ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

[Barry53]

Can we please stop with the "just had depression" comparisons. LP won't magically work for depression either.

The problem is that self reports are easily biased and can show the type of improvement in this trial even if there is no underlying change in illness or behaviour. (especially if the whole point of the therapy is brainwashing you so you tell people you're much better)

I think another big misconception is what "depression" means. Real clinical depression, which a member of my family had when I was growing up, is not at all the same as someone who is simply "feeling very down", though that also can be devastating. Another area where two different conditions with superficially similarly symptoms get conflated.

 

[Barry53]

I think the point I was trying to make (obviously badly) was that depression cases may have been easier to achieve a positive long term outcome and be more responsive to one to one counselling or even group therapy. Of course self reporting bias has an effect?

Perhaps it's worth considering that there may be multiple variables at play rather than just one reason?

Yes, for sure.

 

[Snow Leopard]

Perhaps it's worth considering that there may be multiple variables at play rather than just one reason?

Does it matter?
We cannot assume that those with clinical depression will necessarily have a stronger self reporting response than other conditions.

Very few people are convinced by the "death by many small cuts" type of argument. Most people see it as arguing for the sake of arguing.

Why bother with lesser reasons when there are much bigger problems - it is a quack therapy and the trial results are untrustworthy as they are subjective self reports in an unblinded trial of an intervention that explicitly tells patients to answer that they are doing better, even when they are not.

 

[Barry53]

Does it matter?
We cannot assume that those with clinical depression will necessarily have a stronger self reporting response than other conditions.

It surely does matter if you have clinical depression, it's hell on earth for those people. My point is that if a person has clinical depression then all the behavioural reprogramming in the world is not going to fix their problem. If their depression is more to do with being unable to cope with the sh*t life is throwing at them, then better coping strategies my help.

 

[Jonathan Edwards]

Talking about how exercise can help reduce inflamation and how too much can increase it. I'm not qualified to say if that is true or not, but even if it is it's a sudden new angle she's using to try and validate her stuff in the light of latest biomedical thinking.

Exercise increases inflammation. However, one of the main features of inflammation is that the tissue swells with fluid. Exercise pumps that fluid out so the effects of exercise on inflammation are usually apparent following a later period of rest during which the fluid build up is NOT pumped out.

Everyone is familiar with this. You twist an ankle. It gets inflamed. If you keep walking on it it tends to loosen up a bit and you find you can get back to the car or to the loo. But if you sit around resting it the next time you try to walk the ankle will not even bear your weight - until you have loosened it up again with some careful getting going.

So in rheumatoid arthritis if the patient rests completely inflammation tends to settle. If they exercise they loosen up as they are doing the exercise but they are stiff on waking up in the morning. They are also often stiff after lunch having had a break from activity.

And since there is no inflammation of this sort in ME Dr Crawley is talking complete and utter nonsense right from the start. She is beginning to garble her ideas to the point of being ridiculous.

 

[A.B.]

There's even a review concluding that ME is associated with unusual immune responses to exertion.

It's not yet clear what Crawley is really doing in practice but maybe she is mostly seeing kids with disrupted sleep rythms and self-limiting postviral fatigue. The former will be cured with sleep hygiene which she has emphasized in the past, the latter will cure itself after a while.

 

[Jonathan Edwards]

Just picking up on the placebo response, I don't want to divert the discussion into placebos but the Prof from the SMC said "this could be due to placebo which would still be GOOD news."

Can someone point me to a transcript of that comment on SMC. I would like to know who this UCL professor is. I may be able to talk to them. The suggestion that a placebo response would be good news is ridiculous in the context.

 

[A.B.]

Can someone point me to a transcript of that comment on SMC. I would like to know who this UCL professor is. I may be able to talk to them. The suggestion that a placebo response would be good news is ridiculous in the context.

Prof. Alastair Sutcliffe, Professor of General Paediatrics, UCL

http://www.sciencemediacentre.org/expert-reaction-to-controversial-treatment-for-cfsme/

 

[user9876]

Prof. Alastair Sutcliffe, Professor of General Paediatrics, UCL

http://www.sciencemediacentre.org/expert-reaction-to-controversial-treatment-for-cfsme/

In his comment he says

“These press releases are accurate, however, there is no reference to the fact that the effect may be due to placebo as this is a single-blind trial.

But the paper says:

Design Pragmatic randomised controlled open trial. Participants were randomly assigned to SMC or SMC+LP. Randomisation was minimised by age and gender.

and

This was an open study: the randomised intervention was conveyed during the recruitment interview so that participants, parents, therapists and researchers were aware of treatment allocation. Data analyses were conducted using masked treatment codes.

 

[A.B.]

He also say this

Although in my view the effects described show some benefit and are therefore to be welcomed, this could be due to placebo which would still be GOOD news. Costs are modest and therefore this study is to be welcomed.

 

[user9876]

Can someone point me to a transcript of that comment on SMC. I would like to know who this UCL professor is. I may be able to talk to them. The suggestion that a placebo response would be good news is ridiculous in the context.

There is also another UCL person who comments

Dr James Thompson Honorary Senior Lecturer in Psychology UCL

“The treatment in this study looks like it had an effect, at least by the standard of most clinical trials. To be extra robust I would have liked to see more objective measures, but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective.

“One limitation is that self-report scales can be subject to placebo effects, however if the patients feel better in the experimental condition in which they receive extra help, even if everyone knows it, then that is something and the pupils miss less school, which is an objective measure. In this case it may not have been the CBT element of the treatment, but it looks like it.”

The school attendance was a self report. Personally I think that it is important for a child to use limited energy in ways that provide themselves with a positive experience rather than just school attendance which could for a sick child mean being their in body but not in mind (School performance is not measured).

 

[Jonathan Edwards]

Prof. Alastair Sutcliffe, Professor of General Paediatrics, UCL

http://www.sciencemediacentre.org/expert-reaction-to-controversial-treatment-for-cfsme/

Thanks.
Prof. Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

“A recent systematic review of neurolinguistic programming (NLP) stated “There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather than robust evidence of no effect. There is currently insufficient evidence to support the allocation of NHS resources to NLP activities outside of research purposes.” [Br J Gen Pract. 2012 Nov; 62(604): e757–e764. Published online 2012 Oct 29. doi: 10.3399/bjgp12X658287, PMCID: PMC3481516]. But now we have this interesting study by Crawley, a well-conducted single blind clinical trial that suggests NLP, in combination with other therapies and described as the ‘Lightning Process’, is effective for some children with the very hard to treat condition of chronic fatigue syndrome (CFS).

“Although in my view the effects described show some benefit and are therefore to be welcomed, this could be due to placebo which would still be GOOD news. Costs are modest and therefore this study is to be welcomed.

“These press releases are accurate, however, there is no reference to the fact that the effect may be due to placebo as this is a single-blind trial. But in a sense this is not so important as the trial shows convincing evidence of benefit and as placebo is impossible to quantify we are left with the alternative possibility that these children benefited from the package of care per se, rather than the nebulous placebo effect.

So here we have in plain sight the incompetence of my colleagues when it comes to analysing trials. It is sad that this seems to include paediatrics as well as psychiatry. His last paragraph is incoherent. I doubt there is much point talking to someone as unintelligent as this.

 

[Sean]

Design Pragmatic randomised controlled open trial.

The reviewers should be sacked for granting the study 'controlled' status. As with PACE (which was denied that status by its reviewers), a comparison group is not necessarily a control, or doesn't necessarily control for all relevant confounders (e.g. placebo).

 

[Jonathan Edwards]

Dr James Thompson Honorary Senior Lecturer in Psychology UCL

“The treatment in this study looks like it had an effect, at least by the standard of most clinical trials. To be extra robust I would have liked to see more objective measures, but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective.

“One limitation is that self-report scales can be subject to placebo effects, however if the patients feel better in the experimental condition in which they receive extra help, even if everyone knows it, then that is something and the pupils miss less school, which is an objective measure. In this case it may not have been the CBT element of the treatment, but it looks like it.”


This guy seems to be equally dumb, but then he is a psychologist and the inability of the UK psychology community to understand trials is clearly a general phenomenon.

I suppose these people think being asked to comment by SMC is a step up the ladder towards joining the inner club. Reminds me of the orange hair man again.

 

[trishrhymes]

So here we have in plain sight the incompetence of my colleagues when it comes to analysing trials. It is sad that this seems to include paediatrics as well as psychiatry. His last paragraph is incoherent. I doubt there is much point talking to someone as unintelligent as this.

This guy seems to be equally dumb, but then he is a psychologist and the inability of the UK psychology community to understand trials is clearly a general phenomenon.

Perhaps at least worth pointing them in the direction of the JHP special issue on PACE. In particular your own paper on unblinded trials with subjective outcomes, and asking them to look at SMILE in the same light - though I guess they may think self reported school attendance is objective. As others have pointed out, attendance is not the same as being well enough to learn or participate.

If you do contact them it might also be worth asking them to look in detail at what the children were subjected to in LP, particularly the secrecy and denial of symptoms aspects in relation to child protection issues.

 

[trishrhymes]

I have just looked up NLP on Wikipedia and read this:

''NLP embodies several techniques, including hypnotic techniques, which proponents claim can affect changes in the way people think, learn and communicate''

I thought I had recalled some reference to hypnotic techniques in the Lightning Process, and think this also has relevance to the ethical approval for the trial, informed patient consent and child protection issues.

My main concern in my objections to SMILE is:

Is it ethical in relation to child protection / child abuse - and where does the buck stop if it's not ethical.

Does anyone have any suggestions of how we could get this examined by the right experts and authorities?

 

[BurnA]

So here we have in plain sight the incompetence of my colleagues when it comes to analysing trials. It is sad that this seems to include paediatrics as well as psychiatry. His last paragraph is incoherent. I doubt there is much point talking to someone as unintelligent as this.

What about their superiors, would they be interested?
Would this be bringing UCL into disrepute to have professors talking nonsense about such basic principals and concepts such as blinding and placebo.

 

[user9876]

NHS choices have an article which is generally supportive of the LP and they have a history of supporting the BPS view. After the PACE long term follow up they insisted that it showed positive results for CBT/GET despite it being a Null result.

http://www.nhs.uk/news/2017/09Septe...th-chronic-fatigue-syndrome-study-claims.aspx

 

[Jonathan Edwards]

What about their superiors, would they be interested?
Would this be bringing UCL into disrepute to have professors talking nonsense about such basic principals and concepts such as blinding and placebo.

I think it does bring UCL into disrepute but I do not know who would care these days.

 

[Cinders66]

I know, her guile is amazing. Talking about how exercise can help reduce inflamation and how too much can increase it. I'm not qualified to say if that is true or not, but even if it is it's a sudden new angle she's using to try and validate her stuff in the light of latest biomedical thinking.

Her reply didn't even make sense. She started talking about mind affecting the body as to why LP worked, then leapt on to exercise, which doesn't follow as a mind over matter example, unless she was still trying to slip in a justification of the CBT/GET approach. Maybe she was saying LP gets you to stop avoidance behaviour == more exercise == reduced inflammation == ME cured.