Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome, 2018, Burgess et al (inc Chalder)

[Dolphin]

The therapist was in contact by phone, email, letter and in person with other professionals involved in the young person’s care, for example, physiotherapists, tutors, GPs, paediatricians, school nurses and teachers. This ensured that the young person’s needs were being met and that they were receiving consistent advice.

This would be consistently bad advice in my view. It's a nightmare in my view that all these professionals would be given bad information.

One could easily see that this would increase the pressure on the patient to comply. It could also increase the risk of child protection procedures if the child wasn't complying in some way or even was complying but was deteriorating, or not improving.

 

[Dolphin]

Physical functioning.

This was measured using the SF-36 physical functioning subscale (McHorney, Ware, & Raczek, 1993; Ware & Sherbourne, 1992). Participants are given a number of items and asked to rate the extent to which their health limits them carrying out certain activities such as climbing up a few flights of stairs, bending down or lifting things. Each item has three possible response options: ‘Yes, limited a lot’, ‘yes, limited a little’ and ‘No not limited at all’. A six-item version of this scale was used. The six items were summed to get a total score out of 60, which was then converted into a percentage. A higher score indicates better functioning.

I have never heard of a six-item version. Anyway, it means that it is hard to compare the results with other studies or indeed population norms.

 

[Dolphin]

The number of treatment sessions given during the treatment phase varied between 23 and 51 with a mean of 33 sessions.

That's a huge number of sessions. The sessions were 1-2 hours long. And they were done in people's homes. This would add up to quite an expensive therapy.

Also there was the contact with the other professionals in the lives of these young people, which adds to the costs.

The length of time over which treatment took place was between 16 and 35 months with a mean of 24 months.

Over a mean of 24 months, some of the patients could have improved anyway.

There could also be regression to the mean, where if you pick people at their worst, they will often tend to go towards the mean over time, i.e. they could improve (while the distribution might not change overall with other people who were not followed deteriorating)

 

[Dolphin]

New
The number of treatment sessions given during the treatment phase varied between 23 and 51 with a mean of 33 sessions.

A young person once told me they lied that they were better to get away from a therapist. Jane Colby said she had heard of similar things in the UK. Given all the sessions these people were having in their homes, it is conceivable that people might lie or exaggerate how well they were doing so that they could stop the sessions.

 

[Dolphin]

The individual scores. Note these are for questionnaires rather than objective measures. The fatigue scale is 0-33. The two scores of 29 that were reported at one year follow up are not very good.

 

[Dolphin]

For what it is worth.

It would have been interesting to have such information for all six individuals.

It would have been interesting for the second individual to know whether they are actually working full-time or what is their situation.

Long-term follow-up

Two of the six patients completed questionnaires approximately 6–8 years after treatment had ended. The first reported that they had completed an A-level equivalent course and were now doing a university degree. The second reported that they were living independently from their family, had completed an undergraduate degree and had made friends, leading to less social isolation. However, the latter patient had had half-hour, monthly telephone support from one of the authors (a cognitive- behaviour therapist) over the past year.

 

[Sean]

The number of treatment sessions given during the treatment phase varied between 23 and 51 with a mean of 33 sessions.

At 1-2 hours long, 33 sessions is a hell of a burden all on its own, before we look at anything else.

 

[Dolphin]

No adverse effects of treatment were reported. Increases in fatigue were not attributed to the approach.

So any credit for improvements goes to the therapy but any increase in fatigue is due to something else.

 

[Dolphin]

It is important to note that change was not linear. Individual change over time was varied, with some individuals’ fatigue levels increasing. Improvements in physical functioning and social adjustment did not necessarily match changes in fatigue. This supports previous research where adolescents who report themselves as recovered still continue to experience fatigue symptoms (Sankey, Hill, Brown, Quinn, & Fletcher, 2006). One study found that in comparison to healthy controls, adolescents with CFS had unrealistic expectations of normative levels of fatigue (Garralda & Rangel, 2001). Therefore it is possible that participants were experiencing normal levels of fatigue compared to the general population, but that their expectations of fatigue were still lower than this. The aim of the current treatment was to help adolescents to deal with normal levels of fatigue that is experienced on an everyday basis. The findings suggests that in some participants, the ability to manage and tolerate fatigue improved.

Anything is possible. I think it's much more likely the patients were not fully recovered and that this is unfounded speculation.

Here's a long-term study of people who became ill when they were young people.

Understanding Long-Term Outcomes of Chronic Fatigue Syndrome

Molly M. Brown,1∗ David S. Bell,2 Leonard A. Jason,1 Constance Christos,1 and David E. Bell2

1DePaul University 2State University of New York at Buffalo

Objective:

This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

Method: Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

Results: Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls. On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.

Conclusions: Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.

J. Clin. Psychol. 00:1–8, 2012.

Keywords: chronic fatigue syndrome;myalgic encephalomyelitis; prognosis; follow-up studies; recovery

 

[Tom Kindlon]

 

[Amw66]

A young person once told me they lied that they were better to get away from a therapist. Jane Colby said she had heard of similar things in the UK. Given all the sessions these people were having in their homes, it is conceivable that people might lie or exaggerate how well they were doing so that they could stop the sessions.

Teenagers in particular are very adept at this. Tell a person what they want to hear to make them go away.

 

[Luther Blissett]

A young person once told me they lied that they were better to get away from a therapist. Jane Colby said she had heard of similar things in the UK. Given all the sessions these people were having in their homes, it is conceivable that people might lie or exaggerate how well they were doing so that they could stop the sessions.

Isn't this a quite normal response to people causing you psychological/physical harm? It's the basis for false confessions for instance, where people admit to crimes even when it is later proved by irrefutable evidence they didn't commit them.

 

[Hutan]

A young person once told me they lied that they were better to get away from a therapist.

There's this. And there's also the fact that if people are making clear it that you are sick because of some flaw in your personality, some weakness, and that if you tried harder you could be well, well, it's very easy to fool even yourself into thinking that you are much less sick than you actually are. I suspect many young men, who want to believe that they are bullet-proof, may be particularly susceptible to that.

For example, my son was being seen by a circulatory systems specialist for orthostatic intolerance. The specialist asked my son if he had any trouble when showering. He said 'no'. I had to say 'but you don't shower, you always take a bath now'. So the specialist asked about after a bath. And my son said it was fine. And so I had to say 'well, you lie down on the bathroom floor for about ten minutes afterwards'. We realised he was doing that when he wasn't emerging from the bathroom until ages after the bath water was emptied; he would just wrap himself in a towel and lie down. When the specialist asked why he did that, he said 'it's an easy way to get dry'. So frustrating! I'm coming across as the mother who wants to be special by having a sick son, when actually the son just likes lying down a lot. And we'd waited 6 months to see this guy and it was costing $600. And my son did actually know that there was a problem with orthostatic intolerance; he hadn't been dragged to see the specialist.

Fortunately, the specialist had heard things like that before and the holter monitor established that there was a real problem. But, the stigma around ME makes it quite possible that people, and particularly children, will under-report symptoms when asked.

 

[Dolphin]

It is important to note that change was not linear. Individual change over time was varied, with some individuals’ fatigue levels increasing. Improvements in physical functioning and social adjustment did not necessarily match changes in fatigue. This supports previous research where adolescents who report themselves as recovered still continue to experience fatigue symptoms (Sankey, Hill, Brown, Quinn, & Fletcher, 2006). One study found that in comparison to healthy controls, adolescents with CFS had unrealistic expectations of normative levels of fatigue (Garralda & Rangel, 2001). Therefore it is possible that participants were experiencing normal levels of fatigue compared to the general population, but that their expectations of fatigue were still lower than this. The aim of the current treatment was to help adolescents to deal with normal levels of fatigue that is experienced on an everyday basis. The findings suggests that in some participants, the ability to manage and tolerate fatigue improved.

Anything is possible. I think it's much more likely the patients were not fully recovered and that this is unfounded speculation.

Here's a long-term study of people who became ill when they were young people.

Note that I don't recall anything in the current study about the participants saying they were recovered. Improved is not recovered. This makes it extra dubious that they would believe the patients truly had normal levels of fatigue.