Experiences of CPET testing

chicaguapa

chicaguapa

Senior Member (Voting Rights)
Thread moved and renamed


Is there a more up to date paper from these guys or the Workwell Foundation on the management of ME from a PT perspective? Or any published criticisms/ updates elsewhere?

Thanks.
 
Last edited by a moderator:
They're still referencing the 2010 paper so I guess there are no updates or changes. I can't find any criticisms of it either. My daughter is doing the 2 day CPET so am looking for follow up options and what to do with the data. I wanted to check that this management model hasn't been subjected to the same criticisms as PACE before I pass it onto the physiotherapists. Thanks.
 
chicaguapa said:
They're still referencing the 2010 paper so I guess there are no updates or changes. I can't find any criticisms of it either. My daughter is doing the 2 day CPET so am looking for follow up options and what to do with the data. I wanted to check that this management model hasn't been subjected to the same criticisms as PACE before I pass it onto the physiotherapists. Thanks.
Click to expand...
I hope your daughter dosn' t suffer too much payback.
Thus is something we could not contemplate at this point in time, but i can see the usefulness.
 
Thank you. She managed just 6 minutes of cycling on both tests but was shown to be at maximal effort. Being a child (she's 16) her PEM comes on quite quickly, so she felt really bad immediately after the test but appeared to bounce back to her 'normal' within a few hours. This is par for the course lately so we felt she was at the right point to manage the test without too much payback. She wouldn't have managed it a year ago and we have been waiting until now before we contemplated it.

Interesting results. Her AT was shown to have reduced by 42% on day 2, whereas based on her behaviour and perceived capacity for activity you'd have thought it'd had no effect at all. Not sure where we go from here. The sports scientists at the university where we had it done are looking into it; they're fascinated by the results.
 
chicaguapa said:
Thank you. She managed just 6 minutes of cycling on both tests but was shown to be at maximal effort. Being a child (she's 16) her PEM comes on quite quickly, so she felt really bad immediately after the test but appeared to bounce back to her 'normal' within a few hours. This is par for the course lately so we felt she was at the right point to manage the test without too much payback. She wouldn't have managed it a year ago and we have been waiting until now before we contemplated it.

Interesting results. Her AT was shown to have reduced by 42% on day 2, whereas based on her behaviour and perceived capacity for activity you'd have thought it'd had no effect at all. Not sure where we go from here. The sports scientists at the university where we had it done are looking into it; they're fascinated by the results.
Click to expand...
Good to hear that payback has been limited - and good that the results have piqued interest of academics beyond the normal " ME" bubble.
 
chicaguapa said:
Being a child (she's 16) her PEM comes on quite quickly, so she felt really bad immediately after the test but appeared to bounce back to her 'normal' within a few hours
Click to expand...
hi @chicaguapa wondering what makes you say PEM comes on more quickly because she's younger - not heard of that before - but then I've only been learning about ME for a couple of years and know virtually nothing about how it affects children.
 
NelliePledge said:
hi @chicaguapa wondering what makes you say PEM comes on more quickly because she's younger - not heard of that before - but then I've only been learning about ME for a couple of years and know virtually nothing about how it affects children.
Click to expand...
PEM for my daughter (16) generally kicks in 24-36 hours later and peaks at 48 hours. I don't t know if this is more a correlation to degree of illness?
It' s such an idiosyncratic condition.
 
I read somewhere that it can come on more quickly for children. I thought it was in the paediatric primer, but can't find it. Maybe it's in the MEA Purple Book. It does vary and sometimes when we think she's 'got away with it', it comes on the next day. But more often than not, it's within hours and has been since the beginning when she was a lot worse. We sometimes felt it was correlated to the degree of overdoing it, but I don't think that was always the case either.
 
Trish said:
Have you shown them the information from the Workwell Foundation who developed the 2 day CPET for ME? I hope they stay interested and want to learn more.
Click to expand...

Yes, I have. And when I originally contacted them they sent me the 2013 paper "Discriminative Validity of Metabolic and Workload Measurements for Identifying People with Chronic Fatigue Syndrome" saying these were the protocols they'd use. So they know what they're doing up to that point.

They'd used it before for someone who simply needed to evidence he had CFS. But we're hoping they'll be able to follow up with the paper that this thread is about and work with her on a physio programme within the parameters shown by the test. So now they're going to speak to other universities to do some research as they don't feel able to draw any conclusions themselves, other than it shows similar results, thereby supporting the CFS diagnosis.

They have a student in the department who had CFS and is now recovered. They were hoping he'd do his dissertation on it, but he's chosen something else as they're a sports clinic really. I've offered to share our data, if he changes his mind.
 
adambeyoncelowe said:
This is really useful.
Click to expand...

It is! The most enlightening thing for us is that both the technician and I felt she seemed better on day 2, both in herself and her performance on the bike. But this wasn't borne out in the test results. It shows how the perception is different to the actuality and makes me wonder just how many times I've called it wrong and how this may have exacerbated the illness.

It's a shame that it comes with risks attached and is only suitable for pwme who can reach maximal output as it really would be a helpful diagnostic tool and to help management in the early stages.
 
That is fascinating @chicaguapa . Thank you for telling us about it. Your daughter's symptoms not matching the objective findings is, I think important if it is replicated with other patients. And at £100 a time it's much cheaper than a lot of medical tests. It sounds like it really should be offered to everyone as part of diagnosis unless they are too sick to do it.
 
chicaguapa said:
It is! The most enlightening thing for us is that both the technician and I felt she seemed better on day 2, both in herself and her performance on the bike. But this wasn't borne out in the test results. It shows how the perception is different to the actuality and makes me wonder just how many times I've called it wrong and how this may have exacerbated the illness.

It's a shame that it comes with risks attached and is only suitable for pwme who can reach maximal output as it really would be a helpful diagnostic tool and to help management in the early stages.
Click to expand...

I'm really interested in this. Would I just ask for a two-day CPET and they'll know what I mean? The only thing putting me off is the exhausting journey there and the overnight thing. It would be worth it for some useful evidence though.
 
adambeyoncelowe said:
I'm really interested in this. Would I just ask for a two-day CPET and they'll know what I mean? The only thing putting me off is the exhausting journey there and the overnight thing. It would be worth it for some useful evidence though.
Click to expand...

Could you ask around any universities nearer you and see if any of them have a sports lab that's open to the public? They just need the equipment to be able to do it. We've been calling it the VO2max test so perhaps ask for that in the first instance and then give them the paper with the 2-day protocols in it for CFS.
 
Trish said:
Your daughter's symptoms not matching the objective findings is, I think important if it is replicated with other patients.
Click to expand...

Watching her today, I wonder if it's effect of exercise on mental health that can be attributed to her perceived improvement in symptoms. I wonder if that's ever been looked at. I've spent the last 2.5 years balancing the two so am pretty mindful of both.

It sounds like it really should be offered to everyone as part of diagnosis unless they are too sick to do it.
Click to expand...

It's trying to get the right difference between helpful tests and being seen to make it mandatory. The test requires you to "exercise to exhaustion". Twice. So it's got to be a personal choice whether to do that or not. And I'm not sure if there's any way of telling if you're 'well enough' that it's not going to cause a long-term crash. We took the view that it wouldn't in our case based on how she'd responded recently to some extreme exertion (GCSES), but I wouldn't have wanted a medical professional to have made that call.
 
You must log in or register to reply here.
Back
Top Bottom