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

[K22]

Not surprising I guess. Crawley and White never have to crowdfund I notice.
Goodness knows how much money the UK state is pumping into management & rehabilitation studies. What is it so far, I don't know the individual Costs but they have funded FINE, PACE, PACE FOI blocks, GETSET, the Collins /Crawley NIHR NHS management research in adults & the adolescents research which bore its first fruit this week (I think combined cost of that alone was £1m+) & now FITNET. Last CMRC conference we were told how lucky we were to get a £200,000 biomedical research project Funded. Maybe lucky indeed with the money pouring elsewhere. What is surprising is that PACe had such weak results but we are getting round 2.

 

[Kati]

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

What, it's not in the job descriptions to fully disseminate research findings in media, and answering FOI requests? How naive of them...

(Dripping sarcasm in case you didn't pick it up)

 

[K22]

Do you think we might see some state funded severe ME research ever? Not this type I don't mean, I think there is a bespoke severe ME management research project that might Also be state funded going on right now but that's all.

 

[K22]

As it will likely be on very broadly defined tired kids I think a subgroup might benefit from rehabilitation interventions, maybe even a few with CFS do. What we don't have is the well funded, rounded research strategy like MS where their "management stuff" is very minor compared to the medical research.

 

[jimells]

Did Crawley forget to mention the "FITNET" trial to the CMRC as well?

This trial hasn't started yet. Maybe there is still time to throw a few wooden shoes into the works...

 

[SilverbladeTE]

Not surprising I guess. Crawley and White never have to crowdfund I notice.
Goodness knows how much money the UK state is pumping into management & rehabilitation studies. What is it so far, I don't know the individual Costs but they have funded FINE, PACE, PACE FOI blocks, GETSET, the Collins /Crawley NIHR NHS management research in adults & the adolescents research which bore its first fruit this week (I think combined cost of that alone was £1m+) & now FITNET. Last CMRC conference we were told how lucky we were to get a £200,000 biomedical research project Funded. Maybe lucky indeed with the money pouring elsewhere. What is surprising is that PACe had such weak results but we are getting round 2.

The government and its scumbag supporters need vindification for their mad selfish compassionless and unscientific IDEOLOGY
this is why they get funds, just like funding phrenologists to prove that Jews and Negroes were non-civilized and thus deserved to be slaves or wiped out...not so long ago that lunacy happened...people's are people then and now and do that same things because they are much the same

One of the things that's really dangerous in the UK is the home office minister is married to the man who runs Group 4 security, and they want to replace cops and prison officers with corporate G4S officers....
Next step: Dachau MKII ! Rehhwbilitate habitual criminals and malingerers with harsh treatment
Followed by Belsen and Auschwitz MK 2 a decade or two laterx it is an inevitable slide to the bottom of the toilet bowl

Most people simply dont get how vastly the political and moral landscape of our countries has warped :/
The WW2 generation fought to change and stop such inhumanity, but they are gone

 

[sarah darwins]

Got to hand it to this mob, they know how to mount a campaign. In the space of a week we had the Crawley "1 in 40 young people with cfs" 'research', with all the attendant, nicely arranged news coverage. Then the appearance on Woman's Hour (how long in advance was that one set up?) and now this announcement. Malcolm Tucker couldn't do it better.

 

[worldbackwards]

Oh, and you gotta love the new acronym MAGENTA? Obviously, we must have an acronym!

I was hoping for Cognitive and Rehabilitative Adaptation Processes.

 

[Snowdrop]

Horrible, tough situation. EC tends to creep up on one like the Spanish Inquisition. And @SilverbladeTE is most probably right that she is quite safe b/c doing the bidding of the politicians. And I do think it's being done with their eyes open.

There are only two scenarios I can think of to turn this around and neither are very likely.
Terrible maybe but if a few well place people came down with severe ME there might be a change of heart.
OR if there were out there some UK journalist who was willing to make this a cause celebre. We can then nominate them for a Samuel Johnson award.

I think that EC believes she can do what she likes with impunity. Maybe putting up the heat on the relevant politicians. . .

 

[Old Bones]

There are only two scenarios I can think of to turn this around and neither are very likely. Terrible maybe but if a few well place people came down with severe ME there might be a change of heart.

I, too (admittedly, rather guiltily), have considered the same scenario, although I wouldn't wish severe ME on my worst enemy. So, with "tongue firmly planted in my cheek", my nominations for individuals with a high enough profile to catch the public's attention, were they to become ill with ME, are as follows: in the UK, the Darling Duchess; in the US, one of Bill and Melinda's kids (a good way to gain access to their billions for medical research); and in Canada, PM Selfie's lovely wife. Please re-read "tongue in cheek" qualifier above before responding with outrage.

Edit in italics to make my intent more clear.

 

[Sasha]

Can we please not nominate named individuals to get sick, tongue in cheek or not?

 

[halcyon]

Can we please not nominate named individuals to get sick, tongue in cheek or not?

It is a fun thought exercise though. I often imagine what would happen if one of the BPS crew leaders came down with the disease. Would it transform the field? Or would they simply be ostracized and cast out with the rest of us heathens.

 

[Old Bones]

Can we please not nominate named individuals to get sick, tongue in cheek or not?

Please accept my apologies. I thought my "tongue in cheek" reference (twice) would make it clear I didn't mean the nominations. My intent, rather, was to indicate the high profile a sufferer would require to get our illness the attention, and funding, it deserves. If my ill-advised attempt to stress this point is considered in poor taste by the majority, perhaps the post can be deleted by a moderator.

 

[Countrygirl]

It is a fun thought exercise though. I often imagine what would happen if one of the BPS crew leaders came down with the disease. Would it transform the field? Or would they simply be ostracized and cast out with the rest of us heathens.

Cast out with the rest of us heathens, I expect.

One local doctor phoned me to ask for advice as he was sure that he had the disease he didn't believe in. He told me that he didn't dare let his colleagues know as they would treat him with the same contempt with which they regard their patients with ME. One further nugget was that he said ME patients were regarded with even more 'contempt' than people with mental illness. We have a very enlightened bunch of medics in this neck of the woods.

So, yes, should Prof Trudie C develop ME, then she will be become one of the Untouchables.

 

[Sasha]

Please accept my apologies. I thought my "tongue in cheek" reference (twice) would make it clear I didn't mean the nominations. My intent, rather, was to indicate the high profile a sufferer would require to get our illness the attention, and funding, it deserves. If my ill-advised attempt to stress this point is considered in poor taste by the majority, perhaps the post can be deleted by a moderator.

Thanks, Old Bones. You should be able to edit your own post (go to the post and under the text box, you should see "Edit".

 

[jimells]

It is a fun thought exercise though. I often imagine what would happen if one of the BPS crew leaders came down with the disease. Would it transform the field? Or would they simply be ostracized and cast out with the rest of us heathens.

One of the first and most important things I learned as a young person joining the "world of work" is that no one is indispensable. I can't remember when I figured out that we are all disposable and society doesn't give a rat's ass about any individual. We are just cells in the body of society waiting for the apoptosis signal. If Sir Simon acquired bed-bound ME, he'd just be shipped off to a nursing home and forgotten, like anybody else.

One local doctor phoned me to ask for advice as he was sure that he had the disease he didn't believe in. He told me that he didn't dare let his colleagues know as they would treat him with the same contempt with which they regard their patients with ME. One further nugget was that he said ME patients were regarded with even more 'contempt' than people with mental illness. We have a very enlightened bunch of medics in this neck of the woods.

It sounds like doctors are afraid of their own associates and institutions. How sad.

 

[waiting]

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.

Agree with @Sasha, @Purple.

Also, there is a subset of ME patients who have stunted heart rates (I believe this was shown in the CPET research) during exercise.

Imagine the damage to an ME patient forced to exercise (using a HR monitor) to a standardized healthy person's target heart rate that they can never reach.

 

[Roy S]

I wish there were stories like this in the media.

One local doctor phoned me to ask for advice as he was sure that he had the disease he didn't believe in. He told me that he didn't dare let his colleagues know as they would treat him with the same contempt with which they regard their patients with ME. One further nugget was that he said ME patients were regarded with even more 'contempt' than people with mental illness.

 

[Old Bones]

Also, there is a subset of ME patients who have stunted heart rates (I believe this was shown in the CPET research) during exercise.

Imagine the damage to an ME patient forced to exercise (using a HR monitor) to a standardized healthy person's target heart rate that they can never reach.

Although I have never heard the term "stunted" with respect to heart rate, this was my experience in the early years. Chest pains took me to a cardiologist, and when my heart rate didn't increase as expected during a treadmill test, the cardiologist monitoring my results from another room popped his head into the exam room and said something like this: "It appears you are an elite athlete with a vigorous exercise program that is obviously working very well for you. My advice is to keep doing what you are doing." If only he'd known that by evening, I couldn't drive without resting the weight of my arms in my lap. By the following morning, my arms were so fatigued, I had to rest three times while brushing my teeth. It took days to recover. These days, I have the opposite problem -- moderately-severe POTS.

 

[Sean]

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.

It's even worse than that - their theoretical model has been falsified in no small part by the evidence generated in their own studies.

The PACE 2.5 year follow-up results, for example.