Guided Self-Help for Patients with CFS Prior to Starting CBT: a Cohort Study

[Dolphin]

The median waiting time for CBT was 2.9 months (IQR = 2.3; minimum = 0.5; maximum = 22.5). Sessions were one hour long and participants were seen approximately every 2–4 weeks during the active stage of treatment. The number of sessions depended on the needs of the patient but the standard treatment package that was offered consisted of 12–16 active treatment sessions with four sessions of follow-up. The patients had a median of approximately 12 active treatment sessions (IQR = 5), with a maximum of 29 sessions.

When NICE did their budget on the costs of CBT for CFS, they'd budgeted for nine sessions:

The cost of individual CBT is based on nine 1-hour sessions delivered by a clinical psychologist (a midpoint of the 6 to 12 sessions that have been offered in randomised controlled trials). This equates to £678 per patient.

That means that NICE calculated the cost at £75.33 per hour.
That is less than half the cost that was being charged in 2012-13 at the service (admittedly this was five years later)

Maudsley Chronic Fatigue Service report the cost per hour of CBT/GET as being £176

http://journals.plos.org/plosone/ar...notation/e82776f7-c1d4-4bbe-94c6-f4d715980260

 

[trishrhymes]

What on earth are they doing with those poor patients in all those sessions? It surely can't take that long to explain to patients that it's their own fault they are ill and they need to pull themselves together and do some exercise.

You'd think they would want to get shot of them quicker before the patients get disillusioned and start blaming the therapists. There must be an optimum number of sessions to reach peak patient compliance and belief for the sake of filling in the questionnaires 'correctly'.

 

[Dolphin]

Implementation of self-help materials This information can be found in Table 1. Over half of the patients (58%) included in the analysis reported that they made some use of the self-help pack, either by reading the material, completing self-monitoring activities, changing their behaviour, setting targets, reviewing progress, or a combination of some or all of the above. Many of the patients found the self-help materials and or telephone call to be useful. One patient commented: ‘I found self-help treatment and the call from a therapist very valuable, and importantly, I feel that I have achieved a lot while on the waiting list. The “homework” and link with the [clinic] meant that I didn’t feel abandoned, and could usefully work on my treatment’. Some patients stated that they were not able to implement the self-help materials because they did not have enough time, or were prevented by personal circumstances. Others reported that they would prefer to wait until the treatment had started, or that they lacked motivation. Some stated that they felt like they required support from a therapist to implement the materials.

I wonder is this selective discussion of what was said about the self-help material:

 

[Dolphin]

It can be argued that specific advice about activity scheduling, sleep monitoring and goal setting contained in the written self-help materials may have helped patients to gradually increase their activity levels and this in turn may have positively impacted upon their perceived level of physical functioning.

Except we have no evidence that they actually did increased activity levels.

 

[Dolphin]

On the other hand, the early change in physical functioning suggests that this specific outcome may be more amenable to change with a minimal intervention such as self-help. Although the changes in physical functioning were small and not likely to be clinically significant, the results suggest that patients were able to benefit from some input while waiting to start CBT treatment.

 

[Dolphin]

Minimal interventions may be beneficial for those with fatigue or CFS who are unable to access specialist treatment in secondary or tertiary care. For example, patients may find it difficult to attend appointments at an out-patient clinic because of the disabling nature of their fatigue. They may also be unable to access treatment due to a shortage of specialist services in their area. Patients in primary care could be prescribed a self-help book and given guidance from their GP. This could prevent a downward spiral into worsening disability that can happen to people with fatigue over time, and may reduce referrals to secondary care.

I find this a bit annoying considering how rubbish the results were.

 

[Dolphin]

This study has some limitations that should be noted. Firstly, as this was a clinical evaluation carried out within routine clinical practice, it lacked some of the control of confounding variables that would be possible in a randomized controlled trial. For example, there was no control group, and participants were not randomized. Without randomization and a control group, it is not possible to say definitively that the self-help guidance led to the change in physical functioning. Another limitation is that despite imputation, there were still a number of non-responders at the end of CBT. Therefore the findings of this study should be interpreted with caution.

 

[Dolphin]

No mention in the concluding paragraph that the change achieved was minimal.

In summary, minimal interventions such as self-help may assist patients in managing their physical functioning and help them to manage their symptoms while they are waiting for treatment within secondary care. However, as noted in the literature, self-help interventions may not be suitable for all patients, and those with more severe symptoms are likely to require more intensive treatment.

 

[Dolphin]

Conflicts of interest: Two of the authors (M.B. and T.C.) have published self-help books relating to chronic fatigue and chronic fatigue syndrome. T.C. has received travel expenses and fees for providing workshops on the topic of chronic fatigue syndrome.

That the authors have published self-help books including the one bite Chalder assessed seems important as a potential conflict of interest.

I think it would be useful if authors also declared that their job entailed giving CBT to patients which I think is another potentially important conflict of interest.

 

[MEMum]

Thanks Dolphin for all you work going thro this and highlighting some of the failings.

 

[Sad Dad]

Patients were asked to schedule time for breaks and rests as well as physical activities such as walking. They were also encouraged to adjust their activity levels and make them more consistent, with the aim of avoiding a ‘boom and bust’ pattern of activity. Finally, participants were asked to review their own progress with the activity programme and to make changes as necessary.

In all fairness, if a patient hasn't figured out that they can't try to do "normal" things when they are having a "good" day, this doesn't sound like bad advice on the whole. With most illnesses, when you start feeling better, you can begin going back to doing the things you used to do. Obviously CFS is not like that.

It took my daughter a couple of months to realize she was going to have to give up doing things she had always done, and she had two parents who could do a lot of research on CFS and explain post-exertional malaise to her every step of the way. If she didn't have our support, this kind of CBT might have been helpful.

I'm curious how long it took others to find out they had CFS and/or adapt to a lifestyle that was within their energy envelope and what external help they had along the way.

 

[Dolphin]

Patients were asked to schedule time for breaks and rests as well as physical activities such as walking. They were also encouraged to adjust their activity levels and make them more consistent, with the aim of avoiding a ‘boom and bust’ pattern of activity. Finally, participants were asked to review their own progress with the activity programme and to make changes as necessary.

In all fairness, if a patient hasn't figured out that they can't try to do "normal" things when they are having a "good" day, this doesn't sound like bad advice on the whole. With most illnesses, when you start feeling better, you can begin going back to doing the things you used to do. Obviously CFS is not like that.

It took my daughter a couple of months to realize she was going to have to give up doing things she had always done, and she had two parents who could do a lot of research on CFS and explain post-exertional malaise to her every step of the way. If she didn't have our support, this kind of CBT might have been helpful.

I'm curious how long it took others to find out they had CFS and/or adapt to a lifestyle that was within their energy envelope and what external help they had along the way.

However that is not the whole program. That is more about the stabilisation period. Then you are expected to gradually increase activity and there is supposed to be no reason why you cannot get back to full functioning, only maladaptive beliefs and behaviours.

 

[Sad Dad]

I agree the whole PACE concept is bunk.

 

[Invisible Woman]

I wonder if some patients may have been concerned that if they were not seen to improve in some way they might not have been given further treatment.

This could easily bias response.

 

[Sean]

I wish they would say improvements in *self-reported* physical functioning. They say this numerous times both in regard to this study and other evidence.

Standard operating procedure for them. It is deliberately misleading to persistently leave out such a critical qualification.

---------------------------------

On the other hand, the early change in physical functioning suggests that this specific outcome may be more amenable to change with a minimal intervention such as self-help. Although the changes in physical functioning were small and not likely to be clinically significant, the results suggest that patients were able to benefit from some input while waiting to start CBT treatment.

In more honest language, the 'effect' is non-existent for all practical purposes.

Not to mention that it was self-reported changes in physical function.

 

[MEMum]

It took my daughter a couple of months to realize she was going to have to give up doing things she had always done, and she had two parents who could do a lot of research on CFS and explain post-exertional malaise to her every step of the way. If she didn't have our support, this kind of CBT might have been helpful.

I'm curious how long it took others to find out they had CFS and/or adapt to a lifestyle that was within their energy envelope and what external help they had along the way.[/QUOTE]


Hi @Sad Dad. It is dreadful seeing our daughters with such limited energy, isn't it. I think the adaptation has been gradual and never without hope that a treatment/cure will be found.
My daughter has not had a "boom and bust" cycle. I'm not really sure that people with ME do, though there are several who have been harmed by enforced GET and/or pushing themselves re work/other responsibilities.

Generally we used to plan to do things (outings or people visiting us) on alternate days, so she could recover in between.

Her cognition has generally not been up to studying for A-levels. She was shown to have a high ASO titre (measure of strep infection) and did improve for a few months at a time about 4 times with different antibiotics (Abs). During these times her cognition improved dramatically and she has now got 1.5 A-levels. Her Maths tutor commented that "it was like teaching a different child": ie the difference between improved on Abs and not.

Unfortunately she could not tolerate these Abs long-term and no medics can really understand why her ASO is still high.

 

[2kidswithME]

I'm curious how long it took others to find out they had CFS and/or adapt to a lifestyle that was within their energy envelope and what external help they had along the way.

Hi @Sad Dad when my son fell ill we were referred back to the paediatrician who had seen him during his previous stage of chronic and severe headaches (with intermittent spells of feeling very poorly) within four months. She diagnosed him and said he needed to 'exercise', that would help him get better. So we dutifully insisted on a short walk about 4x weekly for about two months, but he didn't improve at all. Thankfully he didn't get worse as my mother instinct had the sense not to push him to make increases.

That was then I started researching (about nine months into his illness) and realised how controversial exercise was, so we quietly dropped the walks. Fortunately the paediatrician didn't follow up on that point so we weren't chided for noncompliance.

From my research I learned about pacing so we implemented those principles and eventually he did stabilise. By then he'd had to give up on school all together and virtually all other activities for about 3 years before he gradually picked things up as he improved. But we were on our own with no support, except for a parent's forum which was invaluable (the one good thing about AYME was the forum).