Cognitive Therapy
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Yes, Enid, that's the Kent and Sussex CFS Services, which are Barts controlled.
Yep and until they can keep their sticky fingers out of it we shall move on - well we have moved on way beyond them in all the research findings/pathologies now being revealed (and even being treated with some success for viral/retroviral/infections they are too stupid to grasp).
What is this Kent and Sussex CFS services - few here would go near it until they are more educated in the real thing.
What is this Kent and Sussex CFS services - few here would go near it until they are more educated in the real thing.
Thanks for your warm welcome Bob. Bearing in mind the content of my post, I was a bit nervous that I would be pounced on! Ooh and then I was later, thanks for getting in first with some decent questions.
To clarify Im doing what you might call integrated therapy. Cant remember whether the psychologist called it this, Ill check with her. It includes mindfulness, pacing, CBT and something called ACT which we havent touched on though Ive read some of the recommended book. Seems OK. I'll let you know more later if you're interested. And yes the psychologist is part of the Barts team of four psychologist and they all do mindfulness. It surprised me too!
For me, the CBT has covered the following. 1) Understanding the value and importance of regular rest. This is finally hitting home and Im beginning to see that as a way of nourishing myself instead of being irritated by it or feeling Im being lazy. Where as I did pacing with an OT at Barts that fact didnt sink in. I guess I need to think things through rather than just do them.
2) Its about finding what works for me in terms of doing and thinking. Being flexible is important as is experimenting. Its about finding a balance. This is beyond lifestyle management and actually does require quit a lot of thought.
When, inevitably, I over do it and suffer, CBT has offered 3) how I could have done that better so I dont suffer next time. Weve talked about how to recognise when Im being hard on myself and pushing beyond my limits (and why Im doing that). And having identified the signs, what I can then do to stop doing that.
For me its been very much about reigning in my determination and being more gentle with myself. Recognising how tough I am on myself in very subtle ways, has been a real eye-opener. Strain had become a way of life. The psychologist endlessly encourages flexible thinking and points out that there are times when internal or external demands will get in the way of the best laid plans. So Im learning to be a bit more chilled and mindfulness (which Ive done before) helps here.
I dont have a fear of activity and nobody has attempted to alleviate that fear. Both mindfulness and CBT play into developing an awareness of whats going on for me, both in a slightly different but complementary way and at many levels. And really its the mindfulness that I have found most useful. Challenging false illness beliefs has not reared its ugly head though I thought it would.
What really helps is that all this questioning and insight is developed in a very supportive atmosphere (either at Barts or by telephone) with a therapist who seems to be intent on helping rather than pushing dogma. I dont think it would work nearly so well if that genuine support wasnt a key part of it. As you say, hopefully Ive found a good therapist.
Hope that helps Bob.
To clarify Im doing what you might call integrated therapy. Cant remember whether the psychologist called it this, Ill check with her. It includes mindfulness, pacing, CBT and something called ACT which we havent touched on though Ive read some of the recommended book. Seems OK. I'll let you know more later if you're interested. And yes the psychologist is part of the Barts team of four psychologist and they all do mindfulness. It surprised me too!
For me, the CBT has covered the following. 1) Understanding the value and importance of regular rest. This is finally hitting home and Im beginning to see that as a way of nourishing myself instead of being irritated by it or feeling Im being lazy. Where as I did pacing with an OT at Barts that fact didnt sink in. I guess I need to think things through rather than just do them.
2) Its about finding what works for me in terms of doing and thinking. Being flexible is important as is experimenting. Its about finding a balance. This is beyond lifestyle management and actually does require quit a lot of thought.
When, inevitably, I over do it and suffer, CBT has offered 3) how I could have done that better so I dont suffer next time. Weve talked about how to recognise when Im being hard on myself and pushing beyond my limits (and why Im doing that). And having identified the signs, what I can then do to stop doing that.
For me its been very much about reigning in my determination and being more gentle with myself. Recognising how tough I am on myself in very subtle ways, has been a real eye-opener. Strain had become a way of life. The psychologist endlessly encourages flexible thinking and points out that there are times when internal or external demands will get in the way of the best laid plans. So Im learning to be a bit more chilled and mindfulness (which Ive done before) helps here.
I dont have a fear of activity and nobody has attempted to alleviate that fear. Both mindfulness and CBT play into developing an awareness of whats going on for me, both in a slightly different but complementary way and at many levels. And really its the mindfulness that I have found most useful. Challenging false illness beliefs has not reared its ugly head though I thought it would.
What really helps is that all this questioning and insight is developed in a very supportive atmosphere (either at Barts or by telephone) with a therapist who seems to be intent on helping rather than pushing dogma. I dont think it would work nearly so well if that genuine support wasnt a key part of it. As you say, hopefully Ive found a good therapist.
Hope that helps Bob.
Hi Valentjin
Thanks for pointing out the potential for trouble later. Actually the therapist warned of this and said we might be going through a honeymoon period. But she constantly encourages me to come back to her with any discontent so we can discuss it and find what works for me. So well see. Im keeping my eyes open while enjoying the journey so far.
With regard medication: Barts require a list of standard blood tests to be done by the GP prior to the initial consultation. PDW offered low dose amitriptyline to help with sleep (I dont have depression) but I used herbs which he was happy with. He also referred me to a rheumatologist. Consequently, Ive recently been diagnosed with Ehlers-Danlos hypermobility type (or type 3) which is known to be linked with fatigue and dysautonomia. Ill get some physio to balance up the stiff and extra bendy bits.
Im interested in your experience at your clinic Valentjin and what supplements/meds you were offered. Also is your clinic private, or publicly funded like the NHS?
Thanks for pointing out the potential for trouble later. Actually the therapist warned of this and said we might be going through a honeymoon period. But she constantly encourages me to come back to her with any discontent so we can discuss it and find what works for me. So well see. Im keeping my eyes open while enjoying the journey so far.
With regard medication: Barts require a list of standard blood tests to be done by the GP prior to the initial consultation. PDW offered low dose amitriptyline to help with sleep (I dont have depression) but I used herbs which he was happy with. He also referred me to a rheumatologist. Consequently, Ive recently been diagnosed with Ehlers-Danlos hypermobility type (or type 3) which is known to be linked with fatigue and dysautonomia. Ill get some physio to balance up the stiff and extra bendy bits.
Im interested in your experience at your clinic Valentjin and what supplements/meds you were offered. Also is your clinic private, or publicly funded like the NHS?
Bob
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Thank you very much for all of the info Astrocyte; it's very interesting.
Yes, CBT is a bit of a controversial subject around here.
I have to say that I am very pleasantly surprised by what you describe you are receiving at Barts.
I thought that they would use GET more than 'pacing', and the two are not compatible with each other.
And I thought that they would spend more time trying to talk you out of your (alleged) "illness beliefs".
I've practised mindfulness in the past, and it is definitely a helpful thing to do...
It's not controversial, and I would recommend it as a tool to help deal with stress, and to help gain insight into ourselves etc. I can't see it being in any way harmful for someone with ME to practise.
Yes, resting is the most important thing to help ME, in my opinion. I practise what I enjoy calling "intensive resting".
The 'flexibility' aspect of the training/therapy is very important... I think we need to have a very flexible approach to managing our illness... I think that's vital, and I'm glad to hear that your therapist understands that.
I wasn't suggesting that you had a fear of activity, but in the PACE Trial, CBT was based on the theory that ME is perpetuated by a maladaptive illness belief - specifically a fear of activity. But you seem to know about that already.
Thanks again Astrocyte,
It's very interesting to hear about your experiences,
Bob
Yes, CBT is a bit of a controversial subject around here.
I have to say that I am very pleasantly surprised by what you describe you are receiving at Barts.
I thought that they would use GET more than 'pacing', and the two are not compatible with each other.
And I thought that they would spend more time trying to talk you out of your (alleged) "illness beliefs".
I've practised mindfulness in the past, and it is definitely a helpful thing to do...
It's not controversial, and I would recommend it as a tool to help deal with stress, and to help gain insight into ourselves etc. I can't see it being in any way harmful for someone with ME to practise.
Yes, resting is the most important thing to help ME, in my opinion. I practise what I enjoy calling "intensive resting".
The 'flexibility' aspect of the training/therapy is very important... I think we need to have a very flexible approach to managing our illness... I think that's vital, and I'm glad to hear that your therapist understands that.
I wasn't suggesting that you had a fear of activity, but in the PACE Trial, CBT was based on the theory that ME is perpetuated by a maladaptive illness belief - specifically a fear of activity. But you seem to know about that already.
Thanks again Astrocyte,
It's very interesting to hear about your experiences,
Bob
To Wildcat, ukxmrv and Enid. Sorry you've had such crap experiences. No wonder your view is polar opposite to mine.
I've had ME for 4 years. I'm well aware of the politics and the latest research. Agreed, there's great analysis of the PACE trial on here which I followed avidly. good stuff. I cant square that with what I'm receiving at Barts though. PACE seems to be from another planet.
I've seen the GP training videos thanks to Dolphin. They're an insult to anyone's intelligence including the GPs they were aimed at. I did a bit of research and they appear to be from Kings in 2004. I think things have moved on since then. At least they have at Barts.
Mindfulness a soft option? Erm. No. Its a stand alone technique and you dont have to be ill to benefit from it. It has nothing to do with, as wild cat states, the psychosocial construction of ME. Its a way of doing life regardless of what is happening in your life. But I'll go no further as clearly your own views are not based on any sort of personal experience and you definitely need to do mindfulness to get it , or at least be open to understanding it outside of an ME context.
Lastly thankfully there has been no mention of depression. Barts screen out for primary depression. Around 40% of patients are referred elsewhere for various reasons but mostly for mental health conditions.
There's no doubt in my mind (or anyone I've encountered at Barts) that this is a physical illness. and no, I dont think I'm being conned though it might suit you to believe it. What is recognised is that its a deeply difficult illness to deal with. I think anybody struggling with a serious illness, cancer, heart-disease or anything else, would welcome what I'm getting while they wait for a cure. I'll take the support of a helpful therapist while also keeping my eyes open along the way. I'm just sorry your experiences have been so poor.
I've had ME for 4 years. I'm well aware of the politics and the latest research. Agreed, there's great analysis of the PACE trial on here which I followed avidly. good stuff. I cant square that with what I'm receiving at Barts though. PACE seems to be from another planet.
I've seen the GP training videos thanks to Dolphin. They're an insult to anyone's intelligence including the GPs they were aimed at. I did a bit of research and they appear to be from Kings in 2004. I think things have moved on since then. At least they have at Barts.
Mindfulness a soft option? Erm. No. Its a stand alone technique and you dont have to be ill to benefit from it. It has nothing to do with, as wild cat states, the psychosocial construction of ME. Its a way of doing life regardless of what is happening in your life. But I'll go no further as clearly your own views are not based on any sort of personal experience and you definitely need to do mindfulness to get it , or at least be open to understanding it outside of an ME context.
Lastly thankfully there has been no mention of depression. Barts screen out for primary depression. Around 40% of patients are referred elsewhere for various reasons but mostly for mental health conditions.
There's no doubt in my mind (or anyone I've encountered at Barts) that this is a physical illness. and no, I dont think I'm being conned though it might suit you to believe it. What is recognised is that its a deeply difficult illness to deal with. I think anybody struggling with a serious illness, cancer, heart-disease or anything else, would welcome what I'm getting while they wait for a cure. I'll take the support of a helpful therapist while also keeping my eyes open along the way. I'm just sorry your experiences have been so poor.
Hi Bob
Good to hear you've found mindfulness useful. I'm gobsmacked I'm getting it on the NHS .
Sorry to sound narky about fear of activity point. I realised you didnt mean me. difficult to get the tone right in writing sometimes.
I'm very interested in your 'intensive resting' though. What's all that about?
Gotta go, my computer is over heating! (And my brian).
Good to hear you've found mindfulness useful. I'm gobsmacked I'm getting it on the NHS .
Sorry to sound narky about fear of activity point. I realised you didnt mean me. difficult to get the tone right in writing sometimes.
I'm very interested in your 'intensive resting' though. What's all that about?
Gotta go, my computer is over heating! (And my brian).
That's the point Astroctye,
You are getting psychological support from Barts while you "wait for a cure" and at the same time the same clinic is being run by someone (co-run) who designed and produced PACE.
It's a pity that you could not find somewhere else to get your emotional support.
At the same time other patients all over the UK are trying experimental treatments, fighting NICE, fund raising, encouraging good research and fighting against BARTS and the PACE trial.
You may have a long wait for a cure.
You are getting psychological support from Barts while you "wait for a cure" and at the same time the same clinic is being run by someone (co-run) who designed and produced PACE.
It's a pity that you could not find somewhere else to get your emotional support.
At the same time other patients all over the UK are trying experimental treatments, fighting NICE, fund raising, encouraging good research and fighting against BARTS and the PACE trial.
You may have a long wait for a cure.
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Peter Denton White (PDW) is the chief Researcher of the CBT/GET 'PACE' Trial that was widely publicised (all over the world) in February this year. The reporting on it consisted of headlines such as "Got ME? Just exersise more, scientists say" (Independent).
Peter Denton White (Prof White) is a master of double speak.
Its not just the case that other Barts patients have had crap experiences. It is the case that there are a lot of ME deaths in Sussex (which sends patients to Barts or the local Barts controlled 'CFS' services) including Lynne Gilderdale and Sophia Mirza.
Most Kent and Sussex ME sufferers avoid the local services and those who have attended them are severely disappointed and demoralised by them. There are numerous hidden horrors that have gone on in the Barts referral areas. Most Sussex and Kent ME patients avoid the local 'CFS' services and those who have attended them have been seriously disappointed or demoralised by them.
The Barts Service is very good at surface 'encouragement'. But the fact remains that PDW (Prof Peter Denton White) is the kingpin of the psychosocial school policy in Britain.
Peter Denton White (Prof White) is a master of double speak.
Its not just the case that other Barts patients have had crap experiences. It is the case that there are a lot of ME deaths in Sussex (which sends patients to Barts or the local Barts controlled 'CFS' services) including Lynne Gilderdale and Sophia Mirza.
Most Kent and Sussex ME sufferers avoid the local services and those who have attended them are severely disappointed and demoralised by them. There are numerous hidden horrors that have gone on in the Barts referral areas. Most Sussex and Kent ME patients avoid the local 'CFS' services and those who have attended them have been seriously disappointed or demoralised by them.
The Barts Service is very good at surface 'encouragement'. But the fact remains that PDW (Prof Peter Denton White) is the kingpin of the psychosocial school policy in Britain.
Bob
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Oh that's easy to answer...
If in doubt, then I rest.
Then I rest some more... Then I rest some more... Then I continue resting.
I rest physically, but personally I don't need to rest mentally so much.
I started off by trying to 'pace', and in the end I decided that it was best to only do essential activities, and that I should rest at any other time. Unless I felt that I my symptoms were stable, or on an upward swing, in which case I would tentativly do some mild activities.
I used to relapse so easily, that I learned this the hard way.
If I'm feeling relatively stable, then I allow myself to do extra activities. But if I feel like I'm unstable, or likely to take a dive, then I rest.
I don't know if it's the best approach to take in the long-term, but I know that resting helps me, and that my illness is not as unstable as it used to be... I don't suffer from the hideous and soul-destroying massive and long-lasting relapses that I used to. But of course I can't tell if I just got lucky and I would have stabilised anyway, or whether the resting contributed to that. These days I always feel ill, and I get extra-fatigued when i exercise, but I haven't experienced a massive relapse for a while (touch wood.)
Bob
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But we are all "waiting for a cure", and I would never ask someone to ditch their emotional and practical support because I don't approve of who organises that support. And how many places offer free support for ME patients? It's not like we are overwhelmed with choices.
Irregardless of whether CFS is a psychological or physical disease, any emotional or improved coping skills can be of benefit to anyone. I'm not ruling out that there isn't a psychological element to my struggles as it is still a potential, the insane person believes in his own reality exclusively. I'm of the mind to try anything, if it helps, i'll continue - if it doesnt, i wont. CBT has helped somewhat but i think only because i had an empathetic practitioner who actually listened, regardless of whether she thought i was a loon or not. Thats what is needed, someone who will hear you out and be there when you are emotional in a supportive way.
Bob, there are other London hospitals that offer CBT to ME patients but aren't run by Peter White. Janice Main for example.
I'm not "waiting for a cure" I'm actively trying things, raising money, working on projects. I'm very grateful that I have tried some of the drugs I'm on. Peter White through NICE would want to stop that. If I need support I'll go elsewhere.
One could be at Barts and at the same time be actively collecting information and working to expose Barts. Other brave patients have.
I'm not "waiting for a cure" I'm actively trying things, raising money, working on projects. I'm very grateful that I have tried some of the drugs I'm on. Peter White through NICE would want to stop that. If I need support I'll go elsewhere.
One could be at Barts and at the same time be actively collecting information and working to expose Barts. Other brave patients have.
Esther12
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I was told that I could see her, but that they didn't expect I'd get much out of it. Does anyone here have any views about her?
justinreilly
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Glad you saw those videos about CBT for "CFS" they sell to doctors for something ridiculous like 100 pounds. you might remember they (i believe it is Trudie Chalder in the video) called their tactic of not telling the patient that ME is just a fear of exercise to gain the trust of the patient and then subtly get them to exercise, the "Trojan horse" tactic.
What you are doing so far sounds like the benign/helpful CBT that is used in other diseases, so great. Glad you are aware of that Trojan horse attack they are probably going to use on you. Keep us updated how it goes. If they don't end up using it, that would be great news indeed! Very glad you are getting some effective help so far!
To Bob
Hi Bob thanks for explaining intensive resting. Sounds like a good way to come back from a relapse or prevent a massive one. Really sorry to hear that you feel ill all the time though. (I was like that until I started sorting out some lurking tooth probs recently). And agreed, its sometimes quite difficult to know what's helping and whats not. Too much exercise is always a killer it seems.
Is there a place on this forum that discusses 'what works for me' type of thing? Did see something at some point but it seems to have disappeared.
What do you do with your brain when you're resting?
I'm experimenting with 'intensive pacin' for 2 or 3 hours on some mornings. (10 mins activity, 10 mins rest). Intriguingly, it does seem to give me a bit more energy after 12.30 when I can start being slightly less intense with my pacing.
Hi Bob thanks for explaining intensive resting. Sounds like a good way to come back from a relapse or prevent a massive one. Really sorry to hear that you feel ill all the time though. (I was like that until I started sorting out some lurking tooth probs recently). And agreed, its sometimes quite difficult to know what's helping and whats not. Too much exercise is always a killer it seems.
Is there a place on this forum that discusses 'what works for me' type of thing? Did see something at some point but it seems to have disappeared.
What do you do with your brain when you're resting?
I'm experimenting with 'intensive pacin' for 2 or 3 hours on some mornings. (10 mins activity, 10 mins rest). Intriguingly, it does seem to give me a bit more energy after 12.30 when I can start being slightly less intense with my pacing.
Thanks Justin
Really appreciate your open mindedness and also the warning re Trojan horse. So far, does seem benign but challenging (in a good way), but we'll see. I'll keep you posted on whats going on. And just to say also that CBT is only part of this integrated package. Its actually the mindfulness that I keep coming back as the most useful tool.
Glad you're finding your drugs helpful ukxmrv. I agree with you that its wrong for others to prevent individuals from trying stuff (as long as its not harmful). Thankfully I haven't come to any harm yet and nobody has suggested I avoid trying other stuff either.
Gavman makes a very good point in saying, 'If it works use it, if it doesn't, don't.'
I am exposing whats currently going on at Barts. But perhaps you prefer not to hear it.
No Astrocyte, you are reporting your own personal and early experience of Barts.
I'm in contact with other Barts patients through the London groups and in email contact with others. They tell a different story.
It's just your opinion based on a short time there. Everyone is going to have their own opinions and that's fine. You can't claim to speak for the others abused and upset by their experience there. You can't claim to speak for all the ME patients harmed by Peter White and his ideas. You cannot claim to speak for the survivors of the PACE trial who have written about it and it's a public record now.
You speak for yourself. That's fine. Maybe you are the one who doesn't like what others have to say though who don't feel as you do and who have had a different experience.
I'm in contact with other Barts patients through the London groups and in email contact with others. They tell a different story.
It's just your opinion based on a short time there. Everyone is going to have their own opinions and that's fine. You can't claim to speak for the others abused and upset by their experience there. You can't claim to speak for all the ME patients harmed by Peter White and his ideas. You cannot claim to speak for the survivors of the PACE trial who have written about it and it's a public record now.
You speak for yourself. That's fine. Maybe you are the one who doesn't like what others have to say though who don't feel as you do and who have had a different experience.