Friday, March 14, 2008

Patients get WORSE with Therapy (Tom's translation)

Majority of ME/CFS patients negatively affected by Cognitive Behaviour Therapy

(Excerpts from Tom’s attempt at translation)

Cognitieve gedragstherapie bij het chronische vermoeidheidssyndroom (ME/CVS) vanuit het perspectief van de patient

(Cognitive behaviour therapy for chronic fatigue syndrome from the patient’s perspective)

I was alerted to this on Friday by Ellen Goudsmit. It had a lot of tables that looked interesting so I tried to read through it using the online translator Babelfish. They talked a bit about the Belgian CBT/GET rehab clinics so I translated that also.


Average age in years (standaardafwijking (standard deviation I presume)) 39 (11,8) percentage women 84%

ME/CFS 100%

diagnoses has put doctor 98% (doctor gave diagnosis)

complaints worsens after effort 99%

has no effort fear 77%

has been motivated to treatment started 96%

treatments under accompaniment therapeut 99% (treatments done under a therapist, I presume)

had physical oefenprogramma (GET) 88%

treatments 6 months or longer 64%

durations in avance indicated therapeut 62% (the length of treatment was decided in advance)

had been involved in procedure (WAO INCAPACITY BENEFIT) 25%

had other treatment beside CBT (1) 25%

therapy has finished 70% entirely

1) 13 Different therapies and/or types medicijngebruik were in sum called. Most attentive physiotherapy were (9 time). Also mentioned antibiotics (1), fitness (1), psychotherapy (2), hydrotherapy (3), entertainment exercises (1), diet (1), Ritalin (1), sport practising programmes (1), holopathie (2), osteopathy (1), Carnitine (1) and relaxation (1) became.

Reasons prematurely strike therapy (Reason why therapy was stopped prematurely) in the inquiry 5 different reasons had been incorporated for outburst (5 different reasons were given why it was stopped prematurely) . Because more reasons are conceivable, were possible moreover are also not given up reasons called in the inquiry. The 30 persons who drops out called 38 time a reason for premature suspension. In sum it 11 concerned different reasons. In table 2 stand by the respondents reasons given up for striking the therapy.

Table 2: Given up reasons for prematurely props therapy (N=30; 38 time a reason given up)

too heavy because of travel to meetings 5 17% (the travel to the sessions was too much)

too heavy because of physical oefenprogramma 8 27% (the physical exercise program was too hard/much)

stepped no progress aim in advance on 3 10% (had made no progress towards advance aims)

went only reverse 15 50% (was only going backwards)

put for commencement had been gained 1 3%

? other reason (en) 6 20%

Objective therapy it has been confessed that are generally put at CBT before the therapy several, sometimes individual aims. This proves has been at 92% of the respondents also indeed the case. Thereby it was to learn handle the complaints the most attentive doestelling (TK: most common objective) (39%). Personal objectives for (32%) less frequently came or in avance complete convalescence as an objective were stipulated (21%) (TK: complete recovery was stipulated as an objective in 21% of cases) In table 3 we have reflected by the respondents communicated objectives.

Table 3: Objectives CBT (N=100),

certain in advance, complete convalescence/cicatrisation 21%

personal objective, e.g. (partly) work 32%

better to learn handle complaints, restrictions 39%

aims in avance no put 8% (no aims decided in advance)

General impact CBT in the previous paragraph we have mentioned the objectives at the beginning of the therapy. To what extent these are gained becomes clear from table 4. only 2% of the respondents communicates that the therapy to entirely has conducted repaired. In sum (total) 30% improvements communicate without convalescence has been reached. A just as large group communicates no change. Reverse gear became by 38% declared (TK: 38% said they became worse). Remarkably the large group patients, who have deteriorated by the therapy strongly, is (29%) (TK: Remarkably a large group, 29%, got much worse as a result of the therapy). By remainder more patients by this therapy reverse has gone then ahead.

Table 4: Reaches result after suspension CBT (N=100). (1)

Entirely repaired 2%

considerably improved, but do not heal 15%

something improved 15%

rights remained 30%

something deteriorated 9%

strongly deteriorated 29%

1) The group afvallers has been also incorporated in this table. In paragraph 5.3 we make still a splitting up between both groups.

5.2 Impact on social and social activities in this paragraph examines we the impact of CBT on five important social and social activities, namely knows performing paid work, following a study, practising sport, it maintaining social contacts and performing domestic tasks.

Influence CBT at paid work (TK: Influence of CBT on paid work) a rather large minority (41 persons) appears average almost 25 perform hours per week for commencement of CBT still whole or partially paid work. It is striking that after the therapy this number has decreased up to 31: 16 participants, who worked preceding the therapy still, no longer do this after the therapy. The other way around started or resume after the therapy 6 participants paid work. (TK: Out of 41 worked at the start working on average 25 hours per week, 15 gave up; while 6 who hadn't been working started to work). Moreover appears still that this group workers is average 5 hours less will work (TK: Moreover of those that were still working, on average they worked 5 hours less). The total number of decreases hours worked of the group concerned as a result, with almost 40% (TK: This meant that in total, the total number of hours decreased by 40%). The difference appears significant (Paired Twosample t-test, two-sided; t(92)=3.04; p<0.005). CBT appear therefore for working participants a strongly negative impact on the possibilities of performing work have paid. (TK: Therefore CBT appears to have a strongly negative impact on paid work performance/similar).

Table 5: Number of patients hours per week before and after CBT, worked with paid work and number of hours [TK: Observation: The top group is 32.5-40 hours per week. Before it, 13 people were doing this; after it, there were only 4!. For the 24.5-32 hour group it went from 6 to 2. So in total, for 25 hours or more, it went from 19 to 6!]

5.3 Results of subgroup analysis

Aforementioned results have been obtained simply tallying the scores of the 100 respondents. We have however also examined if there possible differences certain subgroups be to find. Thus it is conceivable that the rather large group patients who CBT not to end has been possible accomplish,

the results has negatively influenced(TK: it is conceivable that the results could have been influenced by the rather large group who didn't finish the CBT). Also we have examined if patients whom at the time of the therapy involved products in WAOprocedure, the results have influenced (TK: we have examined if the results could have been influenced by the patients who, at the time of the therapy, were involved products in applying for disability payments). If lying behind idea is, however, suggested that these patients their complaints necessary to prove their revendications on a wao-uitkering (prins e.a., 2002) and therefore would show none or less improvement by CBT [TK: (something like) this is based on the idea that has been suggested that patients who have to prove they have sufficient symptoms/complaints for a disability payment would show none or less improvement by CBT]

Influence persons who drops out (The influence of people who drop out)

Like on the basis of table 2 can be expected is the impact of CGT significantly worse at the patients, whom the therapy has not completed (chi^2(4)=15,01; p<0.01) (TK: As is clear from Table 2, somebody was more likely to have said they were made worse by CBT if they didn't finish it). The most called reason for premature suspension of the therapy was deterioration of the health situation. The results of the group which the therapy is completed because of this something improve then which of the total group (TK: Because of this, the results of the group who completed the therapy are therefore better because of this). It is remarkable however that also 18.6% of the respondents who completed the therapy indicates strongly by the therapy having deteriorated

(1) For the small number of perceptions in the group repaired "entirely" we have added this group for the statistic tests to the group "considerably improved".

Table 11: Impact CBT treatment split up in afvallers and voltooiers (Impact of CBT broken down into completers (people who did the whole course) and those that dropped out

Reported impact Slimmed (TK: Dropped out) (N) a f fallen (TK: Dropped out) (%) accomplished (completed) (N) accomplished (%) total (N) total (%)

Entirely repaired 0 0% 2 2.9% 2 2%

considerably improved 1 3.3% 14 20.0% 15 15%

something improved 4 13.3% 11 15.7% 15 15%

rights remained 6 20.0% 24 34.3% 30 30% (TK: remained the same)

something deteriorated 3 10.0% 6 8.6% 9 9%

strongly deteriorated 16 53.3% 13 18.6% 29 29%

Totals 30 100% 70 100% 100 100%

Influence WAO incapacity benefit procedure

It is frequently put that patients show involved in a WAO incapacity benefit procedure worse outcomes at CBT (TK: It is frequently claimed that patients involved in a WAO incapacity benefit procedures have worse outcomes with CBT). The figures from this inquiry do not support this assumption however: the impact of CBT is at this group not significant worse (chi^2(4) = 2.77; P=0,60).

Table 12: Impact CGT split up in patients, who were, and were not involved with WAO incapacity benefit procedures

Reported impact WAO incapacity benefit procedure (N) Idem (%) no procedure (N) idem (%) total (N) total (%)

entirely repaired 0 0% 2 2.7% 2 2%

considerably improved 6 24% 9 12.0% 15 15%

something improved 5 20% 10 13.3% 15 15%

rights remained 7 28% 23 30.7% 30 30%

something deteriorated 1 4% 8 10.7% 9 9%

strongly deteriorated 6 24% 23 30.7% 29 29%

totals 25 100% 75 100% 100 100%

Influence other treatment beside CBT

A number of patients followed other treatment still one or more or used medicines beside CBT. Between both groups no significant difference could be found (chi^2(4) = 2.27; P=0,69). We have examined this because it is sometimes put at CBT as condition that patients can no other therapies follow or medicines simultaneously to use.

Table 13: Impact simultaneously present other therapies/medicatie on outcome CBT

Reported impact other treatment beside CBT (N) idem (%) no other treatment (N) idem (%) total (N) total (%)

repaired entirely 0 0% 2 2.7% 2 2%

considerably improved 4 16% 11 14.7% 15 15%

something improved 6 24% 9 12.0% 15 15%

rights remained 6 24% 24 32.0% 30 30%

something deteriorated 2 8% 7 9.3% 9 9%

strongly deteriorated 7 28% 22 29.3% 29 29%

totals 25 100% 75 100% 100 100%

Influence physical oefenprogramma (Influence of a physical exercise program)

In the Netherlands CBT are generally combined with Graded Exercise Therapy (GET), physical oefenprogramma (exercise program), in which the physical activity is systematically intensified according to a diagram in avance established. We have examined if the outcomes differed from the therapy for the group from and without such a programme. There no significant difference could be shown (chi^2(4) = 7.69; P=0,10). Must registered become that in only 12 cases GET no component of the therapy determined. (It should be stated that GET was not involved in only 12 of the cases)

Table 14: Impact CBT without and with physical oefenprogramma (GET)

Reported impact no GET (N) Idem (%), however, GET (N) idem (%) total (N) total (%) 0 0%

entirely repaired 2 2.3% 2 2%

considerably improved 0 0% 15 17.0% 15 15%

something improved 1 8.3% 14 15.9% 15 15%

rights remained 7 58.3% 23 26.1% 30 30%

something deteriorated 0 0% 9 10.2% 9 9%

strongly deteriorated 4 33.3% 25 28.4% 29 29%

totals 12 100% 88 100% 100 100%

(The) Influence (of) objectives

It is, however, put at CBT that how higher the put aim is, how larger the impact of the treatment is because put aims could not reached (prins e.a., 2006) (TK: It is claimed that for CBT the higher the stated aim, the larger impact of the treatment is because one won't aim for things if one doesn't try (or something like that) (prins e.a., 2006)]. The two patients, who have communicated complete convalescence, indeed fall in the group where complete convalescence had been in avance put as an aim, but tevens can in table 15 it see that almost half of the patients in this group reported CGT to a strong reverse gear. This impact was exactly not significant (TK: not quite significant) (chi^2 (4) = 8.49; P=0,075).

Table 15: Impact CBT in objective complete convalescence split up and other Objectives

Reported impact aim complete convalescence (N) idem (%) other aim (N) idem (%) total (N) total (%)

entirely repaired 2 9.5% 0 0% 2 2%

considerably improved 3 14.3% 12 15.2% 15 15%

something improved 1 4.8% 14 17.7% 15 15%

rights remained 5 23.8% 25 31.6% 30 30% (TK: remain the same)

something deteriorated 0 0% 9 11.4% 9 9%

strongly deteriorated 10 47.6% 19 24.1% 29 29%

totals 21 100% 79 100% 100 100%

Influence expensive therapy (TK: influence of length of therapy)

Finally we in this subgroup analysis has examined if a longer duration from the therapy to better outcomes has conducted. We have not taken the afvallers (TK: dropouts) because of them it is only confessed how long they have followed the therapy, but not how long the therapy will have lasted if they had completed that. Although in by far the most cases the therapy lasted 6 months or longer prove to be this impact do not improve then at a therapy duration of shorter than 6 months (chi^2 (4) = 3.47; P=0,48).

Table 16: Impact expensive CBT split up in shorter than 6 months and 6 months or longer

Reported impact. shorter than 6 months (N) idem (%) 6 months shorter or longer (N) idem (%) total (N) total (%)

Entirely repaired 0 0% 2 3.8% 2 2.9%

considerably improved 3 17.6% 10 18.9% 13 18.6%

something improved 4 23.5% 8 15.1% 12 17.1%

right remained 6 35.3% 18 34.0% 24 34.3%

something deteriorated 0 0% 7 13.2% 7 10.0%

strongly deteriorated 4 23.5% 8 15.1% 12 17.1%

total 17 100% 53 100% 70 100%

Also from Belgium some figures have been confessed with regard to the effectiveness of CBT in practice. In this country a number of years has been suffered so-called reference centres in use for ME/CFS patients taken in these centres patients standard with CBT/GET is treated.

In 2006 evaluation report, appeared Belgian reference centres (riziv, 2006) (pag. 58) is: read "as far as an comparison is possible lijken the treatment results of the CFS centres therefore less well than the results of the published evidence based studies in which a positive treatment impact of cognitive behaviour therapy or progressive physical rehabilitation was shown". In terms of life quality 48% of the patients (N=403) experienced an improvement by the therapy, 22% found that these equal had remained and 30% communicated reverse have will (pag. 52). these figures be something more positive than those in our study.

Concerning return to work in this report (pag. 55) is read: by the rehabilitation the patients (N=563) perform paid professional activities during on average 18.3% of 38-hour-week. A significant improvement of the socioprofessionele functions of the patients is in accordance with the agreement one of the objectives of the rehabilitation. From the data becomes clear however that the average paid percentage professional activities still decreases up to 14.9% at the end of the rehabilitation. 6% of the patients work more than by the rehabilitation, 10% less. For 84% of the patients does not modify the percentage paid professional activities. Here too appear have contributed CBT/GET positively to an increase of ME/CFS patients to performing paid work, on the contrary. This negative impact was however less strong than in our research.

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