United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

Just that subheading makes me cross:

We're not quibbling, we're asking for treatments based on valid research evidence, not some arrogant doctor making it up as they go along and patronising us with 'doctor knows best'.

If there was evidence that GET and CBT worked I’d be first in line to get it. I have separate mental health issues, there’s no stigma for me. I’ve done CBT and other therapies for that.

The idea that we are just turning down help because it doesn’t fit our worldview is so insulting. People have been willing to spend tens of thousands, take potentially deadly drugs, have spinal surgery and many other extreme measures. They shouldn’t do those either because the evidence also isn’t there but it shows the lengths people will go to.

The issue is that their own evidence shows GET doesn’t work.
 
Yes GET CBT absolutely doesn’t result in return to previous circumstances. Indeed the fact that return to work didn’t happen for participants on the PACE trial was used for my ill health retirement application in the report by my ME doctor to demonstrate that it was highly unlikely I would ever be able to go back.
 
He says: '"Graded exercise therapy" - one of Nice's sticking points - as described by some patients may sound awful, but it's not something I recognise.'

which sounds as though he's not receptive to the fact that some patients [in clinical settings other than his own] have suffered as a result of GET.
In a tweet he explicitly stated he hasn't seen any himself. Which may be true, that he didn't see them, in the sense that he didn't recognize it. I believe him on that. Very likely those who did simply did not go back. As we know these clinics are basically the polar opposite of rigorous and cannot assess anything.

Which makes the main point: that clinical judgment is too unreliable here. Even those who do set their eyes on it do not recognize what's happening, which is normal, as disappointing as it may be humans don't have magical abilities to evaluate reality without technology or instruments.

Although his comment that he expected NICE to review the evidence on tests was frankly bizarre, it was never part of their remit, it would be basic science anyway and there obviously hasn't been any because of lack of funds and resources.

The intersection of well-meaning but misguided is very accident-prone, a true ethical blind spot.
 
Returning to the Dr Phil Hammond article in the Sunday Times that those of us who have seen it agree is a load of patronising waffle, and a worrying degree of confidence that he knows what he's doing with his individualised rehab.

Someone has just shown me a copy of the online version of the article that has a section in it that's not in the print edition I have been shown.

Dr Phil says:

I have met people with ME/CFS who are desperate for answers and experiment with low-dose naltrexone, anti-virals, acupuncture, mitochondrial supplements, nutritional supplements, yoga, meditation, mindfulness, solution-focused hypnotherapy, the Lightning Process, the Perrin technique, an anti-inflammatory diet, cold showers and more. We need to know if any of these work, and in what circumstances

Given that Dr Phil works at Crawley's Bath children's CFS clinic, I find this particularly chilling. Not satisfied with their useless and unethical 'research' on LP, he now says they should be researching all sorts of other quackery. I am horrified.
 
Given that Dr Phil works at Crawley's Bath children's CFS clinic, I find this particularly chilling. Not satisfied with their useless and unethical 'research' on LP, he now says they should be researching all sorts of other quackery. I am horrified.

He has just been talking about this on twitter - he was mentioning LP & Perrin in a tweet. His twitter feed is infuriating today. It is a disgrace. I am afraid I do not think he is operating in good faith at all.
 
Returning to the Dr Phil Hammond article in the Sunday Times that those of us who have seen it agree is a load of patronising waffle, and a worrying degree of confidence that he knows what he's doing with his individualised rehab.

Someone has just shown me a copy of the online version of the article that has a section in it that's not in the print edition I have been shown.

Dr Phil says:



Given that Dr Phil works at Crawley's Bath children's CFS clinic, I find this particularly chilling. Not satisfied with their useless and unethical 'research' on LP, he now says they should be researching all sorts of other quackery. I am horrified.
Says everything about this being a solution in search of a problem. What ever gave this guy the notion that he knows what he's talking about? Beneath the words he seems as misguided as Wessely, frankly. When you peel back the hollow message, the substance is just as terrible.



He clearly doesn't understand that exercise is then at the expense of everyday things, that increased activity is the default behavior for almost everyone as soon as they can. Hardly anyone needs a coach to get moving after they are ill, the whole premise is absurd. This is Being There medicine, exactly as useful as a sock potato is at... how do they say it... leeching off toxins? Or whatever.


Edit: added another tweet, he clearly has no clue about ME/CFS, wow, even worse than I thought.
 
Last edited:
Returning to the Dr Phil Hammond article in the Sunday Times that those of us who have seen it agree is a load of patronising waffle, and a worrying degree of confidence that he knows what he's doing with his individualised rehab.

Someone has just shown me a copy of the online version of the article that has a section in it that's not in the print edition I have been shown.

Dr Phil says:



Given that Dr Phil works at Crawley's Bath children's CFS clinic, I find this particularly chilling. Not satisfied with their useless and unethical 'research' on LP, he now says they should be researching all sorts of other quackery. I am horrified.

Probably not on point for anything, just idle musing.

Here's the scenario I picture when I read PH et al respond to challenges to their world view.

They would like for things to remain the same or even better go back to how things were (when they felt unchallenged). Going into the office every day with a smile on their face knowing that they are respected. They can be assured of a future of prestige, power influence and financial security. Life is good.

Children will draw pictures of them as super-heroes that they can pin up in their office. Families will send Christmas cards. Hugs of gratitude will be the norm.

Challenging all of this is like cornering them in a dark alley and you might have a weapon. Why would you do this? Anxiety rises to the surface. CBT/GET are at real risk. This anxiety is uncomfortable and it needs to go away. In order to maintain control and keep the good times flowing the mind races to every conceivable possibility that can be utilised as a treatment while keeping the delivery of that tx in their own hands.

Allowing the idea that medicine might have something to offer should bio research be done is unthinkable. The idea that what they are currently doing for ill people is not science is unthinkable.

Anything goes when it's personalised. It's a great idea as it sounds so caring. And it's difficult to challenge as it's difficult to measure for scientific scrutiny. Some anxiety subsides. Yet their is no awareness of any emotional connection to what is happening only rationalisation that all is scientific enough to be clinically useful.

Yet as it has been pointed out the idea of personalised medicine as they call it is just a cover for keeping things as they have always been and is to keep patient care in the 19th century.

Just my own musing on how a status quo being challenged can play out.
 
This is the point surely, though Hammond seems to miss it entirely. If you cannot distinguish between those who will be harmed by your interventions and those who will not, how can you possibly deem it ethical to use a scatter gun approach to all?

He seems to not care and is making comments that he wants a NICE "mandated" test to distinguish between such patients.
He cannot possibly be this uninformed and it seems like a political agenda to me.
 
This seems to be the latest report on the Bath approach to paediatric 'CFS/ME' (2017):

https://www.paediatricsandchildhealthjournal.co.uk/article/S1751-7222(17)30123-3/fulltext

Author manuscript available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/ thanks to @Dx Revision Watch for the link (I used Sci-hub)

Treatment Specialist treatment for paediatric CFS/ME aims for recovery so that children can do everything that they want to do, including full time education. NICE recommends three treatment approaches for paediatric CFS/ME: Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and activity management where CBT or GET are not available. Of these, the best evidence is for CBT. All of these approaches should all also include advice on sleep management, and may also be complemented with pain and mood management when needed.

Graded exercise therapy (GET) GET specifically targets physical activity, stabilising this and then gradually increasing it in a systematic way. GET is moderately effective in adults with CFS/ME, but as yet, there have been no trials in children. The first stage in GET is a physical assessment (sit to stand, step test, and 1 minute balance test), and an assessment of the range and type of exercise undertaken during the week. Exercise targets are then negotiated with the child. Initial exercise targets (the baseline) should be the median amount of daily exercise done during the week, and may include, for example, slow paced walking. Once this is achieved every day for 1e2 weeks, children are advised to increase exercise slowly by 10e20% a week. They are asked to time their exercise to make sure they are completing the same number of minutes of exercise every day and to keep a diary of this. Once children are doing 30 minutes of gentle exercise each day, the exercise will increase in intensity such that they start doing aerobic exercise. Children should be taught how to manually monitor their heart rate to prevent them doing too much exercise.

Activity management Activity management is a component of CBT, but does not, as a standalone approach, have an evidence base. Anecdotally, it appears to work well, particularly as an early intervention and in straightforward cases where a child is able to engage in making behavioural changes and does not have significant psychiatric comorbidity. It tackles the same patterns of activity as GET, but focusses on a broader range of activity (rather than only physical exercise). Activity management may well be working in the same way to GET. Activity management is aimed at overcoming the unhelpful patterns of activity that arise as a response to being chronically fatigued; that is, a relatively active boom and bust pattern of doing lots of activity, followed by doing very little, or a low active pattern of a significant reduction in overall activity levels. After a period (typically 1e2 weeks) of recording activity levels, distinguishing high energy activities (those activities that are physically, cognitively or emotionally demanding for the individual) from low energy activities (those activities that are not demanding and do not exacerbate fatigue), a ‘baseline’ can be established. This is the median amount of high energy activity during the monitoring period. Once the child has sustained this level of activity for 1e2 weeks without significant payback, the activity level is increased by 10e20% every week. Recording activity levels can help children to notice whether they are doing the same each day or varying their activity.

Cognitive behaviour therapy (CBT) There have been 5 randomised control trials of CBT for CFS/ME in children which have shown that this is an effective treatment approach, delivered face-to-face (10 sessions), via the telephone or as online therapy. CBT incorporates activity management and GET, with the cognitive components facilitating the behavioural change by addressing potential cognitive barriers such as fear avoidance beliefs. CBT aims to tackle the behavioural and cognitive cycles that maintain fatigue. When an individual experiences chronic fatigue, on a good day, they may, for example, try to get everything done that they can, driven by thoughts such as ‘I don’t want to miss out’. On a bad day, they may do very little, driven by thoughts such as ‘I am tired, I should rest’. Activity management and sleep management strategies are utilised to tackle the behavioural cycles. Cognitive strategies such as identifying unhelpful thoughts and challenging these, with the aim of developing more helpful thoughts proceeds alongside the behavioural programme. Attention is also shifted away from the symptom of fatigue using attentional retraining principles. Parental involvement in CBT is strongly recommended.
 
Last edited:
He clearly doesn't understand that exercise is then at the expense of everyday things, that increased activity is the default behavior for almost everyone as soon as they can. Hardly anyone needs a coach to get moving after they are ill, the whole premise is absurd. This is Being There medicine, exactly as useful as a sock potato is at... how do they say it... leeching off toxins? Or whatever.

I think he would have done better to keep quiet I'm more convinced he doesn't have a clue.
 
In a tweet he explicitly stated he hasn't seen any himself. Which may be true, that he didn't see them, in the sense that he didn't recognize it. I believe him on that. Very likely those who did simply did not go back. As we know these clinics are basically the polar opposite of rigorous and cannot assess anything.

Which makes the main point: that clinical judgment is too unreliable here. Even those who do set their eyes on it do not recognize what's happening, which is normal, as disappointing as it may be humans don't have magical abilities to evaluate reality without technology or instruments.

Although his comment that he expected NICE to review the evidence on tests was frankly bizarre, it was never part of their remit, it would be basic science anyway and there obviously hasn't been any because of lack of funds and resources.

The intersection of well-meaning but misguided is very accident-prone, a true ethical blind spot.
How many patients say they have done the activities prescribed when they have not (because they can't or because it makes them feel worse), and say they feel better when they do not?
 
2 people have let me know about Dr P H article. I’m just saying it’s positive he supports publication

but he doesn’t seem to understand the scientific basis for treatments to be included in guidelines and that he seems to be waffling on about researching alternative therapies when we need biomedical research
 
Back
Top Bottom