Open UK - Recruiting: Novel Dynamic Proteomics Approaches to Investigate the Systems Level Pathology of ME/CFS

[adambeyoncelowe]

A CPET is normally for 10-12 mins. So this is definitely longer than usual, and this must be because they want to be sure they can provoke PEM in all patients. But again, I'm not sure how many people will sign up to this.

 

[JemPD]

It seems quite worrying to me. I worry that very few people with PEM as part of their ME, (except those at the very mildest end who are very easy to misdiagnose) will be able to sign up for this.

I mean ok they might want to be sure to trigger PEM, but those who cant do the 25mins wont sign up so they'll likely end up with a bunch of participants at the very mild or misdiagnosed end, whose parameters for PEM trigger may in fact not even be hit by the 25 mins, thus they wont be in PEM anyway.

I dont think they understand the condition. I'm worried they think it is something it isnt.

Is anyone able to speak to them about it, i suppose its a fait accompli now?

 

[Ravn]

The exercise test is only any use for finding proteomic effects of PEM if they take blood samples in the days immediately following the exercise. Is there any indication that they intend to do that?

Looks like it.

2. Performance of exercise stress test. This exercise test is designed to influence a degree of post-exertional malaise. The protocol chosen is based on previously published work. You will be asked to complete 25mins of cycling at an intensity set at 70% of age-predicted maximal heart rate. Exercise will begin at a low intensity (20 watts) and gradually increased until target heart rate is achieved and maintained for 25mins, with a 3 min active recovery period. Your ratings of perceived exertion and leg muscle pain will be monitored every 5mins.

3. Collection of additional biological samples: • Single blood sample from an arm vein.

[...]

6. For the next 5 days following this visit additional daily blood samples will be collected via venepuncture at the participants home by a visiting phlebotomist, who will also collect daily saliva samples.

 

[Sbag]

Doing a quick internet search, Nottingham University are part of the “Harvard ME/CFS Collaboration”.

On their page about skeletal muscle dysfunction they mention looking at proteomics and using samples from Birmingham and Nottingham.

so maybe it is linked with this collaboration?

ETA link to the collaboration muscle page https://endmecfs.mgh.harvard.edu/skeletalmuscle/

 

[Hutan]

Maybe we should have longitudinal studies where patients message whenever they think they've overdone it in the course of their normal life and PEM is likely to follow and the researchers rush off to collect samples at the patients' homes. Can't see that happening any time soon.

There are some studies taking the bad day/good day approach. E.g. Chris Armstrong in Melbourne is doing one I think. That is a good approach, side stepping the issues with provocation studies.

I think what these particular researchers are doing is mostly ok though. My questions are in line with Bobbler's comment about what monitoring of post-intervention impacts is being done. Researchers and participants in any future studies should have access to some indication of the consequences of what the patients are being asked to do. There should also be substantial funding for patients putting their health the line for this type of study, so, for example, the participant can choose to pay for some home help during the recovery period.

 

[Hutan]

There should also be substantial funding for patients putting their health the line for this type of study, so, for example, the participant can choose to pay for some home help during the recovery period.

Just further on that, I have seen some studies budget to spend tens of thousands of dollars on specialist participant recruitment firms (even while noting that most recruits will come via communication with patient organisations) but offer compensation of up to only a few tens of dollars in transport costs per patient. I know researchers struggle to get funds, but I think the time and effort of participants needs to be honoured more than it usually is.

For example, for a CPET study that I participated in, I had costs of flights, taxis, airport parking, three nights of accommodation, meals away from home, as well as the effort of recovering after, and there was no financial compensation at all. Many patients are willing to sacrifice a lot in order to advance medical knowledge, but researchers should do what they can to reduce the costs of participation, physical, financial and otherwise, and increase the benefits (including by getting patient input throughout the project so that the research is as smart as it can be, and by clearly communicating results).