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Professor Julia Newton: Research Presentation: Transcript and Video: November 2012

Discussion in 'General ME/CFS News' started by Firestormm, Jan 15, 2013.

  1. Esther12

    Esther12 Senior Member

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    [quote="Firestormm, post: 365511, member: 37]

    Exercise is something that I can only currently engage with through means of a walk outside - but even that I would not class as the kind of exercise associated with GET. Exercise to me in this respect always evokes images of specific routines involving aerobic exertion.[/quote]

    I think of walking as the standard GET exercise. I was devoting all my energy to walking about the place for a while... only a sensible thing to do if it was going to lead to recovery (which is what I'd been told). I agree with bio that I'd have rather put the energy into play (or even reading the CFS papers which justified manipulating patients in this way).
     
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  2. Firestormm

    Firestormm Guest

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    See. I thought exercise had to be a specific determination to raise anerobic thresholds or something. So 'walking' at a gentle pace would not be exercise - but walking briskly would.

    It's how I, in my mind, interpret the word I guess and then how it is applied in papers. I mean it can mean anything really can't it?

    What's the difference then between exertion and exercise? I'm confused. Oh btw you will like this outlook Esther:

    Graded as in graded activity - and graded exercise - means recognising your tolerance to the activity, and then planning accordingly to take this better into account. Not avoiding it necessarily, but trying to achieve what you need to without making your symptoms worse and allowing yourself practice and time to become more productive and increase your energy levels. Sound like pacing to you?

    See. Terminology and interpretation. Oh and that came from my ME Course notes. I was thinking of running a thread about my current ME Management Group. I wanted to see what was offered by my local NHS provider. Gain a first-hand experience and try - again - to take something away that might help me accept this condition and learn to better live with it.

    Yeah I know. I don't want to get into all of that. It's just that I seem to encounter so much personal confusion over these words and terms and the individual interpretation of them - drives me nuts :) Just gotta do what you can for yourself :)
     
  3. Bob

    Bob

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    Firestormm, 'exercise', 'activity', and 'exertion' can sometimes be used interchangeably. For example, all three apply to 'running' or 'swimming'.

    The word 'exertion' would apply to any activity in which you had to 'exert' any effort, so it does apply to energetic pursuits that we think of as 'exercise', but it can also apply to far less demanding activities. For example, just to lift my arm, or to nod my head, requires exertion.

    'Exercise' usually applies to physical routines that are used to increase fitness and health.
    The dictionary defines exercise as: "Activity requiring physical effort, carried out esp. to sustain or improve health and fitness."
    So it's a flexible word, and could be used to describe various activities that help improve health.
    It would describe different activities depending on the context, and the state of your health or level of fitness.
    For example, physiotherapy can involve totally different exercises than what a top-level athlete would consider 'exercise' to mean.

    In relation to GET, the word 'exercise' is unhelpful because it is suggestive of repetitive energetic athletic pursuits, such as running or swimming. But GET should be a program that aims to gently increase levels of activity, if/when safe to do so. Perhaps GET has caused so many problems for ME/CFS patients partly because doctors assume that GET simply involves 'exercise' routines with steady increases in intensity. (Both assumptions are incorrect.)

    I don't support the NICE guidelines but with regards to GET, they give an example of the sort of 'activity' or 'exercise' that can be focused on in GET programs:

    1.6.2.14 GET should be based on the person’s current level of activities
    (such as physical activity, daily routines, sleep patterns and frequency of
    setbacks/relapses) and emotional factors, vocational or educational factors and
    individual goals (details of these may be obtained from an activity diary). The
    programme should also include sleep and relaxation strategies (see
    recommendations 1.4.2.1–6).
    1.6.2.15 When planning GET, the healthcare professional should:
    • Undertake an activity analysis to ensure that the person with CFS/ME is
    not in a ‘boom and bust’ cycle before they increase the time spent in exercise.
    • Discuss with the person the ultimate goals that are important and relevant
    to them. This might be, for example, a twice-daily short walk to the shops, a
    return to a previous active hobby such as cycling or gardening, or, for people with
    severe CFS/ME, sitting up in bed to eat a meal.
    • Recognise that it can take weeks, months or even years to achieve goals,
    and ensure that this is taken into account in the therapy structure (for example,
    by setting short- and medium-term goals).
    • Explain symptoms and the benefits of exercise in a physiological context. Full guidelines August 2007
    NCC-PC
    Page 51 of 317
    1.6.2.16 When starting GET, the healthcare professional should:
    • Assess the person’s current daily activities to determine their baseline.
    • Agree with them a level of additional low-intensity exercise that is
    sustainable, independent of daily fluctuations in symptoms, and does not lead to
    ‘boom and bust’ cycles. This may be sitting up in bed or brushing hair, for
    example, for people with severe CFS/ME, or gentle stretches or a slow walk.

    http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf
     
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  4. Firestormm

    Firestormm Guest

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    Cheers Bob. My MIND [BOOM] I sit in these meeting sometimes or read threads and papers and I'm always thinking 'how are they - how am I - interpreting this? Are we all talking about the same thing here?' I guess it's all about context or context helps. And being reminded... constantly by mates :) :)
     
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  5. Bob

    Bob

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    You're welcome, Firestormm. :)

    Don't worry, you're not alone. The recent paper published by Action for ME (see here), demonstrated that the health service often doesn't understand how GET should be applied to CFS/ME patients.

    The paper describes how patients have had really bad experiences with GET, partly because the therapists often don't understand the nature of the illness, or they don't adhere to NICE guidelines, or they don't understand how GET should be sensitively applied in a specific way to this patient group by specially trained therapists.

    I don't support GET at all, myself, for various reasons, including the fact that it doesn't have a meaningful therapeutic effect.
    But the AfME paper suggests that some patients appreciate the goal-setting involved in GET.
    So I think perhaps that 'goal-oriented pacing' might be a more helpful approach than GET.
    But as you mentioned above, and as we've discussed elsewhere, GET has been quietly transformed into goal-oriented pacing anyway!
     
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  6. Sasha

    Sasha Fine, thank you

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    Others may feel differently but I refused to set goals when an NHS physiotherapist asked me to do this in relation to my ME. In my mind, a goal is something that you can achieve by effort and persistence; it's under your control. Otherwise it's a dream, not a goal. You can get that maths 'O' level if you try hard enough, even if it takes you fifty years; effort and persistence will improve your ability. But you can't control whether you win the lottery unless you have the means to buy all the tickets; that's a dream. No amount of effort and persistence can guarantee a result with ME. I thought her attempt to get me to set a goal was cruel (not deliberately, of course).
     
  7. Bob

    Bob

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    I totally agree. In my opinion (and I feel strongly about it), encouraging goal-setting specifically as a therapeutic approach for ME is cruel, misinformed, misguided, patronising, staggeringly ignorant, unhelpful, time-wasting and hostile. It's proven not to reduce disability in any meaningful sense, and it can cause long-term harm.

    Edit: These are my own opinions, based on personal experience, observation and scientific evidence.
    But I totally accept that some/many patients might find CBT/GET very helpful.
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    All except the bit about increasing energy levels. To me, pacing is living within your capabilities and thus avoiding exacerbation (PEM).

    I know of no evidence that exercise of any kind can increase energy levels in ME, as it does not address the fundamental biochemical abnormality. I believe that other things can, but it may take a long time.

    I'll let you know when I have cured myself! :)
     
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  9. Firestormm

    Firestormm Guest

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    OK. I feel I must simply play 'devils advocate' here my friends :rofl: The goal-setting that is part of this Group work I am participating in - is viz: washing-up; cleaning the bathroom; going for a walk once a day outside etc. all according to the patient own abilities.

    We had quite a little debate about this ourselves with the OT and Clinical Psychologist. Again its terminology and interpretation. One lady said her ulitmate goal was to get back to sustainable employment - same as my own. But these were long-term goals (define 'long-term'? :)). So yeah, dreams in a way - but perhaps achievable nonetheless.

    So goals in respect to, say, activity management or in management of my ME would be realistic and flexible. (Much of this is common sense and yeah I am there already, but it helped clarify my thinking). So we might set-out what tasks each day/week absolutely need doing.

    Begin from there - yeah. And then look at whether or not 'we' actually need to do them ourselves or can 'delegate'. I had to laugh at that - was thinking of my poor Mum... Anyway, it goes on and we cover all this goal-setting stuff in another session.

    My 'concern' was that I do not regard the 'menial' tasks as achievements. Therefore I do not associate them with 'goals' A goal for me would be something that when I attain it I feel a sense of satisfaction; but anyway that's not what they are talking about and I need to change my ways - clearly! :)
     
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  10. Sasha

    Sasha Fine, thank you

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    I'm a bit confused - were the 'goals' you were being asked to set things that you could already do?

    I was asked to name as a 'goal' something I'd like to do but couldn't do now. That's what I thought was cruel - to try to focus me on something I couldn't achieve and give me no effective tools for getting there, just the ones they want to believe work.
     
  11. Sasha

    Sasha Fine, thank you

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    By the way, Jennie has a post that's relevant to this, in a way, about the energy demands of activities of daily living and the sort of measured anaerobic threshold limitations that we hit when attempting them:

    http://www.occupycfs.com/2013/06/21/meeting-mets/
     
  12. Firestormm

    Firestormm Guest

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    Yeah it is but by pacing you have more energy to last longer... So you are I suppose conserving energy to do more. I do the washing up in parts, I do the cutting up of food - and the preparation - sitting on the sofa (don't have a chair or anything in the kitchen yet) - and again I do my cooking in parts; this means I can complete the task without any undue effects (most of the time). In between I am conserving energy by resting.

    If you want biological evidence for this I doubt there will ever be any in black and white - but if the mitochondria are involved then maybe they are more like dynamos. You need to do a little of something - some physical activity - to recharge them. Even if they don't charge fully - or can be depleted more readily - you have to try and keep them topped up.

    For people with ME or another condition who find themselves unable to 'exercise' by let's say walking - even around the house - then these dynamo's don't get any charge. Isn't this why things like atrophy occur? I think it is although I don't recall seeing a paper linking atrophy to ME patients? Could be wrong about that.

    Anyway, I look at the 'battery' as a 'dynamo'. That analogy works for me. Might be wrong but it's how I look at it :)
     
  13. Firestormm

    Firestormm Guest

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    In part, Sash, yeah. It was explained by examples of activities that are commonly considered goals by other people with ME from their experience. In the debate we talked about the definition - how it is interpreted differently by different people. But for graded activity and management in general - the weekly/daily 'goal setting' are achievable realistic targets.

    No it definitely wasn't intended to be a cruel target, Sash. No way. I would have been all over them for that and these are nice people who I know. They do understand - really. I might not agree with everything, exactly how they say it - and boy do I tell them - but no, no unrealistic goal-setting.

    They don't want to quash ambition but, ok. Here's a real example that happened to me. Right. The ME Association advertised for a paid (£9 per hour) part-time assistant working from home. You might have seen it? I think you did.

    So I thought - 'Yeah. I'll have some of that!' Now, Mel, my OT who visits me at home - she and I talked about it and she eventually 'persuaded' me that it wasn't realistic. Not yet. But it was a reasonable long-term ambition. More realistic than me aiming to head straight into full-time work again that involved travel and wasn't from home.

    On the other hand, well, let's just say that I've taken on a bit more voluntary stuff since then. And that's more realistic. A means I hope to an end. AND it gives me purpose. I die without that - it's what made being unable to do anything so bloody hard really :)

    You know, Mel is doing her Masters and I sent her and the other one ;) Pheby's 2009 paper on Severe ME. Just cause it was relevant to what we'd been discussing - namely me 'enquiring' about EVIDENCE Lol :)

    Guess what both of them said by return email? 'Great paper. We both read it!' and Mel had already got it as a reference in her Masters!

    I wasn't going to bang on about these people - but I have lol 'The other one' actually was at IiME and was the other day extolling the virtues of research advances.... A CLINICAL PSYCHOLOGIST I couldn't make it up. Rituximab and everything... :)
     
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  14. Sasha

    Sasha Fine, thank you

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    That's where I'm a bit confused - all targets that you can already do or targets that are slightly beyond what you can do but that they or you think that you have a chance of reaching? If it's the latter, that's where I think there's potentially a problem because many of us are already at maximum capacity just living.

    The physio who came to visit me seemed lovely - she certainly didn't mean to be cruel and I considered her training to be at fault, not her.

    Good that your OT talked you down from the MEA job, though! And that they're up on research. I'm not surprised by a clinical psychologist knowing their stuff - I think the whole psych profession has got a bad name but by no means everyone in it is bad.
     
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  15. Esther12

    Esther12 Senior Member

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    Thanks Fire, but I'm not really a big fan (were you joking saying that I'd like it? I really didn't know, and I love not knowing!)

    Is there any good evidence that people with CFS are worse at "recognising your tolerance to the activity, and then planning accordingly to take this better into account" than any other group (if they have not first been given bad information by quacks?). Some people with CFS might find this sort of thing helpful, but so might some psychiatrists. If there's no evidence that this area is a particular problem for CFS patients, then why is money intended to help those with CFS being given to those who want to routinely medicalise this area of their lives?

    Also, allowing GET to be re-branded in this way gets in the way of my 'goals'. I either want to fully recover in the way I was reassured I would, and told GET would lead to, or I want the quacks who promoted the management of the minds of patients (without informed consent) by promoting positive cognitions about recovery to face serious disciplinary action. Watching the quacks who built their careers on this stuff gradually slink away to a more reasonable position, without apologising for the harm that they have done to patients, but instead pretending patient anger is entirely a result of mindless anti-psychiatry or a failure to understand how mind and body interact, is not something which cheers me.

    The more reasonable approaches to CFS 'management' seem just like what people naturally do anyway, once they're freed of psychosocial quackery.
     
  16. Firestormm

    Firestormm Guest

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    OK. I have things I need to do each week, yeah? But at the moment I don't do them in a realistic, sustainable way. I tend to do them 'badly' in ways that perhaps make my symptoms worse or in ways that don't do me any good.

    So these tasks are 'realistic' in that they should be things I can achieve - but that I need help in understanding how I might do them more effectively without them hurting unnecessarily...

    Does that make sense? When I come to say to them what things I need to do in an 'average' week - it may also be that the things on my list are not really things that a) I need really do - so I could be wasting energy; or b) are actually realistic but I am managing poorly, or c) are things I should be getting someone else's help with.

    I mean I think overall I have learned a lot about the art of self-management; but I am betting I am proved wrong. If I am honest I know there are things that I approach badly. I get easily distracted - like on the forum I am all over the place lol I don't have a set time for 'forum-fun'. I pretend that this is my 'rest-time'. But it ends up being as demanding of my 'energy' as working - I mean it does doesn't it! :)

    I think we are all the same in that respect. Typing. Thinking. Checking. Trying to make sense. etc. Flipping challenging isn't it? :) :)

    Gotta go. Really need to this time x
     
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  17. alex3619

    alex3619 Senior Member

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    I am starting to think we are misconstruing the activity of bicarbonate. It has an alkalizing effect on the gut, but it is NOT an alkalizing agent in the blood. Its a buffering agent.

    http://en.wikipedia.org/wiki/Bicarbonate_buffering_system

    How is this different? We have a problem with both too much acidity and too much alkalinity, at different times. Bicarbonate can balance both of these in the blood. The issue though is our homeostatic mechanisms will not permit much of a bicarbonate buildup. I have not investigated this deeply though, so there could be research surprises out there on this topic.
     
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  18. Sasha

    Sasha Fine, thank you

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    Thanks, Firestormm - now I get it! :)

    Yes, have a lie down now! :sleep:
     
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Agreed. It avoids 'boom and bust'.

    ...

    This paper:

    http://www.ncbi.nlm.nih.gov/pubmed/9527150

    says that muscle fibre atrophy (wasting) was only found in 10.4% of cases.

    This one:

    http://www.ncbi.nlm.nih.gov/pubmed/7832572

    found that muscle fibre atrophy was 'within the reference range' (normal).

    A couple of studies into post-viral fatigue syndrome did find muscle atrophy.

    I am pretty sure that it is wrong - sorry.

    But re your other post, there is no need to abandon hope. I think we all need that. It's just that expecting exercise to improve ME is IMO a false hope, and different approaches are needed.
     
  20. Firestormm

    Firestormm Guest

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    Thanks for the papers :)

    Re: this last bit. You are looking at it wrong. Exercise will not remove my ME. Nobody is saying that it will. I have it. Period. Something else will be needed other than exercise alone. We are talking about lifestyle - the whole enchilada. Living. Me as a person who happens to have ME. Learning how to LIVE WITH ME. Where I have repeatedly failed.

    My dynamo analogy is correct. We all need to 'exercise' to keep things working; and I'm pretty sure cell mitochondria need it also* If exercise = exertion then I am seeking the offered help to learn how I might better manage what I am able to do - and how I can cope with 'relapses' in health as well as improvements. As a consequence of learning these techniques - those that have yet to be taught - I might in time be able to achieve more.

    What I can achieve - the extent to which I can achieve it and how quickly and how well - will depend on the condition i.e. it's severity on a day to day basis. But through learning how to manage my life better I can perhaps seek to encompass these fluctuations. And I need - as an individual - to keep revisiting these techniques because I have a crap memory and basically need the support.

    I have not fully been able to accept my limitations. No matter how hard I try I cannot stop fighting and pushing to do more; doing more - and then screwing up as a result. I want to 'exercise' I know I can I am not as limited as I once was - but my activities still need careful management. Not micro-management - been there got obsessed by that: but I hope I can learn from these people and from those other people like me on the course.

    Edit: My use here may not be scientifically correct MeSci, but this is what I was thinking of really I think:

    I guess - probably incorrectly and I'm happy to be corrected of course - that if unable to gain sufficient oxygen because of disability, the supply can be supplemented in whole or in part by administration of oxygen itself direct. I believe some find Oxygen chambers and suchlike useful in this regard.

    Generally though, I think it is pretty established that exercise is a very necessary part of the body's overall needs as is oxygen.

    I kind of like the dynamo analogy anyway :)

    Have edited some of my post above to improve on understanding I hope.
     

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