Who said: no getting back to work or drop in benefits after GET / CBT?

[JaimeS]

Another 'who said' post!

I've got Vink's paper (2016).

Even the PACE authors themselves say there was no difference between groups in lost employment, before or after the trial, and yet CBT and GET were more expensive anyway, and that may be enough.

In general benefits is a terrible, terrible judge of wellness. Like, you just KNOW that the CBT group and GET group were strongly discouraged from applying based off of the very premise: that their recovery will be based on effort alone.

But I feel like there were other studies. A Belgian one? that showed no getting back to work. [Edit: it's Dutch, I see!]

And did ANYONE actually use actigraphy in GET and CBT without later lighting the data on fire? That'd be a much, much more objective measure of how well the therapy works out.

 

[Rick Sanchez]

Some of the Dutch CBT researchers used actigraphy frequently. They reach some bizarre conclusions when they have to rationalize that CBT ''improves'' fatigue, but doesn't lead to increased level of activity.

https://www.researchgate.net/public...atigue_syndrome_The_role_of_physical_activity

Think there's also one British study, but I think it's back from 1997 or 1995 or something, I think it was a GET study. I think Vink has referred to it before? Not sure !

 

[JohnTheJack]

And did ANYONE actually use actigraphy in GET and CBT without later lighting the data on fire? That'd be a much, much more objective measure of how well the therapy works out.

Not sure if this is the kind of thing you mean, but on actigraphy:
https://www.ncbi.nlm.nih.gov/pubmed/20047707

 

[JaimeS]

Not sure if this is the kind of thing you mean, but on actigraphy:
https://www.ncbi.nlm.nih.gov/pubmed/20047707

Some of the Dutch CBT researchers used actigraphy frequently. They reach some bizarre conclusions when they have to rationalize that CBT ''improves'' fatigue, but doesn't lead to increased level of activity.

https://www.researchgate.net/public...atigue_syndrome_The_role_of_physical_activity

Think there's also one British study, but I think it's back from 1997 or 1995 or something, I think it was a GET study. I think Vink has referred to it before? Not sure !

OMG you're both amazing -- and SWIFT

!!!

 

[Dolphin]

But I feel like there were other studies. A Belgian one? that showed no getting back to work. [Edit: it's Dutch, I see!]

Stordeur et al., (2008) analysed the effectiveness of CBT and GET in the Belgian CFS knowledge centres. They found no objective improvements after CBT and GET (VO2max) and fewer people were able to work and more people were receiving illness benefits.

Stordeur S, Thiry N and Eyssen M (2008) Chronisch Vermoeidheidssyndroom: Diagnose, behandeling en zorgorganisatie [Fatigue Syndrome: Diagnosis, treatment and organisation of care]. Technical report 88A (in Dutch).
Brussels: Belgian Healthcare Knowledge Center (KCE). Available at: https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf (accessed 4 August 2018).

Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h-working week, to 14.9%.

 

[JaimeS]

OMG amazing!

I was tooling around PR looking for this and I literally thought to myself, I should ask @Dolphin -- @Dolphin knows.

 

[Dolphin]

OMG amazing!

I was tooling around PR looking for this and I literally thought to myself, I should ask @Dolphin -- @Dolphin knows.

Thanks. Here are original reports in French or Dutch for anyone who wants them. The French report was by far the longest thing I have ever read in French. There are lots of tables which made reading it easier.

 

[ME/CFS Skeptic]

Here are original reports in French or Dutch for anyone who wants them.

Luckily for you guys, the results of this report were summarized in an English document by the Belgian Health care Knowledge centre (Federaal Kenniscentrum voor de gezondheidszorg KCE). it can be found here: https://kce.fgov.be/sites/default/files/atoms/files/d20081027358.pdf

The chapter "Summary of the RIZIV/INAMI report (2006)" gives you some background on what you are reading. This was not a really a treatment trial. It was an evaluation of the CFS healthcare policy implemented in 2002 in Belgium. Treatment consisted of CBT and GET and was rolled out all over the country. The government agency paying for all of this (RIZIV/INAMI) ordered the CFS centres to collect multiple data, so the national CFS policy could be evaluated, which they did in 2006. So that's what you're reading. The relevant conclusion was:

"Physical capacity (maximal or sub-maximal according to the patient’s possibilities) did not change between start and end of the treatment. Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h- working week, to 14.9%. [...] The percentage of patients living from a sickness allowance increased slightly from 54 to 57%."
​

Edit: Overlooked that Dolphin allready posted the link, apologies...

 

[ME/CFS Skeptic]

They tried to minimalize the fact that the employment rate dropped by emphasizing that volunteer work increased.

 

[NelliePledge]

Some of the Dutch CBT researchers used actigraphy frequently. They reach some bizarre conclusions when they have to rationalize that CBT ''improves'' fatigue, but doesn't lead to increased level of activity.
!

Bizarre but not uncommon

 

[JaimeS]

BTW:

I just finished reading through the data on Adaptive Pacing, CBT, GET & Specialist Medical Care for CFS: A Cost-Effectiveness Study or whatever. It's original PACE authors.

Here is my re-imagining of their really, really poorly-done data table.

View attachment 4900

You'll notice that, judging by how they chose to measure 'efficacy', pacing doesn't look so good. And specialist medical care looks at first glance to be worst of all.

But this is deceptive.

'Getting off of or onto benefits' is a really, really poor indicator of wellness, because there is the unspoken additional variable of access and the perception of access.

For example, take a look at how many people got onto state-sponsored illness & disability benefits from CBT and GET groups.

It's very low in comparison to pacing and specialised medical care.

Now, take a look at how many people chose to get on income protection or private insurance in the CBT or GET groups and compare that to pacing and specialised medical care. The numbers for GET and CBT nearly doubled!

To me, this doesn't show that people who went through GET or CBT didn't need benefits -- it shows me that their CBT & GET experience discouraged them from believing their government believed and would help them. It impacted their perception of access.

So they didn't even try.

Instead, if they could afford it, they went for private insurance in overwhelming numbers (percentage-wise).

So, we have three factors here, and two go unacknowledged:

• wellness
• access
• perception of access

That makes it easy to read the chart like this:

1. ME patients are somewhat likely to rely on benefits over time (because all groups increase a little over time).
2. Pacing provides the best combination of access and wellness
3. CBT provides no benefit to wellness and also decreases access and/or perception of access
4. GET worsens wellness and also decreases access and/or perception of access
5. 'No treatment' worsens wellness but has the same access and perception of access as pacing

Is this definitively true? Of course not. The point is they had three variables and they don't even seem to realize it.

[Edit: in further support of this rather depressing theory, there was a significant disparity in who CBT and GET folk turned to in order to attain disability as compared to APT and SMC.]

 

[obeat]

BTW:

In the UK you have to have an income protection/ critical illness plan in place before onset of illness. Hence only people who are higher earners will have one. Remember " yuppie flu"! By undertaking a GET program it would be easier to then activate these benefits. A possible incentive to take part in the trial????

 

[JaimeS]

In the UK you have to have an income protection/ critical illness plan in place before onset of illness. Hence only people who are higher earners will have one. Remember " yuppie flu"! By undertaking a GET program it would be easier to then activate these benefits. A possible incentive to take part in the trial????

Interesting!

Tho at the start, there were comparable numbers of ppl who had income protection &/or private insurance, so it doesn't explain those differences between the groups.

 

[alktipping]

all these reports that mention standard medical care as a reference neglects to tell you that standard medical care in the uk or at least in areas of the uk = nothing not even a handout leaflet when you first get diagnosed with post viral fatigue syndrome . so how do you make any real comparisons between their bogus treatments and non treatments of standard medical care .

 

[JaimeS]

standard medical care in the uk or at least in areas of the uk = nothing not even a handout leaflet when you first get diagnosed with post viral fatigue syndrome . so how do you make any real comparisons between their bogus treatments and non treatments of standard medical care .

They have the nerve to call it "specialised medical care".

Right.

 

[rvallee]

They have the nerve to call it "specialised medical care".

Right.

Especially given the premise that what they are testing is the "only treatment" (according to them anyway, it isn't but whatever that's what they're claiming) so that by definition standard medical care cannot be anything since THERE IS NO FREAKING TREATMENT.

I guess that was a mediocre attempt at creating a control treatment arm since they didn't have any controls, whether healthy or, even more relevant, deconditioned patients. I guess people just magically fill in the "controlled" when they read PACE: a randomized trial, while they cite the fact that RCTs are the gold standard in medicine and this isn't even an RCT so get out of here with your nonsense.

I had a thought last night and haven't seen much about it but it's a serious embarrassment that no one seems bothered by the fact that the GET hypothesis is that the patients are deconditioned and they did not have deconditioned patients as controls. Of course that's because it would have falsified their hypothesis but it's really depressing how unprofessional medicine can be at times and how much magical thinking goes into it.

 

[JaimeS]

GET hypothesis is that the patients are deconditioned and they did not have deconditioned patients as controls.

Yep.

It's really remarkable how bad it all is.

Biomed folks have been comparing to sedentary controls for yonks.

 

[JaimeS]

If I understand correctly, confounding variables mess up the return to work or school data.

Making it a mess of uninterpretability.

the results from Belgiam show a decrease in employment status and and increase in sickness benefits post trial.

Yes, but note that according to the UK study -- to the degree we can trust it -- benefits increase globally. So they'd need to compare it to other pwME who had other therapies or no therapy or SOMETHING vaguely resembling a control group. I haven't gotten a look at the Belgian study. Did they?

then they brain wash them into believing there is no point in applying: perceived access.

Contradictory, I would think re the main premise of CBT and GET - pwME are masters of their own fate.

That part is baked in.

If you are the master of your fate, then not getting better must be a deliberate decision: an 'attachment to the sick role'.

PwME aren't stupid. They get the message loud and clear with CBT and GET. If you don't recover, it's your fault.

So why would you try for benefits? I mean, it doesn't really matter if you internalize this message or not. So long as you know how you are viewed as a person with this disease, and whether you will be held at fault for your lack of recovery.

CBT and GET is apparently really successful at one thing: conveying its underlying ideology.

 

[DokaGirl]

I've had more than my share of abuse, but never had the "pleasure" of the brain washing GET/CBT done in some countries. Though my government still seems to support this theory demonstrated by its lack lustre actions to date.

One pillar of this program is to convince pwME they do not have a physical illness, but have a psychological one. How damaging and corrosive. And, if they are also convinced they do not deserve sickness benefits, then the BPSers are saying, contrary to their own denial of stigma re psychological illnesses, that psychiatric condtions are stigmatized.

Circular arguments - I think I'm getting dizzy! Ha!

 

[JaimeS]

I've had more than my share of abuse, but never had the "pleasure" of the brain washing GET/CBT done in some countries. Though my government still seems to support this theory demonstrated by its lack lustre actions to date.

One pillar of this program is to convince pwME they do not have a physical illness, but have a psychological one. How damaging and corrosive. And, if they are also convinced they do not deserve sickness benefits, then the BPSers are saying, contrary to their own denial of stigma re psychological illnesses, that psychiatric condtions are stigmatized.

Circular arguments - I think I'm getting dizzy! Ha!

https://forums.phoenixrising.me/ind...-and-its-discontents.50594/page-4#post-835029