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

[charityfundraiser]

The protocol on which the internet-CBT intervention is based is:

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, 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.

Thanks for digging that up! Honestly, the part you quoted sounds like a pretty reasonable thing to try. And if one tries it and it's too much, then change some of the parameters a little and try again. Some schedules use weekly increments instead of days. It's not too different in intent from what some of us figure out by trial and error and are trying anyway. But some of the techniques are different from what one might come up with oneself. For example, personally, I haven't been doing 1 minute increment increases nor on a set schedule. I have been thinking more in terms of 5, 10, 15 minute increases. Now I will test the 1 minute increments.

I had been walking daily from 2007-2011 and the progress was very slow and my limit was around half an hour even after years. I never exactly timed my walks though, just walked as much as I felt I could. Something this brings to mind is a study about severe peanut allergies being brought under control by increasing exposure to peanut dust in micro amounts on a schedule. It wouldn't work if they were just given a whole peanut, I guess if the increment level is too large.

Once again, the importance of framing. This doesn't necessarily have anything to do with abnormal illness beliefs.

 

[charityfundraiser]

The protocol on which the internet-CBT intervention is based is:

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

I just finished reading that long chapter. This is the first time I've read a detailed manual about GET. It was actually quite an interesting read for me. I do not agree with some things but that does not irk me.

Some things I found interesting were that in their review of different studies, they seem to state that GET based on the hypothesis of deconditioning, without CBT, seemed effective as well. That to me suggests that the CBT doesn't necessarily work because of the stated explanations such as working on fear-avoidance. It's a model to get some people to do GET, whatever explanation they put on it- deconditioning, fear avoidance, abnormal illness beliefs, whatever. Personally, I don't believe any of those are true for me. (I wasn't deconditioned. I was exercising up until the day before I became bedridden. I'm not fearful of the fatigue. If a healthy runner can't run more than a marathon, it's not because he's afraid of the fatigue.) However, the method may work even if the explanation for it working may be wrong. It works to some degree for me.. my own trial and error version of it. I think the reason it works for me is more like the peanut exposure for peanut allergy. I'm not going to let beliefs about abnormal illness beliefs keep me from trying GET.

The other thing I found interesting was the different description and treatment of high-active and low-passive patients. Attitude-wise, I'm more like a high-active patient but physical functioning-wise I was like the low-passive patients, so I don't agree with their implying that the different cognitive processes explain the different functioning levels. I've improved enough that now I'm creeping up on the border between low-passive and high-active in terms of activity. Interestingly, their suggested GET schedule for low-passive patients was more aggressive than for high-active patients.

I'm going to try applying GET for myself in a more structured manner.

 

[Esther12]

I do not agree with some things but that does not irk me.

I must be more easily irked than you!

I wouldn't be surprised if different people did find different activity management techniques helpful (and I'm pleased to hear that you've had some improvement), but lumping people together under a CFS diagnosis and treating them in the way described above seems really unjustifiable and manipulative to me.

(Additionally, some parts of that guide are misleading in a way likely to mislead clincians as well as patients, and it's worth remembering that the manual itself is being applied in systems with poor levels of accountability, with often incompetent and poorly trained staff who are encouraged to view themselves as expertly guiding the cognitions of misguided patients, etc, etc... getting more and more OT.).

 

[Firestormm]

Out of interest have you read the two manuals attached to PACE for CBT & GET?

 

[Esther12]

Out of interest have you read the two manuals attached to PACE for CBT & GET?

I still haven't. I've flicked through the CBT one, but haven't had the spare time/energy to read it all yet. I'd like to, but it could also be that they were written with patient readership more in mind, so may be less revealing.

 

[Dolphin]

I must be more easily irked than you!

Me too.
Also, I know how a lot of the piece only tells half of the story - what they are not saying is also very important (all the biological findings, abnormal responses to exercise, etc.).

It may be nice and comforting to think one can get back to health just by doing more. It's not so comforting when one discovers one can't get back to normal doing it; and then one finds one gets blamed for it and that many health systems aren't making other methods to help ME/CFS patients with their health.

 

[Guido den Broeder]

Please, people, be aware that we have a patient association in the Netherlands, and that we have a lot more information on this topic than you will ever have.

We know the ME patients that underwent the Nijmegen version of CBT/GET. None of them improved from the therapy, many became much worse.

Today, ME patients in the Netherlands can find ample warning not to take that therapy or participate in any studies, so the likelihood of still finding ME patients there is low.

As for the kind of patients that do still choose this therapy, those in Nijmegen tend to be depression patients and the pediatrician's patients in Utrecht tend to have anorexia, this based on their complaints as we heard them.


www.mevereniging.nl

 

[Bob]

We know the ME patients that underwent the Nijmegen version of CBT/GET. None of them improved from the therapy, many became much worse.

If those versions of CBT and GET make patients worse, then this would make the average control group scores very low, and this could be why the results were so flattering towards online CBT.

 

[Guido den Broeder]

Note that because this is a recent study, the control group is not a ME group either. Whatever conclusions are drawn from this study, they are relevant to other diseases, not ME.

The conclusions relevant to ME come from earlier studies, when ME patients still participated (although not as a majority even in the beginning).

 

[charityfundraiser]

Me too.
Also, I know how a lot of the piece only tells half of the story - what they are not saying is also very important (all the biological findings, abnormal responses to exercise, etc.).

It may be nice and comforting to think one can get back to health just by doing more. It's not so comforting when one discovers one can't back to normal doing it; and then one finds one gets blamed for it and that many health systems aren't making other methods to help ME/CFS patients with their health.

I was surprised I got through it without being annoyed. I used to somewhat. When I read through the manual, I was surprised that most of the CBT wasn't actually about the things usually being harped about. Some of it is about improving those feelings you mention, when you can't get back to the way you were before, and not being affected by blame.

As for the other half of the story about biological findings, yes that is true, but discussing it is not actually relevant for actually testing out GET. If 100 people test it and 30 improve, that's all you need to know. The reason doesn't matter. Only testing and tweaking it does. Besides, I think it's implicit. If there weren't abnormal responses to exercise, one wouldn't need to use GET.

 

[Guido den Broeder]

There are no biological findings. The participants were not physically examined.

 

[Dolphin]

Adults: Nijmegen internet-based intervention found no change on actometers

Guided self-instructions for people with chronic fatigue syndrome: randomised controlled trial. Br J Psychiatry. 2008 Oct;193(4):340-1. Knoop H, van der Meer JW, Bleijenberg G.

Free at: http://bjp.rcpsych.org/content/193/4/340.full

This looked like it was helpful based on questionnaire results.

However, actometer data from Wiborg et al (2010):

(CBT (as Wiborg et al call it) =guided self-instructions)
Baseline 63.1 (23.5)
Second assessment 67.3 (22.5)
Change score 4.3 (20.4)

Waiting-list Control group
Baseline: 63.5 (21.8)
Second assessment: 67.8 (21.4)
Change score: 4.3 (21.0)

Information about the intervention:

We assumed that for a subgroup of patients with chronic fatigue syndrome a less intensive treatment sufficed and developed a minimal intervention based on CBT that consisted of self-instructions and email contact.

The intervention consisted of a self-instruction booklet containing
information about chronic fatigue syndrome and weekly
assignments. The programme took at least 16 weeks, but often
more if patients formulated long-term goals such as returning
to work. Patients were asked to email (or telephone if they did
not have email) at least once every 2 weeks to report their
progress. A cognitivebehavioural therapist, trained in regular
CBT for chronic fatigue syndrome, responded to this email or call.
If patients did not respond every 2 weeks, a reminder was sent by
email or patients were telephoned.

It was already known that individual CBT is an effective treatment
for chronic fatigue syndrome.1 Our study showed that a less
intensive intervention based on the same principles

 

[Dolphin]

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.

Wow! No wonder Dutch patients (along with UK patients) seem the most engaged.
And of course the claims of recovery/cure from CBT is strongest from Bleijenberg and those he works with (i.e. Dutch clinicians/researchers).

 

[Dolphin]

I was surprised I got through it without being annoyed. I used to somewhat. When I read through the manual, I was surprised that most of the CBT wasn't actually about the things usually being harped about. Some of it is about improving those feelings you mention, when you can't get back to the way you were before, and not being affected by blame.

It's a good while since I've read it. But I know the aim is to persuade patients to see themselves as ex-patients by the end of it - I'm guessing the comment about blame was way before that when they were seeing themselves as a patient.

If you're not a patient any more, you and/or people round of you are very likely to then blame you for not doing things (e.g. not working and requiring disability payments), if you're not really better and don't do the things healthy people do. Indeed, I believe this is a particular problem in the Netherlands.

As for the other half of the story about biological findings, yes that is true, but discussing it is not actually relevant for actually testing out GET. If 100 people test it and 30 improve, that's all you need to know. The reason doesn't matter.

But you're assuming they did get 30 people a lot better or whatever. I'm used to reading the Dutch studies where they make grand claims on recovery based on dodgy definitions.

You don't sound like you did anything like this program in terms of how quickly you increased your activities so I'm not sure on what basis you think it is acceptable. I certainly wouldn't feel comfortable sending a relatively inactive/ill patient to such a program:

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, 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.

In other words, somebody who was relatively inactive (including people in wheelchairs) would go from 0 minutes walking to 6 x 10-minute walks per day in two weeks.

 

[charityfundraiser]

It's a good while since I've read it. But I know the aim is to persuade patients to see themselves as ex-patients by the end of it - I'm guessing the comment about blame was way before that when they were seeing themselves as a patient.

If you're not a patient any more, you and/or people round of you are very likely to then blame you for not doing things (e.g. not working and requiring disability payments), if you're not really better and don't do the things healthy people do. Indeed, I believe this is a particular problem in the Netherlands.

But you're assuming they did get 30 people a lot better or whatever. I'm used to reading the Dutch studies where they make grand claims on recovery based on dodgy definitions.

You don't sound like you did anything like this program in terms of how quickly you increased your activities so I'm not sure on what basis you think it is acceptable. I certainly wouldn't feel comfortable sending a relatively inactive/ill patient to such a program:



In other words, somebody who was relatively inactive (including people in wheelchairs) would go from 0 minutes walking to 6 x 10-minute walks per day in two weeks.

It's been less than 6 months since I started taking a tai chi class. When I started, I was still at least half-bedridden and wasn't even sure I could get to class 2 miles away. I couldn't stand through a 1 hour class once per week when I started nor talk to anyone during class. I am now doing 2 classes per week (2.5 hours + 1.5 hours driving), conversing with people in class, and practicing at home half an hour most days plus half an hour stretching. My other baseline activities have actually increased rather than decreased. I still take my mini-walk daily, have gone shopping at the mall several times for the first time in 6 years, have gone out to dinner with friends for the first time in 6 years, took 3 online courses after no academic-level mental activity for 6 years (by the way, I was barely able to watch the 10 minute chunk videos when I started), spend more time on the Internet, etc.

Anyway, there were some things in the manual that I ignored because I don't believe they are correct but they constituted much less than I thought before reading it. Their approach to the high-active patients seemed easier to digest than their approach to the low-passive patients. I'm not sure they addressed blame directly, maybe more like guilt and worrying of the high-active patients for not being able to do things, take care of their children, etc. but that can be applied elsewhere.

I don't care if the 30 patients got a lot or a little better and I don't care whether the researchers call it a recovery even if that's not my definition of recovery. If I get a little better, that's better than not. I'm interested in getting a little better. I don't care if a bunch of the researchers' ideas about our mental processes are wrong. I'm not going to get hung up on that instead of testing, tweaking, re-testing, re-tweaking, etc. to get my personal data. Seriously, this is the least harmful treatment you can try. If you try an extra minute of activity and it's too much, you can stop increasing it that second. If you try 10 sets of parameters and it doesn't work, fine. It's even stated in the manual that you're not supposed to follow it like a protocol. Every person's version will be different and you readjust it as necessary.

 

[Snow Leopard]

Seriously, this is the least harmful treatment you can try. If you try an extra minute of activity and it's too much, you can stop increasing it that second. If you try 10 sets of parameters and it doesn't work, fine.

Virtually every ME/CFS patient I have ever talked to has tried it and tried it repeatedly. The only myth is that we need some sort of professional to tell us to try it.

 

[charityfundraiser]

Virtually every ME/CFS patient I have ever talked to has tried it and tried it repeatedly. The only myth is that we need some sort of professional to tell us to try it.

If they make FITNET or something available to the public, I will try it and see if it does any better than my own made-up version. Before I do that, I cannot say. I've trial and errored constantly for 5.5 years and testing and tweaking is ingrained in everything I do due to my work and education background and personality. Even I took 5 years of testing and tweaking before I hit upon a combination that worked. After I read the manual, I realized that what I was doing was not what was recommended. They at least should have many more data points of what tends to work and what not. And given their own paper says that at 1 standard deviation of healthy controls, only ~30% reached that, then yes, it won't work for most people.

 

[Firestormm]

For me the equivalent of 'school attendance' would be 'holding down a job'. That would require a similar definition of 'work' and suitable objective measures of 'attendance' and 'performance'.

As an adult with ME I was able to attend college and university over 6 years. I achieved my year's college course but 'failed' to obtain my degree despite extending the duration of the course. Attendance was very 'patchy' at lectures but support was excellent.

I can't see how this could be carried over into a work environment and that's the real test of any 'treatment' for me after more than a decade with this (and other) diagnoses. Holding down a job (even one that one hopes is more 'manageable' given ones disability - been there tried that several times too) is the ultimate test I think.

I would dearly like for them to put their 'treatment' to this ultimate test but not an the cost of medical research. There's also the 'problem' of getting these interventions to all those who might benefit from them. I understand that the internet might be a means of delivering certain therapies to more people but it has many drawbacks (some mentioned in the commentary).

We also have no idea what the overall cost of this particular programme was per patient and how it stacks up against the 'standard package'. It seems to have been quite labour intensive for an internet protocol for example. And I am not the best person to be utilising complex internet packages. You see I have this problem with cognition and I would need everything explained and explained again and again.

 

[alex3619]

Virtually every ME/CFS patient I have ever talked to has tried it and tried it repeatedly. The only myth is that we need some sort of professional to tell us to try it.

Hi Snow Leopard, I would like to add, in my case, I tried exercise including Tai Chi many many times over something like 15 years. How many times did it help? Zero. Several times I did get short term gains which then turned into long term problems. Each step from my moving from a very mild ME patient to a borderline severe ME patient was associated with an attempt at exercise. In my view exercise turns many of us from mild patients to severe patients. Drugs that do this in even one percent of cases are yanked off the market. My best guess is that exercise does this to at least half of us. If this were a drug it would be illegal to make it, distribute it, or prescribe it. Somehow CBT/GET for ME is immune from the strict controls that apply to drugs. Bye, Alex

 

[Enid]

I've even tried Osteopathy to ease movement in the early days - there did seem to be some all-round improvement resulting in the worst bed bound crash. My Osteopath declined to treat anymore - not understanding the whole condition.