Energy Conservation Management for People With Multiple Sclerosis–Related Fatigue: Who Benefits? (Blikman et al, 2019)

I haven't come across the much about energy conservation management in the ME/CFS literature so perhaps this might be of interest to somebody

 

Fewer disease benefits? Are they mad?

 

Looks like the same BPS attitudes as with ME.

 

Hm, interesting. If I unterstand correctly the same group previously found that people with MS related fatigue didn't benefit more from energy conservation management (ECM) compared to an 'information-only control condition'. (I couldn't find information in the abstract whether people benefited at all from either method.)

Blikman, L. J. et al. (2017) ‘Effectiveness of energy conservation management on fatigue and participation in multiple sclerosis: A randomized controlled trial’, Multiple Sclerosis Journal, 23(11), pp. 1527–1541. doi: 10.1177/1352458517702751.

https://www.ncbi.nlm.nih.gov/pubmed/28528565

But I haven't read these articles, so have no idea what the ECM they applied looked like and which information the information-only control group received. (Perhaps ECM generally just won't work better when instructed and supervised than it works when people are left alone with some vague information on pacing strategies -- except for those who "had a less negative perception of fatigue and who perceived fewer disease benefits and a higher discrepancy in social support'?)

Hard to conclude anything based on the abstract alone, though.

And that's what Rona Ross-Morris thought about the previous study and two other studies:

Moss-Morris, R. and Norton, S. (2017) ‘Aerobic exercise, cognitive behavioural therapy and energy conservation management for multiple sclerosis (MS) fatigue: Are three trials better than one?’, Multiple Sclerosis Journal, 23(11), pp. 1436–1440. doi: 10.1177/1352458517731159.

 

Maybe not exactly the same but very similar?

 

Reminds me of the 2014 slides by Julia newton suggesting that becoming bedbound in ME was facilitated by family and often for secondary gain. Obviously in both cases I would say theories derived from a prejudice person sitting at a desk rather than actually being present and supporting sufferers and families in their struggle. Unfortunately if there’s any unexplained aspect to fatigue the BPS lot are in there with their ridiculous explanations and interpretations across illnesses, it’s just more damaging in ME because they’ve essentially blocked the biological research which fortunately MS is predominantly getting, even though their fatigue research might be naf.

I do follow the MS society on Facebook and they do seem to have a much more positive experience of exercise interventions and exercise in general than ME, there are regular reports of patients finding a gym really helpful etc. So studying exercise as a minor support in the context of serious progressive illness isn’t nearly as controversial as the way the same approach is applied to us. I think that you can see the general beliefs in RMM that GET & CBT are useful tools to use and pacing isn’t useful as in ME they say the same and probably PACE was Designed to prove this whatever AFME believed , but in ME the PEM issues are obviously not respected enough..

 

I am surprised they thought it necessary to ask "Who benefits?". The answer should have been self evident. All they needed to do was look around the table.

 

What?!?! I thought Julia Newton was one of the good guys...

 

It was just a slide at a talk, there wasn’t time to actually discuss bedbound ME and it did say it was a disaster to be bedbound but the slide did have those sentences. I tried to ask on their Facebook for clarification at the time but there wasn’t response. I think that julia newton looks at both the biomedical research & The BPs as she’s attended PPS events with the likes of Vincent deary (wessely colleague ) up in the north & is interested in exercise. She’s probably also done some very worthwhile biological & other fatigue research too with respected people like Leonard Jason and some think she’s one of our best. The UK climate has always been more nuanced on the PS role and I suspect then her actual contact With the severe was minimal and so this seems thinking simply borrowed from the bps school from someone who perhaps believed fatigue should not be chronically incapacitating. Since then Newcastle have done a small severe ME study which found profound levels of illness, the approach still seems more about how to rehabilitate it rather than treat it from my perspective but I didn’t see any repeat of these ideas.

 

@MSEsperanza, without delving into this study, and a more thorough compare and contrast - yes certainly quite similar beliefs as seen from the BPS view of ME. Although, I will use one of the terms @Cinders66 used above because I think it explains some of the BPS position, and say the researchers/clinicians don't seem to believe they can rehab MS, as they think they can with ME.

 

These researchers note pwMS do better with the ECM program - whatever - if they perceive "fewer disease benefits".

I hope people with MS who read this study feel insulted, because it is insulting to all with diseases.

There is still this idea disease is a lifestyle choice. How do these "scientists" reconcile this with higher rates of suicide among people with debilitating chronic diseases?

Maybe they are projecting - they see people who are very ill as sly malingering foxes.

So take a person with goals and aspirations, accomplishing life's benchmarks, and looking forward to more to come, and hit them with ME (or MS, etc). It stops them in their tracks. Much, much, much is lost. The list is long and may continually grow over time. These losses far outweigh any so-called "gains".

 

I would have thought suicide was the ultimate in lifestyle choices.

 

Well, yes, @Wonko, I thought about that. But, I wouldn't call death a lifestyle. Though it is a choice in some circumstances.

I'm trying to say of course that the so-called "gains" for pwME, pwMS etc. are crap to non-existent compared to a normal healthy life.

How dare these people who are supposedly healthy, slag on people who through no fault of their own are very ill!

 

I did a quick Google of the use of the term "secondary gains" in relation to illness. It appears to be a term taken from psychoanalysis (Freudian or otherwise) and usually referred to the "gains" a conversion disorder patient experiences from being ill.
I feel like by now I should no longer be ideas suprised from Victorian pseudoscience are still floating around in contemporary research papers but the fact that such a stigmatising concept has survived into modern usage and is still being used to blame sick people for not getting better really shocked me.

 

If my recall is correct, Freud was a cocaine addict. What a strange world we live in where long-standing harmful psych theories may have been built on faulty thinking - someone under the influence of mind altering drugs.

 

Personally, sitting here twirling my cane, in my top hat, using my monocle to examine the piles of gold lying around my marble mansion, while the servants prepare a light snack of lobster stuffed caviar for my pet dragon, I find the idea of secondary gains absurd and insulting.

 

Article about Freud and his cocaine habit:


http://thechart.blogs.cnn.com/2011/07/22/sigmund-freuds-cocaine-problem/

ETA: This is a bit commercial - on CNN, but several of the sites about Dr. Freud include commercials...hmmm.....

 

I really want the authors to explain, in painful detail, what they mean by disease benefits. Or anyone who promotes this idea that pervades the psychosocial ideology. Those mythical and oh-so-wonderful secondary benefits of illness.

Because the few times I have seen them explained, they amount to absolute Alice in wonderland delusion.

So much of the psychosocial model is implied and ambiguous. I think there is value in having them spell it out once and for all, to dispel the curtain of deceit and have them say what they truly mean. It's clear that at its core is an understanding that psychosomatic medicine has fallen out of favor but that deceit, with no effect on intent, is the way to go around the illegitimacy.

This works in politics but it really should not work in science. How do we get the unspoken truth to confess its true intent?

 

Once again this illustrates the psych researchers world: feeling superior to sufferers and lacking empathy and well as IQ. This is why I can't bring myself to read any more of their mindfu****g tripe.

 

I certainly can believe that privileged nobles can receive some form of secondary health benefits. To a point, but that takes great wealth and privilege. Without those you have destitution, suffering and death.

So no surprise that it would originate from psychotherapists for the rich and privileged, as no one else could have seen that tiny, misleading, slide of unreality. Compared to a fulfilling life in wealth and privilege it's still complete crap but it takes a serious case of living-in-a-bubble to see benefits there, as long as you are wealthy and privileged. Proponents of that delusion generally leave that part out, that "all other things being equal" that is supposed to apply only as a thought experiment, not something that translates in the real world.