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

[Barry]

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.

It's as if they half-plan stuff they like to think is going to be a medical trial, shamble their way through it, then cobble afterthoughts together at the end so it sounds like it was one. I always get fed up with naff documentaries that employ false inferences along the lines of "well we now know it is possible that such-and-such could have been the reason people did ...", and then in the next breath say "now that we know such-and-such is the reason people did ... we can confidently say this is why something else must be true". It never used to occur to me in my worst nightmares that some medical (supposed) scientists were no better.

 

[Barry]

In fact (sorry, I'm in rant mode) it feels like medical trials need better regulation. I know that would be a big pain for the many scientists who are thoroughly professional and honourable, but something needs doing to stop the ones that are far from that. If a trial is well run (not saying perfect because nothing ever is) then no worries. But if blatant errors in methodology occur, then there should be some kind of remedy and/or sanction, because people's lives are at stake, literally. And if that puts off the deadbeats and charlatans from taking up science, good. It should also extend to any other complicit organisations, such as journals, especially those that blatantly flout their own ethical guidelines.

 

[NelliePledge]

some medical (supposed) scientists were no better

they're not medics or scientists are they?

 

[Skycloud]

It's as if they half-plan stuff they like to think is going to be a medical trial, shamble their way through it, then cobble afterthoughts together at the end so it sounds like it was one.

for the rant.

 

[Amw66]

One for Carol Monaghan's Science and Technology committee.

Who funds these kind of studies? Again peer review and journal assessment seems wanting.

These are the kinds of studies that charities really need to comment on. It is not acceptable for such poor methodology to continue to flourish, particularly where children/ adolescents are involved: this kind if thing sets context and informs " treatment".

It would be laughable if it were not so potentially dangerous.

I expect there to be a flurry of papers in the next 2 years: if the worst of these are not exposed for what they are by people other than patients then the review by NICE will not encompass the change that is required

@Russell Fleming ,@Action for M.E. ,@JenB

 

[Inara]

In fact (sorry, I'm in rant mode) it feels like medical trials need better regulation. I know that would be a big pain for the many scientists who are thoroughly professional and honourable, but something needs doing to stop the ones that are far from that. If a trial is well run (not saying perfect because nothing ever is) then no worries. But if blatant errors in methodology occur, then there should be some kind of remedy and/or sanction, because people's lives are at stake, literally. And if that puts off the deadbeats and charlatans from taking up science, good. It should also extend to any other complicit organisations, such as journals, especially those that blatantly flout their own ethical guidelines.

What about starting with not calling psychology/psychiatry a science? (I know there are areas in psychology that work scientifically in a way, but the majority seems to be tripe.) There once were times where this was obvious, but psychology/psychiatry worked hard to establish the picture they're scientific (and they succeeded).

I know: Dream on.

 

[Barry]

What about starting with not calling psychology/psychiatry a science? (I know there are areas in psychology that work scientifically in a way, but the majority seems to be tripe.) There once were times where this was obvious, but psychology/psychiatry worked hard to establish the picture they're scientific (and they succeeded).

I know: Dream on.

Yes, I've pondered that too. As well as the other way round: Start being properly scientific about it, which includes acknowledging the bits that are woolly and applying scientific methods to account for that ... even if it comes down to accepting that some things just don't stand up to real scrutiny so not pretending they do. That would be a good start. And it would do proper justice to the many good psychiatry professionals who are out there, because the way things are it betrays them too.

 

[rvallee]

adolescents who report themselves as recovered still continue to experience fatigue symptoms

They're using their own previous flawed logic to justify further flawed reasoning. Patients relenting to downplay their symptoms on a self-rated questionnaire does not add up to being recovered when it follows "treatment" that primarily consists of convincing the patients to downplay their symptoms. They're using their past mistakes to make new mistakes, it's an ouroboros of speculative bullshit.

Therefore it is possible that participants were experiencing

Also baseless speculation. By this metric everything is possible and can be wildly inflated to be meaningful "just because" it could be possible. It's also possible that dark matter is a factor in illness by the simple fact that we can't rule it out with certainty and until we have mind-reading machine they can speculate ad infinitum about "unhelpful belief" as long as they keep getting funded with this crap.

 

[Hutan]

These are the kinds of studies that charities really need to comment on. It is not acceptable for such poor methodology to continue to flourish, particularly where children/ adolescents are involved: this kind if thing sets context and informs " treatment".

I agree.

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.

So, in some (perhaps most?) of the participants, fatigue increased as they did more and went back to school?

I am confident that it would be just as easy to use this 'data' as proof that encouraging young people to hurry back to school can do more harm than good. (Although, with no controls and a pitiful sample size, it would be an opinion dressed up as science, just like this paper.)

 

[Luther Blissett]

Therefore it is possible that participants were experiencing

Also baseless speculation. By this metric everything is possible and can be wildly inflated to be meaningful "just because" it could be possible. It's also possible that dark matter is a factor in illness by the simple fact that we can't rule it out with certainty and until we have mind-reading machine they can speculate ad infinitum about "unhelpful belief" as long as they keep getting funded with this crap.

"Therefore it is possible that the authors of this study enjoy kicking cute puppies in the face while shouting racial epithets as by-passers." I wonder what they would think of that statement.

One day, you will all use and appreciate my only contribution to medicine,

A usage of a mathematical tool that I'm sarcastically calling 'Bayes' Alchemy' occurs in the quote from Woolie, in which a number of 'cans' (or 'probablies', or 'coulds') is strung together, with the result that the less likely something is, the greater the probably at the end of the equation. This seems to happen a lot with psychologists for some reason.

Article, "Dear worried well, the internet is not your friend"

 

[Barry]

Foolean logic? Maybe it is AND Possibly it is AND Might be AND Hope it is AND I'm psychiatrist AND I'm sure I'm a scientist = 100% certain

 

[Tom Kindlon]

 

[Dolphin]

Chronic Fatigue Syndrome (CFS) is characterised by chronic disabling fatigue in the absence of an alternative diagnosis (Prins, Van der Meer, & Bleijenberg, 2006).

All participants met the Oxford diagnostic criteria for CFS (Sharpe et al., 1991).

 

[Dolphin]

The main aim of treatment was to help the patients to increase their level of functioning and reduce their fatigue with the aim of recovery and a return to school/college when possible. To achieve this goal, therapy time was divided between the patient alone, parent(s) alone and the family altogether.

From what I have read in other articles, families are told not to support the patient in what are described as maladaptive beliefs and behaviours. It's easy to see that this could be a disaster for a vulnerable person, particularly a young person.

 

[Dolphin]

There is no CONSORT diagram. I have to wonder whether there may have been other patients who had therapy at home but who are not included in the study. Perhaps they might justify this by claiming the treatment wasn't completed but that's not how proper trials are reported.

 

[Dolphin]

Parents were seen individually as well as with their daughter/son so that they could discuss any of their concerns about treatment. This set a positive tone for treatment. Collaboration between therapist, patient and family was key to ensure good communication and an understanding of any concerns that needed to be addressed such as worries about a return to school. In some cases the therapist was met with some resistance, but at the start, the therapist made clear to the family that the treatment was likely to be challenging, particularly if a previous treatment had been unsuccessful and they were fearful or sceptical about the treatment approach.

Sounds like they were setting it up so that if it didn't appear to work or there were problems, it was the patients' and/or parents' fault for not committing to it or not do it properly.

Where any problems or difficulties were apparent during sessions, they were discussed with the family to facilitate a solution. A shared formulation was developed and clear goals were agreed upon so that a treatment plan could be followed.

Goals can be risky in ME/CFS

Flexibility in the treatment approach was crucial. A priority throughout sessions was to instil a feeling of hope even at difficult times.

It would not be good if medicine was unnuanced and all clinicians did all the time was insist people should only be hopeful rather than be realistic.

 

[Dolphin]

Sessions ranged in length between 1 and 2 hours.

Long for severely affected people.

Sessions were conducted in a flexible manner to ensure that the needs of the patient and parents were met. The initial session was focused on developing a shared understanding of factors that may have contributed to the onset of the problem and factors that may be perpetuating or maintaining it.

Somebody like Mary Burgess or Trudie Chalder is not going to change their views so I find this language of "shared understanding" frustrating: it's about convincing the family using whatever means possible that the therapist CBT model is the one to use.

A treatment manual was given to the young person (Lloyd, Chalder, Sallis, & Rimes, 2012; Rimes & Chalder, 2015) and they were asked to complete sleep and activity diaries with help from parents. At the second session, information about patterns of activity, rest and sleep, gained from their diaries, was used to form a programme of consistent activity and rest

Consistent levels of activity are risky in this condition

A range of sleep strategies was discussed that included a regular getting up time (or sitting up in bed) and stimulus control exercises to associate bed with sleep rather than being awake. They were encouraged to reduce or eliminate naps in the day.

Reducing or eliminating naps can be risky.

Adolescents identified specific goals to work towards during treatment.

More talk of goals, which can be risky.

 

[Amw66]

Dangerous. There seems little understanding as to the nature of the condition. I would concur with @Dolphin ' s analysis.

It is little wonder that many children go backwards, and full data never seems to be available from research studies. Notable always is the long term data - either missing/ dropped out. Never follow up to ask basic questions - just perpetuate the same issues.

My daughter has always been goal driven. Unfortunately, this simply sets her up to fail repeatedly with this illness. It has taken a long time to get our heads around the cruel nature of things and adapt. Sadly this is the part that others also fail to appreciate.
Things are not linear.

 

[2kidswithME]

There seems to be an obsession with not allowing naps that comes up over and over again. By all counts naps are good for health, and the half of the world that takes siestas cannot be all wrong! (Says she who grew up in one of those countries.)

Thanks for your thoughtful analysis @Dolphin , as ever.

 

[Dolphin]

Discussion with parent(s) involved an overview of how things had been between sessions. Any difficulties that had arisen were problem-solved, and advice to parent(s) was given, as appropriate, about how to manage an increase in their child’s symptoms.

Their form of CBT is about breaking the link between how much you do and your symptoms. So in this case, their advice would likely be to keep going with increased symptoms.

As they said previously, it's "a programme of consistent activity and rest."

It's bad enough that a patient gets told this, without their parents also being convinced of it.