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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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And they don't see the effort of getting organised to go out and don't realise that every step is like walking neck deep in molasses, or how difficult it is to use our brains, that our thought processes aren't functionally normally or see the collapse afterwards. Even on a good day.One of the toughest issues I've found is that because you spend several days "gearing up" for an appointment, your PCP often ends up seeing you on one of your good days, leading them to underestimate the severity of your illness.
I don't see the criteria that was used.
"To find out more, Dr Hodges is completing another trial examining the physiological differences in repeated maximal exercise at 48 hours and 72 hours. “We will be taking blood samples to examine markers of inflammation, blood pressure and heart rate, asking questions about fatigue, and participants will be asked to do simple computer tasks to examine cognition, as well as ultrasound to measure arterial stiffness, and the cycle test to examine anaerobic threshold. All tests will then be repeated at either 48 hours or 72 hours later.”
I think they were diagnosed by Ross Vallings. She used the CDC to diagnose me in 2010. Not sure if she still uses it
Hopefully Ron can soon offer a CPET for cells in a chip.
yes, a chip with a nanoscopic threadmillHopefully Ron can soon offer a CPET for cells in a chip.
We could do circuit training.yes, a chip with a nanoscopic threadmill
We could do circuit training.
I assume this is a pun on the fact that Ron's device measures the electrical resistance of cells, presumably by employing an electric circuit? Very subtle humour @TiredSamWe could do circuit training.
I didn't walk into that treadmill with fear but with hope that I could finally discard the idea that it was "all in my head". And so It was, my body became as able to produce energy as the body of a cardiac patient after 10 minutes of running at maximum speed, and continues to be that way after 24 hours. There's no way the mind can cause that! Sadly, even with the results of that study, people even in my own family can't yet understand my condition and its organic nature. They don't put enough effort in trying to understand what the results sheet actually says, as that would require to understand what a 24hs CPET actually is and what post exertional malaise is. Sad, so sad. People just sees what they want to see.If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.
I'm very intrigued that they found MS patients are apparently less fit than ME patients, but still can repeat their results on the second day. This seems like a way to differentiate one disease from the other, in spite of the big overlap in symptoms.
That was the reaction Workwell researchers had the first time they did it. Then they recalibrated the machines and did it again, with the same results. So they knew they were on to something. The rest is history. Mind you they also decided to use this to test PEM .. which it appears to be good for.I got the impression that the results were so odd that it was thought there was some error. There was never any follow up.
Workwell has commented that the sedentary controls used had a worse fear of exercise.If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.
[my bold]This suggests that even though they were as fit as the healthy controls, post-exertional malaise [the feeling of fatigue] after exercise, shows up by them not being able to achieve the same workload at anaerobic threshold or at their peak
Exactly. Homes in on (what I'm guessing to be a fact - please correct me if I'm wrong!) people with MS not having PEM as a symptom, compared to PwME who do.If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.
I'm very intrigued that they found MS patients are apparently less fit than ME patients, but still can repeat their results on the second day. This seems like a way to differentiate one disease from the other, in spite of the big overlap in symptoms.