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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Why NOT exercise?

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I read somewhere, some time ago, that folk make "working" greyhounds eat a load of tinned tomatoes to stop them from building up too much lactic acid when running...

(I eat tons of tomatoes anyway, tinned and fresh)

I find folk talking really difficult to listen too. They use too many umms and aaahs and "sorry, I didn't mean that"s, they don't use correct grammar.
I get lost trying to take in the meaning of one clause of a sentance... while the speaker is already onto the next part.
I've just given up completely on Dr. Myhill's webinar.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
In second life we have quite a few attendees from time to time who cannot handle spoken communication well. Written is much easier, so even though second life has voice chat, we have gravitated to text chat. Even for those of us who like voice chat, such as me, its easier to use text as we can double check, scroll back etc., and it overcames accents and other issues.

I recently watched a disability advocate speaking in Scotland on youtube. I got about 90% of it, but sometimes it was too hard to follow. Transcripts are very valuable.
 
Messages
1,082
Location
UK
Grrr its so long since i logged in to Second life ive forgot my sign in details lol. I had a headset for that because typing and moving my avatar about used to mess up my brain sometimes o_O
I really should go and check on my little SL house. Someone's probably squatting in it :confused:
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Out of curiosity - What word would you prefer to be used in place of "exercise" for ME patients.

I agree some physio, and "movement" (my preferred word) can be beneficial.

The word "exercise" I feel is totally misleading.

Do you have a better word that could be used?
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Activity.. like that one.

Not sure about "exertion" because like "exercise" it suggests pushing yourself.

I'm guessing Valentijn that your heart rate will be higher than recommended if your activities/movements feel like an exertion? Have you checked?

I would just be worried that put in the hands of an over enthusiastic physio, that "exertion" would be as harmful a word as "exercise".

I guess it's all academic anyway, as the patient population isn't much listened to regarding ME...
 

Mij

Messages
2,353
Activity.. like that one.

Not sure about "exertion" because like "exercise" it suggests pushing yourself.

I'm guessing Valentijn that your heart rate will be higher than recommended if your activities/movements feel like an exertion? Have you checked?

I would just be worried that put in the hands of an over enthusiastic physio, that "exertion" would be as harmful a word as "exercise".

I guess it's all academic anyway, as the patient population isn't much listened to regarding ME...


Not if you tell them that it amplifies your symptoms and makes you worse.
 
Messages
1,082
Location
UK
Hmmmm I think UK patients have been saying that for a while, but still get put on GET programmes.

Thats exactly what i was fighting in hospital a couple of days ago while i was comatosed on a bed!

Hows this for graded 'activity'?
Stage 1: be repeatedly insulted by doctor.
Stage 2: get extremely angry.
Stage 3: allow anger to flow into arm thereby animating arm.
Stage 4: punch doctor in face who is at eye level because he's using your wheelchair as a seat to harass you while you're dying in the bed next to him. Stage 5: suffer extreme PEM but temporary satisfaction from the 'activity'

Okay in the real world that activity might have us sectioned but one can fantasise ;)
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
I agree regarding HR not being totally reliable as a measure for preventing PEM... I wore a HR monitor once for 6 weeks and although it helped bring home to me the type of activities that raised my HR (and instilled in me the need to do things slowly) it was not a method I could utilise long term.

I find a Fitbit much more useful and simple, and have finally managed to stabilise my condition now for the past 6 months.

I have only been ill for 2 years, and lost a lot of ground over the first 18 months - usually after over-exertions. So it is a great relief to feel I have some semblance of control again.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Just like the sprinter whose legs wobble, heart races, lungs cry, and brain goes foggy if the sprint is maintained for longer than the body can manage, so are my trips to the restroom. Is this because I, like the sprinter, have gone anaerobic? What if these symptoms persist even after rest? Am I then still in anaerobic territory?
Hi, Sue. The same wobbling etc can be seen in the marathoner who tries to go too fast at the finish line.

A conditioned sprinter has roughly 10 seconds of stored ATP to use when going at full power. That's why the 100 meter sprint race is at that length - they take roughly ten seconds before they'd slow down a lot.

Glucose and/or fat are used to recycle/replenish ATP. The more demand there is for oxygen, the more a person switches to glucose because fat-burning uses more oxygen. If that wobbly marathoner had not speeded up at the finish, they probably wouldn't have been wobbling because they would have stayed aerobic - wherein their ability to recycle ATP is sufficient to keep up with their demand for ATP.

Then again, a long distance athlete can run out of glucose stored in the liver (as glycogen), so they hit the wall because they can't utilize their stored bodyfat as fuel for the race so well. To avoid hitting the wall, they typically consume fairly large quantities of carbs during the race.

But some get significant GI upset from doing so. That leads to a high fat nutrition approach in some ultra-marathoners like Tim Olson. The idea is that carb storage is fairly limited, while energy from fat storage is huge, even in lean people. But still, they consume lots of sugars on race day, because they want to not only finish, they want to go fast enough to win and to go fast they need carbs.

That's my recollection of all of this, anyway.