#mecfs #LongCovid

Wearable devices measuring heart rate, and heart rate variability are helpful for managing #pem in people with #energylimitingconditions

https://madevisible.podbean.com/e/14-wearable-technology-and-patient-led-innovation-with-dr-david-putrino/

The Visible Band 2.0, or Garmin devices seem to be the most popular products for research and treatment, but have ethical drawbacks and privacy concerns (subscriptions, vulnerable to enshittification, repair hostile).
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#14. Wearable technology and patient-led innovation with Dr. David Putrino | Make Visible: Complex Chronic Illness Explored

Data gathered from wearable technology can warn of impending symptom exacerbation in complex chronic illness a new study has found. In this week’s episode Dr. David Putrino discusses the findings.  He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart rate can be used to predict a crash.  Analyzing more than 55,000 readings over 1000 days they were able to see changes in the autonomic nervous system of contributors using this biometric data.  The largest study of its kind, these findings have the potential to provide the basis for individualised care strategies for this enormous cohort of patients. Here we discuss the function and dysfunction of the autonomic nervous system.  Dr. Putrino gives us an overview of heart rate variability, the way in which it fluctuates, what its readings can determine about our health and ways in which these can be influenced. We talk through the power of breathwork including two of Dr Putrino’s studies – on resonant breathing and hypocapnia – showing the way in which breathing impacts our physiology but determining that we have innate power to influence our health. As Director of Rehabilitation Innovation Mount Sinai Health, Dr. Putrino‘s focus is on real-world solutions for this patient cohort. In a world where new drug approval takes 10 years and technologies in this field can take 17 years to reach market, his aim is to bring patients tangible treatments and protocols in a practical timeframe. Currently involved in clinical trials for rapamycin and vagal nerve stimulation, Dr. Putrino endeavours to re-purpose drugs and technologies that are already approved in other situations to create personalised strategies for this engaged cohort.   Make Visible @visible_health @visible.health

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Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Screenshot from latest Science for ME weekly update

#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots

Overloaded week continues to be overloaded.
And I'm dreading next week as it should have been preceded by plenty of rest this week.
It's unlikely I'll escape a fibromyalgia flare but I'm hoping I have enough coffee to get through the 'really must do' events first. Those are the workshops, panels and critical meetings.

My urgent to do list is in hold ...

#EnergyLimitingConditions

It's been a long time since I had two consecutive days with no online meetings or in-person contact. Tomorrow will make it three days unless something changes.
It even rained so I didn't need to get dressed to water the tubs on the patio.
After a busy few weeks this is much needed off time.

#EnergyLimitingConditions

My #spoonie pals on Mastodon, I've gotten a bit of flak for using this term here, from presumably able-bodied folks. I'm interested in talking to people with #LongCovid #ME #fibromyalgia and other #ChronicIlnnesses and #EnergyLimitingConditions--originally I was talking about gardening, too. Do you use spoon theory or another metaphor? [What I live with isn't just 'old age' or 'sickness'--its #ableism to imply that we are just one thing or another to fit a convenient, received notion.]

3 weeks into my 'month off' and I felt like working on my business today, I did 45 minutes client work this morning, had a rest, walked the dogs with my daughter, had another rest, and did 45 minutes work on my business this afternoon. Now I'm ready for bed and it's only 6pm. 🥱

#MEcfs #ChronicIllness #EnergyLimitingConditions #PEM #VirtualAssistantUK

The only people who truly 'get' what it's like to live with chronic illness are those who also live with chronic illness.

#ChronicIllness #InvisibleIllness #ChronicPain #MEcfs #MEcfsAwareness #EnergyLimitingConditions

So this is what I have 'planned' today:

📖 Read my true crime magazine
🐕 Take the dog for a stroll in the sunshine
🧘‍♀️ Guided relaxation
🎨 Do some foil scratch art
📚 Read my non-fiction book
📺 Watch a documentary

Tomorrow will be more of the same, plus I'll be visiting my dad because I haven't seen him since Friday, and hopefully meeting up with my daughter in her lunchbreak to walk our dogs together 💙

#MEcfs #MEawareness #EnergyLimitingConditions #chronicillness
#invisibleillness

Having a much-needed 'Bed Day' today.
Brain is generally a little fuzzy but insisting on trying to work - yet I can't focus long enough to work my way through the 3 sets of legal/finance docs waiting for me. I need to ignore them rather than mess up.
#ELC
#EnergyLimitingConditions