Fibromyalgia and chronic fatigue syndrome: management issues (Bourke, 2015)

[jimells]

So the review acknowledges the existence of new physiologic research and then ignores it? I hope these fools keep writing this rubbish - such obvious academic fraud will make good evidence in court.

Sir Simon is afraid of bed-bound patients, but really, he should be afraid of the lawyers. I think I see some fins cutting through the water, headed his way...

 

[Strawberry]

patients allocated to pragmatic rehabilitation (n=95) had significantly improved fatigue (effect estimate -1.18, 95% confidence interval -2.18 to -0.18; P=0.021) but not physical functioning

How on earth can someone have "significantly improved fatigue" with no improvement in "physical functioning?"

If I had improvement in fatigue, I would be highly functioning again.

Is that spin psychobabble?

 

[Dolphin]

How on earth can someone have "significantly improved fatigue" with no improvement in "physical functioning?"

If I had improvement in fatigue, I would be highly functioning again.

Is that spin psychobabble?

"significantly improved" refers to a statistical definition, that the p-value was less to 0.05 and so there is little chance they both came from the same distribution. However, one can have a statistically significant change, either improvement or disimprovement, with tiny changes which may not be of much practical significance (using significance in a different way now). [Researchers are often encouraged to publish the effect size to show the extent of change.]

 

[Strawberry]

I guess I was making the point that if I had any improvement in fatigue I would also have improvement in physical functioning. So unless their test subjects had improvement in fatigue but no improvement in DESIRE to physically function more? *headscratch* Dunno.

 

[SOC]

How on earth can someone have "significantly improved fatigue" with no improvement in "physical functioning?"

If I had improvement in fatigue, I would be highly functioning again.

Is that spin psychobabble?

I don't know WTH they mean in this paper, but I can give you an example of how it could be true from my own experience:

I finally learned (by constantly wearing an alarmed HR monitor) to pace sufficiently to avoid being constantly exhausted. At my worst, that meant I was in bed except for trips to the bathroom. Later, I was able to go downstairs for the day and sit in a recliner all day. I could say my "fatigue" was significantly improved because I wasn't constantly exhausted, but I had very little functionality. Over time, treatment has improved my functionality without increasing my fatigue level. I still get worn out very easily and PEM if I really overdo.

I can reduce my "fatigue" significantly, but only at the cost of losing physical functioning. It's not a question of improvement of fatigue leads to improvement in functionality. Far from it.

Note: "Fatigue" is not the same thing as PEM.

 

[Dolphin]

I guess I was making the point that if I had any improvement in fatigue I would also have improvement in physical functioning. So unless their test subjects had improvement in fatigue but no improvement in DESIRE to physically function more? *headscratch* Dunno.

Review of three CBT studies found though there was an improvement in reported fatigue, patients weren't more active

Psychol Med. 2010 Aug;40(8):1281-7. doi: 10.1017/S0033291709992212. Epub 2010 Jan 5.
How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity.
Wiborg JF1, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G.

So like you suggest, changes in fatigue sound important but perhaps particularly after behavioural interventions, may not mean much.

 

[alkt]

MDD = Major Depressive Disorder.

Ref. 90 is an empiric criteria study (Reeves et al., 2005).

Jason et al. found that 38% of the patients who had MDD satisfied the criteria for CFS



Lots of people quote these empiric criteria studies: not just something Julius Bourke does. And it's not always clear the empiric criteria were used to those that don't know where to look.

wasn't it wessley et al who deliberately included psychological cases into the mix with c f s to broaden the catchment and raise the profile of his own belief that all conditions that doctors cannot easily explain are therefore psychological .

 

[SOC]

So unless their test subjects had improvement in fatigue but no improvement in DESIRE to physically function more?

Hell no! It is most certainly NOT a question of not having the DESIRE to do more. It is a question of maintaining a healthy (for me) baseline that allows me to: 1) not continue to decline, 2) allow my treatments to work more effectively since I'm not overtaxing my body so that it cannot recover, 3) have some kind of normalcy without the constant unpredictable push-crash roller-coastering. I've worked out an activity level that allows me to be mostly reliable and consistent about my ADLs and my commitments to other people without PEM or excessive daily fatigue. I would LOVE to be able to do more. I have a strong desire to do more. I know if I do I will be back in bed many days a month unable take care of myself or perform my easy part-time job. That is not a better QOL, imo.

 

[Dolphin]

wasn't it wessley et al who deliberately included psychological cases into the mix with c f s to broaden the catchment and raise the profile of his own belief that all conditions that doctors cannot easily explain are therefore psychological .

Wessely and some other UK psychiatrists and psychologists have used the Oxford criteria which basically just require mental and physical fatigue. Many people think this could lead to the inclusion of some purely psychological or psychiatric cases as you suggest.

Wessely was part of the team who wrote the criteria along with others e.g. Mike Sharpe, Anthony Clare (RIP), Tony David, Peter White, etc.
http://www.ncbi.nlm.nih.gov/pubmed/1999813

 

[Snow Leopard]

"A new age has dawned"

Did you hear that, A NEW AGE!

Why then does the paper rehash outdated/disproved ideas and fail to provide high quality hypotheses?

 

[Valentijn]

I guess I was making the point that if I had any improvement in fatigue I would also have improvement in physical functioning. So unless their test subjects had improvement in fatigue but no improvement in DESIRE to physically function more? *headscratch* Dunno.

The psychobabblers equate ME with fatigue. To them it is the most important symptom. It is also completely subjective (self-reported), so it is an easy target. Thus CBT largely focuses on teaching the patient to believe they are not fatigued, with the promise that if they believe it, it will become the truth.

Then the patient is given some questionnaires. One is based solely on fatigue, and asks questions which are pretty much identical to the topics covered in the CBT sessions. They have been taught what the appropriate answers are ("I am not fatigued"), and some dutiful students write down those answers regardless of reality (which they have been taught is not real anyhow).

Other questionnaires are more difficult. The SF-36 Physical Functioning subscale, for example, asks which tasks patients can do. Some fudging is still possible ("Yes I can walk up a flight of stairs ... but will crash afterwards") but is a lot harder, especially since patients are not being taught that they can walk up several flights of stairs, or walk a mile, etc.

But the clearest distinction is with objective measurements. They never show improvement following CBT/GET in ME patients, even when spectacular improvements in fatigue are reported. Thus psychobabbler researchers prefer to omit objective measurements, and will use a subjective activity questionnaire instead. They can usually squeeze some small improvements out of those activity questionnaires, and will refer to the results as showing improvement in "physical functioning". If someone doesn't know better, they'll assume it was an objective outcome, rather than another useless questionnaire.

The Wiborg paper cited by Dolphin above includes the review of some papers which were even more misleading, because they mentioned the use of actometers and improvement in physical functioning. But in the original papers they didn't mention that the actometer results actually contradicted the physical functioning questionnaire results. Even in the review paper where they finally released the actometer results, they did not indicate that this contradicted the fatigue results, but rather concluded that actual levels of activity aren't relevant to curing fatigue.

 

[Dolphin]

@Maxwhd on Twitter just highlighted this article by Julius Bourke where he says

"Functional Somatic Syndromes and include Fibromyalgia, the functional gastrointestinal disorders and chronic fatigue syndrome ... are the bread and butter of liaison psychiatric clinics"

http://issuu.com/janeshara/docs/newsletter-winter2013-3

 

[Effi]

http://issuu.com/janeshara/docs/newsletter-winter2013-3

Irrespective of whether one chooses to lump [FSS disorders together under one name] or split [into subset categories], pain is of importance to these disorders. Not only is it the only symptom that is common to all FSS but it is arguably the most important insofar as that it is the most disabling and carries with it a significant risk of suicide.

(italics added by me)
This article goes by the title: 'The Brain in Pain'. Why is it that the psych department, when talking about CFS, always focuses either solely on fatigue, or on pain, both of which are not even the most disabling symptoms of CFS for most people. I sometimes wonder if they even (want to) know what CFS is. If they do, they're surely good at hiding their knowledge.

 

[Sidereal]

Why is it that the psych department, when talking about CFS, always focuses either solely on fatigue, or on pain

I would imagine it's because very little is known about biological mechanisms of chronic fatigue and chronic pain so they're low hanging fruit for psychobabblers who can waltz in and say something vague about "central sensitisation". Explaining objectively-measurable PEM and autonomic disorders is impossible so they just ignore those aspects of ME/CFS and pretend they don't exist.

 

[Effi]

I would imagine it's because very little is known about biological mechanisms of chronic fatigue and chronic pain so they're low hanging fruit for psychobabblers who can waltz in and say something vague about "central sensitisation".

So they choose to focus on the part that leaves the most room for fantasy and build their theory around that. Clever.

 

[A.B.]

So they choose to focus on the part that leaves the most room for fantasy and build their theory around that. Clever.

That is the niche of psychiatry and this particular branch of psychology. There isn't a single mental illness in the DSM for which a lab test exists.

There is the risk of creating self fulfilling prophecies by viewing poorly understood diseases as psychosocial problem. Psychiatry has shown mostly a lack of lack of interest in findings that cytokine and immune system activity could explain several so called mental illnesses.

Similarly, if the task of progressing the science in ME/CFS was given to the likes of Wessely, we would never see any progress in a hundred years.

 

[ukxmrv]

@Maxwhd on Twitter just highlighted this article by Julius Bourke where he says

http://issuu.com/janeshara/docs/newsletter-winter2013-3

That's an extraordinary confession to make about FSS being the "bread and butter of liaison psychiatry clinics"

Given the suffering of people with mental illness and the long delays in their treatment the confession that precious resources are being squandered in areas that are not helped by psychiatry is a serious one.