IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

Invisible Woman said:
Are the good ones, using CBT as a support and adjustment therapy, doing so on the quiet? Are they doing so knowing it isn't actually what the guidelines mean and want to keep their heads down in case someone notices and demands they inflict the toxic kind?
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As I understand it this isn't CBT. CBT is defined as a treatment that aims to alter thoughts or beliefs and there by change behaviour. I don't really think there is such a thing as coping CBT. It is just counselling and explaining and moral support. Someone on our table expressed surprise that a patient should discriminate between coping and belief changing CBT. It seems pretty clear that a lot of the health professionals involved in ME/CFS care don't really have much idea what BPS CBT is, or even what CBT is. Wesley said to me he was worried this was the case.

Which is all the more reason to be absolutely clear that whatever help patients are given it is not under the heading of CBT. Exactly the same applies to GET. There seemed to be general agreement amongst the health professionals that they did not in fact use GET but activity management. So the BPS labels are being used to rubber stamp what may be mostly common sense approaches. It would be much better to admit that these are just common sense approaches and that since they are not what was studies in PACE etc, PACE etc. are irrelevant.
 
I think they are responding to patient's cognitions.

To be fair, even at GOSH where we saw the Psychologist with our daughter we never felt that she was trying to alter any "false illness beliefs", but just generally more "supportive", eg Q"what issues are there?", A " people dismissing the severity of my illness because of the rubbish printed in the press", with realistic suggestions on how to combat/deal with that.

Disappointingly, said psych has moved to Kings.... This was c 6 years ago and she was pretty young.

The rest of the approach was v BPS and the PACE trial was published while we were there. By then however I was more informed and strongly argued against the "deconditioned" idea, as it certainly was not relevant in her case.
 
I see what you're saying @Jonathan Edwards but....common sense approaches....

I don't see that will be any different what we have now - until we can demonstrate that exertion (even extreme!y mild exertion) in some cases is enough to worsen the condition.
 
Jonathan Edwards said:
As I understand it this isn't CBT. CBT is defined as a treatment that aims to alter thoughts or beliefs and there by change behaviour.
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I assume you could have "coping" CBT which tried to challenge depressive thoughts that were associated with being ill or other thoughts associate with not coping with being ill.

But I suspect more general counseling or in some cases help with practical problem solving (e.g. how to get meals, clean the house etc) would be far more positive.
 
Jonathan Edwards said:
That in itself does not make the studies bad science. It just means that any conclusions have to be applied to an Oxford defined population. I think the Oxford criteria are a poor way of defining a population but they do not make the studies invalid. I would agree with the PACE authors that this is not an argument against validity. The arguments against validity come in the trial design.
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Sorry I don't agree with this simply because the results ARE being imposed as a treatment on a separate patient group, namely non Oxford "ME/CFS".

Would you agree with the PACE authors claims of non invalidity if they used PACE to go around claiming that their treatments can be applied to MS or MND or cancer on the strength of admitting they used Oxford criteria for their studies.

Part of the flaw in the trial design is the fact that they claim to be studying something that they are not. Therefore there are multiple reasons for the trial to be declared invalid.

I really think we would be shooting ourselves in the foot if we didn't get over to NICE that their recommendations effect everyone under the banner label "CFS" and the PACE trial plus the deliberately previous selective "evidence base" is a deliberately selective patient group that many can feasibly argue does not even represent any ME patients at all and the fact that the so called experts who carried out that trial cannot possibly claim they didn't understand such issues when they designed the trial and went on a fan fare in the press afterwards declaring it a cure for 60% of people with ME.

The fact still remains anyway that there's no supportive evidence that the current treatments help ANYONE, correct, but we shouldn't be afraid to point out the deliberate deception that the PACE investigators attempted when they chanced their arm on their treatments showing some efficacy for a narrow patient group so that they could deliberately role them out for all other patient groups. They got five million quid to study a supposed syndrome but deliberately selected a streamlined group.

A spade is a spade, that's what they did that's what we should get across to NICE.
 
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large donner said:
Sorry I don't agree with this simply because the results ARE being imposed as a treatment on a separate patient group, namely non Oxford "ME/CFS".
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But my understanding was that people with ME or CFS by Canadian or ICC criteria do fit the Oxford criteria, because they are wider. Using wider criteria may miss differences within a group but it is still scientifically perfectly legitimate.
 
Jonathan Edwards said:
But my understanding was that people with ME or CFS by Canadian or ICC criteria do fit the Oxford criteria, because they are wider. Using wider criteria may miss differences within a group but it is still scientifically perfectly legitimate.
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The difference is that the PACE group were commissioned with government money to study a syndrome not a selective group within a syndrome that would help support their own narrative.

How can it be scientifically legitimate if it doesn't understand the definition of a syndrome. Its like studying gender by only including men in a trial.
 
large donner said:
The difference is that the PACE group were commissioned with government money to study a syndrome not a selective group within a syndrome that would help support their own narrative.
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That may be so but that does not make it bad science. It is perfectly acceptable for some trials to deal with wider groups of patients and others with narrower. Some trials deal with arthritis as a wide category, some with specific forms of arthritis within that. Both are fine scientifically.
 
Jonathan Edwards said:
But my understanding was that people with ME or CFS by Canadian or ICC criteria do fit the Oxford criteria, because they are wider. Using wider criteria may miss differences within a group but it is still scientifically perfectly legitimate.
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Oxford requires fatigue to be the principal symptom, which is not the experience of many ME patients. Oxford also requires the presence of mental fatigue.
 
Jonathan Edwards said:
That may be so but that does not make it bad science. It is perfectly acceptable for some trials to deal with wider groups of patients and others with narrower. Some trials deal with arthritis as a wide category, some with specific forms of arthritis within that. Both are fine scientifically.
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Would you drink London tap water based on a study on UK wide water that only tested water from the Scottish Highlands?
 
Jonathan Edwards said:
That may be so but that does not make it bad science. It is perfectly acceptable for some trials to deal with wider groups of patients and others with narrower. Some trials deal with arthritis as a wide category, some with specific forms of arthritis within that. Both are fine scientifically.
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Earlier you posted on the "phenomenon" as you descried it wherby people would be convinced they had RA when they simply didn't met the criteria, would you selectively include such people in an RA study then report on the findings as an RA study and would this be scientifically valid?
 
Valentijn said:
Oxford requires fatigue to be the principal symptom, which is not the experience of many ME patients. Oxford also requires the presence of mental fatigue.
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I thought that fatigue had to be a feature with all these criteria. And most PWME on the forums seem to have mental fatigue so I would bet that nearly all the patients here fit Oxford if they fit the other sets.
 
Jonathan Edwards said:
It is perfectly acceptable for some trials to deal with wider groups of patients and others with narrower
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But surely there is a problem with that. What if one subgroup is harmed by the treatment, but because they are a tiny minority in the particular broad sample, that doesn't show up on the trial results, and the treatment is then approved for all patients in the wider group including those harmed?

I think a potential problem with using the Oxford definition is that it allowed the inclusion of stressed or depressed patients without ME. Thus if the trial had showed an overall success with GET, this might be thought to mean it is helpful for people with ME as well as those with burnout stress or depression, which is not true.

And by using a trial definition that required fatigue as the primary reported symptom by patients, they potentially excluded most ME patients who class PEM as the primary symptom and may not report fatigue as a major symptom, especially as it is such an ill defined concept that many confuse with tiredness.
 
large donner said:
Earlier you posted on the "phenomenon" as you descried it wherby people would be convinced they had RA when they simply didn't met the criteria, would you selectively include such people in an RA study then report on the findings as an RA study and would this be scientifically valid?
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No but that is not the point. They might well be included in a study of joint pain. And studies of joint pain can be applied to people with RA, because people with RA fall into that category. We are not talking about doing a study of Canadian criteria CFS and slipping in some Oxford patients. The study announces itself as studying Oxford patients so its results can be applied to anyone who fits Oxford. It might turn out that within that there is a Canadian subgroup that in fact responds differently, but until that was shown the general rule would be legitimate to apply.
 
Trish said:
But surely there is a problem with that. What if one subgroup is harmed by the treatment, but because they are a tiny minority in the particular broad sample, that doesn't show up on the trial results, and the treatment is then approved for all patients in the wider group including those harmed?
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Yes that is a problem but it is one that one has to accept will always be a possibility. For pretty much all treatments there is a subset who will be harmed. One just has to do one's best to identify that group if one can. Calcium is recommended for people with osteoporosis but a very small proportion of people with osteoporosis will have it from myeloma. Calcium can put myeloma patients into renal failure.

So I absolutely agree that if the PACE authors had considered intelligently the possible subgroups in their Oxford grouping they might have been concerned that they needed to look out for worsening in certain cases. But that still does not make these studies scientifically flawed on those grounds - they are flawed on all sorts of other grounds but not this one.
 
IiME have sent a further letter following the stakeholder meeting yesterday
At the Stakeholder engagement workshop meeting yesterday you were reported as saying that the existing NICE guidelines would be “torn up” and new guidelines developed.

Yet yesterday, just a few hours before that meeting, you wrote to us and stated –

“In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions”

and that you would

“give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”

These remarks seem to us to be contradictory.

If you are now telling participants at yesterday’s meeting that the existing guidelines will be torn up then you are effectively stating that they are of no value.

Therefore, there is no logic in retaining the existing guidelines any longer, which you have previously stated were not effective and which you are now alleged to have said will be completely removed in any case.
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http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-reply2
 
Adrian said:
I assume you could have "coping" CBT which tried to challenge depressive thoughts that were associated with being ill or other thoughts associate with not coping with being ill.
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I always wonder: Why is it bad to feel "depressed" (better: sad) with a disabling illness, where everything changes, financial problems might occurr, partners might leave, friends are lost...? I don't like that you always have to smile and think positive anytime, and if you don't, you need a therapy.

It's different if someone wants this kind of help.

Just a plea to let people feel and do as they feel comortable with (of course excluding doing harm to others).
 
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