****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

[Keith Geraghty]

I am concerned that Dr. Crawley is putting out a leaflet stating she is not aware of any known side effects with GET use - she has obviously not read my paper on Deviant Cellular Abnormalites and has missed much of the literature on GET.

 

[Sidereal]

Other than ending up maimed, permanently bedridden, tube fed etc. there are no known side effects of graded exercise.

 

[GreyOwl]

@Yogi there is a big difference between "Studies in adults have also not shown that there are any side effects of these two treatments" and "Studies in adults have also shown that there are no side effects of these two treatments". Poor reporting of adverse reactions in a former study enables investigators to claim the former statement, but not the latter. The latter statement is what parents of pediatric patients are entitled to be informed about.

 

[user9876]

@Yogi there is a big difference between "Studies in adults have also not shown that there are any side effects of these two treatments" and "Studies in adults have also shown that there are no side effects of these two treatments". Poor reporting of adverse reactions in a former study enables investigators to claim the former statement, but not the latter. The latter statement is what parents of pediatric patients are entitled to be informed about.

There is a difference but these are meant to be written for children so being clear rather than clever about language is important. If it could give the impression that there are no side effects to a non-careful and non-questioning reader then that is important. Children are not taught to question facts given by those in authority (i.e. teachers, doctors) and at school even get in to trouble for pointing out errors.

 

[eastcoast12]

There is a difference but these are meant to be written for children so being clear rather than clever about language is important. If it could give the impression that there are no side effects to a non-careful and non-questioning reader then that is important. Children are not taught to question facts given by those in authority (i.e. teachers, doctors) and at school even get in to trouble for pointing out errors.

I just wanted to jump in really quick. I'm a high school science teacher(in the US) and myself as well as the rest of my dept teach the kids to always think for themselves and always question the authority. I love when my kids question what I'm teaching as it leads to individuality and the development of critical thinking and leads to some great discussions. I don't know if it's like that everywhere but it should be. Just wanted to throw that out there because in the US it's seems to be becoming popular trend to attack teachers for a variety of reasons.
Sorry, I'll take a step down from the soap box now

 

[user9876]

I just wanted to jump in really quick. I'm a high school science teacher(in the US) and myself as well as the rest of my dept teach the kids to always think for themselves and always question the authority. I love when my kids question what I'm teaching as it leads to individuality and the development of critical thinking and leads to some great discussions. I don't know if it's like that everywhere but it should be. Just wanted to throw that out there because in the US it's seems to be becoming popular trend to attack teachers for a variety of reasons.
Sorry, I'll take a step down from the soap box now

I agree it should be like that. In the UK my experience of my child's primary school was questioning was not appreciated. But maybe later it is and probably with the better teachers. But I also think there is a think in the UK of 'teaching respect for authority' which is something I dislike I tend to think the more authority someone has the more they should be questioned and they should be capable of giving good answers.

 

[eastcoast12]

I agree it should be like that. In the UK my experience of my child's primary school was questioning was not appreciated. But maybe later it is and probably with the better teachers. But I also think there is a think in the UK of 'teaching respect for authority' which is something I dislike I tend to think the more authority someone has the more they should be questioned and they should be capable of giving good answers.

I agree. people confuse disrespecting authority and questioning authority. U know that whole vexatious thing. This is something clearly sharpe, white and all the other flops don't understand

 

[Jenny TipsforME]

You know how we were saying:

How are we going to stop this before any children become sicker than they need to be?!

The plan is now going live.

SEE HERE http://www.meaction.net/suspend-all...se-therapy-in-children-and-adults-with-mecfs/

https://twitter.com/i/web/status/775397170262315008

 

[Lucibee]

According to the ISRCTN registry, the trial ended on 31 Aug 2016. Looks like they waited until the trial was pretty much over before they published the protocol.

 

[Jenny TipsforME]

@Lucibee
There is a larger version planned. That was the feasibility study you've seen info for (equivalent to a pilot or phase 1 study).

It is actually a perfect time to let our opinion be known before the larger study gets ethical approval.

Usually it is hard to know when a new study is planned ahead of it being signed off.

 

[Snowdrop]

@Countrygirl

Just an FYI that the link from the first post is broken. It's a 404 not found.

 

[Jenny TipsforME]

There's some info about MAGENTA here:

http://www.stopget.org/sign-now/background/what-is-magenta/

 

[Jenny TipsforME]

I've written a blog post which covers ideas around advocacy strategy and more specifically ways in which you personally can bring in more #stopGET petition signatures (suspending UK GET trials including MAGENTA):

https://tipsforme.wordpress.com/2016/09/15/petition-publicity/

 

[Glycon]

It's like University Bristol is a "special" educational institution...

You may not find the treatment you are offered helps you. Young people with CFS/ME can get worse even with the treatment offered and we do not know how many will get worse (or better) with either Activity Management or Graded Exercise Therapy. This is why we are doing a study.

It is quite normal to notice your heart beating a little faster and your breathing a little faster. Sometimes you might have slight aching of the muscles. We will work with you to make sure that the physical activity level is safe so this[sic] symptoms should be slight and temporary.

But THIS is definitely my favorite part:

"We are conducting an experimental study on very sick children. By our own admission, we don't know how many of them are going to be harmed by our study. No questions, please."

 

[user9876]

PACE recovery analysis thread
http://forums.phoenixrising.me/index.php?threads/patient-analysis-of-pace-recovery.46942/

 

[slysaint]

No questions, please

there is a feedback button............

 

[Glycon]

there is a feedback button............

Does it work?

 

[slysaint]

Does it work?

http://www.bristol.ac.uk/feedback/p...disability/chronic-fatigue/magenta-trial/faq/

 

[Dolphin]

I'm not sure it has been mentioned but it looks like the cost of MAGENTA is 864000 pounds:

http://www.meassociation.org.uk/201...y-of-bristol-press-release-16-september-2014/

Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multicentre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.

Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said:

“Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”

The five-year study entitled ‘Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding of over £864,000.

 

[Daisymay]

I'm not sure it has been mentioned but it looks like the cost of MAGENTA is 864000 pounds:

http://www.meassociation.org.uk/201...y-of-bristol-press-release-16-september-2014/

Also from this same link:

Stephen Holgate, Chair of the UK CFS/ME Research Collaborative [UK CMRC], said:

“For many years, researchers have struggled to fund studies into this important and yet devastating condition. The CFS/ME Research Collaborative brings researchers and charities together to increase funding in CFS/ME research. These fellowships show that funding bodies will fund high-quality research in CFS/ME.”

Shows what his judgement is like!