Who was it that said being in support groups leads to poor outcome?

[JaimeS]

That's why I've never understood why they haven't got behind pacing as a management strategy. It seems like the most obvious solution. Unless they did originally, and found that it didn't cure people, so assumed that they were booming and busting in secret?

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.



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.]

 

[NelliePledge]

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.

@JaimeS i think it may be that more of the people selected for CBT GET were middle class people who actually had access to private insurance/income protection whereas if more APT/SMC people were on benefits that would be because they didn’t have any private protection in the first place. ETA eg this FT article talks about only a minority of people with mortgages having income protection https://www.ftadviser.com/protectio...0-mortgage-holders-have-no-income-protection/

 

[JaimeS]

more of the people selected for CBT GET were middle class people who actually had access to private insurance/income protection whereas if more APT/SMC people were on benefits that would be because they didn’t have any private protection in the first place.

No, if you check out the chart, there's no meaningful difference between groups in those who had income protection or private insurance at the outset -- 10, 9, 13, and 8 in APT, CBT, GET, and SMC respectively. These are comparable.

 

[NelliePledge]

Ok. I can see I’ve got a bit muddled there’s something I’m trying to get st but it’s not coming out right #insomnia

Something about if you’re on state benefits rather than an ill health pension the money from PIP/DLA is more critical for you so you’re more likely to have to go through the horrendous process whereas people not reliant on state benefits can make a choice not to put themselves through it. So it’s likely to do with your financial situation as much as anything the therapist tries to convince you of.

 

[Inara]

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.

the money from PIP/DLA is more critical for you so you’re more likely to have to go through the horrendous process

Maybe it's also that the GET/CBT experience also showed them they won't endure a disability benefits process, or they were already so crashed that they couldn't imagine enduring it.

Very interesting, Jaime!

 

[Amw66]

Perhaps something for @Jonathan Edwards notebook

 

[Sly Saint]

Not sure I understand the chart completely (what are the figures in brackets?), but there are so many variables in the whole issue of benefits and insurance in this country that could affect the figures.

Income benefits are means tested, so people on them are probably in a worse financial state to start with.
But then others circumstances might change over time to make them eligible also. They are also tied to any spouses/partners income which of course are not reflected in the figures.

Another thing is that some people who might have tried to get insurance before had been turned down because they had not done CBT/GET. This might equally apply to those claiming disability benefits but could affect the outcome both ways; ie well if you were able to do that you can't be as ill as you say.

I don't think the figures clearly show anything other than you had a bunch of sick people who were more sick after 12 months.

 

[Lucibee]

what are the figures in brackets?

Percentages, I think.

 

[Lucibee]

@JaimeS - I don't think you can sum the deltas like that. Those categories are not necessarily mutually exclusive.

 

[ladycatlover]

Income benefits are means tested, so people on them are probably in a worse financial state to start with.
But then others circumstances might change over time to make them eligible also. They are also tied to any spouses/partners income which of course are not reflected in the figures.

Just wanted to point out that not all UK benefits are means tested. Currently DLA and PIP are not. Though it's such a battle to get them that many ME patients don't bother. The forms are a nightmare unless you can get help filling them in - full of pitfalls for the unwary.

 

[NelliePledge]

no, but what are called Income benefits are (ie Income Support, Housing benefit, Council tax benefit etc)

Yes and ESA is which is what you get to replace income when too ill to work. Even if entitled to one years worth of contributory ESA which isn’t means tested either but you then start to receive a private/occupational I’ll health pension during those 12 months ESA is only continued to be paid if your income is below a threshold.

ETA so you can meet the health criteria for state Ill health benefits ESA but not the income criteria. I am in this situation. I don’t receive ESA payments I only went through with ESA claim so I can get credited with contributions towards my state pension as I’ve not made enough from my work contributions to get a full pension in 10 years time. So having gone through ILl health retirement process then ESA process this year I’m not going to be putting myself through expending energy on a PIP claim any time soon

 

[JaimeS]

@JaimeS - I don't think you can sum the deltas like that. Those categories are not necessarily mutually exclusive.

What a good point!

[Edit: you can then say use of benefits of one kind or another increased, but you can't necessarily say more PEOPLE used benefits in one group to another, since the same person may have been using more than one kind of financial assistance...]

 

[JaimeS]

Not sure I understand the chart completely (what are the figures in brackets?)

I believe they're meant to be percentages; but if so, they've been calculated incorrectly, to a one. Hope I'm just missing something, because what an odd oversight / error if not.

Income benefits are means tested, so people on them are probably in a worse financial state to start with.

But across groups at least the ppl on private insurance were about the same, group to group.

Another thing is that some people who might have tried to get insurance before had been turned down because they had not done CBT/GET.

Then you'd presume far MORE people would qualify or try to qualify after they'd done CBT or GET.

The opposite was true.

 

[NelliePledge]

I think @slysaint has probably hit the nail on the head

Before doing any of the types of “treatment” roughly the same numbers in each group were receiving some sort of private health insurance or employment I’ll health pension. Then after 12 months you were more likely to be getting these non state payments if you’d done CBT or GET. If you hadn’t done CBT/ GET you’d be likely to have been refused if you had this cover and applied to receive payments b3cause you had treatment options available to you. In my letter confirming I was eligible for ill health retirement the pension scheme medical adviser highlighted mentioned that I had attended the CFS/ME clinic 2 years earlier. So everyone in the CBT or GET groups would have an easier time getting access to those private scheme payments.

The point I was making about earlier on the thread about economic/class status possibly differing between groups is a bit wishy washy because presumably they didn’t keep that type of record so impossible to know who had the private cover and who didn’t. I still think it’s possibly a contributing factor because you can’t claim private insurance payments or occupational pension if you’re not already entitled.

I’ve tried to sum up the reasons I can think of that make it more likely people would be getting private insurance payments

1 they’ve been off sick from work and no prospect of return
2 they are part of a minority of the population who have have cover through private insurance or an occupational pension scheme
3 having done CBT/GET the insurance or pension scheme medical adviser is likely to accept there’s no treatment option available and agree you’re entitled
4 if you have private cover you would claim that for that rather than state income replacement benefits because you wouldn’t be entitled to state benefits if you have other source of income and the amount of private payment could be substantially more than £110 a week,

 

[Sly Saint]

Then you'd presume far MORE people would qualify or try to qualify after they'd done CBT or GET.

In the UK, it is not common for people to take out health insurance. People usually have it either as part of a company package or tied to their mortgage on their house.

Unless people were in these schemes to begin with it is highly unlikely that they would then try to independently seek to get health insurance (particularly with an existing condition, and even more so with a potentially lifelong condition like ME that is hard to 'prove').
Also anyone relying on state benefits could simply not afford to even contemplate the idea.

 

[obeat]

Figures from 2017 state that 11% of UK population had income protection insurance. In self employed it was only 4%.

 

[Daisy]

In their claims management diary (obtained under the DPA, they never expected me to see it) my insurer said something to the effect that my ability to understand the issues involved and to pursue my claim was evidence that I wasn't as ill as I said I was...

A no win situation. (and not unlike what seems to happen with the DWP far too often)

I was also described as entrenched in a sickness role and as a result unlikely to improve.

PDW was CMO of the re-insuer (who were calling the shots) advising them on my claim, although his reports and advice concentrate on CBT/GET. There was an attempt to conceal PDW identity, but whoever was doing the redactions that day wasn't particularly good at their job......

 

[Trish]

That's terrible, @Daisy. I'm so sorry that happened to you. PDW has a lot to answer for.

 

[JaimeS]

my insurer said something to the effect that my ability to understand the issues involved and to pursue my claim was evidence that I wasn't as ill as I said I was...

This just in: sick people are no more likely to be stupid than anyone else.

I'm so sorry @Daisy that must've been awful. You can't win for losing!

entrenched in a sickness role

You're not sick enough but simultaneously entrenched in sickness?

Makes me sick!

 

[JaimeS]

In the UK, it is not common for people to take out health insurance.

Of course! Sorry, entrenched in the US way of doing things...