United Kingdom: Kings College London; South London and Maudsley NHS Trust

whatever they say they will still get referrals for CFS patients:

Referrals
Presenting problems
Persistent physical symptoms (PPS) are persistent or relapsing physical symptoms of new or definite onset causing a substantial reduction in previous levels of occupational, educational, social, or personal activities. Symptoms include fatigue, pain, gastrointestinal symptoms, breathlessness.

Syndromes may include:

  • fibromyalgia
  • non-cardiac chest pain
  • irritable bowel syndrome
  • chronic pelvic pain
  • persistent unexplained pain
  • hyperventilation or dysfunctional breathing
  • irritable bladder syndrome
  • chronic fatigue syndrome: clinically evaluated, unexplained, persistent or relapsing fatigue that:
  • is of new or definite onset
  • is not the result of ongoing exertion
  • is not substantially relieved by rest
  • results in substantial reduction in previous levels of occupational, educational, social, or personal activities
Click to expand...
Support and management in primary care
  • Explanation of illness is often of value
  • Recommend avoidance of excessive rest or excessive exercise or activity and/or sudden changes in activity
  • Antidepressants are principally of value where there is a co-morbid depressive illness or clear-cut depressive symptoms
  • For those with Epstein-Barr virus, glandular fever or other infections advise to engage in activities as soon as possible
  • Suggest use of self-help guides
  • Cognitive behaviour therapy (CBT) if available
  • There is no current evidence that allergy, immune or dietary manipulation is helpful
CBT is an effective, evidence-based treatment for these conditions.
Click to expand...
Recommended self-help guides
  • ‘Coping with Chronic Fatigue’ by Trudie Chalder, Sheldon Press
  • ‘Overcoming chronic fatigue’ by Mary Burgess with Trudie Chalder, Constable and Robinson
  • ‘Overcoming chronic fatigue’ in Young people by Katharine Rimes and Trudie Chalder, Routledge
Click to expand...
https://slam.nhs.uk/referrals-persistent-phsycial-symptoms
 
[*]Explanation of illness is often of value
[*]Recommend avoidance of excessive rest or excessive exercise or activity and/or sudden changes in activity
[*]Antidepressants are principally of value where there is a co-morbid depressive illness or clear-cut depressive symptoms
[*]For those with Epstein-Barr virus, glandular fever or other infections advise to engage in activities as soon as possible
[*]Suggest use of self-help guides
[*]Cognitive behaviour therapy (CBT) if available
[*]There is no current evidence that allergy, immune or dietary manipulation is helpful
Click to expand...
:laugh:lol an explanation would be utterly priceless!

but considering we dont know, NO ONE KNOWS, it is the epitome of hubris/religious level belief, to think you can explain it.
 
The note about there being no current evidence for dietary changes and immune/allergy manipulation is really something in itself considering that dietary changes and antihistamines are basically two of the only common things that actuall help some people.

It sure is true that there is no formal evidence, because EBM is simply awful at this stuff. But it actually meets an even higher standard than their own evidence: it IS of actual help to some. Far more than anything they do. We don't know why but it could tell us many things if only there were an actual expert profession that is able to do this basic work.

It's hard to put in proper context just how completely uniquely bad this is, how not a single other profession does anything this awful even about trivial problems. This is an extreme form of incompetence.
 
I mean, we knew they'd do this. But it's still a galling display of "piss-taking", as my late Nana would say.

Ideologues digging their heels in, despite best practice leaving them behind.

Still, anyone treated by them might be in for a huge windfall if they can organise class action against the clinics.
 
adambeyoncelowe said:
I mean, we knew they'd do this. But it's still a galling display of "piss-taking", as my late Nana would say.

Ideologues digging their heels in, despite best practice leaving them behind.

Still, anyone treated by them might be in for a huge windfall if they can organise class action against the clinics.
Click to expand...

It's why patients of all varieties should band together and just attack the bad practices used together. We've been fighting from our little niche corner and have managed to get some points across but seeing how pervasive this is in medicine and how many groups are affected there really should be a concerted effort to get rid of the problem root and stem. That would be some undertaking though...
 
bobbler said:
Sweepstake on how many of the 30 are funded vs what the median/mean taken up number of sessions are. I keep seeing on social media that those who end up referred to many clinics are told if they don't attend sessions where they have little choice or flexibility on dates twice in a row they are out on their ear, I don't think I'm being cynical to wonder whether the bill is 30 but you'd have to be surprisingly well and also somehow have no other commitments and miraculously get no other illness or bug over that time period to ever complete 30.

Plus services I've know even in employer ones rarely offer more than 6-8 due to 'demand' which makes me think the above even more. I'm all for enough if someone needs more of whatever but saying 30 sessions isn't the same as offering 30 doable sessions to each person - and that is before them being useful/in demand from anyone. DO the funders look into this, and are there stages for that funding ie you have to reapply after 10 weeks/how does it work?

I say this curious because I'm sure I've seen research papers from other areas that show a large % of some services have people dropping out after 1-2 sessions. To whcih I was also curious whether the 1 session was enough to trigger the 'full bill' e.g. I know the uni sector and there used to be a Dec deadline by which point if someone was still enrolled then the full year's fees were due. How does this work in this instance?
Click to expand...


In fact, because I think that being 'on top of' the money flow/way it all works is important I'm going to reiterate that last question to see if anyone happens to have been in a situation where they either know the answer or could point to info that informs a good estimate:

Is someone merely being signed up to, or just doing 1 session (and never returning), enough to trigger the 'full bill for the entire course of CBT, GET etc' with these clinics? At what point/what criteria is that money/funding released?

Do any of these places charge/bill/count work done 'by the session (rather than full course of sessions or number of patients however many sessions or appts they have)'?

More context/thoughts:
I think this would be an interesting FOI or project to see how they all work - and if there are different protocols/process by either geographic area or type of clinic (BPS vs on-BPS but also lots are private providers etc).

BUT I also gather this could be 'muddied' by the way that contracts work meaning that it is hidden in reporting or caveats - e.g. funding is based on 'how many pass thru' and we are then looking at a question of how many sessions/what someone has to do in order to 'be counted' on this list.

I can well imagine how undesirable it might be to change to something actually 'in demand' if you were running a service where the ave number of sessions actually done by patients was a mere fraction of the number you were funded for.


I'm concerned that rather than mapping out the basics, bare minimum of what PwME would actually need from a 'service' - although really the 'system' (context) needs to be mapped for this, because it depends on what GPs or employers or benefits or hospitals and other things are still doing or not changing as to whether a lot of this is basically 'protection from or instruction to, or back-up in' not even for medical care but safety and basics rights to what others take for granted as these.

Claims of funding would be an issue is one of the things cited for 'new clinics' but really this stuff is really basic - and changing eg. OT help from a focus on motivation to MEA/ForwardME for example pushing for issues related to rest like sorting noise issues, bed issues, adjustment issues so people aren't pushed into the over-threshold zone etc.

EDIT: it would be good to know precisely what is actually funded/how the system works currently to see the context of what those limitations are re: funding etc.
 
Last edited:
bobbler said:
In fact, because I think that being 'on top of' the money flow/way it all works is important I'm going to reiterate that last question to see if anyone happens to have been in a situation where they either know the answer or could point to info that informs a good estimate:

Is someone merely being signed up to, or just doing 1 session (and never returning), enough to trigger the 'full bill for the entire course of CBT, GET etc' with these clinics? At what point/what criteria is that money/funding released?

Do any of these places charge/bill/count work done 'by the session (rather than full course of sessions or number of patients however many sessions or appts they have)'?

More context/thoughts:
I think this would be an interesting FOI or project to see how they all work - and if there are different protocols/process by either geographic area or type of clinic (BPS vs on-BPS but also lots are private providers etc).

BUT I also gather this could be 'muddied' by the way that contracts work meaning that it is hidden in reporting or caveats - e.g. funding is based on 'how many pass thru' and we are then looking at a question of how many sessions/what someone has to do in order to 'be counted' on this list.

I can well imagine how undesirable it might be to change to something actually 'in demand' if you were running a service where the ave number of sessions actually done by patients was a mere fraction of the number you were funded for.


I'm concerned that rather than mapping out the basics, bare minimum of what PwME would actually need from a 'service' - although really the 'system' (context) needs to be mapped for this, because it depends on what GPs or employers or benefits or hospitals and other things are still doing or not changing as to whether a lot of this is basically 'protection from or instruction to, or back-up in' not even for medical care but safety and basics rights to what others take for granted as these.

Claims of funding would be an issue is one of the things cited for 'new clinics' but really this stuff is really basic - and changing eg. OT help from a focus on motivation to MEA/ForwardME for example pushing for issues related to rest like sorting noise issues, bed issues, adjustment issues so people aren't pushed into the over-threshold zone etc.

EDIT: it would be good to know precisely what is actually funded/how the system works currently to see the context of what those limitations are re: funding etc.
Click to expand...
Given the outsourcing within NHS , this is an important aspect. Vitality 360 and others may provide such services .

Then there's the new " app" era dawning.
Does a download count as treatment?
 
still on their website (although from 2014), without any warnings.

CBT for chronic fatigue syndrome
Research led by Professor Trudie Chalder

Our researchers were among the architects of a bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.

People who have chronic fatigue syndrome (CFS) are often unwell for considerable periods of time and the symptoms can have an enormously detrimental effect on their everyday lives: in some cases, people can become housebound or even confined to bed. In addition to the profound and disabling exhaustion – which isn’t alleviated by rest – other symptoms can include joint and muscle pain, headaches, disturbed sleep, short-term memory problems and difficulty concentrating. Approximately 250,000 people in the UK have CFS.

Professor Trudie Chalder is Director of our Chronic Fatigue Research and Treatment Unit, jointly run with the South London and Maudsley NHS Foundation Trust. The Unit offers treatment to people referred from all over the country.

When Professor Chalder and her team first piloted Cognitive Behaviour Therapy (CBT) for CFS in 1991, there were no established treatments for people who had been given the diagnosis.

22-cbt-for-chronic-fatigue-syndrome.xef07a7e2.png

© Alamy
CBT for CFS is based on the premise that the way people cope with the symptoms may contribute to their illness. ‘People often believe that if they don’t rest, their symptoms will get worse’, says Professor Chalder, ‘yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.’

‘We think that what starts the fatigue is not the same thing that perpetuates the symptoms,’ she says. ‘People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.

‘Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.’

CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

‘It also helps address any beliefs that may make recovery more difficult. CBT helps patients understand their symptoms, tackle the understandable fears they have about activity and encourages people to do more despite their tiredness.’

Professor Chalder has developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds referred to the Chronic Fatigue Service. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.

The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Both CBT and the other NICE-recommended treatment for CFS – Graded Exercise Therapy (GET) – encourage people to become active again.

Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

The PACE trial used the ‘Chalder Fatigue Scale’, first created in 1993 to measure physical and mental tiredness. The 11-question form is used in both research studies and specialist clinics all over the country to monitor people’s progress and assess how effective the treatment is.

References
  • Chalder T et al. Development of a fatigue scale. Journal of Psychosomatic Research, 1993; 37(2): 147-153
  • Deale A et al. Cognitive behaviour therapy for chronic fatigue syndrome: a randomized controlled treatment trial. American Journal of Psychiatry, 1997; 154(3): 408-414
  • Chalder T et al. Family cognitive behaviour therapy for chronic fatigue syndrome: an uncontrolled study. Archives of Disease in Children, 2002; 86(2): 95-97
  • Quarmby L et al. Cognitive behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Behaviour Research and Therapy, 2007; 45(6): 1085-1094
  • White PD et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. PACE trial management group. The Lancet, 2011; 377(9768): 823-36
  • McCrone P et al. Adaptive pacing, cognitive behaviour therapy, graded exercise and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One, 2012; epub August 1
  • White PD et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. PACE trial management group. Psychological Medicine, 2013; Jan 31: 1-9 (epub) Institute of Psychiatry, Psychology & Neuroscience
Click to expand...
https://www.kcl.ac.uk/news/spotlight/cbt-for-chronic-fatigue-syndrome
 
podcast from 2019
CBT for Chronic Fatigue Syndrome
Let's Talk About CBT · 2019-11-19

How can a talking therapy help with a problem that feels as physical as chronic fatigue syndrome?

Ben Adams talks to Dr Lucy Maddox about overcoming his initial scepticism about CBT and why he's glad he did. Professor Trudie Chalder explains the ideas that cognitive behavioural therapy for chronic fatigue syndrome is based on.

Show Notes and Transcript

More information is in the the links and books below.

Websites

For more about BABCP check out: www.babcp.com

To find an accredited therapist: http://cbtregisteruk.com

NHS Webpage about treatments for CFS:

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

Books

Overcoming Chronic Fatigue Syndrome by Mary Burgess and Trudie Chalder

Note

At the time of recording all information was accurate. NICE guidelines are currently being reviewed and due for release in 2021

Transcript

Lucy: Hi, and welcome to Let’s Talk About CBT, the podcast from the British Association for Behavioural and Cognitive Psychotherapies, or BABCP. This podcast is all about CBT, what it is, what it’s not and how it can useful.

In this episode we’re going to find out about CBT for chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME. Throughout the podcast you might hear ‘chronic fatigue’ sometimes used instead of the full name. But it’s chronic fatigue syndrome or ME that we’re talking about.

I went to a specialist clinic at the Maudsley Hospital in London to meet Ben who’s experienced chronic fatigue and its treatment. I was there on the hottest day of the year so the tube was pretty horrific.

Ben: I’m Ben Adams and I was diagnosed with chronic fatigue syndrome back in, gosh, 2015 I think it was now.

To give a little bit of a history I was healthy, broadly healthy, in as much as anybody is, until about sort of 2012. Then I became… I had a period of depression, there was difficulties in my personal life and relationships and all sorts of family things. And I think my body sort of chose to break down in some way or stop me a little bit.

And I started feeling very tired, really unwell, my brain wasn’t clear. I thought originally it was the depression, but actually I think that morphed into the chronic fatigue. I think one sort of caused the other. And they can go hand in hand quite a lot.

It took me about a year or so – or a bit longer – to actually get the diagnosis of chronic fatigue as opposed to trying to treat depression which wasn’t really doing it. Because I wasn’t actually that depressed (laughs). My mood was actually fairly good. I was just concerned about why I felt so weak and so feeble all the time.

And, yeah, it had a lot of impacts on me. I missed a lot of work during that time. I was working full-time beforehand, had rarely had any sickness over the last sort of 20 years of work. The odd day off here and there but I had… I mean over about four years or so, I had about 18 months off totally in sections. And when I was at work I was on phased returns and doing short hours and not doing a great deal to be honest.

So I had a really long period of sort of getting worse and worse, trying to get back to work, making myself worse. And I actually felt that each time I’ve tried to get back to work after a long period of sort of being unwell and being off sick, it would be hard and after a while it would be… it would feel like I was making myself worse. Like the activity, the mental and physical activity of going to work, each time there’d be a sort of a breakdown afterwards and I’m thinking, “God I’m getting worse and worse, that my baseline is getting lower each time of what I can do.”

And so it was getting to the point where I was almost housebound when I was at my worst. I think, yeah, I’d had about nine months off sick in my longest sort of period off sick at once. And it felt like it was getting up to the end really.

I’d tried all sorts of things beforehand. I’d had a very short period of CBT at the start of my illness, but that was also a bit sort of to do with depression as well. So maybe it wasn’t targeted as well.

And so that didn’t work brilliantly and so during those four years I was trying all sorts of remedies that you read on the internet. Vitamins, testosterone, I don’t know, everything I could try. And nothing helped. And then eventually I got into the Maudsley Hospital.

Lucy: We’ll hear more from Ben and his experience of therapy. At the clinic I also met Trudie Chalder, Professor of CBT at King’s College London, and Director of the Persistent Physical Symptoms Research and Treatment service.

I asked Trudie, who’s treated lots of people with chronic fatigue, what it means to have the condition.

Trudie: Chronic fatigue syndrome is defined by, obviously, its symptoms. So the primary symptom has to be fatigue, but it’s also associated with lots of other physical symptoms such as pain, painful muscles, so myalgia, sleep difficulties, concentration and memory problems to name but a few.

It’s also associated with lots of disability. So people who have chronic fatigue symptoms are often unable to carry out normal activities that we all take for granted.

Some people are not able to go to work, even though they would like to. Other people manage to go to work but are not managing much else in the way of social activities or being able to do things at home – the hoovering or washing up or whatever.

So it has a very profound impact on people’s lives. There are some people who seem to be managing it reasonably well at one end of the spectrum, and then there are other people at the other end of the spectrum who are very severe, who may be in a wheelchair or may even be bedbound.

Lucy: Before starting the therapy, Ben had reservations about whether it was right for him.

Ben: I was incredibly cynical at the time. I’d been on the internet a lot. I’d been looking for cures, looking for hope for a long time and I was very much of the thought that extra activity, increasing my activity, would make me worse as it seemed to have been doing throughout those phased returns to work.

Lucy: That sounds quite scary actually. If you get worse every time you go back that sounds quite frightening.

Ben: Yes, it was. It was really frightening. And so that was, when Antonia was saying we could have a treatment here and I was like, “Well, I don’t want to get any worse and at the moment I’m housebound but I can just about live on my own.” And I have friends who would come round and empty the bins for me and things like that and do heavy stuff. But I could sort of potter around my flat and get out occasionally for a little walk.

There was a few emails going back and forth with Antonia at the start. And I was saying sort of, “What guarantees can you give me? I’m really scared.” And she said she couldn’t really give 100% guarantee that it wouldn’t get any worse but she said in all her sort of 10 years of treatment in this field at the Maudsley that none of her patients had ever got significantly worse. A lot have got better to various degrees. So I thought, “Well, weighing it up I’ll give it a go.”

And so I started treatment with her. I think that was towards the end of 2016.

Lucy: There was something else that concerned Ben before trying CBT which is quite a common concern for people experiencing chronic fatigue.

Ben: I think as a chronic fatigue syndrome sufferer, when you come into the Maudsley Hospital it’s a sort of mental health unit. And you’re kind of thinking, “Hang on a minute, I feel like I’ve got really bad flu all the time. Why does somebody want to talk to me about my mind?” Some people get really angry about on the internet. We all know about that.

And I can understand that. You kind of think, “Why are you trying to treat my head when I feel my body’s so awful?” And so I think maybe trying to get over the fact that the CBT, even though it’s talking therapy, your physical symptoms are there and it’s a slightly different way of managing them as opposed to taking a pill.

But it’s a hard thing to explain to people who think, “I feel very ill, I need some sort of pill, there’s something wrong with me physically. I need a… talking to somebody’s not going to help.”

Lucy: Yeah, it’s a really, I can totally understand how frustrating that must feel if you’ve got very physical symptoms then you're being asked to come and talk about it.

Ben: Yes.

Lucy: Trudie explained a bit more about this link between physical symptoms and how CBT can affect them.

Trudie: Well I suppose the first thing to say is that the fatigue is not the sort of tiredness that we all feel on a day like this when it’s nearly 100 degrees.

Lucy: It’s really hot.

Trudie: Yeah. (Laughter)

The fatigue that people are feeling is abnormal. It feels very out of control and it feels extreme. And there’s no doubting the fact that the symptoms are real and they’re physical. But that real physical symptoms, which will be potentially perpetuated by physiological factors, so hormones and all sorts of different things that are happening in your body, as well as what do you, that those things can be altered by you doing things differently.
Click to expand...
https://uk-podcasts.co.uk/podcast/let-s-talk-about-cbt/cbt-for-chronic-fatigue-syndrome
 
pt2
Lucy: What is cognitive behavioural therapy for chronic fatigue syndrome? What’s it like?

Trudie: Well, cognitive behaviour therapy is a practical approach primarily. It’s a talking therapy. And it helps people to reengage with some of the things that they value very highly. And gradually build up their activities over a period of time.

Obviously at the start people feel very daunted about any change. And at the beginning they may feel very sceptical about whether it’s going to even work. But obviously with all CBT everything is negotiated with a therapist, so nothing is imposed upon anybody unless they decide that that’s what they want for themselves.

And at each session, which is usually an hour long and occurs weekly or fortnightly depending on what the person is able to do, it can be face to face or over the telephone. And at each session the person will discuss any goals that they’ve set with the therapist and any difficulties that they’ve had. And then those difficulties can be discussed with the therapist in a problem-solving kind of way.

Lucy: I asked Ben a bit more about his experience of CBT.

Ben: I think I had… let me think, was it about 10 or 11 sessions with her maybe? Every couple of weeks. And so it would be a combination of CBT and discussions of how to increase my activity.

So I think the CBT, it was mainly aimed at how to – not differentiate between physical and mental symptoms – but sort of understand how the body and the mind interact. And stop me thinking that I would necessarily make myself worse by doing physical things.

And that was key. I was terrified that every time I did extra physical activity it was making me worse. And she was saying, actually the opposite, could be okay and actually make me better. But to do that you had to get through the mental barrier, I think, of the perception of my experiences.

Lucy: At some point did you have to start doing more? Or not have to maybe but choose to?

Ben: Yes. I mean, well every session I had, I think they were every two weeks to begin with, we’d sort of set targets.

And so one of the first ones would be just to go out of the flat and sort of walk around the block. And then, and I’d do that every day. And I think that that was the key, one of the key things was doing it consistently, not thinking, “Oh I’ve done that, I’m exhausted. I need a long rest now. I won’t do that tomorrow. I’ll give it a few days.” To do it every single day, however I felt, and make it a consistent repeating pattern. And it did slowly get easier.

Lucy: That’s so hard to do, isn’t it? I mean anyone who tries to make a change of any kind, that’s really difficult to get that consistency.

Ben: Yes. Yeah, definitely. And it was difficult but I… I think having her to guide me and to meet her every two weeks really helped because there be some times I’d come in and think, “I feel really awful, this isn’t getting anywhere. We’ve made some gains in the first few weeks but now I’m not feeling great. Should I keep going with this? Is it going to hit me hard in a couple of weeks’ time and then suddenly I’ll be even worse than I was?”

But I think having somebody to guide you through it, to talk to you when you're down or feeling unwell really helped.

Lucy: Trudie described what she often sees happening during a course of CBT.

Trudie: What we tend to see in the beginning is that people become more consistent in what they’re doing. So they’re less driven by their symptoms, as it were, and they become more in control of their lives. So rather than the symptoms controlling them they become more in control of what they’re doing.

So they develop a more consistent approach to things and then their fatigue usually starts to reduce a little bit.

Sometimes things get slightly worse before they get better. But on the whole, if they can stick with it and they're consistent in the way in which they approach things, they do improve.

Lucy: Consistency is really key. Ben gradually increased the amount of activity that he was doing.

Ben: Over the weeks I would extend my exercise, so I’d walk further and further round the block. I’d walk to my local park, Burgess Park.

Initially I’d sort of… (Laughs) I’d have places to stop that I knew so I could, there’s benches that I would lie down on, have a bit of a rest, get a bit further. And then make my way back. And then gradually I was getting further and further away from my flat.

And then it was a combination of doing that with taking my fold-up bike. I think you’ve just seen that earlier.

Lucy: I did just see, very impressive, you cycled on the hottest day that we’ve had this year. (Laughter)

Ben: I'm in a first floor flat and I used to pick up that bike, about 13 kilos, and I hadn’t ridden it for a long time. And I remember the task was, not even to take it down to ride, it was just take it down the front stairs to the ground floor and then take it back up. (Laughs) And it was very heavy and I was very weak. But I did it and then again I did it every day and every day.

And then I got on it and then I cycled round the block, so I have a cycle and a little walk every day. And it’s just really building that up until I was able to then return to work to a degree as well.

Lucy: Right, how did that go?

Ben: It was okay. My employer, Transport for London, I’ll give them a plug now actually because they sort of looked after me quite well during all this period. I think a lot of other companies after that amount of sickness I’d have been given the heave-ho. But they were very good. And they let me come back on a phased return.

The first week, I think it was one hour a week working from home. So it was the minimum amount of work you could possibly do. And I was doing some sort of very basic admin sort of data entry type stuff. Just to get into the habit again of looking at a screen and typing and getting into that sort of mode and that mindset.

And then gradually again that increased more and more work from home, longer hours, longer hours. And eventually I would come into the office on one day a week. Again gradually I built that up so I’d come in and do longer hours and actually do some work.

Probably about two and a half years ago now I got back up to 21 hours a week. Which was my part-time number of hours. So like a three-day week effectively. I’d been a five-day a week, 35-hour week beforehand, but I’d sort of been moved on to a part-time one as part of trying to make me manage it.

The good thing was I could then actually do that and I have been able to do those hours since then without any illness really.

Lucy: Amazing.

Ben: So it’s, yeah, so it’s been really good. But it’s a long hard slog and… (Laughs)

Lucy: Yeah. Going from seeing you cycling in today and then you talking about sort of being stuck in your flat before it seems so, so different.

Ben: So once I sort of understood how my mind was reacting to the physical symptoms I was experiencing, and then I could then change my actions based on that and start doing more exercise. But in this very regimented sort of safe way that wasn’t a sort of a boom and bust I think that happens to a lot of people. They think, “Ooh I'm having a good day, I’ll do quite a lot today.” And then you feel awful the next day.

It’s still there. I know that using excesses of energy is going to hit me hard. And even actually when it’s hot like this I think I’m definitely more susceptible to extremes of heat or exercise or temperature or those sorts of things. So I’ve just got to be a bit more careful. So I’m not cured but I’m a lot better.

Lucy: Yeah.

Trudie talked about boom and bust as well.

Trudie: Sometimes people have inadvertently got into that pattern of doing a lot when they feel very energetic and not doing very much at all when they’re very symptomatic. And this is totally understandable. But I suppose it can perpetuate the problem.

So in the first instance we ask, as far as is possible, given the demands of everyday life, that people try to be more consistent in their approach to activities to try and avoid that booming and busting. Which is quite a common thing. I mean people do it with all sorts of different illnesses. But, of course, it does leave even a healthy person feeling exhausted if they go at things like a mad thing. (Laughter) And then collapse with exhaustion. It can be more effective to do things in a more consistent way.

Lucy: I was just thinking we could probably all learn something from that.

Trudie: Yeah. (Laughs) Exactly.

Lucy: As well as regulating activity, Trudie and Ben both agreed that it is helpful to develop a sleep routine.

And is there anything else that you think people should know?

Trudie: Well I think the most important thing is that nothing is forced upon them. Everything is negotiated, it’s a talking therapy, so the therapist will be hopefully warm and empathic and understanding. And will really take a problem-solving approach but together with the individual.

And usually things are never simple. So there will be lots of problems along the way and hopefully the therapist would help the person to sort those things out.

And also I think the other thing is that if at first you don’t succeed, keep trying. Often it’s that life, other life events have got in the way or it’s been difficult to be consistent. But I feel sure in terms of having been in this field for more than 30 years that it is possible for people to change and that it’s possible to be hopeful.

Lucy: That’s great.

I asked Trudie about the evidence base for CBT for chronic fatigue.

Trudie: Well there are lots of studies now carried out in different countries around the world, but in particular the UK and the Netherlands, showing that CBT is an effective treatment in terms of reducing the symptom of fatigue and improving disability. So at the end of treatment people are much better able to carry out their normal lives than they were at the beginning.

Obviously it’s not a cure for everybody. And people are often still left with some symptoms. But a lot of people do improve. And there are, as I say, lots of randomised control trials demonstrating its efficacy.

Lucy: To end I asked both Ben and Trudie if they had any last remarks for people who are considering CBT for chronic fatigue.

Ben: It’s good in that it’s quite focused and practical. I mean I’ve had a lot of sort of talking therapy in my life for various things over the years. And so I sort of delved into my background and my family and all those sorts of things. And it’s always quite interesting. But I think you can sort of go too far with that, dwell too long on that.

And actually I think CBT’s a bit more, “Let’s get to the nub of the problem and try and sort out your thinking so that you can improve in a more focused way.” You generally don’t have too many sessions of CBT and it’s – it is more practical and more focused and I think that’s something that is good actually.

Trudie: I would suggest you go along to the GP and hopefully if your GP is supportive they could potentially refer you to a specialist centre. There are a few around the country but also the IAPT services are now seeing people with chronic fatigue syndrome and chronic fatigue.

Lucy: And IAPT, is that Improving Access to Psychological Therapies services that are nationwide now?

Trudie: Yes. That’s right. And they should or could potentially be able to see the person as well. So I think in the first instance go along and talk to somebody about what it entails. And take it from there.

Ben: It definitely helped me. It’s not going to cure everybody obviously, but it’s certainly a very good and focused way of changing your mindset I think and helping you to think about things. But I know it can be used in all sorts of different illnesses and different ways, particularly where the mind and body sort of overlap. It’s been a good experience for me.

Lucy: Oh that’s great.

Trudie: I suppose to finish on a note of optimism I would say that the majority of people that I’ve seen over the years, and it’s a long time, have really wanted to change and have demonstrated to me that change is possible.

Lucy: That’s great. A hopeful message to end on. Thank you.

A really big thank you to both of my experts there, Ben and Trudie. If you’d like more information on CBT for chronic fatigue have a look at the show notes. There’s lots in there.
END OF AUDIO
Click to expand...
TC "Obviously it’s not a cure for everybody. And people are often still left with some symptoms. But a lot of people do improve. And there are, as I say, lots of randomised control trials demonstrating its efficacy."
eta:
note 'Bens story' is also the only one featured on BABCPs personal accounts of CBT for chronic fatigue syndrome
https://babcp.com/What-is-CBT/Personal-Accounts-of-CBT/Ben-CBT-for-Chronic-Fatigue
 
Last edited:
It's hard to comment without saying anything too personal about Ben's story. I wish him well and all that, BUT.

The claim that no patients have been made worse is a big red flag. So maybe when they find patients hit the wall of their activity limits, they discharge them, or they just don't go back to the clinic so the therapists never know. Or maybe they set their starting point for increasing activity so much lower than their current activity levels that increase is possible, and they discharge them before they hit their limit, and claim improvement. Or maybe they get a lot of patients with primarily depression or burn out who don't have PEM. Who knows.

One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.
Click to expand...
That's not what the results showed.

The trouble with stories like this is that they sound so plausible. Even after all the years I've had ME, I catch myself thinking - maybe I could do that - maybe if I just add a short walk every day I'll improve too... Oh, I so wish it were so easy.
 
Trudie - Some people are not able to go to work, even though they would like to. Other people manage to go to work but are not managing much else in the way of social activities or being able to do things at home – the hoovering or washing up or whatever.

So it has a very profound impact on people’s lives. There are some people who seem to be managing it [presumab1y 'it' is their 'CFS'] reasonably well at one end of the spectrum, and then there are other people at the other end of the spectrum who are very severe, who may be in a wheelchair or may even be bedbound.
Click to expand...

She gives away her be1ief that a11 'CFS' patients have a behavioura1 condition in her words here. You wou1dn't say that about MS (for examp1e), that at 'one end of the spectrum' peop1e are managing their MS we11 in contrast to those who are in a whee1chair. or house/bedbound. Rather you wou1d say some MS patients are 1ess severe1y affected and hence ab1e to 1ive a reasonab1y norma1 1ife, whereas other MS patients might be very severe1y affected by their condition.

She's obvious1y not saying peop1e with mi1d 'CFS' have avoided becoming more severe by 1imiting their activity and avoiding triggering PEM, as she goes on to ta1k about increasing activity (the usua1 tripe she spouts). Whatever she's ta1king about, it's not ME/CFS with the ha11mark PEM as we understand it (and now recognised by NICE).
 
Amw66 said:
Given the outsourcing within NHS , this is an important aspect. Vitality 360 and others may provide such services .

Then there's the new " app" era dawning.
Does a download count as treatment?
Click to expand...


This may be a repeat but basically for university fees there is a Dec deadline after a student enrols end set/early oct by which if they are still enrolled the whole fee is due ie the whole year's fees have been triggered.

I’m sort of angling at things like this which would certainly inform any data eg of all patients ended up doing ‘2months’ no matter how many sessions it if just one session released the whole amount of funding for up to 30 to Kings etc
 
Last edited:
job ad
Psychology Research Assistant
We have an exciting opportunity for a research assistant within the Persistent Physical Symptoms Service, Maudsley Hospital. We are seeking an enthusiastic person to be part of our internationally recognised service.

You will work as part of a clinically experienced multidisciplinary team that includes Psychiatrists, Therapists and a Physiotherapist.

The post holder will be vital in supporting the clinical team with any research or day to day activities that are delegated to them.

In this role, the post holder will be responsible for administering psychological measures, data management duties, data analysis, as well as writing up of results.

We are an internationally recognised service providing assessment and evidence-based treatment for persistent physical symptoms (PPS). Our expertise includes chronic symptoms in long term conditions and medically unexplained symptoms. We treat a range of conditions including:

Persistent physical symptoms

Chronic fatigue syndrome

Chronic physical symptoms and disability in long term conditions

Fibromyalgia

Irritable bowel syndrome

Non-cardiac chest pain

Dysfunctional breathing

Chronic pain

We pride ourselves in our ability to engage with people who have complex and sometimes long-standing difficulties. We can treat people with significant disability and those suffering from co-morbid depression or anxiety.

Main duties of the job
The successful candidate will be responsible for managing a computerised database of patient's referral details, subsequent processing and presentation of information. They will co-ordinate responses to requests for information both internally and externally and will be responsible for the analysis of data for the unit and trust purposes, using SPSS.

They will oversee the collection and analysis of data in relation to various research projects being undertaken in the unit with assistance from senior members of the team, and contribute to writing up scientific papers related to research carried out in the unit. The post holder will also provide active administrative assistance in the clinical research aims of the unit.

The post holder will be required to interact appropriately with research participants, service users, their carers and relatives, with the ability to convey the goals of the research in a friendly manner. They will also participate in and contribute towards multi-disciplinary meetings within the unit, as well as liaising with health professionals outside of the research team as required.

The post holder will also be responsible for ensuring that study recruitment targets are met and that accurate data collection records are maintained.
Click to expand...
Job description
Job responsibilities
  1. JOB PURPOSE
The post holder will be part of the Persistent Physical Symptoms Research and Treatment service, and will be vital in supporting the clinical team with any research or day to day activities that are delegated to them.

In this role, the post holder will be responsible for administering psychological measures, data management duties, data analysis, as well as writing up of results.
Click to expand...
FACTS AND FIGURES
We are an internationally recognised service providing assessment and evidence-based treatment for persistent physical symptoms (PPS). Our expertise includes chronic symptoms in long term conditions and medically unexplained symptoms. We treat a range of conditions including:

Persistent physical symptoms

Chronic fatigue syndrome

Chronic physical symptoms and disability in long term conditions

Fibromyalgia

Irritable bowel syndrome

Non-cardiac chest pain

Dysfunctional breathing

Chronic pain

We pride ourselves in our ability to engage with people who have complex and sometimes long-standing difficulties. We can treat people with significant disability and those suffering from co-morbid depression or anxiety.

At South London and Maudsley NHS Foundation Trust we provide the widest range of NHS mental health services in the UK. We also provide substance misuse services for people who are addicted to drugs and alcohol. Our 4,600 staff serves a local population of 1.3 million people. We have more than 230 services including inpatient wards, outpatient and community services. We provide inpatient care for approximately 5,300 people each year and we treat more than 45,000 patients in the community in Lambeth, Southwark, Lewisham and Croydon. We are part of one of Englands six Academic Health Sciences Centres,Kings Health Partners, with Kings College London,Guys and St ThomasandKings College HospitalNHS Foundation Trusts.

  1. ORGANISATIONAL POSITION
The post holder will be line managed by the PPS Research & Treatment Unit Lead Psychotherapist/Service Manager, Clare Grey and supervised by the Clinical Lead, Prof Trudie Chalder.

  1. KEY RESPONSIBILITIES
  • Manage a computerised database of patients referral details, subsequent processing and presentation of information.
  • Co-ordinate responses to requests for information both internally and externally.
  • Analysis of data for the unit and trust purposes, using SPSS
  • Provide active administrative assistance in the clinical research aims of the unit
  • To collect data in relation to various research projects being undertaken in the unit
  • To analyse data with assistance from senior members of the team
  • To contribute to writing up scientific papers related to research carried out in the unit
Click to expand...
https://www.jobs.nhs.uk/candidate/jobadvert/C9334-23-0481
 
Posts moved from UK news

Disturbing thread on X
Tagging @PhysiosforME , ( Dr Michelle Bull) has been querying details but needs wider charity awareness @Russell Fleming




I'm finding it difficult to put into words just how angry I am to have sat through such an appalling session on the so-called management of #MECFS at a conference delivered by @kingshealth this week to approx. 200 attendees. 1/6

Perhaps now that I understand more about the opinions of the team delivering the session, I should be unsurprised that there was no reference whatsoever to the NICE guidance or #PEM, and to have been advised to encourage #GradedExerciseTherapy 2/6

Nonetheless, I am in a state of disbelief to have been advised to "break the association between symptoms and stopping activity", "address reassurance seeking and unhelpful behaviours" and "make links between symptoms and behaviour" 3/6

Apparently, predictors of poor outcome include "being in receipt of invalidity benefits" and "belonging to a self-help organisation". Shocking examples of #patientblaming and #ableism 4/6

Often, no response is a powerful response. But not in this case. While unable to control the actions of others, we can choose how to respond to them, and as pointed out to me today, to not challenge something like this can be as good as accepting it @sunsopeningband 5/6

We are lucky that organisations including @LongCOVIDPhysio @MEAssociation @PhysiosforME @WAMESMECFS work hard to advocate for #pwME and #pwLC and educate HCPs on safe rehabilitation. We must continue to challenge unsafe and harmful practice. #StopRestPace 6/6



In replies
It was actually an FND conference, I didn't even notice there was a talk about ME/CFS. If I'd done my research first I might have known what to expect

ETA corrected last paragraph as double posted thread 6/6 previously
 
Last edited by a moderator:
The psychosomatic grift will always be with us. It is too unfalsifiable, easy, convenient, and lucrative to ever be finally buried for once and all.

Evidence, reason, ethics, and patients' lives will be endlessly sacrificed at its altar.
 
You must log in or register to reply here.
Back
Top Bottom