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

Countrygirl

Senior Member
Messages
5,429
Location
UK
****** !!!!!!!! ****************!!!!!!!!!!!!!!!! :mad::cry::cry::aghhh::aghhh::aghhh::aghhh:



http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=19035


Research Summary
Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) in children is relatively common affecting up to 2% of secondary school children. Although national guidance recommends that children with CFS/ME are offered either Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET) or Activity Management, there is no evidence for the effectiveness or cost effectiveness and acceptability of GET for children with CFS/ME. This study will investigate the feasibility and acceptability of conducting a Randomised Controlled Trial (RCT) to investigate the effectiveness and cost-effectiveness of Graded Exercise Therapy compared to Activity Management for the treatment of CFS/ME in children. We will interview participants, their parents, researchers and clinicians to improve the study and the interventions. If MAGENTA is feasible, we will move on to a full study and find out whether GET is effective and cost effective. The study will be conducted in three specialist services: Bath/Bristol, Cambridge and Newcastle. Children will be eligible if they have CFS/ME, are aged 8-17 and are not severely affected, are not referred for CBT at the first assessment and are able to attend follow up appointments. The study is funded by the NIHR.
 
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John Mac

Senior Member
Messages
321
Location
Liverpool UK
"Main Exclusion Criteria
Too severely affected to attend hospital appointments (and require a domiciliary assessment)
Referred for CBT at their first clinical assessment
Unable to attend follow up appointments" (my bold)

So if any of the children suffer a serious reaction to the GET they will be excluded from the results :mad:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Has this study been approved by the institutional review board? I don't know anything about them, so I am wondering if that could be a place to apply pressure - maybe force a public hearing or something.

With all the evidence that GET is harmful, how could it be ethical to study this treatment in young people who perhaps are too young to properly give consent?

Edit: I see it has been approved already:

Ethics approval
NRES Committee South West - Frenchay, 03/07/2015, ref: 15/SW/0124
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
The MAGENTA trial

What are the possible benefits and risks of participating?
Participants will not benefit directly from taking part in the study although it may prove enjoyable contributing to the research. There are no risks of participating in the study.

Participants in this study have not been properly warned of possible adverse effects, so there is no informed consent for this trial.
 

charles shepherd

Senior Member
Messages
2,239

News to me - I know nothing more than is in the information above. It appears to be a feasibility study. Disappointing to see no mention of consulting with ME/CFS organisations in the charity sector that have collected very detailed patient evidence on the efficacy and safety of CBT and GET. Will be interesting to see how 'activity management' is defined…...
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
As I've said:
Bullies spiral into ever more abusive acts and manipulations, until the victim is destroyed, or they fight back and maim that bastard personally, or in a sane decent world, decent folk who are not that victims but are sickened by the abuse say "enough is enough!" and stop the wrong doing prefferwbly by moderate means.

But since the UKs system is infested with corrupt scum, police, politicians local and national, bureacrats and civil servants, so-called "experts" who will spew lies for cash and "honours", secret societies like the Masons who will even stoop to protecting members who rape children...
Well, expecting thr British system to ztop this bitch and Wessely is like expecting a "banana republic" to stop criminal but very profitable vivsection and other horrific experiments on adults and children...it's not going to happen

Not all in the UK elite are scum but most are, even if they themselves do not commit horrible acts and crimes, they protect those who do. See Margaret Thatcher, never in British history has any bastard more deserved hanging than that evil, treacherous cow!
It is her legacy of greed and selfishness which has massively worsened things, allowing vermin to writhe like maggots, eating into the heart of our country
I'd have the lot tossed from the a white cliffs of Dover, like scraping shit off your shoe!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
"Children will be asked to record the amount of exercise and taught to use a heart rate monitor with target heart rates."

so once again another study where they wont even use devices to try to actually measure persons exercise periods.. pedometers or whatever they are called.

Anyone getting worst with GET, will she rediagnose those and remove them from the study?


are we about to see a study done even worst then the PACE trial? How can we as a community get guidelines put in place so studies are being done well when it comes to our illness?
.....

They will keep repeating these CBT and GET studies until they finally manage to fluke one with a better result.