The feasibility of the intervention was deemed to be low with poor recruitment and retention being major limiting factors. From an estimated 11,000 people living with ME/CFS in South Australia [
46], only 15 were assigned an intervention over a 17-month period.
Who could have guessed that it would be difficult to find people that wanted to risk harming themselves.
Recruitment may have been negatively impacted by a small but vocal number of people in the ME/CFS community spreading misinformation about the study via social media and patient support groups. The motive of these individuals was not known although their messaging insisted that (1) physical activity is harmful, and (2) research funds should only be allocated to projects that directly seek to understand the pathological mechanisms and lead to an eventual cure. Although the latter point is entirely understandable, the researchers and stakeholder advisory group members believed the desire to maximise the quality of life for those already suffering from such a debilitating disease is also important, and worthy of research investment.
How nice that they take the time to slander patients as well.
It completely ignores that fact that excessive physical activity actually is harmful for pwME/CFS, and they seem to be under the impression that the intention to help is in itself enough to warrant a study. Their saviour complex is showing.
The extensive testing protocols and high staff input to monitor and support participants poses challenges for feasibility and implementation. The study design evolved from an extensive stakeholder and consumer consultation process to tackle important issues (barriers) including access and safety. The resulting intervention was home-based (increasing access and reducing burden to travel for supervision), deliberately conservative in exercise prescription parameters and progressions to ensure safety and acceptability and, included intensive contact with research support staff. Based on participant feedback, it is unlikely a ‘light-touch’ version, with less support from suitably qualified practitioners (exercise physiologists in this case) would be as acceptable.
This stands in stark contrast to the app approach that certain people are pushing for..
A recent national survey of people living with ME/CFS reported an appropriate health practitioner who understood the condition was key to them trusting and taking on physical activity advice (unpublished data).
Researching how to better gaslight patients..
Future physical activity interventions should consider including a suitable exercise professional who is competent to work with people living with ME/CFS.
No. Future physical activity interventions should not be trialed at all. It’s still useful learning for other interventions.
A concern for people living with ME/CFS is that physical activity may exacerbate symptoms, hence, many are reluctant to engage in physical activity [
5]. Eight adverse events were related to the intervention with the majority (n=6) being related to the testing procedures and not the exercise. There were two exercise-related events, one participant experienced post-exertional malaise that was well managed with activity modification, and the other experienced upper limb pain that resulted in a cessation of the gameplay for three days before controlled resumption with no further incident. Whilst the rate of adverse events in the present study is consistent (when applying the same metric) with other clinical populations [
47], [
48], [
49], due to the small sample size in this study, it is unclear if this rate, and the type of adverse events reflect the wider ME/CFS population.
Nevertheless, the data give an indication that self-managed physical activity can be safe.
No, that is not what the data indicates. It indicated that self-managed physical activity can be safe for people that already believe it can be safe, and that already do quite a lot. There is absolutely no basis for making more generalised statements.
When baseline physical activity levels (
Supplementary File 5) were explored, surprisingly, the majority of participants (93 %) were already meeting national recommended physical activity guidelines [
50]. This suggests most participants underestimated their activity levels (inclusion criteria: self-reported not meeting activity guidelines). Future studies with larger samples should explore the physical activity benefits of such interventions for the most inactive vs. active participants in the cohort.
Again, it’s completely delusional to suggest more activity studies.
Sampling issues should be considered when interpreting these findings. The small sample is representative of a subset of people suffering ME/CFS, those people living in the community who were well enough to be physically active, able to contemplate a physical activity intervention and to attend a university for testing procedures. People who were willing to enrol in the study may have had a certain level of skill or preference to active videogaming.
This wording speaks volumes about the authors view of ME/CFS patients. It has absolutely nothing to do with the ability to «contemplate a physical activity intervention», and everything to do with most pwME/CFS simply being physically unable to participate in a safe manner.
The present study did not explore within-person variability (e.g., daily changes in fatigue) which may influence physical activity engagement and behaviour [
51]. This is particularly relevant as individuals may have inconsistent capacity to participate in daily tasks, including active video gaming. Consequently, the lack of change observed at the group level may in-fact mask meaningful intra-individual responses. Future studies should consider incorporating within-person assessments, such as ecological momentary assessment to track fatigue symptoms alongside activity, which has been reported as feasible in other clinical cohorts [
52].
Openly admitting to wanting to go fishing, and displaying a complete lack of understanding of how trials work. If there is no group level differences, there is no reason to believe that the intervention
caused any of the in-person changes that might have been.
Conclusions
This pilot study demonstrated the acceptability but not the feasibility of a symptom-contingent pacing monitored AVG intervention in this cohort of people living with ME/CFS. Future research should consider avenues for less resource intensive and burdensome physical activity interventions that prioritises support and safety with the need for sustainable and scalable interventions.
There is absolutely no basis for future activity research. It has flunked once more. It’s time to stop beating the poor horse.
Nevertheless, the acceptability combined with the low rate of adverse events suggests that physical activity can be managed safely by some people living with ME/CFS.
Finishing with another telling description of pwME/CFS as someone that doesn’t know how to manage their condition or take care of themselves physically.
www.degruyterbrill.com
, Kade Davison , Ashleigh E. Smith , Alexandra Wade , Katie I. Trenorden and Katia E. Ferrar
