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

[ME3]

Dr Shepherd this is extremely worrying news about a new trial on children concocted by Esther Crawley. I know you will have plenty to say regarding it, but who will be harmed if it goes ahead. It must be highlighted in the public domain and stopped please.

All the charities must combine efforts to prevent further harm to children and unsuspecting parents. The past evidence has shown how devastating GET has been to thousands. Please help?

 

[Woolie]

As @charles shepherd said, this appears to be a feasibility study. So they've probably been given a small amount of money to gather information which they can then use to support a full application for funding for the study. It basically says they're going to ask people their views, and use this to "improve" the interventions, but its unclear how. "We will interview participants, their parents, researchers and clinicians to improve the study and the interventions".

"Researchers"? I find it bizarre that people could get funding to interview colleagues about how they think the research should be done. Ask them in your own time, FFS, just like everyone else does.

Oh, and you gotta love the new acronym MAGENTA? Obviously, we must have an acronym! It sounds all Blues Clues. doesn't it? Just right to appeal to young folks! I'm surprised they didn't ask for funding to interview each other to come up with the best possible acronym!

 

[lansbergen]

"Researchers"? I find it bizarre that people could get funding to interview colleagues about how they think the research should be done. Ask them in your own time, FFS, just like everyone else does.

Yep

 

[halcyon]

I know you will have plenty to say regarding it, but who will be harmed if it goes ahead. It must be highlighted in the public domain and stopped please.

Time to put those new CMRC communication code of conduct rules to the test I suppose.

 

[Sidereal]

I'm surprised they didn't ask for funding to interview each other to come up with the best possible acronym!

Did they focus group it?

 

[ME3]

Code of conduct is bound and gagged except to 'them'. -in code!

 

[Keela Too]

Children will be asked to record the amount of exercise and taught to use a heart rate monitor with target heart rates.

I'm slightly reassured to see that they plan on using heart rate monitors. So long as they stick to that plan. Harder to over do exercise within parameters set - even those by NICE..

 

[John Mac]

I'm slightly reassured to see that they plan on using heart rate monitors. So long as they stick to that plan. Harder to over do exercise within parameters set - even those by NICE..

I've got a heart rate monitor myself and it's awkward to use, don't be surprised if they get dropped as a result of poor uptake from the children. (Or at least that will be the excuse they use to drop the results from the study)

 

[Purple]

I'm slightly reassured to see that they plan on using heart rate monitors. So long as they stick to that plan. Harder to over do exercise within parameters set - even those by NICE..

I am not. I don't think they would be using them in a way that PWME should use heart monitors - to stay below the heart rate which corresponds to anaerobic threshold, to avoid the destructive effects of aerobic exercise/activity. Since they think ME = deconditioning, I imagine heart monitors will be used to ensure target heart rate is reached during aerobic exercise, in the way athletes and runners use heart monitors to train.

 

[Sasha]

I'm slightly reassured to see that they plan on using heart rate monitors. So long as they stick to that plan. Harder to over do exercise within parameters set - even those by NICE..

HR monitors won't help. CPET studies of ME/CFS patients indicate that our aerobic systems are "broken" and that we should avoid going over our aerobic thresholds, but GET is based explicitly on going over your aerobic threshold. The assumption behind the GET (and CBT) model is that CFS consists entirely of deconditioning and that if patients overcome their "false illness beliefs", gradually increase their activity, and push through any resulting symptoms (which are assumed to be caused by the deconditioning), they'll recover.

 

[Sasha]

To be coming up with more CBT and GET studies after the IoM report just seems mediaeval to me.

 

[Invisible Woman]

To be coming up with more CBT and GET studies after the IoM report just seems mediaeval to me.

Yeah, if they were interested in actual science or even helping people. However, the only interest they have is in themselves and their empires so they will continue to ride this gravy train as long and as far as they can.

 

[TiredSam]

To be coming up with more CBT and GET studies after the IoM report just seems mediaeval to me.

Shows the brazen confidence of the BPS brigade that they think that they can still get away with anything in the UK, in spite of scientific progress internationally and the fact that as PACE comes under scrutiny they are becoming the laughing stock of the international scientific community. So they just carry on as normal as if they are immune to it all.

 

[sarah darwins]

The assumption behind the GET (and CBT) model is that CFS consists entirely of deconditioning and that if patients overcome their "false illness beliefs", gradually increase their activity, and push through any resulting symptoms (which are assumed to be caused by the deconditioning), they'll recover.

Exactly. And that’s why I think there should be total opposition to this proposal, not engagement with the details of it. All they have is a theoretical model without evidence, based on assumptions. We should be telling the research councils that this sort of speculative experimentation on anyone, least of all children, is completely unethical.

My biggest concerns are that this study will swallow a large chunk of the already scarce funding and will be used as the “look what we’re doing for me/cfs patients” excuse for the next five years. There are much, much better ways that the money this would cost could be spent, like a comprehensive biomarker study of the more severely ill patients (perhaps children in particular).

 

[Sasha]

All they have is a theoretical model without evidence, based on assumptions.

It's worse than that - they have a theoretical model that has been falsified by the CPET evidence.

Exactly. And that’s why I think there should be total opposition to this proposal, not engagement with the details of it. [...] We should be telling the research councils that this sort of speculative experimentation on anyone, least of all children, is completely unethical.

My biggest concerns are that this study will swallow a large chunk of the already scarce funding and will be used as the “look what we’re doing for me/cfs patients” excuse for the next five years. There are much, much better ways that the money this would cost could be spent, like a comprehensive biomarker study of the more severely ill patients (perhaps children in particular).

Totally agree. The CBT/GET proponents shouldn't be allowed to carry on as though the rest of the science on ME/CFS doesn't exist. This is ridiculous (as well as horrifying).

 

[adreno]

Simply sickening to see this get funding, particularly after the null result of PACE at long term followup. GET isn't even safe, and more than likely to do harm.

 

[jimells]

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.

CMRC = ME/CFS Research Collaborative

Perhaps Dr Crawley needs to research the meaning of the word "collaborate". It shouldn't cost more than a few million pounds for her to figure out that members of a collaborative are supposed to tell each other what they are up to.

 

[Countrygirl]

Now for a bit of light relief thanks to @Invisible Woman : http://forums.phoenixrising.me/index.php?threads/research-by-muffin-the-research-mule.42703/

 

[Countrygirl]

Who fancies a job?

http://www.jobs.ac.uk/job/AMV070/research-associate-trial-manager/




Research Associate/Trial Manager
University of Bristol - School of Social and Community Medicine
Location: Bristol
Salary: £35,609 to £40,082 Per annum
Hours: Full Time, Part Time
Contract Type: Contract / Temporary

Placed on: 20th January 2016
Closes: 21st February 2016
Job Ref: ACAD101841
★ View Employer Profile
We are seeking to appoint a Research Associate/Trial Manager for Paediatric CFS/ME. The primary role of the post -holder will be to manage a large trial {FITNET-NHS) investigating an internet treatment for children with CFS/ME. The trial will recruit children with CFS/ME throughout the UK and requires substantial awareness raising among patients, GPs and paediatricians before recruitment starts in November 2016. The post holder will need project management skills and experience in running clinical trials.

There are three phases to the trial:

Month 1-6, preparation for trial: prepare all trial documentation; apply to IRAS for ethical approval; ensure targets are met with the adaption and migration of Dutch FITNET to University IT infrastructure; supervise integration with REDCap; awareness raising within
CRNs, RCGP and RCPCH.

Month 7-18, internal pilot trial: recruit to internal pilot study; follow up participants; liaise with qualitative researcher to organise qualitative interviews; submit ethics amendment; continue awareness raising.

Month 19 - 60, full study: recruit to full study organise follow up continue to organise qualitative interviews; support researcher obtaining GP data and capturing information on health resource use by linking to Hospital Episode Statistics (HES) and the Mental Health and Learning Disabilities Data Set

The post holder will join a research group led by Dr Crawley and based in the Centre of Child and Adolescent Health within the School of Social and Community Medicine. The job will start on the pt of May 2016 and is full time until April 2020 reducing to part time (2 days a week) for 12 months after this.

For informal enquiries please contact Esther Crawley 0117 331 4088 or via email

 

[sarah darwins]

Month 19 - 60, full study

Ah jeez ...

I can't like your post, CountryGirl. It's just too dispiriting.