Finally! Nunez et al (2011) CBT/GET studied in Fukuda-CFS [outcome as expected]

[WillowJ]

I was guessing that "exercise counselling" meant the doctor said something like: "Are you doing any exercise? Excercise is known to help people with fatigue. You should start slow, say 30 minutes brisk walking twice a week" [or if the doctor is better informed, "2-5 minutes two or three times a week"], "and build up from there. This should improve your sleep as well." And maybe, "Call if you have any problems."

(This is the exercise counselling I received from my rheumatologist who supposedly treats CFS.)

 

[Dolphin]

I was guessing that "exercise counselling" meant the doctor said something like: "Are you doing any exercise? Excercise is known to help people with fatigue. You should start slow, say 30 minutes brisk walking twice a week" [or if the doctor is better informed, "2-5 minutes two or three times a week"], "and build up from there. This should improve your sleep as well." And maybe, "Call if you have any problems."

(This is the exercise counselling I received from my rheumatologist who supposedly treats CFS.)

If it was on its own, I would think that. But the way it's written, where there are comparing it to GET, I'm not sure. I only know one person who has read the paper who didn't give that impression from her summary of the paper (on a private list).

Hopefully the paper is clear on this as it makes a huge difference what the comparison was (although before and after data on GET is still interesting).

 

[eric_s]

This morning i was feeling quite ok. I then took a taxi to the train station, missed my train by 2 minutes, had to walk across the station to try to exchange my ticket, walk back to buy a new ticket. Then spent the afternoon in the train, walk through another station, carry my luggage up the stairs to the elevator. Now i feel like ..., my eyes look glazed over, i'm dizzy and almost starting to shiver.
So much for "exercise is good for you". The arrogance of the "exercise advocates" is really unbelievable. Is it so hard to listen to us or at least look at one of us after a physical effort? I think a blind person could see the bad effect it has... It might not be the same for everyone, but i'm sure many react like me.
At least one study that seems to get it.
Sorry, venting some anger here, but i just don't get how some people can believe telling us to exercise will get us better, when most of us were living active lives before CFS and now can't tolerate it anymore.

 

[WillowJ]

model trumps data. the patient in front of me is anecdotal data. health authority and medical training is to be believed over patient in front of me.

The problem with medical training is it teaches doctors to diagnose and treat via formulae and checklists. Not by collecting and evaluating (and re-evaluating) data.

 

[WillowJ]

If it was on its own, I would think that. But the way it's written, where there are comparing it to GET, I'm not sure. I only know one person who has read the paper who didn't give that impression from her summary of the paper (on a private list).

Hopefully the paper is clear on this as it makes a huge difference what the comparison was (although before and after data on GET is still interesting).

so it might be the pacing someone mentioned, not the lazzes-faire exercise advice resulting in pacing via the patient's common sense?

 

[Dolphin]

so it might be the pacing someone mentioned, not the lazzes-faire exercise advice resulting in pacing via the patient's common sense?

Well maybe it is something that involves patients being warned not to exercise too much. I don't know what it is but my impression is it isn't what you guested (which lots of rheumatologists over here would also say: they tend to say FMS and CFS are similar and then give FMS-type exercise advice). Hopefully we can stop guessing soon as somebody will tell us.

 

[WillowJ]

is "start with 30 minutes brisk walking" appropriate for FM? I'm not sure I know anyone with FM who doesn't also have or probably have ME.

I just about had to pick up my jaw off the floor when she followed up "start slow" with "30 minutes brisk walking". If I could do that just for starters and be perfectly ok, I'd consider myself in an awfully good remission.

 

[Dolphin]

is "start with 30 minutes brisk walking" appropriate for FM? I'm not sure I know anyone with FM who doesn't also have or probably have ME.

I just about had to pick up my jaw off the floor when she followed up "start slow" with "30 minutes brisk walking". If I could do that just for starters and be perfectly ok, I'd consider myself in an awfully good remission.

Ok, that might not be the standard FMS advice. But for example I remember one woman told me she saw a rheumatologist who said start at a 10 minute walk and increase by 1 minute every day. And generally over here rheumatologists are big into recommending aerobic exercise for FMS. And giving the same advice to ME/CFS patients who attend them.

I have come across a few people who presumably have "pure" Fibromyalgia who seem to be able to cope reasonably well with exercise at a quantity people with ME/CFS couldn't generally cope with e.g. 45 minutes walk every day and didn't feel bad after it.

 

[Cort]

Paper attached

I attached the full paper

 

[Dolphin]

Thanks Cort.
WillowJ was basically right/not far off with her guess.

The control group received usual CFS therapy including
exercise counselling and conventional pharmacological symptomatic
treatment [19, 28]. Exercise counselling was performed
by personal interview with the same physiotherapist.
The objective was to provide activities that restored the
patient's ability to do sustained physical exercise as far as
possible. The program included three daily 10-min sessions,
performed in separate periods, with adapted aerobic exercise,
including walking and home-stretching exercises.

 

[WillowJ]

Ok, that might not be the standard FMS advice. But for example I remember one woman told me she saw a rheumatologist who said start at a 10 minute walk and increase by 1 minute every day. And generally over here rheumatologists are big into recommending aerobic exercise for FMS. And giving the same advice to ME/CFS patients who attend them.

I have come across a few people who presumably have "pure" Fibromyalgia who seem to be able to cope reasonably well with exercise at a quantity people with ME/CFS couldn't generally cope with e.g. 45 minutes walk every day and didn't feel bad after it.

ok, thanks for the answer. I didn't know what was reasonable for FM-only, although I did know that exercise could be more useful for them. I agree that many doctors who are familiar with FM, such as rheums, tend to think of CFS as a variety of FM and give same advice. Same meds, too, and the meds part is useful on this side of the pond for someone who actually does know about FM. Not sure what the FM situation is there.

Thanks for the paper, Cort. I will have to look at it later since I should be trying to be alseep.

Three daily 10-minute sessions, wow. At least they broke it up.

 

[WillowJ]

CBT contents included

1. psychoeducational interventions to explain the multi-factorial character of CFS,
2. progressive muscle relaxation procedures (Jacobson) to identify muscle tension,
3. sleep hygiene patterns to enable entry into and maintenance of phase IV sleep,
4. detection and control of verbal and non-verbal pain-inducing attitudes,
5. cognitive restructuring to modify non-adapted and catastrophic thought patterns,
6. information about the relationship between vegetative and anxiety symptoms
7. modification of type A behavioural patterns
8. improvement in assertiveness
9. patterns to increase attention and memory
10. sensorial focalization for sexual inhibition, and
11. disease relapse prevention

[16].

Yes, items 7 and 8 are internally inconsistent.

on 10... Tell me again: why are people trained in Freud, practicing medicine?

16. Gods Sieso T, Gmez-Gil E, Fernndez-Sol J, Fernndez-Huertas JM. "[Significant increase of functional status and decrease of fatigue in patients with chronic fatigue syndrome after completing cognitive behavioural group therapy]." Med Clin (Barc). 2005 Oct 22;125(14):556. Spanish. No abstract available. PMID: 16266642

Some of the same authors.

 

[eric_s]

God save us from those people... or better yet, we do it ourselves. I agree, Willow, it seems to be what separates the really good doctors from others. The good ones are able to really look at what's in front of them and make up their own minds. Many can't do much more than apply what they have learned in their training, more or less like a machine. And if what is taught does not work or nothing is taught at all, we get the situation we know.

 

[Enid]

CBT/GET studies seem to me to be flawed in the first place - they are based on a "static" illness - anyone with ME/CFS over time knows the fluctuation of symptoms and that when bedbound one couldn't even participate anyway.

 

[Dolphin]

Useful quote

Useful quote:

Although some studies cautiously conclude
that exercise therapy is a promising treatment for CFS
[14], the results of our study tend to support the somewhat
controversial findings of Twisk and Maes [43] that the
combination of CBT and GET is ineffective and not
evidence-based and may in fact be harmful in some
patients, a view supported by various surveys carried out
by patient advocate groups [41].

 

[WillowJ]

very good quote, Dolphin

as long as we're collecting GET-negative studies on this thread, I'm pretty sure Jason did one, too, many moons ago. His ability to evaluate the data and develop a new model demonstrates he is a true scientist.

 

[Dolphin]

as long as we're collecting GET-negative studies on this thread, I'm pretty sure Jason did one, too, many moons ago. His ability to evaluate the data and develop a new model demonstrates he is a true scientist.

Lenny is a great asset.

I think you are refering of this study:

Jason, L.A., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, M.G., Donalek, J., Reynolds, N., Brown, M., Weitner, B.B., Rademaker, A., & Papernik, M.(2007). Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296. Retrieved from http://www.cfids-cab.org/cfs-inform/CFStreatment/jason.etal07.pdf

 

[Dolphin]

Little change on fatigue scores but differences on other scales

One thing I noticed is that there was no difference in the Fatigue Impact Scale (0-160) either across time within the intervention groups or between the intervention groups:

There were no significant differences in FIS scores, which were 137.39.6 and 135.710.5 at baseline and 139.28.3 and 137.410.1 at 12 months in the intervention and control groups, respectively.

while there were differences on other outcome measures and symptoms.

This is something I keep an eye out for after it was pointed out to me by Ellen Goudsmit and probably others when I was in my early stages of reading: many trials in the field only measure one symptom fatigue, but it's not sufficient to tell the effect of treatments in ME and CFS.

 

[WillowJ]

Lenny is a great asset.

I think you are refering of this study:

I was thinking it was a lot older, but that does look like the one I was thinking of, thanks. It contrasts a) cognitive therapy (without activity component) with b) CBT (which included a GET component) and with c) relaxation, as well as an d) activity program without cognitive therapy.

 

[Dolphin]

It contrasts a) cognitive therapy (without activity component) .

Or more specifically with a pacing component:

Rather, this approach emphasizes pacing activities,
which involves trying to remain as active as possible while
avoiding over-exertion. Low effort activities that are not
associated with symptom flare-ups are selectively
increased while symptom-producing activities are
decreased or managed more effectively. For instance,
activity pacing was applied to completing job or household
tasks in energy-conserving small steps that were less likely
to produce symptom flare-ups