Open (Palmerston North, New Zealand) Effects of exercise at anaerobic threshold on post exertional malaise in individuals with ME/CFS

[RoseE]

Hi, We (M.E. Awareness NZ) shared the opportunity to participate in this study, because we understood that the previous work by the Lynette Hodges had a good reputation and was enlightening about PEM.

There seem to be about four threads about past, current and future studies at Massey University and skimming thru some, I am not sure at all what the consensus is.

Would you recommend participation in the study or not, and why? And what info would you give to those that might be considering participating, so that they go in with their eyes wide open. --> Feel free to point me to a particular post in this or other thread. Or just wait for me to do a bit more reading myself lol.

Should we be raising any concerns with Massey University? About past research or this one?

Related to this.... On my wishlist for Science 4 ME...
When research is published and has been discussed here, then a summary is uploaded to ME-pedia or somewhere, so that people short on time, brain capacity /fog, etc can jump to a considered statement /hopefully one of consensus (rather than having to attempt to trawl through many pages of convo, some of which goes over my head, or just seems to be an emotional response (which is obviously a valid response, but not that useful to someone trying to read thru a thread to get clarity).

I guess to have this wish fulfilled, it would be good to have some funding for science for me, so that you can pay people for some of this work so many of you are putting in.
Are you an official charity registered in a particular country - that we could then apply for grants for? I digress probably. Up too late.

We have considered sharing the related threads here, under our facebook post about this research participation opportunity, but it's quite hard to know what to point to here. Wanting something that will help people to go in with their eyes open, and to participate in a safe way. If at all.

 

[Trish]

Related to this.... On my wishlist for Science 4 ME...
When research is published and has been discussed here, then a summary is uploaded to ME-pedia or somewhere, so that people short on time, brain capacity /fog, etc can jump to a considered statement /hopefully one of consensus (rather than having to attempt to trawl through many pages of convo, some of which goes over my head, or just seems to be an emotional response (which is obviously a valid response, but not that useful to someone trying to read thru a thread to get clarity).

MEPedia and S4ME are completely separate organisations, though there is some overlap of people involved in both.

MEPedia is run by #MEAction and I think @JaimeS is their person in charge of covering science. She writes summaries of research every so often that appear on #MEAction's website.

I think SOLVE also do research summaries.

If you want just a quick glimpse at what research is being discussed here, it's listed on our weekly News in Brief, but we don't attempt to summarise the thread discussion, just to give a tiny taste of what the research is about.

I guess to have this wish fulfilled, it would be good to have some funding for science for me, so that you can pay people for some of this work so many of you are putting in.
Are you an official charity registered in a particular country - that we could then apply for grants for?

S4ME is planning to become a registered charity in the UK. Not there yet.
We are completely run by volunteers and expect to continue that way. Though of course things can change in the future - who knows!

 

[Snowdrop]

Would you recommend participation in the study or not, and why? And what info would you give to those that might be considering participating, so that they go in with their eyes wide open.

I think that is a very good question that needs to be addressed for this study and any others that crop up. My opinion is that it's also a hard one to answer. Perhaps a more formal dialogue with anyone contemplating research needs to be established so that both the researchers and community benefit from improved quality of research and trust.

At the very least though, until that happens I would like to see a mole in all the various research going on. Not to subvert anything or find fault. As Hutan pointed out some of the reporting of the trial was simple wrong (eg re: diaries). I expect in this case probably due to the level of experience of the people actually doing the work (which suggests some supervision issues).

I think as a community we need this (wish we didn't) but monitoring research practices seems necessary.
Which means the designated person must be able to make their own notes for future reference. And perhaps keep copies of any supporting documents they are supplied with.

 

[obeat]

Having tried to follow CPET discussions, are they really of any value?