Experiences of CPET testing

I don't know why I didn't think of that! Salford Uni near me does this. Do you have a direct link to the protocol? I can't seem to find it among the papers at the Workwell or via Google.

 

Brilliant, thanks.

 

For anyone who wants the Salford link I found, it's here: https://www.salford.ac.uk/health-sc...-services/exercise-physiology-testing-service

Would it be helpful to create a thread compiling CPET testing across the country? It might be cheaper for many mild to moderate patients than, for instance, Myhill's mito testing.

 

http://www.workwellfoundation.org/w...surments-to-Identify-Individuals-with-CFS.pdf

 

Perhaps two threads, one for places for testing and another for discussion? @Andy is on this thread and could comment on that.

Probably need to remember that it was 95% accurate at identifying pwme in the original study, so it's not foolproof. I'm sure I saw someone on PR had got a negative response to it, ie it didn't show he had CFS. But helpful nonetheless if it does show reduced AT and doesn't lead to a prolonged crash.

 

Well if it showed a negative result, I could either retest later, or celebrate the news that I may have something very treatable.

 

Indeed. That was in the back of my mind yesterday which made the results bittersweet.

 

This thread for discussion, and set up another thread for places that do testing?

 

Agreed. Later today, I can dig up some local services that do this, if someone else wants to start the thread? Maybe after we've got the list together, we can collate everything into one easy document or web page with links?

 

Yes, that would work well, because discussion around the CPET would eventually lead to discussion around the management paper by the same authors, as per the title of this thread.

 

My daughter agrees with this and says she appeared better on the second test because she was less anxious and knew what was going to happen.

 

We have a number of colleges / unis offering sports science/ coaching - I will make a few calls

 

New thread here, https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/

Also this thread came up when I was doing it, may be of interest, https://www.s4me.info/threads/2-day...e-videos-papers-your-experience-discuss.1491/

 

I read an article about fatigue in the MS society magazine which had been written about fatigue in rheumatoid arthritis for their magazine - if you follow me. It said that people with fatiguing illnesses lose the ability to recognise tiredness because they live with it all the time. They do not stop until they have gone into exhaustion where healthy people can recognise when they are tired and stop for a bit.

The same thing most likely applies to us, possibly more so since we have energy production at the root of our disease.

 

That doesn't reflect my experience at all. I am a lot more sensitive to tiredness now than I was before I got ill, and I stop as soon as I notice it. Training myself not to go into exhaustion is an essential part of learning to pace, I have been forced to recognise it or suffer the consequences.