New Crawley research? MOrPH-CFS

I don't remember seeing anything about this previously:

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/

The above page also includes this:

I wonder if they'll try to justify a definition of recovery which just means 'filling in a few forms a bit more positively' or something?
'Do you feel empowered to live a meaningful life?'

OT: I'd previously said Crawley is now on an NIHR review board choosing which projects to fund. The process she was connected to approved this:

DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome
(CFS/ME)
Fund
Conditional

https://www.nihr.ac.uk/funding-and-support/documents/Fellowships/NIHR DRF 2016 Public Minutes.pdf

There are some details of that here:

 

If the kids come up with any definition of recovery other than 'being able to do the same as my healthy friends can' then they've been manipulated.

 

I guess it's fair enough to ask them - very inclusive and patient-centred, and all that - the trouble is, it implicitly suggests that recovery might be something other than totally well, or just as you were before you became ill. Seems like a bit of a trick question.

 

Trouble is it presumes the kids are qualified to answer what seems a simple question, but it reality is not. If this exercise was being undertaken by a respected and capable scientist, to help them arrive at sensible answers, I would think it fine; but the 'if' at the start of my sentence is the issue.

 

I m struggling to think how these ideas for neuro-linguistic programming could have been arrived at. Any ideas anyone?

 

Crawley did say she might develop a CFS/ME measure of severity (if she could get the funding)
again by asking the children:
(all things SMILE can be found here: https://meagenda.wordpress.com/category/dr-esther-crawley/)
From discussions with the REC on SMILE:
"
"Our protocol makes it clear that CFS/ME in children is not sufficiently close to CFS/ME in adults to mean that research in adults could be extrapolated to children."

and yet:
"
Some of the activities do not relate to young people (especially for the younger participants) e.g. Q4 pushing a vacuum, bowling, playing golf, lifting or Q5 carrying groceries, Q13 time spent on work, Q22 normal work. This needs to make items more young person focused or add a column to say “never done this”.

Thank you for your thoughts on this. We initially tried to use the CHQ on children
(developed for children but not tested head to head with the SF36) with CFS/ME but
they told us the activities were not relevant and it did not adequately reflect their
disability. We therefore changed to the SF36 on the request of the children in our service
and have now used this for 6 years in over 1000 children with CFS/ME. We rarely have missing data on this reflected in our publications.
We understand that changing the SF36 has in the past provoked the threat of legal action and we
remain concerned about changing a validated inventory that we have already used extensively on this cohort both clinically and for our previous research.
There are risks to interpreting findings and comparing with other published work if we change the inventory.

During this study we will examine young people’s views and understanding on completing the SF36 (and other inventories) and will be able to find out if there are issues over the interpretation of the questions.
If there are, we intend to use this to apply for further funding to develop a CFS/ME measure of severity.
We would respectfully request that we are allowed to continue to use this well
recognised and validated inventory in this group of patients."

And of course don't forget "children don't want biological measures" --- Esther Crawley 2016 CMRC conference

 

(with respect to MORPH-CFS study being run 'with the help of the Bristol Biobank' http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/ )


Let me remind you all about this 'Biobank'*-

https://proposals.epi.bristol.ac.uk/?q=node/120290


"We will contact all patients who have contributed data (2006-2012), and all new patients (2012-2017) attending 19 specialist CFS/ME services, to collect saliva samples (by post) and extract genomic DNA (~9,400 samples)."


It would be good to know just how many NOD patients were contacted in this way and asked if they would contribute samples to this 'Biobank' *, and also how many of them have subsequently contributed samples to it.


*Not to be confused with Nacul and Lacerda's UK ME/CFS Biobank

 

Esther12 drew attention to this…..

https://www.nihr.ac.uk/funding-and-support/documents/Fellowships/NIHR DRF 2016 Public Minutes.pdf

……. and the fact that Esther Crawley is on the NIHR review board.

A bit off track but it’s interesting to see which projects are being funded and which have been refused funding by NIHR – some examples of each -

Funded

· Depression in paediatric chronic fatigue syndrome (CFS/ME)

· Detecting early signs of relapse in psychosis using remote monitoring technology

· Good practice guidance for the prediction of future outcomes in health technology assessment

· Informed consent and proxy decision making in research involving adults lacking capacity: development of an intervention to support proxy informed decision making, set within ethical and legal frameworks

· Feasibility of a low-cost, co-produced complex intervention to reduce workplace sitting time in different workplace settings

Rejected

· Improving the monitoring and analysis of harm outcomes in phase II and III pharmacology trials to facilitate early detection of adverse drug reactions (ADRs)

· Development and feasibility testing of an intervention: To facilitate the inVolvement of OLder patients with muLtimorbidITy in decisION-making about their healthcare during general practice consultations (VOLITION)

· Developing an alternative to the use of forced medication on psychiatric wards

· What is stopping middle-aged men seeking help when they feel suicidal: a qualitative study

· Increasing Public Access Defibrillation Use in Outof-Hospital Cardiac Arrest

· Investigating Reduction of the OTDO (On The Day Operation) Cancellations to Improve Patient Experience and Productivity in Elective care among NHS Acute Care Providers in England

· The role of maternal symptoms in the identification and management of iron deficiency and anaemia in pregnancy

Of course, we don’t know the reasons why some studies were accepted and some rejected, they are not given here. It could have been for the very best of reasons.

 

I sincerely hope that any definition of recovery also has an extended timeframe (YEARS) of significant, sustained and measurable improvement before the patient is deemed to have recovered!

 

Hopefully there will be some switched on children then, who tell her they want to be able to walk and run play just as energetically and for as long as the used to, and want it to be measured properly rather than being asked stupid questions.

Edit: Sorry, just realised I dived in when you actually asked Jonathan, but I was just a bit incensed at the way EC does seem to be trying to sidle across to the biomedical side.

 

I mean in theory those are both very worthwhile research projects. Especially, the research on viruses, which seems like an especially promising. But also the research on recovery, because recovery in children might not be that simple - perhaps they improve in some regards but not others, or the improvement doesn't last, or they go through episodes of relapsing.

I even think the research on anxiety and depression in adolescent ME/CFS is good. Being an adolescent with ME is very, very difficult, and the rates of anxiety and depression would be pretty high as a result. It's important they get the help for that too. As long as the research isn't trying to show that ME is psychosocial (which is something that usually causes the anxiety and depression) but I don't think it looks like that study is trying to do that. Depression has been well and truly ruled out as a cause of ME by a lot of evidence.

What'll determine if it's good research is whether they use good methods, and whether their research gets replicated by other people. What we really really need, though, is more research into the biology of ME. It's good they're doing a bit of that with the viruses study.

 

If Esther Crawley is involved, the methodology will probably be very poor - she has been very consistent in producing low-quality research. And I can't imagine she would seriously look for viruses, though I'm not sure she's savvy enough to know how to sabotage research to get a false negative result instead of her usual false positives.

She only does psychosocial research. Her sales pitch for the MEGA project involved a lot of attractive buzzwords, but it boiled down to a lot of psych questionnaires for mildly impaired patients who don't meet conventional ME/CFS criteria.

 

Yeah. Well, hopefully if she does bad research it won't get replicated or taken seriously by the broader scientific community. I highly doubt, though, that the virus study has been started with the intent of sabotaging it.

And I don't know much about the MEGA project, but isn't it studying the biology of ME? Almost all of the people on its team do biological research, and it's got patient representatives.

 

True. It seems like a situation where you'd want to establish a baseline for honesty by asking something like, "How do you like this (flavorless) cake I made especially for you?"

 

That was the lip service, but the details indicate that biological research is more of a "maybe some day with more funding" proposition, with the core funding being proposed primarily to finance the collection of questionnaire responses. They aren't going to include homebound or bedbound patients, and will not commit to using an acceptable criteria of ME/CFS, primarily due to defining PEM as post-exertional "stress" rather than an exacerbation of neurological, immunological, and/or muscular symptoms.

The proposed lead investigators of the project were Peter White and Esther Crawley, both long-time psychosocial proponents who habitually employ poor methodology and substantial spin to guarantee positive results. Peter White dropped out of the project, possibly due to the protest of his involvement, but Crawley seems to still be intending to lead it - it is her project. Undoubtedly some of the other people involved create quality research, but that would be unlikely to happen with Crawley controlling it, especially if their expertise is not being used and research primarily involves psych questionnaires.