August 21, 2020 IACFS/ME Virtual Conference

ME/CFS Outcome
Dr. Fred Friedberg from Stonybrook University in New York (https://www.stonybrook.edu/experts/profile/fred-friedberg) presented an elegant study on why patients get worse and why they get better. His team tested a model of what they thought might make people better or worse. For example, they thought pacing would help and push/crash activity patterns would worsen health. They had people track their activity patterns with an actigraph, complete weekly web diaries of activity patterns and life events and had participants complete a heart rate variability (HRV) measurement weekly for 6 months. HRV is a measure of autonomic nervous system balance.

Surprisingly, the activity pattern did not predict who was better and who was worse at the end of the 6 months. People with higher HRV (better autonomic nervous system balance) did better. The largest predictor of better health was whether people had more frequent “uplifts”. Uplift refers to some pleasurable or meaningful activity. This suggests that identifying activities that are within your energy and financial budget that help you feel happy, loved or worthwhile could improve health. Examples could include phone calls or visits with positive people, finding humor or beauty in life, engaging in creative or meaningful activities - anything you look forward to. And maybe activities which balance autonomic function such as mediation, paced breathing, tai chi or an HRV app like Heartmath may help people improve health (https://www.heartmath.org/) Of course this has to be tested. Many things that seem likely to be true turn out not to work in real life.
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@Jonathan Edwards you were interested in this kind of study, right?

I'm not convinced that making a decision to engage in pleasurable or meaningful activity is going to improve people's health. It could be that an improvement in health allows patients to engage in pleasurable or meaningful activities more than before.

PS: but pleasurable or meaningful activities will improve quality of life.
 
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strategist said:
@Jonathan Edwards you were interested in this kind of study, right?

I'm not convinced that making a decision to engage in pleasurable or meaningful activity is going to improve people's health. It could be that an improvement in health allows patients to engage in pleasurable or meaningful activities more than before.
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Was the paper in any way connected to the makers of the app? Seems odd that they flag only one in particular.
 
adambeyoncelowe said:
Was the paper in any way connected to the makers of the app? Seems odd that they flag only one in particular.
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And that app seems particularly odd.

The institute that sells it says its 'mission' is:
The mission of the HeartMath Institute is to help people bring their physical, mental and emotional systems into balanced alignment with their heart’s intuitive guidance. This unfolds the path for becoming heart-empowered individuals who choose the way of love, which they demonstrate through compassionate care for the well-being of themselves, others and Planet Earth.
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https://www.heartmath.org/about-us/hmi-mission/

Their research:
The Research Center is currently focusing on studying different types of interconnectivity between people and the earth’s magnetic fields. We are following up on a study that involved 1,600 Global Coherence Initiative members that found a number of significant effects of solar and geomagnetic activity on people’s mental functions and emotional states.
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https://www.heartmath.org/research/featured-research/

The scientific advisory board:
https://www.heartmath.org/gci/team/advisory-boards/

:confused:
 
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strategist said:
It could be that an improvement in health allows patients to engage in pleasurable or meaningful activities more than before.
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Obviously. I prefer people who respect the linear passage of time and causality. The mental gymnastics involved are spectacular.

Most people are able to understand a similar scenario with head aches: 1) have head ache 2) don't do much as a result 3) take aspirin / painkiller 4) feel better and 5) be able to do things. It's not step 5 that lead to step 4. I mean come on you really have to work around basic features of reality to be confused by the sequence of events here. Just because we don't have the step 3 doesn't change that the sequence of events cannot fold back spacetime.
 
Violetta Renesca (Nova Southeastern University, USA) presented her work on the effect of a self- management group programme on health status, fatigue severity and self-efficacy in patients with ME/CFS. She outlined the difficulties in the USA of 2.5 million ME/CFS patients with no known cure, many who are bed bound, are have difficulty getting to medical appointments, long distances to travel and limited access to knowledgeable physicians.

Her project was to evaluate the effectiveness of a self-management programme teaching energy conservation, relaxation techniques, healthy eating etc. Four weekly 2 hour sessions were involved. Primary outcome measures were assessed at baseline, at end of course and one-month follow-up. 33 patients were enrolled. Data was collected from self-report, questionnaires and functional capacity scales.
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Average age of participants was 50 and most were somewhat overweight.

At one-month follow-up there was significant positive change in mental fatigue, energy and symptoms. This provides implications for practice change. Self-management educational intervention is clinically effective in reducing the impact of the illness on physical and psychological well-being. It would be useful to be able to reach homebound patients and have involvement of a personal life coach.
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From the Vallings report.

First, I can't politely say what I think about Violetta Renesca's well-meaning efforts to improve the self-efficacy of people with ME/CFS, other than, 'has she not heard of the placebo effect and its influence on subjective outcomes?'

Second, it's a shame that clinicians experienced with ME/CFS like Vallings don't seem to understand, or be willing to call out, the poor science around these sort of treatments that inevitably end up blaming the person with ME/CFS.

Third, why is IACFSME giving this sort of thing a platform?
 
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Ugh. What on earth are IACFS thinking letting this sort of junk have a platform. Haven't they learned anything from the PACE fiasco. And this is in many ways worse - no control group, only 4 sessions over 4 weeks, questionnaire outcomes. Ridiculous.

Is it worth sending in a complaint to the organisers?
 
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