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Peter White et al: Patient support group management recommendations vs medical textbooks and webs

Tom Kindlon

Senior Member
Messages
1,734
So the sources assessed seem a bit random, the assessments of 'support' cannot be blinded, and it's fairly clear that White has a dog in this race. As with the White/Hossenbaccus study cited, this seems like a pretty clear attempt at presenting political propaganda as medical research.

Here's a copy of the sources they cited in the supplementary material:

New thread:
Scans & links to what lots and lots of (UK-based) medical websites, textbooks etc. say about ME/CFS
http://forums.phoenixrising.me/inde...ebsites-textbooks-etc-say-about-me-cfs.45866/
 

Comet

I'm Not Imaginary
Messages
693
The thing is most GPs are completely unaware of the whole PACE story so they swallow this BS. NICE and NHS England are aware of at least some of the issues but won't do anything about it.

It is not just patients that these so-and-sos are lying to - it's doctors as well. I think if GPs knew the true story, and the fact that they are deliberately being kept in ignorance there would be trouble. Its bad enough as a patient but if I was treating people and recommending a regime which stood a strong chance of making people worse and then found out that information was deliberately being witheld....by the organizations that are there to protect patients...

I agree with everything you said. But want to make the point that, IMO, docs are also happy to believe what they are being fed. It's easier and fits into their appointment packed days. Patients are telling them they aren't depressed, this isn't psychosomatic, this is much more than fatigue, they have OI symptoms, neuro symptoms, etc, but with few exceptions, docs don't want to see the truth or take the time to investigate.

The PACEers have created the perfect storm of bullshit. A disabled group of people with (supposedly) no proof they are ill, being treated by ego maniacs who are never wrong, backed up by governments who can easily dismiss the call for funds to investigate because the 'fatigue' is all in our heads, as told by the PACEers. So, round and round we go.
 

Invisible Woman

Senior Member
Messages
1,267
I agree with everything you said. But want to make the point that, IMO, docs are also happy to believe what they are being fed. It's easier and fits into their appointment packed days. Patients are telling them they aren't depressed, this isn't psychosomatic, this is much more than fatigue, they have OI symptoms, neuro symptoms, etc, but with few exceptions, docs don't want to see the truth or take the time to investigate.

All true. But don't forget that local PCTs review the treatments GPs recommend and can step in and refuse to fund treatments if there is insufficient "evidence". Just as a GP may order blood tests but the labs can simply refuse to do (some of)them because, under the guidelines they have been given, they are considered unnecessary.

Now some GPs are megolomaniacs, but not all. They have to operate within guidelines and be prepared to explain why they have recommended (or not) certain treatments. NICE and NHS England have taken quite a bit of power away from GPs over the last few years I think.

It is NICE and NHS England that sit back and allow frontline GPs to bear the brunt of criticism, but it is their job to support and inform GPs (I think). They are aware of the problems with the current guidelines but are still happy to maintain the status quo.
 

Comet

I'm Not Imaginary
Messages
693
All true. But don't forget that local PCTs review the treatments GPs recommend and can step in and refuse to fund treatments if there is insufficient "evidence". Just as a GP may order blood tests but the labs can simply refuse to do (some of)them because, under the guidelines they have been given, they are considered unnecessary.

Now some GPs are megolomaniacs, but not all. They have to operate within guidelines and be prepared to explain why they have recommended (or not) certain treatments. NICE and NHS England have taken quite a bit of power away from GPs over the last few years I think.

It is NICE and NHS England that sit back and allow frontline GPs to bear the brunt of criticism, but it is their job to support and inform GPs (I think). They are aware of the problems with the current guidelines but are still happy to maintain the status quo.

This is very interesting. I was speaking of docs in the US. I suppose I should have mentioned that. :oops: It would seem docs in the UK have a much shorter leash than they do here.

We don't have PCTs (just looked that up), except for the medical insurance companies. They can decide what services are covered or not. But you tend to know that up front when you choose which insurance policy to buy into. Depending on your work situation, you may have more or fewer insurance companies or policy levels to choose from. But there is no government intervention in what the docs decide patients need.

I keep forgetting how different the NHS is. I understand better what you mean about GPs being kept in the dark, or at least having less control over treatment decisions. I can see how the UK system would tend to keep egos in check too.

But are docs even seeing that patients are really sick at the GP level in the UK? Because I believe the answer to that in the US is usually no. Or maybe that is just my experience.

In any case, we're still going round and round on this ridiculous hamster wheel of actually sick vs psychosomatic.
 

Invisible Woman

Senior Member
Messages
1,267
But are docs even seeing that patients are really sick at the GP level in the UK? Because I believe the answer to that in the US is usually no. Or maybe that is just my experience.

I think some, yes; some, no.

If they don't know and look up the guidelines they are supposed to follow, i.e. NICE, they get a big dollop of PBS guff.

If they think the patient is sick but don't know what to do. They check the guidelines and....BPS again.

For some reason they think outside the box, have some experience, have done a bit of digging: they are still constrained by NICE guidelines. They have to be careful because they may have to justify whatever treatment options they give & it has to be funded somehow.

Insurance companies are a whole can of worms over here.
 

Comet

I'm Not Imaginary
Messages
693
If they don't know and look up the guidelines they are supposed to follow, i.e. NICE, they get a big dollop of PBS guff.

If they think the patient is sick but don't know what to do. They check the guidelines and....BPS again.

For some reason they think outside the box, have some experience, have done a bit of digging: they are still constrained by NICE guidelines. They have to be careful because they may have to justify whatever treatment options they give & it has to be funded somehow.
What you say really sums it up. :grumpy: Thank you for the education.

Here, it's not that docs are bound by guidelines. It's that they mostly think CBT/GET is the answer. Which means, ultimately, that they did not understand the question.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For some reason they think outside the box, have some experience, have done a bit of digging: they are still constrained by NICE guidelines. They have to be careful because they may have to justify whatever treatment options they give & it has to be funded somehow.
I have said elsewhere it is not just quasi-government organizations like NICE that do this. Medical insurance companies have similar strategies. So do HMOs. Its bureaucracy driving medicine, and leading doctors down a path without the autonomy to adequately solve problems. Its cheap, but its not effective. Hence I question if it is efficient. A cheap solution that does not work is not really cheap.

An article published a while back by a doctor in the US pointed out many doctors were retiring or leaving the profession because they could no longer function with autonomy or in the best interest of patients. Some are concerned that the medical profession may be mostly phased out, and replaced by nurse practitioners who can follow rules as well as doctors.

Another point I have made elsewhere is this: if a given treatment agreed on by NICE works on 95% of patients, it still fails the other 5%. In the case of CBT/GET for CFS it arguably works on only 22% (wasn't that the percentage who improved in PACE, and that is probably due to methodological bias, and is not objectively demonstrated.) That means it has a 78% failure rate.

What are they doing for the rest? Because it looks like abandonment?

What are they doing with long term follow-up in the failed cases? Because it looks like they do not want to find out. I am most interested here in objective outcomes. How many get back to work or study? How many return to a normal life, able to do all the normal things people do? How many are able to get back to sport or an active lifestyle? How many can only tolerate part time work? How do these compare to untreated patients? And so on ...

There have been three government reviews of the efficacy of CBT/GET in ME and CFS, in Holland and Belgium. The results were, to summarize, fail, fail and fail.

Finally let us not forget the null hypothesis is affirmed in CBT/GET via the PACE trial.
 

user9876

Senior Member
Messages
4,556
However, this paper shows a disconnect between the medical textbooks and what seems to work with patients and is shared by patient groups.

But White's claims about 'rehabilitative' are false. We know they don't work from the PACE long term follow up and if they did work would White really have spent 200k of our money on legal fees to suppress the data.

So this leaves us with this paper that shows the medical text books prefer White's favoured non-working therapies. And hence demonstrates the need to rewrite the medical text books.

If we ever get data from PACE and it turns out that the measures they defined in the protocol showed no improvement then this paper really shows that the medical textbooks are inaccurate for ME.
 

Denise

Senior Member
Messages
1,095
So this leaves us with this paper that shows the medical text books prefer White's favoured non-working therapies. And hence demonstrates the need to rewrite the medical text books.
.

So in order to know what the text books say (and then know which textbooks need to be rewritten, perhaps some members can help with this thread.
http://forums.phoenixrising.me/inde...books-etc-say-about-me-cfs.45866/#post-745800
@TomKindlon pulled lots of UK textbook links and would like us to help compile a record of what they say.
 
Messages
3,263
They get funding because it is in the interests of big re insurance companies and the government states to be able to dismiss the suffering of a large group of people
You may be right, @Invisible Woman. But for what its worth, I think we need to be really cautious in making claims that funding bodies are in bed with those controlling welfare payouts/insurance. Only make them when we are sure its true. Else we sound like conspiracy theorists. Which could undermine our legitimate concerns.

I'm on a government grant funding panel, the largest in our country, and I can tell you,when I evaluate research proposals, I don't give a damn about insurance and welfare payouts. Not one flying ****. Neither do my panel members or the panel chair. And our recommendations are final. I doubt my country's some sort of weird exception to the rule, there's probably lots of other administrations that work this way too. One hand simply has no interest in what the other is doing.

Government policy does come into our funding decisions, but only indirectly, because the govt determines how much money will be made available in the first place (for example X million on basic biol science, X million on economics, etc.)

I'm not saying financial interests aren't an important factor that buoys research in the BPS area. I think they are. I'm also not saying you're wrong to suggest these interests are influencing funding decisions - you could well be right. Just saying we should all apply caution.
 

Daisymay

Senior Member
Messages
754
Peter White et al compare patient support group recommendations on the management of ME/CFS to what medical websites and textbooks recommend

Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.

But wait a minute.....in the PACE trial participants in the CBT and GET groups were fed positive expectations of benefit from these treatments via newsletters, patient manuals and from the practitioners, while those in the SMC and adaptive pacing groups weren't given the same positive expectations.

So if the power of expectation is so strong that it can "determine the response to treatment" perhaps the minimal benefit of CBT and GET (which evaporated over time) was actually down to the differing manipulation of patient expectations betweeen the four arms of the trial and had nothing whatsoever to do with CBT or GET, as they claim?

Not surprisingly the PACE authors didn't mention this power of expectations in the PACE trial and how it might have influenced the outcome. And when anyone has brought up the problem of the differing expectations within the trial the authors have either ignored or dismissed the idea.

Has Professor White not seriously undermined the PACE results with this new paper?
 

Sean

Senior Member
Messages
7,378
Has Professor White not seriously undermined the PACE results with this new paper?
:whistle:

White, Sharpe, Wessely and Deary are on the advisory board of this journal.
It's good to have friends.

Deary isn't as well known but he wrote the cognitive behavioural model of medically unexplained symptoms on which the promoted interventions are based.
Dreary's culpability needs more attention than it has received so far.
 

MEMum

Senior Member
Messages
440
All true. But don't forget that local PCTs review the treatments GPs recommend and can step in and refuse to fund treatments if there is insufficient "evidence". Just as a GP may order blood tests but the labs can simply refuse to do (some of)them because, under the guidelines they have been given, they are considered unnecessary.

Now some GPs are megolomaniacs, but not all. They have to operate within guidelines and be prepared to explain why they have recommended (or not) certain treatments. NICE and NHS England have taken quite a bit of power away from GPs over the last few years I think.

It is NICE and NHS England that sit back and allow frontline GPs to bear the brunt of criticism, but it is their job to support and inform GPs (I think). They are aware of the problems with the current guidelines but are still happy to maintain the status quo.

Weren't PCTs abandoned and replaced by CCGs - Clinical Commissioning groups run by GPs...
Something to do with reducing management/admin levels and adding to the ridiculously high workload of GPs; or have I got my acronums mixed up?
 

Invisible Woman

Senior Member
Messages
1,267
Weren't PCTs abandoned and replaced by CCGs - Clinical Commissioning groups run by GPs...
Something to do with reducing management/admin levels and adding to the ridiculously high workload of GPs; or have I got my acronums mixed up?

Yes they were. Some more info:

http://www.nhscc.org/ccgs/

I have PCTs on the brain - they refused some treatment for me in the past despite my GP standing up for me.

The hierarchy is still there though - the CCG have to approve treatments and a GP is still answerable to them regarding the treatment (s)he prescribes. NICE providing treatment guidelines.
 
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Invisible Woman

Senior Member
Messages
1,267
You may be right, @Invisible Woman. But for what its worth, I think we need to be really cautious in making claims that funding bodies are in bed with those controlling welfare payouts/insurance. Only make them when we are sure its true. Else we sound like conspiracy theorists. Which could undermine our legitimate concerns.

I'm on a government grant funding panel, the largest in our country, and I can tell you,when I evaluate research proposals, I don't give a damn about insurance and welfare payouts. Not one flying ****. Neither do my panel members or the panel chair. And our recommendations are final. I doubt my country's some sort of weird exception to the rule, there's probably lots of other administrations that work this way too. One hand simply has no interest in what the other is doing.

Government policy does come into our funding decisions, but only indirectly, because the govt determines how much money will be made available in the first place (for example X million on basic biol science, X million on economics, etc.)

I'm not saying financial interests aren't an important factor that buoys research in the BPS area. I think they are. I'm also not saying you're wrong to suggest these interests are influencing funding decisions - you could well be right. Just saying we should all apply caution.

I take your point.

However, I think one of the problems (in this country at least) is that once a person is seen to be influential in an area, they are more likely to be automatically deferred to and in this way their power base grows. This is not necessarily due to a concerted conspiracy. I think this has happened with a number of the BPS advocates. And as the saying here goes: "it's not what you know, it's who you know."

Mansel Aylward - one of the BPS leading lights who (allegedly) was very influential in the British governments move to a BPS model in the benefits system is the director of the Centre for Psychosocial Research in Cardiff University. This is funded by Unum, the massive international insurance company. Mansel Aylward has been discussed recently in this thread:

http://forums.phoenixrising.me/index.php?threads/dns-‘biopsychosocial’-basis-for-benefit-cuts-is-‘cavalier-unevidenced-and-misleading’.45109/#post-745758

I agree that we should not go firing indiscriminate accusations & I am not suggesting that there has been a genius master plan here. However, as a service user in the UK, it seems that there is a very closed and powerful, tightly knit group of people, who happen to be of the BPS school and many of these have been in receipt of funding by insurance companies.
 
Messages
3,263
@Invisible Woman, thanks for clarifying. What you say here seems very reasonable to me. I've no doubt that government policy can be influenced by these sorts of frameworks because they appear plausible from the outside, and offer attractive financial incentives.

Likewise, it makes sense that insurance companies might want to sponsor this type of work; it could save them a lot of money in payouts.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
....this thread showed up in Google Scholar alerts yesterday. Apparently, we have graduated.

Initially, due to the title and the context, I thought Peter White had written something about Phoenix Rising, and was imagining the fiery maelstrom that was about to result... ;)

-J