Closed Recruiting: ..oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of pwME during normal daily activities

[Andy]

From @PhysiosforME

"Participants needed for our study

We are delighted to announce that recruitment has now begun for our feasibility study: “Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.”

As this is a feasibility study we are looking for a small number of participants and will be restricting our recruitment based on geography, but if you would be interested in taking part you can find out more information here."

https://www.physiosforme.com/post/participants-needed-for-our-study

Selection criteria is meeting ICC research criteria and living in the Midlands or London area. Other criteria is mentioned (PEM, diagnosed with ME, struggle with daily activities) but I would have thought that meeting ICC would cover all of those.

 

[Andy]

One question I do have, given that it is mentioned so prominently, is whether the potential participant is meant to know ahead of time whether they meet ICC or not, as the 'poster' suggests? My assumption would be that potential participants would need to be assessed on whether they meet ICC by those running the study but the poster doesn't, to me, read this way.

 

[Sbag]

One question I do have, given that it is mentioned so prominently, is whether the potential participant is meant to know ahead of time whether they meet ICC or not, as the 'poster' suggests? My assumption would be that potential participants would need to be assessed on whether they meet ICC by those running the study but the poster doesn't, to me, read this way.

On the site there is a link at the bottom to the screening form that they will use and this gives a better idea of the type of symptoms you need to have to qualify

 

[Andy]

On the site there is a link at the bottom to the screening form that they will use and this gives a better idea of the type of symptoms you need to have to qualify

Ha, so there is, I just hadn't scrolled far enough down to see them, obviously. Thanks.

Having read those, my point still stands, I think, that the poster is not clear. The screening form does strongly suggest that the potential participants will be assessed before being accepted but the wording of the poster suggests that the participant should know this ahead of time.

 

[DokaGirl]

Thank you ,@Andy for this post.
Although their info needs some clarification it's good to see a real world/every day study, in addition to say the 2 day CPET, which can be very difficult for people. Hope it's successful, with more to come.

 

[PhysiosforME]

Ha, so there is, I just hadn't scrolled far enough down to see them, obviously. Thanks.

Having read those, my point still stands, I think, that the poster is not clear. The screening form does strongly suggest that the potential participants will be assessed before being accepted but the wording of the poster suggests that the participant should know this ahead of time.

Thanks for this - good point. I'll feedback to Nikki.

We've been overwhelmed (and a little bit emotional) about how many people with ME have already volunteered to take part - we were worried we might struggle to recruit!

We will keep you posted.

 

[Andy]

"Recruitment for our feasibility study is now closed. We did not think we’d be writing this less than 24 hours after putting out the call for participants, but we actually exceeded target numbers by 50% in less than 4 hours…"

 

[PhysiosforME]

"Recruitment for our feasibility study is now closed. We did not think we’d be writing this less than 24 hours after putting out the call for participants, but we actually exceeded target numbers by 50% in less than 4 hours…"

Thank you for sharing. We are truly grateful for so much support. Will keep you posted

 

[Hoopoe]

I suspect you'll find showering to be near the top of the most strenuous activities.

 

[Sly Saint]

 

[Peter T]

This rush of people signing up to this research project rather contradicts the assertion by some BPS researchers that people with ME are anti science.

We are not anti science, just anti bad science.

 

[Wonko]

I am not anti science, I am also not anti magic/woo, or even anti religion.

I go with what works, at least occasionally.

Science has given me the ability to order shopping online (in fact it's given me 'online'), it's given me somewhere to live, it's given me...many things.

Magic/woo has given me nothing, other than 'problems', and even then not directly, problems are caused because other people believe in them. Even if they don't realise that's what's under their world view.

Religion has given me nothing, other than problems - the whole puritan thing.

BPS, and EBM, would seem to be a combination of magic/woo and religion. Promoted to foster the interests of people who are not me.

So my prefered approach to many real things, is science - despite that it's deeply flawed, and, so far, 'always' wrong - it just works better to give me stuff that I find handy.