CMRC minutes November 2018

[Cinders66]

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.

 

[Esther12]

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

James Lind Alliance
–
Priority Setting Partnership
:
SC feedback that there is a first working group meeting in a couple of weeks and she
will provide an email update to the Board following the call.

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

David Nutt study: there was no input at the conference and there has still not been an update on progress. SH will follow this up with MRC for an update.

Go Tuller!

Within the first two weeks of posting, the 15 films had been watched 2,630 times. The most popular film is Dr Nina Muirhead’s presentation (37% of views), followed by David Tuller (15% of views).

 

[NelliePledge]

Good to see so many people watching Nina Muirheads talk. Is she on S4ME? If not anyone have any connections to invite her.

 

[Dolphin]

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

David Nutt study: there was no input at the conference and there has still not been an update on progress. SH will follow this up with MRC for an update.

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.

 

[Andy]

I hope they reached the recruitment target. They seem 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 is 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.

 

[Sasha]

What is the David Nutt study?

 

[Sasha]

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

 

[Andy]

What is the David Nutt study?

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."

 

[NelliePledge]

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."

Shame cos we could do with something much better than amitryptiline as standard approach for insomnia in ME patients

 

[Cinders66]

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.

 

[Andy]

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.

 

[NelliePledge]

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.

Interesting. As Prof Puri was involved assuming they knew what they were talking about.

 

[Cinders66]

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 ?

 

[Dolphin]

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.

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.

 

[Sasha]

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...

 

[Sasha]

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/

 

[Inara]

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.

To date, recruitment for this study has been difficult. Over 200 patients have volunteered; with 20% excluded in initial stages as taking psychoactive medications. Of those progressing to screening, 30% have been found to have undiagnosed sleep disordered breathing and 11% have been found to have psychiatric comorbidity. Based on initial observations, there appears to be poor identification of sleep disorders in patients with CFS, possibly due to the multiple pathways for diagnosis and care, and the symptoms of both fatigue and daytime sleepiness in this condition.

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?)

 

[Inara]

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

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.

 

[Sean]

ME won't disappear if the disordered breathing is solved.

Can confirm. Had septoplasty and turbinate reduction a while back, which helped my breathing greatly.

Didn't make any difference to the ME.

 

[Dolphin]

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.