A good analysis by Tom Kindlon
As has been previously been pointed out, last year a major report was
published on the Belgian CBT/GET Rehabilitation clinics for CFS.
It can be read, in French, at:
"Rapport d’évaluation concernant les centres de référence pour le syndrome
de fatigue chronique (SFC)"
http://www.inami.fgov.be/care/fr/revalidatie/studies/study-sfc-cvs/index.htm
or http://tinyurl.com/2t8em6
or, in Dutch, at:
Evaluatierapport over de referentiecentra voor het Chronisch
vermoeidheidssyndroom (CVS)
http://www.riziv.fgov.be/care/nl/revalidatie/studies/study-sfc-cvs/index.htm
or http://tinyurl.com/35btan
Dr. Bart Stouten and I have sent three previous messages to Co-Cure on the
report on the Belgian Clinics with information in English:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701D&L=CO-CURE&P=R3379&I=-3&
m=16601 or http://tinyurl.com/2uqoqs
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701E&L=CO-CURE&P=R427&I=-3&m
=16601 or http://tinyurl.com/366v5l .
And
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161&I=-3
or http://tinyurl.com/225qje
Dr Eleanor Stein also discussed them at the New Horizons: International
Conference on ME/CFS Biomedical Research
http://www.meresearch.org.uk/archive/newhorizons.html
-------------------------------------------------------
Over the weekend I noticed something that I thought some people might find
of interest:
Background Statistics:
- They found that 6% worked more after the rehabilitation and 10% worked
less.
- They found that 5% who were not working at the start of the rehabilitation
were working at the end of it.
- They found that overall 27% of the people who did the programme were
working at the start of the programme and 25% of the same group of people
were working at the end.
This leads to the following observation:
The only people who could work less were people who were already working (as
the people who were doing 0 hours couldn't do less).
That means that we are only looking at 27% were working at the start:
So 10/27 = 37% of the people who were working at the start, were working
less!
That's a large percentage.
Given that we know that 5% of the people who weren't working at the
start were working at the end, then they make up .05*.73=3.65% of
the 6% who were working more. So the existing workers only make up
2.35% of this (approx.). That means that, if one lets x=% working
more (of the people already working): x*(27/100)=2.35, x=8.70 so only 8.7%
of the people who were
already working, worked more compared to 37% working less!
[Full equation: (5*(73/100)) + (x*(27/100)) = 6]
Also given that 27% were working were working at the start and we
know 3.65% of the total are now working (the 5% of the 73% who
weren't working at the start), that would mean the total number working
would go up to 30.65% if nobody gave up work. But we know that only 25% of
the whole group are working at the end, so the drop
of 5.65% must come from the group who were working at the start.
This means that 5.65/27 = 20.93% of the people who were working at
the start had given up work completely by the end of the rehabilitation program.
To summarise - the new "data" in this message (not explicitly given in the
report):
Effect on work status of the CBT/GET rehabilitation program
Of the people who were working at the start of the rehabilitation program,
after the 6-month program, 8.7% were working more and 37% were working less.
21% had stopped working totally.
Another interesting statistic is regarding the amount of people who
undertook full-time working (Table 70) who were not working at the start:
It shows that 8% of the people were working 12 months after they had
finished the program. It says that 82% of the 22 who were working were
working part-time so only 18% were working full-time. That means that of
the 266 who started the program, 266*.18 = 3.96 i.e. 4 people (as some
rounding) out of the 266 were working full time or 4/266 = 1.5%.
[Table 70 shows that the sort of people who weren't working at the start
were out of work for a variety of periods - they weren't all out of work a
long time so it can't be claimed from this that the treatment would be
effective (say) for people who had been out of work for 6-12 months: Of the
44 people in this group, 0 people were working at the end of the program, 1
person (2%) was working (part-time or full-time) 6 months later and 1 person
(2%) was working (part-time or full-time) 12 months after the program.
We're not told which group of people were working full-time but as was
previously pointed out, only 18% of the people back working, were working
full-time]
Remember that, as the report itself says:
"l’amélioration significative du fonctionnement socioprofessionnel des
patients est l’un des objectifs de la rééducation."
(rough translation) "significant improvement in the socioprofessional
functioning of the patients is one of the aims of the rehabilitation
(program)".
Proviso: None of these figures are likely to be exactly correct as
we're dealing with round figures (6%, 10%, 25%, 27%) but useful to
show/quote in discussions/debates (esp. given all the hype about CBT and GET
for CFS).
Tom Kindlon
PS. Let me know if I've made a mistake anywhere. French is not my first
language.
-----------------------------
Background information:
The numbers I've used are:
Table 69:
Top third of table
Activités professionnelles salariées
M1: at the start of the programme.
M2: immediatedly at the end.
Hours worked (% of 38 hour week): at start 18.3%; at end 14.9%.
Move across:
% who increased during the period (%+): 6%
% who did the same amount (%=): 84%
% who decreased during the period (%-): 10%
Table 70:
"Reprise de travail après la rééducation en fonction de la durée depuis que
les patients n’ont plus travaillé avant le début du programme de rééducation
de bilan"
Rough translation/meaning:
"The re-taking of work after the rehabilitation broken down by the length of
the time the patients had not worked before the start of the rehabilitation
programme/similar."
"Pourcentage de patients n’effectuant aucune activité professionnelle
salariée au moment du programme de rééducation de bilan mais bien …"
Percentage of the patient who were not doing any paid/professional activity
at the start of the rehabilitation programme but
"… à la fin de la rééducation:"
at the end of the programme:
5%
(6 months after: 8%; 12 months after 8%).
"82% des 22 patients reprenant le travail le font à temps partiel"
82% of the 22 patients retook part-time work.
Table 71:
"Evolution en ce qui concerne les sources de revenus des patients qui ont
suivi la rééducation. Comparaison des sources de
revenus des (mêmes) patients au moment du programme de rééducation de bilan
(= M1) et à la fin de la rééducation (= M2)."
Evolution with regard to the sources of income for patients who followed the
rehabilitation. A comparison between the sources of income of the (same)
patients at the inception of the rehabilitation (denoted by M1) and at the
end of the rehabilitation programm (denoted by M2).
"Profession propre" = their own job.
M1: 27%
M2: 25%
* * *
The fact that people who WERE working before the therapy had to STOP working as a result of the therapy proves that CBT/GET is completely useless for CFS, and, in fact, makes things worse.
Most CFS/FMS patients I talk to say that they stopped working at their employer's behest: they were either fired or "requested to resign" (i.e., submit your resignation so the firm doesn't see its Unemployment Insurance premiums go up as a result of the firing). So, the notion that we could work if we made the effort, or that we're "too lazy to work" is inaccurate; the simple fact is, we cannot do the work well enough to satisfy an employer.
Exercise has repeatedly been shown to objectively make CFS symptoms worse; there are testable chemical changes. Yet, the CBT/GET lobby ignores those objective results and continues to tout the notion that coaxing and cajoling the patient to return to full activity is all that is necessary for a "cure".
This study of such rehabilitation proves that it's actually DIS-habilitation, resulting in patients being even less able to work after therapy.
I can tell you, after 7+ years of experimentation, there is a certain number of hours per week that I can work, and anything after that causes relapse. There's no reason that someone with no supporting spouse and no SSDI benefits should choose to work less -- you need the money to pay your bills -- yet every time I made the effort to work enough hours to pay the bills, I wound up in bed for days.
I don't need a doctor to encourage me to work ... if you have no one supporting you, the need to eat is quite enough encouragement to work. What I need is a doctor to fix the problems that prevent me from working full-time, so that I can earn enough to pay the bills. But when they're so focused on the idea that you simply "don't want to work", they're not addressing the viral cause for the symptoms, and if they don't fix the root of the problem, no amount of brainwashing is going to cure the patient enough to work.
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