uptake (VO2peak) compared to apparently healthy controls as
this may increase their risk of all-cause mortality. A meta-analysis of
32 cross-sectional studies demonstrated that pooled mean VO2peak was 5.2
(95%CI 3.8 to 6.6) ml.kg−1min−1 lower in people ME/CFS vs. healthy
controls. This study provided evidence that ME/CFS patients have a
substantially reduced VO2peak compared to controls which could increase
their risk of all-cause mortality. However, there was insufficient data
to ascertain the impact of peak exercise testing on ME/CFS symptoms in
the days following testing.

A meta-analysis was conducted on studies which conducted repeat maximal
exercise tests separated by 24h. The difference in work rate (WR) at
anaerobic threshold (AT) (n=4) was -20.64 (95%CI -40.95 to -0.33)W in
favour of controls, demonstrating that people with ME/CFS had a reduced
power output at AT in the second of the two tests compared to apparently
healthy controls. The effect size for this difference was large (d =
-0.95) providing evidence that WR at AT effectively discriminates
between ME/CFS and controls. These findings provide evidence of an
objective and measurable response to repeat high intensity exercise
which provides some evidence of a possible physiological element of the
illness and may provide a potential objective marker in future studies.

In light of this evidence it was important to assess the effectiveness
of exercise interventions in managing symptoms of fatigue in ME/CFS.
Meta-analysis of studies assessing the effectiveness of graded exercise
demonstrated that the pooled percentage difference for the overall
effect (n=10) was -13.4% (95%CI -24.2 to -2.6) in favour of
intervention. This indicates that exercise results in a clinically
relevant reduction in fatigue. However, when studies using the Oxford
Criteria case definition were removed from the analysis (n=5) the
percentage difference reduced to -9% (95%CI -21.8 to -3.7). The findings
indicate a degree of uncertainty around the effectiveness of exercise
programmes in ME/CFS which would support evidence from survey data that
graded exercise programmes may only be effective for a limited number of
people with ME/CFS.

To explore this in more detail, in-depth interviews were conducted with
six people with ME/CFS using an interpretive phenomenological analysis.
Participants described feeling as though they are losing themselves and
feel a lack of legitimacy about the hidden nature of the illness. Those
with ME/CFS described 'battling' their illness which is not commonly
cited in other chronic health conditions. Those with ME/CFS described
wanting to be more active although this is contrasted with the
unpredictability of the illness. People with ME/CFS described a desire
for others to empathise and demonstrate understanding of their illness.
Nevertheless, there was some evidence that when people with ME/CFS were
able to engage in activities which had personal meaning this resulted in
improvement in mood. Evidence indicated the potential for an activity
management strategy in ME/CFS.

A new form a graduated physical activity was considered for people with
ME/CFS. The proposed intervention is designed to be flexible in
intensity and duration depending on the symptom profile of the
individual and allow individuals to choose from a number of possible
activities.

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(c) 2021 Teesside University

 

I am assuming this is a press release or formal announcement relating to John Derek Franklin being awarded his doctorate by Teesside University on this topic with the additional link to his actual thesis.

 

No, this was just a post by a patient to an ME/CFS list. Marc goes to a lot of trouble searching for news so I like to acknowledge him.

 

We're normal human beings? Well, fancy that.

ETA: Sorry, feeling sleep deprived and grumpy today!

 

"New"

It just never ends, does it? Why do people think superficial understanding of an issue and giving it a few minutes' attention is good enough to deliver something useful?

 

Sorry @Dolphin if it seemed I was criticising the creation of this thread, it was not my intention. It is important we share such information. Indeed thank you for posting this.

I was initially confused by what I was reading in terms of the origin of the abstract itself, and trying to psych myself up to looking at the full 400+ pages of the thesis itself so it took me a moment to recognise that you were sharing what Dr Fluks had shared which was originally released through Teesside University. Presumably this will/has resulted in research article(s) (a very cursory search for Dr Franklin, did not alert me to any articles, but I need to look again when I am more with it.)

Finding a way to distinguish between those that recover from post viral conditions and those that do not would be valuable, and be able to say if for those that do recover if exercise helps or if the anecdotal reports of this are a fortuitous coincidence would be good. Presumably this would also provide confirmation of whether or not PEM itself is a sufficient predictor of those who will not recover and for whom inappropriate exercise will be harmful or if there are other factors involved.

However from the abstract I worry that we will not see an answer to these questions rather just an attempt at individualised GET or GET-lite, but this is unfairly prejudging something I have not yet read.

 

This is a description of post exertional fatigue which is common to many illnesses. It annoys me because it makes it sound as if we are whiny by claiming to be unique when we are not.

The uniqueness of ME is that activity (only stressors in a very particular meaning of the word) causes worsening of symptoms which often don't appear for days and there is an unusually prolonged recovery. Exertion also causes immune symptoms such as sore throats and enlarged glands which are not common with other diseases.

He did not take into account the methodological problems with GET studies, though it is good that the Oxford definition was seen as a problem.

This is seriously dodgy. If he is familiar with the surveys he surely knows that the problem is the number of people who claim to be harmed by GET, not the limited number who say it is effective. You cannot put forward any form of graduated exercise treatment until the problem of the massive number of people who claim to have been harmed by such a treatment has been resolved.

The answer to thalidomide was not to give a lower dose to pregnant women. Because of these surveys, all exercise treatments for ME, and, in my opinion, for any post viral disease, must be embargoed until it is discovered why some people are harmed.

 

More information on Dr John Franklin

Teeside University Website
https://research.tees.ac.uk/en/persons/john-franklin-2

Publication

Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis

• December 2018
• International Journal of Sports Medicine 40(2)

DOI:10.1055/a-0802-9175

https://www.researchgate.net/public...romeMyalgic_Encephalomyelitis_A_Meta-Analysis

Which presumably arose from the literature review stage of his PhD thesis.

 

Discussed here, Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis. Franklin et al., 2018.

 

Concerning concept: still hanging onto GET, "let's just make it custom, or GET Lite."

Liked your comparison to thalidomide, @Mithriel.

Will there never be an end to trying to force very ill people, people who become sicker with GET into this regimented control?

Well, I do know the answer...

 

GET was always sold as being individualized. Not true but they've been saying this for decades.

But it's not as if any of this matters, they can say something for decades, pretend otherwise and nobody cares. Which is why they can lie and fail for decades. Of all the failures, the simple inability to care, to basic professionalism, the so-called "duty" of care, will always be the worst flaw. It's just plain dereliction of duty, a simple pathetic "not my job, not my problem".

 

[added - in summary my understanding is Franklin is proposing an actual BPS model of ME involving all three components, where currently restricted activity undermines our sense of self worth which in turn limits what we are able to achieve, this should be managed by an activity programme focusing on self-validating activities which can then be gradually increased to a level considerably higher than the start point, but ultimately restricted by a ceiling dictated by the biological component. ]

I have not yet read the entire thesis cover to cover, but it seems the author is trying to develop a genuine BPS model of ME that does not just say it is only psychological, he does manage a reasonable critique of the previous CBT/GET research, and accepts there is a biomedical component which he discusses mainly in terms of peak oxygen uptake. However he seems to accept unquestioningly the research that identifies all sorts of psychological and behaviour issues in ME, such as depression or being risk averse, as contributing to limiting people’s daily activity levels.

Then drawing on research not directly relating to ME, but to other primarily psychological factors he presents all sorts of psycho-behavioural considerations which impact on people’s interest (or willingness) in exercising or undertaking activity.

My understanding so far is his own original research is based on in-depth interviews with six patients and for him the central problem of ME to be addressed is that restricted activity impinges on people’s self identity and sense of self worth, so he argues that the main focus of intervention should be enabling people to undertake activity that will validated them as people and improve their sense of self worth, he argues that this psychological boost will then enable people to do more than they can with just plain boring pacing and activity management.

He then seems to skim over the potential of treating the ‘biological’ component and produces a model of intervention that is a sort of activity management aimed at getting people to undertake activities they want to do and which will validate their self worth, and enable them in gradual steps increase the total activity. At this point I got confused and will need to reread the relevant sections, so I am not sure if he undertook a pilot study to investigate the possibility of evaluating such a self-validating activity management programme or if he just outlined the possible design of such a study. What confused me was I have failed so far to find the results of his pilot.

He did conclude that his self validating activity programme would enable patients to increase their daily activity significantly more than possible with just ordinary pacing, but that at some point there would be a ceiling related to the presumed biological component. So he was presenting a programme to make people happier and more productive though falling short of actually returning us to premorbid functioning. As I say I have struggled to integrate the full four hundred pages within my current cognitive constraints, even on several attempts, so I could still be doing the author a disservice.

My concern is despite the substantial effort put in by the author, he still does not understand the breadth of our symptoms and the very real problems relating to exertion and to PEM, that he unquestioning seeks to squeeze ME into a BPS model without understanding the range and restrictions of our biological issues, and that he has an unquestioning belief that we do less than we sustainably could because of our psychological issues.

Personally I would be happy to only undertake self validating and pleasurable activities if Dr Franklin could suggest a source of funding for a cook/house keeper, secretary/admin assistant and gardener/driver. I could perhaps get away with three domestic staff as long as they were willing to take on several roles and one could take on the admin/management of their fellow employees. Even then there is the problem on those days when the minimum functioning required for sustaining life, ie eating, going to the toilet and on a good day showering or (but not both) brushing my teeth are sufficient to trigger PEM.

My initial impression is that it is a strange mixture of both serious scientific enquiry and prejudiced speculation.

[corrected some typos]

 

Has anyone trialled a "give money to patients" study. Basically, whatever money they'd spend on therapists handed directly to patients?

 

Yea when you look at the amount of money spent on maintaining healthy, useful people (OK not to people with ME but potentially others) to "treat" people with ME/CFS - for the interventions that don't work/are harmful you'd be better employed spending that on maintaining them in the community!
The other thing is that the money could be put into research.

[EDITED] Also, since those who might benefit from a physiotherapist can't access them (waiting lists for NHS in UK) why allocate them to diseases where there is no evidence they are beneficial - like ME/CFS?