Da mein #mecfs mich gerade wieder ans Bett fesselt fragte ich telefonisch in einer Praxis an, ob sie mir den Befund einer Untersuchung zuschicken könnten. Das tun sie nicht. Patienten holen die Befunde ab, denn es kostet Porto und ich hätte keine Briefmarke für den Fall hinterlegt.
Danke, das hatte mir auch niemand gesagt. Ich kann auch ohne Befund im Bett liegen bleiben!
Ist das nicht peinlich?
#gesundheitssystem #Pleite #porto #arztpraxis #Arztpraxen #pwme #pwmecfs #Behandlung
@tinoeberl zeichne ich natürlich mit und hoffentlich viele Andere auch.
Jedoch, falls es Gehör und Umsetzung findet, was dann? Auch unter den Experten fürs Gericht, auf die sich ein Richter stützen muss, finden sich Doktors die genau das tun. :-((
Aber es ist immerhin ein Anfang...
I think I want one...
We all know that NIH funds ME/CFS abysmally low compared to all other chronic illnesses. But NIH isn’t even doing what they could with the funds they do have. The recent NIH Annual Meeting on ME/CFS was all just a big PR stunt to try to tell the world they are accomplishing something when they are not…
#iWatch #app #MEcfs #pacing
Just discovered a small app in the appstore, developed by a NZ developer @ddp With no data tracking!
Adds threshold for heart rate, steps, distance, calories expended etc. looks like it would be helpful to #PWmecfs who used an iWatch.
However, on searching #WatchME, I found there is another, different app with the same name, which runs on Windows.
https://apps.apple.com/us/app/watchme/id1583153009
@ahimsa_pdx @tomkindlon @krazykitty ICYMI
Pity an iWatch is so pricey 🤭
For people with ME/CFS. This app helps you to pace and stay within your capacity envelope. Use your watch and phone to monitor your daily heart rate, steps and distance. Integrated with HealthKit. This app uses the Health app to monitor resting, average and maximum heart rates, heart rate variab…
I have just discovered there is a brilliant #pacing app for #FitBit, to help #pwMECFS keep under their anaerobic threshold. I believe it is developed by @allyann, along with a Resting Heart Rate app.
Knowing how unreliable FitBit devices are (of 6 I’ve known about in the last 2-3 years, none lasted longer than 6mths, before requiring replacement), I really hope someone can make apps like this for #Garmin. It would be very much appreciated by a wide community.
#PEM #MECFS #LongCovid
https://gallery.fitbit.com/details/240bd0c9-5c5a-4dc3-9a1b-b738c26c5143
Heart Rate Pacing is a technique used to stay within ones energy reserves. The anaerobic threshold (AT) is the heart rate at which aerobic energy surges. The threshold is often around about 60% of a ones maximum heart rate, though each person is different and an individual's threshold may vary from day to day or within a day. (Note: Maximum heart rate is 220 minus ones age. For a 50 year old, 60% of maximum heart rate is (220 - 50) x 0.6 = 102 bpm.) Features: * Changes colour to indicate: - Resting - (REST) Lavender - Recovery (RECOVER) - Green (RHR + 10%) - Exertion (EXERT) - Orange (RHR + 20%) - Anaerobic Threshold (AT) - Red ((220-50)x0.6) * Set an alert based on: - reaching Anaerobic Threshold Zone, or - custom set Maximum Heart Rate. * Set the Anaerobic Threshold Tolerance from 0.6 (default) to 0.5 if desired. * Set a custom interval between alerts (15 secs default). * Displays 12/24 hour clock based on user settings in Fitbit profile.
I have just donated to David Tuller.
I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years
Donate link: https://bit.ly/40kHhkY
@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome
Bruno
MEActNOW
Darin 🌎☮️ 🏳️🌈🇨🇦🇺🇸 ❤️🥦 🚀🪐
Kirsty's Old Account
One Fetchy Friend
Tom Kindlon
Irish ME/CFS Association
