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Scary new paper on CFS and exercise

oceanblue

Guest
Messages
1,383
Location
UK
Re patients regularly attending outpatient centers, as discussed in this paper some studies were more home-based, but they don't seem to take it fully into account, especially when claiming that "home exercises have no disadvantages". Overall, they conclude that "[T]reatment sessions at the centre ⁄ practice should be limited in number and should be used to discuss and adopt the exercise programme with the patient. The exercise therapy itself should be done at home."
Thanks - but did they recruit house-bound patients into the study, or were they merely advising outpatients to exercise at home (it would be expensive and impractical to bring patients in for supervised exercise)?
 

biophile

Places I'd rather be.
Messages
8,977
Thanks - but did they recruit house-bound patients into the study, or were they merely advising outpatients to exercise at home (it would be expensive and impractical to bring patients in for supervised exercise)?
They don't seem to discuss house-bound patients specifically, but they do say that the FINE Trial involved home visits and "showed significant improvement (P < 0.05) in fatigue and physical functioning".(?!)

I don't know how they came to that conclusion, since the FINE paper itself indicates that immediately post-trial there was only a (rather small but still statistically significant) improvement in fatigue but not physical functioning, and no significant improvement in either fatigue or physical functioning at one year followup (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2859122).

In a rapid response letter the FINE authors later said they recalculated changes in fatigue based on Likert scoring instead of bimodal scoring and found that the earlier improvement in fatigue was maintained at one year followup. There was no mention of physical functioning (http://www.bmj.com/rapid-response/2011/11/02/fatigue-scale-0).

Perhaps there is a remote possibility that the authors of this recent systematic review (Van Cauwenbergh et al) extracted the FINE data and re-analyzed or combined it with Stulemeijer et al 2005, since both papers are discussed in the same paragraph on the issue of studies which used 10 individual sessions of CBT or GET, but the wording doesn't really suggest that is what they did.

More likely the authors have committed a common blunder: claims are made which are simply not supported by the cited reference, despite being a "systematic" review. This seems common enough for CFS papers in general to become naturally skeptical about all claims being made, but who has the time and energy to evaluate every single citation of every paper while reading it, isn't that supposed to be the peer-reviewers' job?! I only picked up the discrepancy because I'm already aware of the FINE Trial data.
 

Desdinova

Senior Member
Messages
276
Location
USA
Hum so they're part of a research group. I can't help but wonder how much real research with real patients especially ME/CFS patients?


http://translate.google.com/translate?hl=en&sl=nl&u=http://www.chropiver.be/welkom-wie.htm&ei=Qg7OT8v5LoGy8ASDyN32Cg&sa=X&oi=translate&ct=result&resnum=9&ved=0CGsQ7gEwCA&prev=/search?q=Deborah+Van+Cauwenbergh&hl=en&safe=off&prmd=imvnso



WHO ARE WE?

The Brussels-Antwerp research group consists of researchers from the Vrije Universiteit Brussel
and Artesis Hogeschool Antwerpen who carry out scientific research (rehabilitation) chronic pain and chronic fatigue.

Clinical care for these patient groups is provided by us in the University Hospital Brussels (Jette).

Below is the list of members of the team:




http://bodyinmind.org/primary-care-physical-therapy-treatment-of-fibromyalgia/

Jo Nijs holds a PhD in rehabilitation science and physiotherapy. He is a researcher and assistant professor at the Vrije Universiteit Brussel (Brussels, Belgium) and the Artesis University College Antwerp (Belgium), and he is a physiotherapist at the University Hospital Brussels. His research and clinical interests are patients with chronic unexplained pain/fatigue. He has (co-)authored more than 100 peer reviewed publications and served over 40 times as an invited speaker at national and international meetings.


http://www.researchgate.net/profile/Kelly_Ickmans/

Kelly Ickmans Vrije Universiteit Brussel · Human Physiology


http://www.c4n.be/Main page/C4N/Members/MFYS/Leden/Predocs/Margot De Kooning.html


Margot De Kooning
Vrije Universiteit Brussel
Department of Human Physiology and Sportsmedicine
 

Dolphin

Senior Member
Messages
17,567
Basic rules for letters for this journal:
Letters discussing a recent EJCI article should be received within 10 weeks of the article’s publication and should not exceed 400 words of text and 5 references.

Article itself:

Publication History
Accepted manuscript online: 25 MAY 2012 10:10AM EST
 
Messages
62
Location
Adelaide
For me, it was weight training that bought out my ME and started the whole downward spiral. I found for reasons unknown to me at the time I couldn't find the "oomph" to do cardio including in intervals, whereas weights I enjoyed so weights I did. But after a while, I went down hill, my strength started dropping, fatigue until eventually I couldn't do it at all, lots of hormonal problems as well and eventually being diagnosed with a goiter and then 6 months later CFS. When I improved after a pregnancy then relapsed a few years later, same thing in regards to my activity levels suddenly started dropping and going backwards because of increasing weakness and fatigue for no reason.. How the fudge graded exercise would help that beats me!
 

ramakentesh

Senior Member
Messages
534
Hi ramakentesh, the issue with OI and POTS is that building up the leg muscles can be done with weight training or similar load bearing exercise. It can be done in interval training style. The research is showing that the damage is done to us by exercise from primarily extended aerobic exercise, exactly what is prescribed in this paper. Bye, Alex

The papers by Dr Ben Levine for OI and POTS are exclusively about cardiovascular challenging exercises like rowing and running.

Im not syaing these findings are correct but just that the challenge the often cited view that all exercise is dangerous in CFS - at least in forms where OI and POTS predominate.
 

SOC

Senior Member
Messages
7,849
I have a serious concern with their suggestion of aerobic exercise, too. In my case, and I think this is true for many PWME, there is very little aerobic range. Exercise testing showed that I do okay in the low-level anaerobic range, but in the aerobic range (where aerobic metabolism takes over most of the energy production from anaerobic metabolism) there's very little capability. I shoot from low-level anaerobic to high-level anaerobic in about 3 minutes, meaning there's very little time spent in the aerobic range because there's no energy there to work with. This is not what fat, deconditioned looks like.

If I were to try to do any so-called aerobic exercise (walking, swimming, cycling) at this point, I would just shoot up above my anaerobic threshold in 3 minutes or less and be at the physiological place marathon runners are at the end of the race -- working at an intensity at which my body cannot produce enough energy by aerobic metabolism and has to rely on inefficient and waste/toxin producing anaerobic metabolism.

This is why I think it's idiotic to do any exercise-based treatments on PWME without doing exercise testing to discover these kinds of abnormalities. All the CBT-GET clowns assume, based on no data (or ignoring existing data), that PWME have normal exercise capability and are just not using it. All they'd have to do is take some actual physiological data (heaven forbid) from their patient groups, sort those with normal energy metabolisms from those with distinctly abnormal energy metabolisms, exercise them appropriately for condition, and report the results honestly. That's too much to ask, though, I guess. :rolleyes:
 

Dolphin

Senior Member
Messages
17,567
Just curious whether anybody has sent a letter in reply to this article and/or is working on a letter?

Somebody suggested I write a letter but before I start thinking about one I would like to know about any letters or draft letters to avoid duplication. It can take a bit of work to come up with the wording so I'd like to know in advance about any other letters.

Please PM me if you have done a letter/draft letter. Thanks.
 

barbc56

Senior Member
Messages
3,657
Oi!!

Aerobic exercise? That's ridiculous. :(

I did warm water therapy for a while which I have to say helped a bit but the problem was actually having the energy to get there. Even if someone offered to drive me, there would be times I would not have made it. The same thing happened when I was going to participate in a study on walking which was here at the University. Same with the Banabruk(???) study.

Studies do not always take this factor into account. Although many do cite the drop out rate, what about those patients who would never be able to participate, even if they wanted to.? Researchers need to either considered this factor, do separate studies on this subgroup, at least state that the population studied didn't include this subset of patients and/or very specific definitions about the patients who did participate.

I would be interested in seeing studies that do take the above into account but I have a feeling there are probably very few, if any. I am going to look for sources that have to do with experiment design. I have had several courses in this but tbh, I don't remember all of it. However, when I do read this information it comes back quickly. Usually.:rolleyes:

Barb C.:>)
 

Dolphin

Senior Member
Messages
17,567
Did they mention that all the GET studies were of patients able to regularly attend outpatient clinics, and so any recommendations would only apply to that profile of patients.
They say:

A disadvantage of this literature review is
that most studies admitted people with CFS who could come
independently to the hospital, what implies a certain degree of
physical activity. Those who were not able to walk or get out of
bed were automatically excluded, and therefore, it was not
possible to examine whether exercise therapy was effective,
ineffective or even harmful for a more seriously disabled group
of people with CFS.
---
The paper has more provisos than most reviews I've seen that recommended CBT and GET. Currently I'm thinking I'll work through more items on my "to do" list rather than replying. Also, if anyone else replied, it might stand out more than me writing as I might be repeating myself. But if anyone does try and write, I should be willing to look over a draft.
 

Dolphin

Senior Member
Messages
17,567
A few observations/comments for what they are worth:

From Introduction:

Patients with CFS are capable of performing mild to moderate efforts
(40% VO2 max) without the symptoms manifesting themselves [12].

Wallman KE, Morton AR, Goodman C, Grove R, Guilfoyle AM.
Randomised controlled trial of graded exercise in chronic fatigue
syndrome. Med J Aust 2004;180:444–8.
(can't remember what the reference actually says)

They don't inform readers about some other studies involving the corresponding author:
Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolledclinical trial.
Clin Rehabil. 2008 May;22(5):426-35.

Pain inhibition and postexertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an experimental study.
J Intern Med. 2010 Sep;268(3):265-78. Epub 2010 Mar 3.


Clinicians working with people with CFS know that GET is an effec-
tive treatment, but they do not know how to apply GET to their
patients.
and

Clinicians working with patients with CFS know that GET is an effective treatment,
but they do not know how to apply GET to their patients.

Do they? Given the corresponding author is in Belgium, this could be an excuse to quote the Belgian clinic data.
----
There is lots of talk about exercise being shown to help "physical functioning"/"physical function". Although at one stage it is explained how this is done (questionnaires), it's not made sufficiently clear that the reported levels of functioning could be biased/unreliable.

(will add more)
 

Dolphin

Senior Member
Messages
17,567
A few observations/comments for what they are worth (contd.)

If the authors had used more databases as sources for their papers, or searched references, it looks like the following would have met the criteria:
Non-pharmacologic interventions for CFS: A randomized trial.
Jason, Leonard A.; Torres-Harding, Susan; Friedberg, Fred; Corradi, Katrina; Njoku, Mary Gloria; Donalek, Julie; Reynolds, Nadia; Brown, Molly; Weitner, Bing Bing; Rademaker, Alfred; Papernik, Morris
Journal of Clinical Psychology in Medical Settings, Vol 14(4), Dec 2007, 275-296.
----
I don't think they make sufficiently clear that physical functioning (mentioned regularly) is a subjective measure, although they do mention the instruments used at one stage.
-------
It's interesting to see Table 1 (methodological quality), where the trials are poor in some area.

-------
They say, with regard to the PACE Trial, "In this study, the APT used a symptom-contingent approach,". This would certainly be true of normal pacing. However, APT also had a time-contigent component, I think it's fair to say.
-------
They list the following study

23 Fulcher KY, White PD. Randomised controlled trial of graded exer-
cise in patients with the chronic fatigue syndrome. BMJ
1997;314:1647–52.
as using a symptom-contingent approach [to exercise] which seems odd when they say GET in PACE used a time-contingent approach:
--

Only two studies [22,31] compared three different
doses (number of sessions and time with the therapist) of GET
treatments (symptom-focused approach) to each other (and
also to a control group).
I find the way they treat these two papers as representing separate studies odd and non-standard.

One (22) is just a follow-up paper on the other:

22 Powell P, Bentall RP, Nye FJ, Edwards RH. Patient education to
encourage graded exercise in chronic fatigue syndrome. 2-year fol-
low-up of randomised controlled trial. Br J Psychiatry 2004;184:142–6.

31 Powell P, Bentall RP, Nye FJ, Edwards RH. Randomised controlled
trial of patient education to encourage graded exercise in chronic
fatigue syndrome. BMJ 2001;322:387–90.
----
As biophile (and possibly others) has (have) pointed out, it's incorrect what they say about the FINE Trial:

Two studies [26,30] required 10 individual sessions of CBT or
GET treatments (time-contingent approach). In the study by
Stulemeijer et al. [30], 10 individual sessions were spread over
5 months. The study by Wearden et al. [26] applied 10 home
visits spread over 18 weeks. The home visit took 90 min in week
1, 1 h in weeks 2, 4, 10 and 18, and was replaced by a 30-min tele-
phone call in weeks 3, 6, 8, 12 and 15. Both studies showed signifi-
cant improvement (P < 0.05) in fatigue and physical functioning
compared with the control group in people with CFS.
This might be one solid point that could be included in any letter, allowing a letter writer to perhaps editorialise with other points.

---
The description of the PACE Trial gives the impression patients actually did this amount of activity:

The study by White et al. [29] described home exercises for the patients in
the GET group as follows: heart rate was used to determine the
exercise intensity, and target heartbeats were used to avoid
overactivity, which eventually led to five times a week 30 min
of light home exercises. The intensity of the aerobic exercises
was gradually increased.
 

biophile

Places I'd rather be.
Messages
8,977
If the authors had used more databases as sources for their papers, or searched references, it looks like the following would have met the criteria: [Non-pharmacologic interventions for CFS: A randomized trial. Jason, Leonard A.; Torres-Harding, Susan; Friedberg, Fred; Corradi, Katrina; Njoku, Mary Gloria; Donalek, Julie; Reynolds, Nadia; Brown, Molly; Weitner, Bing Bing; Rademaker, Alfred; Papernik, Morris. Journal of Clinical Psychology in Medical Settings, Vol 14(4), Dec 2007, 275-296.]

IIRC, in one of White's presentations on CFS, and judging from the slides alone, he was aware of the Jason et al study but just ignored it for some reason. Does that ring any bells?
 

Dolphin

Senior Member
Messages
17,567
IIRC, in one of White's presentations on CFS, and judging from the slides alone, he was aware of the Jason et al study but just ignored it for some reason. Does that ring any bells?
Good memory:
I just searched my Peter White folder.
For the Bergen 2009 presentation, he had:

Cognitive behaviour therapy


Trials of CBT

10 randomised trials

Excluding 2 not aimed to help recovery

Excluding 2 not using CB therapists

Excluding Lenny Jason's trial
Then a bar chart of the combined results for percentage improved for each trial.
The Powerpoint file doesn't give the text it'd be a guess why it was excluded.

They did get over Vincent Deale to try to replicate "UK" (my words) CBT:

The CBT treatment regimen was developed in collaboration with Vincent Deary, who has worked for many years with the team that completed a successful controlled clinical
trial of CBT in CFS (Deale et al., 1997). This

treatment was collaborative, educative, and negotiated with

participants based on a comprehensive cognitive–behavioral

emphasis. Specifically, participants were asked to

evaluate the effect of gradual and consistent increases in

activity and utilize strategies other than avoidance. The aim

was to show participants that activity levels could be

increased steadily and safely without exacerbating symptoms.

The 13-session protocol is summarized below.
 

biophile

Places I'd rather be.
Messages
8,977
Thanks for digging that up. PACE could have learned a thing or two from Jason. He engaged in known professional/published proponents of UK style CBT to help design his study. PACE should have engaged in known professional/published proponents of envelope theory and classic pacing to help design their study, not just use a patient organization to sign off on a less-practiced APT variant which is now being used to dismiss all pacing.