CBT and GET The patients have their say

[Gerwyn]

The following data was presented in the CMO,s report of 2002 and the UK nice guidelines using patient self report questionaires that the Psychos are so fond of

Therapy* Respondents Helpful No change Made worse
Drug medication for pain 1394 61% 28% 11%
Drug medication for sleep 1300 67% 17% 16%
Pacing your activities 2180 89% 9% 1%
Graded exercise 1214 34% 15% 50%
Diet changes 1864 65% 32% 3%
Nutritional supplements 1953 61% 36% 3%
Rest, including bed rest 2162 91% 8% 1%
Cognitive Behavioural Therapy 285 7% 67% 26%
Other 878 76% 11% 14%
*Not all the respondents experienced each treatment approach

• 
  
  The list is a little off centre-like my typing so the following is my attempt at a tidy up!
  
  Therapy*
  
  Graded exercise (respondents) 1214 (helpful) 34% (no change) 15%(made worse) 50%
  
  Cognitive Behavioural Therapy (respondents) 285 (helpful) 7% (no change) 67% (made worse) 26%

 

[_Kim_]

I made a pretty little table with this data
​

 

[Gerwyn]

thank you Kim

 

[gracenote]

HELPFUL
Rest 91%
Pacing 89%
Other 76%
Drugs for Sleep 67%
Diet Changes 65%
Nutritional Supplements 61%
Drugs for Pain 61%
Graded Exercise 34%
CBT 7%

MADE WORSE
Graded Exercise 50%
CBT 26%
Drugs for Sleep 16%
Other 14%
Drugs for Pain 11%
Diet Changes 3%
Nutritional Supplements 3%
Pacing 1%
Rest 1%

 

[Dr. Yes]

It's too hard to understand... damn it.. we need a statistician....

 

[leelaplay]

I just misread the title as

CBT and /GET the patients/ /have their say/

 

[gracenote]

It's too hard to understand... damn it.. we need a statistician....

 

[gracenote]

 

[Elliot]

Well I've been really apathetic towards my own GET treatment, been seeing if it might help abit. (and angry at the general GET treatment but trying to 'give it a go' to see if it helps) In the sense that I'm desperate to feel a little bit better.
But a 50% rate of relapsing? Fuck that.

 

[Hope123]

Gerwyn and all, this data is from the UK AFME surveys in 2002. There is a more recent one in 2008, where the numbers shifted slight. I have highlighted what it says below and attached the doc for others who want to read it. I am too tired to put out all the data right now but I believe we should always know the latest data.

Treatment

In 2001, 89% had found pacing to be the most
helpful treatment. 34% had said that GET had
been helpful, 50% felt that it had made them
worse. Only 7% had felt that CBT had been
helpful while 26% felt it made them worse.
In 2008, the results show signs of improvement
but some serious concerns remain. 34% of
respondents who said that they had received
GET and 12% of those who said that they had
received CBT felt worse after these treatments.
Does this reflect the age or severity of illness in
this particular sample, or the long-term nature
of their illness or the way in which GET and
CBT are being administered and by whom?

 

[Gerwyn]

Gerwyn and all, this data is from the UK AFME surveys in 2002. There is a more recent one in 2008, where the numbers shifted slight. I have highlighted what it says below and attached the doc for others who want to read it. I am too tired to put out all the data right now but I believe we should always know the latest data.

Treatment

In 2001, 89% had found pacing to be the most
helpful treatment. 34% had said that GET had
been helpful, 50% felt that it had made them
worse. Only 7% had felt that CBT had been
helpful while 26% felt it made them worse.
In 2008, the results show signs of improvement
but some serious concerns remain. 34% of
respondents who said that they had received
GET and 12% of those who said that they had
received CBT felt worse after these treatments.
Does this reflect the age or severity of illness in
this particular sample, or the long-term nature
of their illness – or the way in which GET and
CBT are being administered and by whom?

i would be very wary about a survey by afme now i would have to see the fine print. The above is an "intepretation" The way in which cbt and get is administered might be leading somewhere

There is data and "data" we should not be fooled by the latter.There is no raw survey figures here. My guess is that either the questions have changed or the definitions of better worse etc or both.a standard Uk govt trick

 

[Orla]

Hi Hope there were some criticisms that could be made of the AFME survey, as there were some limitations to it (don't have the energy right now - am hoping Tom will chip in!)

The MEA did a very large survey in 2008, some results were published in 2009.

4217 took part. These are scores for GET and CBT (figures from ME Essential Spring 2009)

GET (No of replies 906)

Much worse 33.1%

Slightly Worse 23.4%

No change 21.4%

Improved 18.7%

Greatly Improved 3.4%

And CBT (997 replies)

Much worse 7.9%

Slightly Worse 11.6%

No change 54.6%

Improved 23.1%

Greatly Improved 2.8%

 

[Hope123]

Gerwy, look at the attachment. I just put one paragraph from the report that contrasts data from the two surveys. The attachment has the raw data. The data you put up is from AFME's 2002 survey which they presented to the UK gov't.

 

[gracenote]

Here is a screen shot of the newer stats.

​

I worked really hard to get this. Sorry it's not readable. That's all I have energy for now.

Drat.

 

[Hope123]

Hi Hope there were some criticisms that could be made of the AFME survey, as there were some limitations to it (don't have the energy right now - am hoping Tom will chip in!)

The MEA did a very large survey in 2008, some results were published in 2009.

4217 took part. These are scores for GET and CBT (figures from ME Essential Spring 2009)

GET (No of replies 906)

Much worse 33.1%

Slightly Worse 23.4%

No change 21.4%

Improved 18.7%

Greatly Improved 3.4%

And CBT (997 replies)

Much worse 7.9%

Slightly Worse 11.6%

No change 54.6%

Improved 23.1%

Greatly Improved 2.8%

Orla, Gerwyn, my point is not to argue about CBT/GET -- if 30% of people are made worse by treatment, that is too high to risk. But I do believe in knowing whatever studies are out there, for or against whatever position. How else can I make as accurate a conclusion about things as possible? You probably are aware of this but in a scientific debate if you pull out evidence from several years ago and there is a better or more recent study that contradicts that, you have to be able to answer to it. (If you happen to have an attachment or link to the data you cite, I'd like to have it for my own records.)

 

[Gerwyn]

I did look at the attachment I would need to compare the questions and the definitions used

 

[Gerwyn]

The point is that it is not a better study ,One needs to know whether the data itself is comparable and free of bias.more recent is not always better in this game where science does not predominate.you are invited to think that the terms have the same meaning.On closer inspection this is often not the case!

 

[Orla]

Just deleted my post there by accident. Second attempt.

<Orla, Gerwyn, my point is not to argue about CBT/GET -- if 30% of people are made worse by treatment, that is too high to risk.>

Yes.


<But I do believe in knowing whatever studies are out there, for or against whatever position. How else can I make as accurate a conclusion about things as possible?>

Yes. There are limitations in this study that did not apply to the other 2 (re sampling for example). I don't have the energy to look up comments to double check some of the limitations I think existed with this one (I prefer to double check things). I am not saying that it is totally useless survey, as there is some interesting data, but there were limitations.

< You probably are aware of this but in a scientific debate if you pull out evidence from several years ago and there is a better or more recent study that contradicts that, you have to be able to answer to it. (If you happen to have an attachment or link to the data you cite, I'd like to have it for my own records.)>

Hi Hope, in this case newer is not better. And MEA is more recent. I don't have a link to the MEA results as I got it from their paper magazine. Though there is a good chance the results were reported on the internet. I will have a look again. I think they are planning to produce a large report sometime on the survey (there was more to it than treatments tried so it should be very interesting).

Orla

 

[Dolphin]

AfME/AYME survey 2008

Orla, Gerwyn, my point is not to argue about CBT/GET -- if 30% of people are made worse by treatment, that is too high to risk. But I do believe in knowing whatever studies are out there, for or against whatever position. How else can I make as accurate a conclusion about things as possible? You probably are aware of this but in a scientific debate if you pull out evidence from several years ago and there is a better or more recent study that contradicts that, you have to be able to answer to it. (If you happen to have an attachment or link to the data you cite, I'd like to have it for my own records.)

http://afme.wordpress.com/5-treatments-and-symptoms/ gives more data on the 2008 survey.

It breaks the data down into regions for example (no particularly safe regions if you exclude the Isle of Man with a sample size of 1)
Also data with regard to who the GET was under: 31.27% of those who did GET under an "NHS specialist" were made worse by it compared to 31.92% overall. If you do a Chi-squared test, there is no difference.

The 2008 survey was done by AfME and AYME. The latter is a charity for people with ME/CFS aged under 26 (they have free membership so I have gotten the impression that some of the people don't really have ME/CFS at all but some other forum of chronic fatigue e.g. came across a blogger who had had a transplant).
Children and young people might be more likely than adults to increase with time. Looking at part 1, 35.71% were under 26 which I think would be a younger group than studies of normal adult groups.

A bigger factor I think is that it is restricted to people who had done the program in the previous three years which wasn't the question for other surveys. I think a reasonable percentage of people were still likely to be trying it either under a professional or after. I think it sometimes isn't until one stops and/or takes a longer term view that one realises one is worse off than when one started. If somebody was still doing it, they likely hope it is helping or at least not making them worse but that isn't necessarily the facts.

With regard to the AfME/AYME comments, it should be remembered that they get a lot of grants from the Dept of Health and the like and are supportive of the NHS CFS/ME services and want more of them. These services generally just over GET, CBT based on GET and maybe a diagnosis. It could be said they are trying to put the best spin possible on the results.

Here's the MEA survey results (they are launching them in May):

 

[Gerwyn]

http://afme.wordpress.com/5-treatments-and-symptoms/ gives more data on the 2008 survey.

It breaks the data down into regions for example (no particularly safe regions if you exclude the Isle of Man with a sample size of 1)
Also data with regard to who the GET was under: 31.27% of those who did GET under an "NHS specialist" were made worse by it compared to 31.92% overall. If you do a Chi-squared test, there is no difference.

The 2008 survey was done by AfME and AYME. The latter is a charity for people with ME/CFS aged under 26 (they have free membership so I have gotten the impression that some of the people don't really have ME/CFS at all but some other forum of chronic fatigue e.g. came across a blogger who had had a transplant).
Children and young people might be more likely than adults to increase with time. Looking at part 1, 35.71% were under 26 which I think would be a younger group than studies of normal adult groups.

A bigger factor I think is that it is restricted to people who had done the program in the previous three years which wasn't the question for other surveys. I think a reasonable percentage of people were still likely to be trying it either under a professional or after. I think it sometimes isn't until one stops and/or takes a longer term view that one realises one is worse off than when one started. If somebody was still doing it, they likely hope it is helping or at least not making them worse but that isn't necessarily the facts.

With regard to the AfME/AYME comments, it should be remembered that they get a lot of grants from the Dept of Health and the like and are supportive of the NHS CFS/ME services and want more of them. These services generally just over GET, CBT based on GET and maybe a diagnosis. It could be said they are trying to put the best spin possible on the results.

Here's the MEA survey results (they are launching them in May):

totally agree the doh connection made me very suspicious