CMRC minutes November 2018

https://www.actionforme.org.uk/uploads/images/2018/12/cmrc-board-minutes-nov-2018_2.pdf

Highlights are establishment of working groups, no conference next year, the high level report is on hold, the priorities partnership meetings have begun, the MRC have asked for further submissions regarding the funding requests and AFME promoting the success of the last conference.
The actual researcher number attending the meeting is low.

 

I saw someone asking about the James Lind Alliance priority setting work recently:

We still don't know what happened with that Nutt study:

Go Tuller!

 

I hope they reached the recruitment target. They seemed to be slow doing so.

Personally I think people with ME/CFS should be promoting studies that are recruiting more. It doesn't cost any money. It doesn't look good to funders if the required recruitment can't be reached. And if the recruitment target isn't reached, the sample size might be not big enough to get definitive results from a study.

 

This, https://clinicaltrials.gov/ct2/show/NCT02055898, shows them as having reached their recruitment target of 10 participants, although they originally sought 12 people - page was last updated 2015. Probably showed null results so he lost interest in publishing would be my guess.

 

What is the David Nutt study?

 

I see the conference is only being put back by six months to March 2020, which is good.

 

https://clinicaltrials.gov/ct2/show/NCT02055898 gives you the basic details, https://gtr.ukri.org/projects?ref=MR/J002852/1, is, I assume, the full write-up.

ETA: I guess this sums it up pretty well (taken from that second link), "This study will bring together experts in CFS, sleep and psychopharmacology, to study the nature of homeostatic impairment in CFS and its impact on daytime function. We propose to use a pharmacological agent which increases deep restorative sleep (slow wave sleep) which is a marker for homeostatic drive to sleep at night."

 

Xyrem is used in USA I thought , at least for fibromyalgia. It’s supposed to give the deep restorative sleep whereas many sleep meds don’t provide that. It would be interesting and I’m amazed they couldn’t recruit the full tbh.

 

While investigating the study I found this, which looks to be an update given to the Sleep Society by Butt, which describes the problems they had with recruitment, https://www.sleepsociety.org.uk/wp-...ings-from-recruitment-for-the-SAFFE-study.pdf

I can't give a quote from it at the moment (I'm on my tablet that refuses to allow me to copy from a PDF file) but basically they were seeing lots of potential subjects who had been misdiagnosed, in their opinion.

 

The study was an important one for the community , problems arise, you overcome them afaic. I think having a researcher generally not ME interested might mean the less of a fight ?

 

Also, it could put researchers off staying in the field if they think it will be too challenging to get subjects for studies.

Few ME/CFS researchers seem to pay for ads for recruiting, even though the cost might be tiny relative to the total cost of a study.

I have access to a Facebook employee who lets me use some of their free ad units. I have run some paid ads recruiting for ME/CFS studies (both for patients and sometimes for healthy controls). But people can highlight them in other ways e.g. simply posting them to fora (there are lots and lots of fora on Facebook), tweeting and re-tweeting messages, etc.

 

I wonder if S4ME could have a working group to facilitate this - a group of people promoting specific studies when they recruit, or a group to draw up a list of actions that researchers should take when they're attempting to recruit. (New thread for this, probably, if people are interested.)

We're interested in science, but if there's no science being done for us to be interested in...

 

My post has got some 'likes' so I've started a new thread about this here:

https://www.s4me.info/threads/shoul...itate-recruitment-into-research-studies.7062/

 

Maybe sleep dìsordered breathing is part of ME/CFS? Maybe those people shouldn't be excluded? ME/CFS is not a sleep disorder, the main symptoms are different. ME won't disappear if the disordered breathing is solved.
What some researchers maybe should understand is that they're doing the job of thers, like doctors, who should check people with ME, which obviously doesn't happen to a satisfactory degree.

How can you understand something if you exclude characteristics of this thing and ergo the entire thing? (I understand you want "pure" subjects, but it should be focused on the main symptoms and their fulfillment of ME criteria?)

 

They had 200 volunteers. If they exclude up to around 70%, no wonder it gets difficult.

Edit: One mustn't forget problems regarding travel. Most people with ME cannot travel, and researchers won't come to you, or there is no remote option.

 

Yes. I wasn’t complaining about people not taking part. I was pointing out that highlighting research studies that are recruiting is a practical, no cost thing more people could be doing.

The study mentioned in this thread is just one of many I have seen with slow recruitment.