Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
The electromagnetic fields from computers, telephones, and other devices make me sicker.

I'm mostly housebound, so not much else to do.

Better off getting the kids sunshine, fresh air, and yoga than sitting in front of CBT video games.

Could also give cooking and nutritional classes. That would help CFS'ers also.
Where are the studies or proof that sunshine, fresh air, and yoga are effective for ME/CFS? While those things are probably good ideas - with the possibly exception of yoga in many cases - I don't see any evidence for what you're saying cures ME/CFS.

EMFs are a problem for some people, and in that case, if CBT frequency is the important factor, increased F2F CBT sessions might be the answer, esp. if the therapist could come to the person's home.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
No such thing as a rigorous study with inadequate inclusion criteria. The two are antithetical. End of story.
That definitely could be a weakness or even fatal flaw of the study. I'm not sure yet whether we can jump to that conclusion just b/c they used CDC. I think we need to know more about the populations they studied.

Even with that flaw, however, the fact that with random sampling the results were so much more impressive in the study group is compelling. I think even if we need more refinement in the inclusion criteria, the results are still interesting and warrant further examination & study.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
Unfortunately, in actual reality, that isn't the scientific method when it comes to psychological treatments for CFS/ME. The PACE Trial has widely been reported as achieving a "30% recovery" rate, but on close inspection we discovered that these results are fatally flawed, incorrect, and misreported.
Well, that's why this study has to be scrutinized. Do you have evidence of those errors in this study?


There are so many variables in this new FITNET study, that until it is analysed closely, then it shouldn't be taken at face value.
I haven't had time to analyse it yet, so I've used the PACE Trial as an example of why we can't take things at face value.
Like I said before, we have to remain skeptical. But skepticism can be approached from the standpoint of benevolence or malevolence. I think we need to maintain a benevolent skepticism so that we don't throw away potentially useful interventions b/c of preconceived biases. Many people as we see already are conflating web-based CBT with RW (real world) CBT. And that's not even accounting for differences in frequency. So that is a big mistake, imho.


The control group were doing GET, CBT and rehabilitation therapy.
Not all of them did GET - only about half, I think - and not all of them even did CBT. Maybe that's a weakness of the study. A follow up study putting web-based CBT up against RW CBT, with a control group who gets no intervention, would be interesting to see, imo.



I don't think that's what's going on here Mr Kite.
I think it's a case of being deeply skeptical, based on many past experiences.

Personally, I think it's dangerous to just accept a study like this without deep skepticism and analysis.
To accept the unlikely notion that CBT 'cures' CFS/ME patients, based on one study that hasn't been properly analysed, is dangerous.
It could be dangerous to those patients being treated (or patients who might be treated in the future based on these results), and it is also more propaganda for psychiatrists that ME is propagated by a maladaptive fear of exercise, and that therefore no funding for the investigation of biomedical causes is needed. In the comment by White and Chalder, they have more or less said that already... Along the lines of: "it doesn't matter what the cause is, as long as we have an effective psychological treatment".


I question that CBT is harmless for children or adolescents. It depends on what form that CBT takes.
If it is a sensible, sensitive and caring form of CBT based on the physical reality and scientific nature of ME, and not on some ideologically-based invented theory about a psychological fear of exercise, then it might be benign.
But if children are told that they have faulty thinking, that their symptoms aren't real, that their feelings are not validated or important, or if there is a suggestion that they are being malingerers or liars, then I think this could lead to all sorts of long-term psychological damage.
Children need support, and validation of their experiences, not undermining.
I'd have to have detailed knowledge of the CBT course before I could come to a conclusion about whether it is harmless or not.
Those are all good points, and definitely we should be aware of them and try to analyze the study. Saying it's total BS before we've analyzed it just b/c other studies of Non-web based CBT haven't been successful is a big mistake, I think. I've seen studies that show - whether anyone believes it or not - that the attitude of the physician can even influence the course of ME/CFS in patients. The web-based study seems to take that degree of RW human interaction out of it, so that even non-verbal cues of disapproval, disbelief, etc. on the part of the therapist are minimized or even completely absent. So something as simple as that could be making all the difference between a useless or even harmful intervention and one that could perhaps provide some benefit.
 

Bob

Senior Member
Messages
16,455
Likes
34,047
Location
England (south coast)
Yeah - if CBT is performed as part of a quest for truth and clarity of thought, then I would have thought it could be of some use to almost everyone.

When it is performed pragmatically, in order to promote certain beliefs which are thought to correlate with functionality, then it's almost always repulsive quackery imo. Medicalising the cognitions of others is a really big step, and should only be when there's really compelling evidence that the patient's cognitions are distorted/unreasonable/false. With CBT and CFS, it's often the other way round, with therapists promoting the notion that CFS is the result of deconditioning or a fear of exercise, and that recovery is under the patient's personal control, despite the growing evidence that this is not true. That no-one has been fired, or faced disciplinary consequences for this prolonged institutionalised disinterest in reality is pretty sickening to me, and would make it difficult to imagine ever being able to use any CBT-type services from the NHS.
Yes, it seems to me that even the suggestion that an illness is propagated by the maladaptive thought processes or behaviour of a child/adolescent could be undermining to that child. It places the blame with the child. So they've then got to go through their lives believing that they invented and caused their own illness because they weren't able to think like 'normal' people. i.e. they are inferior and weird. I think it's abusive, and causes unnecessary guilt.

I've always objected to the theory of CBT for depression.
The theory always used to make me feel even more guilty about my own depression.
The theory is, of course, that depression is perpetuated by maladaptive cognition and behaviours.
I always found this insulting, undermining and patronising.
What the heck did they know about my life, to be able to make that judgement?

In the case of ME, this approach seems even more hostile towards the patient, and far more dangerous, considering the symptoms and nature of ME (i.e. PENE and PEM).

Of course there can be cognitive ways of dealing with depression, or easing the pain of depression.
Mindfulness meditation is something that can help cope with depression, in my experience.
It doesn't lift the depression, but it does help to avoid the negative compounding cognitive reactions to depression, such as guilt, anger, frustration etc. that come alongside depression.

I'd like to see them use mindfulness and relaxation used as control groups for ME patients in these trials... I think that would give some interesting results.

I assume that CBT can sometimes be effective for depression (although i've never actually met anyone who has found CBT very effective), but there can be biological causes of depression that CBT cannot help with.
And, if CBT is so effective for depression, then why is so much Prozac prescribed?
 

Esther12

Senior Member
Messages
13,774
Likes
28,356
OT post that touches v briefly on some complicated ideas, and fails to explain them at all well. Probably worth ignoring unless you are Bob. (I'm also really exhausted and busy at the moment, so it might not even be worth you reading Bob. I've just got some things done though, and can spend some more time resting up now, so my normal hight quality of posts should soon return). edit: I've also not been keeping up with this thread, and have not replied to some of the other posts I'd have liked to were I not so bleary eyed.

Yes, it seems to me that even the suggestion that an illness is propagated by the maladaptive thought processes or behaviour of a child/adolescent could be undermining to that child. It places the blame with the child. So they've then got to go through their lives believing that they invented and caused their own illness because they weren't able to think like 'normal' people. i.e. they are inferior and weird. I think it's abusive, and causes unnecessary guilt.
I think it's more complicated than that, and that illnesses can be propagated by maladaptive thought process and behaviour (to some extent, I would expect that almost all are)... but it's just that we should expect some evidence that this is the case before it becomes acceptable to treat people as if this is the case - and the presentation and exploration of the evidence should be done on terms of equality and part of a pursuit of truth. I also think that the psychosocial harm done by the promotion of particular psychosocial idea needs to be accounted for in any assessment of outcomes.

I've always objected to the theory of CBT for depression.
The theory always used to make me feel even more guilty about my own depression.
The theory is, of course, that depression is perpetuated by maladaptive cognition and behaviours.
I always found this insulting, undermining and patronising.
What the heck did they know about my life, to be able to make that judgement?
From what I've been reading, you're absolutely right. And again, there will be no accountability.

There's much more thoughtful and interesting work going in to CBT for depression than for CFS, and patients with depression generally seem to be viewed with more respect, but there's still been a real problem with incompetent pragmatism, and it seems like people are only beginning to realise the harm they've been doing. I've read some good recent stuff on depression and the problems of reality-testing based CBT, and the evidence that depression is often not the result of cognitive distortions, but that those with depression tend to have more realistic views of life in a number of areas... but it doesn't seem to be causing the stir I think it should, partly, I think, because (imo) once a group of people are classed as mentally ill, their cognitions and rights are automatically treated with less respect than other groups, which can justify the carelessness with which medical staff can then treat them.

Another problem that 'depression' and 'cfs' seem to share is that all manner of different people with different health problems are being lumped together under these diagnoses (there is all sorts of sub-dividing going on within depression, although I don't know much about this yet and it doesn't seem to happen with lots of people), and this can lead to really crude and unhelpful 'treatment'. There does seem to be a somewhat conventional, cognitively driven form of depression, with guilt, self-doubt, etc, etc... but lots of other people get classed as depressed without having these problems, and can end up receiving really inappropriate treatment.

There's also seems to be a lot of trouble/controversy over the real efficacy of anti-depressants for those who are being classed as depressed and prescribed them.

And so on. Rather OT, and also something I would like to read more about before spending too much time espousing my own views. I have found the academic work around the problems of psychiatry and depression to be of a higher standard, or at least reflect a wider range of concerns and viewpoints, than the stuff we get dumped with for CFS though, where any controversy or patient complaint seems to be dismissed as a fear of the stigma of mental health problems, or naive Cartesian dualism.

Mindfulness meditation is something that can help cope with depression, in my experience.
I've always done bits of meditation, just as a fun thing to do. I think it's helpful as a tool to help one understand one's own mind. I really don't spend as much time doing it as I should, but I'd recommend it to anyone.
 

Bob

Senior Member
Messages
16,455
Likes
34,047
Location
England (south coast)
Well, that's why this study has to be scrutinized. Do you have evidence of those errors in this study?
I haven't fully read the FITNET study yet, but I have spotted an immediately obvious weakness in the methodology, which I'll explain below, at the end of this post.


Like I said before, we have to remain skeptical. But skepticism can be approached from the standpoint of benevolence or malevolence. I think we need to maintain a benevolent skepticism so that we don't throw away potentially useful interventions b/c of preconceived biases. Many people as we see already are conflating web-based CBT with RW (real world) CBT. And that's not even accounting for differences in frequency. So that is a big mistake, imho.
That's a fair opinion to have, but it's not an opinion that I share, based on my understanding of the nature of ME. (See below for more explanation about this.)


Not all of them did GET - only about half, I think - and not all of them even did CBT. Maybe that's a weakness of the study. A follow up study putting web-based CBT up against RW CBT, with a control group who gets no intervention, would be interesting to see, imo.
Yes, they haven't given us a breakdown of the results for the control groups, as far as I can see.
But some patients received more than one control therapy, so they can't break it down properly anyway.
It would have been interesting, and helpful, if they could have done.
For example, the rehabilitation group might have done exceptionally well, but the GET group might have all deteriorated drastically. Or the other way around.
(I can't help feeling that they've done this on purpose, to avoid proper analysis.)

57% of participants received more than one treatment.
cognitive behavioural therapy = 66%
rehabilitation treatment = 22%
physical treatment (mostly graded exercise therapy) = 49%
alternative treatment = 24%


Those are all good points, and definitely we should be aware of them and try to analyze the study. Saying it's total BS before we've analyzed it just b/c other studies of Non-web based CBT haven't been successful is a big mistake, I think. I've seen studies that show - whether anyone believes it or not - that the attitude of the physician can even influence the course of ME/CFS in patients. The web-based study seems to take that degree of RW human interaction out of it, so that even non-verbal cues of disapproval, disbelief, etc. on the part of the therapist are minimized or even completely absent. So something as simple as that could be making all the difference between a useless or even harmful intervention and one that could perhaps provide some benefit.
The reason that there is immediate skepticism, dismissal, and even cynicism about this trial is because of the conflict between the reported results and our understanding of the nature of ME.

To illustrate what I mean, for arguements sake, let us assume that there might be different types of Chronic Fatigue, CFS and ME.

To fit the fukuda criteria, you do not have to have Post Exertional Malaise (is my memory correct there?), so some people would argue that fukuda does not diagnose specifically for a discrete disease known as 'ME', but that it includes people with other types of chronic fatigue, including those with psychological factors.

The fukuda criteria diagnoses CFS, but it does not specifically diagnose ME, such that the ICC diagnoses. Therefore fukuda possibly diagnoses for a heterogeneous syndrome rather than a distinct disease.

So if we are talking about a version of Chronic Fatigue which might have psychological factors as a cause (a fukuda subset), then yes, maybe CBT might be helpful in those cases.

But if we are talking about a biomedical (neuro-endocrine-immune) disease (a fukuda subset), such as the ICC diagnoses, and such that has been shown to have multiple physical symptoms and signs, then it is preposterous to suggest that 80% of patients would be cured by a simple course of CBT, anymore than 80% of Parkinson's patients would be cured by CBT because it is a neurological disease, not a psychological condition.

The suggestion of a 'cure' or 'recovery' is immediately laughable, hence the immediate cynical reaction. My earlier 'cancer' analogy is appropriate (at least, as it applies to a subset of fukuda CFS patients - e.g. patients who fit the ICC criteria), because cancer and ME (ICC) are both biomedical diseases, and not psychological conditions.

Yes, there are questions to answer in relation to the FITNET trial, such as why the control groups showed such a vastly different response rate, but there might be obvious reasons for this once the trial has been analysed. The results might not have been reported with clarity (i.e. obfuscation), for example, and they might have set up the trial in such a way as to make their online CBT results look favourable. Or, like I said earlier, some or all of the control therapies might simply have been inappropriate or harmful, meaning that the patients had no chance of improving.

But unfortunately, we won't be able to analyse the control groups properly because of the way they have been designed (i.e. each patient received more than one control therapy.)

Unless they used a neutral intervention, such as relaxation, as a control group, then it isn't really a valid or proper control group. As it was set up, the control group was in fact another 'therapy' group, not a control group.

So I can see immediately that it's a badly designed study because the control therapies are flawed, because they not neutral interventions. Also, we cannot distinguish between the control therapies. If the authors understood, or cared about, the real nature of ME, then the study would not have been designed with potentially damaging control therapies. We know that activity can be harmful for ME patients, so therapies that involve activity are not appropriate controls. If a control group is, in fact, an 'intervention', then it is not really a control group. The fact that they will not be able to give us the results for each of the control therapies is another weakness of the study. I can't help feeling it was designed this way for purposes of obfuscation.
 

Bob

Senior Member
Messages
16,455
Likes
34,047
Location
England (south coast)
Apologies for being off-topic. Please ignore this post if you aren't interested in CBT and depression.

I think it's more complicated than that, and that illnesses can be propagated by maladaptive thought process and behaviour (to some extent, I would expect that almost are)... but it's just that we should expect some evidence that this is the case before it becomes acceptable to treat people as if this is the case - and the presentation and exploration of the evidence should be done on terms of equality and part of a pursuit of truth. I also think that the psychosocial harm done by the promotion of particular psychosocial idea needs to be accounted for in any assessment of outcomes.
Good points, except I question the first point... I'm not sure if any, or many, illnesses are propagated by maladaptive thought processes etc... Like I said earlier, I think that approach is insulting and damaging... Even something like post-traumatic-shock is a deep-routed emotional response, and I doubt if it can be corrected by a bit of CBT... I suppose something like social anxiety could be described as a maladaptive thought process, but it's a question of what comes first - the negative emotion (e.g. a hyper-sensitive hypothalamus) or the negative thought. It's possibly an interplay of biology and environment, but in my opinion, there is probably a biological propensity for it in the first place.

And it is a chicken and the egg question - Does a depressed person have negative thoughts as a result of negative emotions, or the other way around? I've always believed the former applied to me.


There's much more thoughtful and interesting work going in to CBT for depression than for CFS, and patients with depression generally seem to be viewed with more respect, but there's still been a real problem with incompetent pragmatism, and it seems like people are only beginning to realise the harm they've been doing. I've read some good recent stuff on depression and the problems of reality-testing based CBT, and the evidence that depression is often not the result of cognitive distortions, but that those with depression tend to have more realistic views of life in a number of areas...
Yes, research always shows that people with depression are more realistic than those without. i.e. they make a more accurate analysis when weighing up the evidence presented to them. I suppose that existential crises are linked to depression for the same reason.


but it doesn't seem to be causing the stir I think it should, partly, I think, because (imo) once a group of people are classed as mentally ill, their cognitions and rights are automatically treated with less respect than other groups, which can justify the carelessness with which medical staff can then treat them.
Interesting thoughts.
So depressed people should be treated as behaviourally maladaptive, but cognitively realistic!


Another problem that 'depression' and 'cfs' seem to share is that all manner of different people with different health problems are being lumped together under these diagnoses (there is all sorts of sub-dividing going on within depression, although I don't know much about this yet and it doesn't seem to happen with lots of people), and this can lead to really crude and unhelpful 'treatment'. There does seem to be a somewhat conventional, cognitively driven form of depression, with guilt, self-doubt, etc, etc... but lots of other people get classed as depressed without having these problems, and can end up receiving really inappropriate treatment.
Yes, there are many different types of depression:
Melancholic depression. Dsythymic depression. Bipolar depression. Reactive depression. Endogenous depression. Emotionally driven depression. Grief. Post-natal depression. Disease-related depression. Infection-related depression. Existential depression. Depression with strong negative emotions. Depression with a lack of positive emotions. etc etc etc.


Rather OT, and also something I would like to read more about before spending too much time espousing my own views. I have found the academic work around the problems of psychiatry and depression to be of a higher standard, or at least reflect a wider range of concerns and viewpoints, than the stuff we get dumped with for CFS though, where any controversy or patient complaint seems to be dismissed as a fear of the stigma of mental health problems, or naive Cartesian dualism.
Thanks Esther... Interesting thoughts... But maybe we should start an alternative thread if we are going to post any more about this.


I've always done bits of meditation, just as a fun thing to do. I think it's helpful as a tool to help one understand one's own mind. I really don't spend as much time doing it as I should, but I'd recommend it to anyone. My partner has recently started training to teach mindfulness meditation (online with Shinzen Young), so I'm now getting some free lessons, and that's been good.
Yes, I agree that meditation is helpful, and that it is a tool to help gain insight into the mind.
 

Esther12

Senior Member
Messages
13,774
Likes
28,356
Good points, except I question the first point... I'm not sure if any, or many, illnesses are propagated by maladaptive thought processes etc... Like I said earlier, I think that approach is insulting and damaging...
Just one little point, as I think that I failed to be clear here. With most illnesses, and lives, we can imagine some 'perfect' response to it, which exactly expresses the individual's preferences for their own life, as it's limited by illness - that almost no-one will be able to find and live according to that perfection means that their cognitions and behaviours are, to an extent, maladaptive. All of us are a bit dysfunctional, but that doesn't mean that it's sensible to medicalise everyone's cognitions, or lump certain groups together and have clinicians claim expertise over what they should believe, without their being really compelling evidence as to which beliefs are inaccurate, and what is more likely to be true.

Probably should end it there though. Good luck with everything Bob, and I hope that things improve with any problems you have with depression.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
Yes, they haven't given us a breakdown of the results for the control groups, as far as I can see.
But some patients received more than one control therapy, so they can't break it down properly anyway.
It would have been interesting, and helpful, if they could have done.
For example, the rehabilitation group might have done exceptionally well, but the GET group might have all deteriorated drastically. Or the other way around.
(I can't help feeling that they've done this on purpose, to avoid proper analysis.)

57% of participants received more than one treatment.
cognitive behavioural therapy = 66%
rehabilitation treatment = 22%
physical treatment (mostly graded exercise therapy) = 49%
alternative treatment = 24%
The breakdown was rather just of two groups: web-based CBT, and "usual" treatments as an umbrella for many treatments. Like you said, it would have been useful to have compared to specific treatments only, or as I said, to real-world CBT only, without GET and with a neutral control group.


The reason that there is immediate skepticism, dismissal, and even cynicism about this trial is because of the conflict between the reported results and our understanding of the nature of ME.
But we don't actually have an understanding of the nature of ME. No one knows what it actually is, what initiates it (meaning at the deeper biological levels, not meaning initiated as the result of an infection, stressor, etc.), or what even causes or maintains the fatigue.


But if we are talking about a biomedical (neuro-endocrine-immune) disease (a fukuda subset), such as the ICC diagnoses, and such that has been shown to have multiple physical symptoms and signs, then it is preposterous to suggest that 80% of patients would be cured by a simple course of CBT, anymore than 80% of Parkinson's patients would be cured by CBT because it is a neurological disease, not a psychological condition.
I think you are making a lot of assumptions there, some of them perhaps faulty. I have as "real" a case of CFS as anyone, would fit any existing diagnostic criteria easily, and yet at one time I had a complete remission from EEG neurofeedback. Thoughts and the mind control many processes in the body, including immunity.

The suggestion of a 'cure' or 'recovery' is immediately laughable, hence the immediate cynical reaction. My earlier 'cancer' analogy is appropriate (at least, as it applies to a subset of fukuda CFS patients - e.g. patients who fit the ICC criteria), because cancer and ME (ICC) are both biomedical diseases, and not psychological conditions.
Again, same objections as above. And cancer is not the same disorder as ME/CFS by a long shot. Cancer is an active/invasive disease process somewhere in the body, while ME/CFS obviously is not defined by any tumor or cancerous growth. Two completely different entities, so your argument/analogy is really not valid in that respect.


Yes, there are questions to answer in relation to the FITNET trial, such as why the control groups showed such a vastly different response rate, but there might be obvious reasons for this once the trial has been analysed. The results might not have been reported with clarity (i.e. obfuscation), for example, and they might have set up the trial in such a way as to make their online CBT results look favourable. Or, like I said earlier, some or all of the control therapies might simply have been inappropriate or harmful, meaning that the patients had no chance of improving.

But unfortunately, we won't be able to analyse the control groups properly because of the way they have been designed (i.e. each patient received more than one control therapy.)

Unless they used a neutral intervention, such as relaxation, as a control group, then it isn't really a valid or proper control group. As it was set up, the control group was in fact another 'therapy' group, not a control group.

So I can see immediately that it's a badly designed study because the control therapies are flawed, because they not neutral interventions. Also, we cannot distinguish between the control therapies. If the authors understood, or cared about, the real nature of ME, then the study would not have been designed with potentially damaging control therapies. We know that activity can be harmful for ME patients, so therapies that involve activity are not appropriate controls. If a control group is, in fact, an 'intervention', then it is not really a control group. The fact that they will not be able to give us the results for each of the control therapies is another weakness of the study. I can't help feeling it was designed this way for purposes of obfuscation.
Those are all valid points, I think.
 

Bob

Senior Member
Messages
16,455
Likes
34,047
Location
England (south coast)
Just one little point, as I think that I failed to be clear here. With most illnesses, and lives, we can imagine some 'perfect' response to it, which exactly expresses the individual's preferences for their own life, as it's limited by illness - that almost no-one will be able to find and live according to that perfection means that their cognitions and behaviours are, to an extent, maladaptive. All of us are a bit dysfunctional, but that doesn't mean that it's sensible to medicalise everyone's cognitions, or lump certain groups together and have clinicians claim expertise over what they should believe, without their being really compelling evidence as to which beliefs are inaccurate, and what is more likely to be true.

Probably should end it there though. Good luck with everything Bob, and I hope that things improve with any problems you have with depression.
Thank you Esther... We could have had our discussion about depression on this new thread:
http://phoenixrising.me/forums/show...on-An-Evolutionary-Byproduct-of-Immune-System
 

Bob

Senior Member
Messages
16,455
Likes
34,047
Location
England (south coast)
The breakdown was rather just of two groups: web-based CBT, and "usual" treatments as an umbrella for many treatments. Like you said, it would have been useful to have compared to specific treatments only, or as I said, to real-world CBT only, without GET and with a neutral control group.
Agreed.


But we don't actually have an understanding of the nature of ME. No one knows what it actually is, what initiates it (meaning at the deeper biological levels, not meaning initiated as the result of an infection, stressor, etc.), or what even causes or maintains the fatigue.
Well, there is a lot of research on the biological abnormalities of ME. Much of it suggests that that it is related to an abnormal immune system.


I think you are making a lot of assumptions there, some of them perhaps faulty. I have as "real" a case of CFS as anyone, would fit any existing diagnostic criteria easily, and yet at one time I had a complete remission from EEG neurofeedback. Thoughts and the mind control many processes in the body, including immunity.
I agree that ME can be made worse by physical and emotion stress, and resting definitely helps my symptoms to improve. So I acknowledge that some forms of psychological interventions, or relaxation, might help some people to experience improved symptoms. But I disagree with the basis on which the PACE Trial based their CBT program (i.e. that ME is propagated by a fear of exercise etc.) And I cannot accept that ~80% of ME patients experienced a "recovery" from online CBT sessions, based on my understanding of the illness (both my first hand experience, and the biomedical research). Obviously, if the study stood up to scrutiny, and it was replicated, then I'd have to reconsider. But already the study hasn't stood up to initial scrutiny. The definition of a "recovery" that they used in the FITNET Trial has even (ironically) been challenged by White in his comment.


Again, same objections as above. And cancer is not the same disorder as ME/CFS by a long shot. Cancer is an active/invasive disease process somewhere in the body, while ME/CFS obviously is not defined by any tumor or cancerous growth. Two completely different entities, so your argument/analogy is really not valid in that respect.
I stick by my assertion that a physical disease cannot be cured by thinking differently.
This is the scientific consensus.
If I'm wrong regarding ME, then i'd like to see the evidence. There hasn't been any so far.
ME is not a psychological illness, as much as Wessely & co would have the medical profession believe.
 
Messages
278
Likes
187
Location
Rotterdam, The Netherlands
I think that my ideal medical approach to CFS would be: stop giving money to those who claim to be experts in treating chronic fatigue syndrome.
The money came from the Dutch government. The parliament had claimed a budget for biomedical research into ME, and the minister of health spent the full sum on CBT for chronic fatigue. According to the Dutch government, ME does not exist, while CFS is 'unexplainable chronic fatigue' which in all cases can be cured with CBT/GET.
 

CBS

Senior Member
Messages
1,513
Likes
849
That definitely could be a weakness or even fatal flaw of the study. I'm not sure yet whether we can jump to that conclusion just b/c they used CDC. I think we need to know more about the populations they studied.

Even with that flaw, however, the fact that with random sampling the results were so much more impressive in the study group is compelling. I think even if we need more refinement in the inclusion criteria, the results are still interesting and warrant further examination & study.
The issue here is a matter of understanding to whom these study results might apply. Using the CDC's "emperical criteria" - Reeves, 2005 (apparently something even Suzanne Vernon - a co-author and long time defender of the CDC's "Reeves criteria" - is no longer willing to do - a recent post by Cort stated that the CAA is finally limiting all the research they fund to only those studies using patients meeting the Canadian Consensus Dx criteria) - means that some very large percentage of the patients in this study likely had MDD and not 'CFS.' Jason (Evaluating the Centers for Disease Controls Empirical Chronic Fatigue Syndrome Case Definition - 2009) found roughly 40% of those diagnosed with MDD met the CDC's 2005 Empiric CFS criteria. Even more shocking was his analysis of how large a percentage of those diagnosed with CFS actually don't have CFS but rather MDD (he wasn't not talking CFS patients with co-morbid MDD). In a presentation for the CAA in 2010, (again, not a group than can be accused of taking many radical positions) Jason estimated that upwards of 80-90% of all patients diagnosed as having CFS using the empiric definition actually had 'MDD' and NOT "CFS."

For those wondering how the figure that 40% of MDD patients meet the criteria for CFS and 80-90% of those diagnosed with CFS actually don't have have CFS but rather MDD, it's all about population prevalence. If you have one to four million people in the US who actually have "CFS" and 6.7% (NIH estimate) of the 225 million adults in the US in any one year suffering from MDD (not including adults with mild depression - dysthymic disorder), that is over 15 million people with MDD. If thirty-eight percent of 15 million people with MDD would be diagnosed with CFS using the CDC criteria, that means that 5.7 million MDD patients would be misclassified as having CFS. Using a diagnostic criteria that cannot distinguish between MDD and 'CFS' (see the Jason article) then you have a major issue. At best, 60% of your 'CFS' patients are likely to be misclassified MDD patients. At worst, 85% of your CDC 'CFS' patients would be expected to actually be MDD patients. And none of this even begins to explore the wildly inappropriate conclusions that would be drawn from this study for patients meeting the ICC diagnostic criteria for ME.

So, the answer to my implied question, to whom do these results apply? - has to be that we do not know and neither do the study's authors.

That anything useful has ever come of the various CDC diagnostic criteria for CFS is pure chance and the harm done my all of the wasted time, money and lives that follows from such a ridiculous approach to trying to (mis)understand a disease is a crime.

This study was not worth the paper it was written on, nor should any conclusions from it be taken seriously because we CANNOT know to whom these "results" might apply.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
The issue here is a matter of understanding to whom these study results might apply. Using the CDC's "emperical criteria" - Reeves, 2005 (apparently something even Suzanne Vernon - a co-author and long time defender of the CDC's "Reeves criteria" - is no longer willing to do - a recent post by Cort stated that the CAA is finally limiting all the research they fund to only those studies using patients meeting the Canadian Consensus Dx criteria) - means that some very large percentage of the patients in this study likely had MDD and not 'CFS.' Jason (Evaluating the Centers for Disease Controls Empirical Chronic Fatigue Syndrome Case Definition - 2009) found roughly 40% of those diagnosed with MDD met the CDC's 2005 Empiric CFS criteria. Even more shocking was his analysis of how large a percentage of those diagnosed with CFS actually don't have CFS but rather MDD (he wasn't not talking CFS patients with co-morbid MDD). In a presentation for the CAA in 2010, (again, not a group than can be accused of taking many radical positions) Jason estimated that upwards of 80-90% of all patients diagnosed as having CFS using the empiric definition actually had 'MDD' and NOT "CFS."

For those wondering how the figure that 40% of MDD patients meet the criteria for CFS and 80-90% of those diagnosed with CFS actually don't have have CFS but rather MDD, it's all about population prevalence. If you have one to four million people in the US who actually have "CFS" and 6.7% (NIH estimate) of the 225 million adults in the US in any one year suffering from MDD (not including adults with mild depression - dysthymic disorder), that is over 15 million people with MDD. If thirty-eight percent of 15 million people with MDD would be diagnosed with CFS using the CDC criteria, that means that 5.7 million MDD patients would be misclassified as having CFS. Using a diagnostic criteria that cannot distinguish between MDD and 'CFS' (see the Jason article) then you have a major issue. At best, 60% of your 'CFS' patients are likely to be misclassified MDD patients. At worst, 85% of your CDC 'CFS' patients would be expected to actually be MDD patients. And none of this even begins to explore the wildly inappropriate conclusions that would be drawn from this study for patients meeting the ICC diagnostic criteria for ME.

So, the answer to my implied question, to whom do these results apply? - has to be that we do not know and neither do the study's authors.

That anything useful has ever come of the various CDC diagnostic criteria for CFS is pure chance and the harm done my all of the wasted time, money and lives that follows from such a ridiculous approach to trying to (mis)understand a disease is a crime.

This study was not worth the paper it was written on, nor should any conclusions from it be taken seriously because we CANNOT know to whom these "results" might apply.
The study screened for depression, though.

Exclusion criteria were primary depression, anxiety
disorder, or suicidal risk, as assessed with computerised
self-reported ques ion aires (Dutch translation of the
child depression inventory27 and state-trait anxiety
inventory for children28). If scores were abnormal,24 a
skilled psychologist undertook a clinical assessment to
exclude primary depression or anxiety.
 

CBS

Senior Member
Messages
1,513
Likes
849
The study screened for depression, though.
The Jason analysis took into account that the 2005 Empiric diagnostic criteria required that patients be screened for depression and that those with primary depressive disorder be excluded from a diagnosis of 'CFS.' Even so, "38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition."
 
Messages
140
Likes
66
Location
SF Bay Area
Very good points. For a lot of people with CFS, getting up and logging onto a computer for CBT every day is not that far outside our daily routine anyway. It is much less stressful and physically taxing than having to go to an actual appointment, and everything that attends that. Something as simple as that could make all the difference in success or failure, b/c for a lot of people w/ CFS I think there's almost an built-in aversion to having to go almost anywhere. We all know that any amount of exertion could make us worse - maybe even seriously. Being able to do everything from home from your PC takes a lot of the pressure off - and in many cases a lot of the resistance, too.

Good point also on following what is useful in the CBT and forgetting the rest, and thanks for that description of your other CBT experience. It's interesting, especially to hear that the improvement is going faster the longer you've been doing it. Maybe it takes a while w/CBT to start hitting your stride, as it were, and traditional CBT simply hasn't been intensive enough to reach that take off point. The increased frequency of the web-based CBT might be what's making the difference.
Sorry I wasn't clear that I've only been following the blog for the last year, so the faster improvement was immediate.

Also, which parts are useful is different for different people, so you really don't know until you test them yourself. Some people think they do better with the mind produces matter worldview and some people do better with the matter produces mind worldview.

Another difference between Internet and face to face therapy is that it gets rid of the "but you don't look sick" effect that might affect how the therapist interacts with the client.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
The Jason analysis took into account that the 2005 Empiric diagnostic criteria required that patients be screened for depression and that those with primary depressive disorder be excluded from a diagnosis of 'CFS.' Even so, "38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition."
Sorry, but that really seems to be a rather self-serving viewpoint. If patients in the study had MDD and didn't really have CFS, according to the authors they would have been screened out. You can't go around claiming people had some disorder they were said not to have had just b/c it suits your agenda. That's not really much different than claiming they all had AIDS. Where's your specific evidence that they actually had MDD?
 

CBS

Senior Member
Messages
1,513
Likes
849
Sorry, but that really seems to be a rather self-serving viewpoint. If patients in the study had MDD and didn't really have CFS, according to the authors they would have been screened out. You can't go around claiming people had some disorder they were said not to have had just b/c it suits your agenda. That's not really much different than claiming they all had AIDS. Where's your specific evidence that they actually had MDD?
I'm afraid that we're probably going to have to agree to disagree on my "agenda." My point was that the CDC criteria cannot differentiate reliably between 'CFS' and MDD and therefore ALL research based upon the CDC criteria is of dubious value (even studies showing immunological or infectious agents associated with 'CFS'). And I don't consider my previous statement a "viewpoint" but rather an accurate description of the findings in a related study. I'd love to see research which speaks to the criticisms leveled by Jason et al.

My expectation is that someday in the not too distant future we'll be having to discard all studies that relied on the CDC and similar diagnostic criteria. Again, my belief is that these poor diagnostic criteria are THE primary reason for the lack of progress towards of better understanding of 'CFS.'
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
I'm afraid that we're probably going to have to agree to disagree on my "agenda." My point was that the CDC criteria cannot differentiate reliably between 'CFS' and MDD and therefore ALL research based upon the CDC criteria is of dubious value (even studies showing immunological or infectious agents associated with 'CFS'). And I don't consider my previous statement a "viewpoint" but rather an accurate description of the findings in a related study. I'd love to see research which speaks to the criticisms leveled by Jason et al.

My expectation is that someday in the not too distant future we'll be having to discard all studies that relied on the CDC and similar diagnostic criteria. Again, my belief is that these poor diagnostic criteria are THE primary reason for the lack of progress towards of better understanding of 'CFS.'
But we could just as easily say that the Jason study was flawed and based on faulty methodology. Maybe the people they thought had MDD really had schizophrenia, or cancer. Or maybe they didn't have MDD at all. Then you just go around in circles, because that's a nihilistic approach.

If you want to disprove or invalidate the findings of this study, you either have to document specific flaws in it, or else produce another study that produces different results and reaches different conclusions. You can't go around throwing away whatever study you want just b/c it doesn't suit your agenda.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,242
Protocol was based on this manual

Mr.Kite said:
GET doesn't appear to have been a component of the therapy, so it doesn't seem like any harm could come from it - and possibly a whole lot of good, if the results applied to adults as much as they seemed to here for children.
The protocol on which the internet-CBT intervention is based is:
-----
Bleijenberg G, Prins J, Bazelmans E. Cognitive behavioral therapies.
In: Jason LA, Fennel PA, Taylor RR, eds. Handbook of chronic fatigue syndrome. Hoboken: Wiley and Sons, 2003: 493526.
----

It's available at: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009C&L=CO-CURE&P=R1774&I=-3

It does involve graded activity - quite dramatically if one is classed as pervasive passive. Of course, whether patients actually did this, who knows.

The initial daily frequency of the activity, however,
is higher and preferably set at 6 times a day (i.e., twice in the
morning, twice at noon, and twice in the evening). A 1-minute walk is
commonly chosen as a first activity. Low-active patients seldom opt
for cycling. A minute is added each day [Dolphin: i.e. 6 x 1 minutes added each day], with a total of 5 minutes per
week. This leaves 2 minutes to spare, allowing the patient to skip a
day or to refrain from raising the duration of the exercise.

It is important to point out to patients that a 1-minute increase is
absolutely safe and that there is no danger, whatsoever, of
overtaxation. Emphasize that with these small but consistent
increments, a great deal of progress can be made in only a few weeks,
barring exceptional circumstances (see Figure 23.3). It is common to
cut back the frequency of the walks from 6 times a day to 2 or 3 times
a day after several weeks. Even before reaching a certain level such
as a twice-a-day 60-minute walk, patients will find that they are now
able to undertake other activities. By then, patients will also have
noticed that recovery from an activity is much faster.
I don't like having two threads on the same study. I see myself making most of the points I'm going to make on: http://forums.phoenixrising.me/show...et-based-CBT-for-CFS-an-RCT-(Nijhof-et-al-12)