Trial Report REFUEL-MS - CBT/GET Digital Intervention MS-Fatigue

[rvallee]

We know people want better ways to manage their fatigue. If the results of REFUEL-MS show the programme can help improve fatigue, it’ll hopefully become widely available as routine NHS care.

Unnecessary if. They're doing it precisely in a way so that results don't matter and to make it available regardless. It's foot-in-the-door medicine, once it gets in, it never gets out. Treat it like vampires, never invite them in.

What's most baffling is that this is super generic and identical to every other such program. And they keep having to spend millions doing the same thing over and over again. At this point CBT and the generic idea of educational rehabilitation has to be one of the most expensive treatments ever, because they keep having to spend money on it long after it's been put into standard practice, even though all they do is the same old every time. They've really gone mad in this place.

 

[picasso]

digital self-management tReatmEnt for FatigUe in multiplE scLerosis

digital self-management tReatmEnt for FatigUe in multiplE scLerosis

great fat lie, sis

 

[user299]

Can someone from here contact a UK MECFS organization to see if they will write a formal letter to a UK MS organization with an expression of concern (indicating that this type of BS besets the MECFS research arena and will be a total waste of money)?

If they can write a formal letter and this is made public then the letter could be widely distributed, etc., may put pressure on MS orgs to oppose this.

can someone post this thread on twitter too?

 

[picasso]

https://forum.mssociety.org.uk/t/mi...research-at-the-heart-of-disability-cuts/9260 Interesting

 

[Trish]

https://forum.mssociety.org.uk/t/mi...research-at-the-heart-of-disability-cuts/9260 Interesting

It's a discussion on an MS society forum from 2016 about these articles:

The Misleading Research at the Heart of Disability Cuts | HuffPost UK Politics 1 It links to a longer report: http://www.centreforwelfarereform.org/library/by-date/in-the-expectation-of-recovery.html
Including this comment:

I’m worried that the MS Society seems to be funding this sort of work from researchers involved in causing problems elsewhere: “CURRENT PROJECTS Developing a biopsychosocial model and self-management treatment for fatigue in paediatric multiple sclerosis:” “Oct 2014 - Sep 2017 £76,279 Developing a biopsychosocial model and self-management treatment for fatigue in children and adolescents with MS. MS Society (Moss-Morris, R., Chalder, T., Heyman I., Hemingway, C.)” Department of Psychosis Studies | School of Academic Psychiatry | King’s College London This doesn’t look good to me.

 

[MSEsperanza]

It links to a longer report: http://www.centreforwelfarereform.org/library/by-date/in-the-expectation-of-recovery.html

It seems that link is dead -- new URL is:

https://citizen-network.org/library/in-the-expectation-of-recovery.html

Link to the PDF:

https://citizen-network.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

It's the excellent report by George Faulkner on the PACE trial -- see posts on the discussion thread 'Government and Insurance companies - establishing the BPS model', starting here.