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Advice on Pacing - What should it look like?

Discussion in 'Action Alerts and Advocacy' started by CBS, Mar 5, 2010.

  1. CBS

    CBS Senior Member

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    Alright, the thread on the 'Art of Pacing' article published and then taken off line by the CAA has generated a lot of discussion
    CAA recommends to me questionable article on pacing March 2010.

    I feel that not coming up with some constructive guidelines surrounding this important but sensitive topic would be a missed opportunity.

    Lets make something positive out of, what for many, was an emotional (and perhaps for some, 'crash' provoking) episode.

    I'd be happy to start a document which we could work from/comment upon. I would also invite anyone with the energy to cull through the original thread for key points and concerns.

    Here are the general categories that I have started with:

    • Pros
    • Cons
    • Pitfalls
    • Essential Information
    • Is there a place for the Canadian Consensus Definition
    • And if so, what is that place
    • And why isn’t it being used by more advocacy groups
    • Necessary Disclaimers (appropriate presentation of disclaimers)


    I don't need the final 'product' of this thread to follow this outline. It is intended only as a starting point and perhaps to stimulate some discussion.
  2. gracenote

    gracenote All shall be well . . .

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    Thanks CBS. Now get some rest!
  3. Hope123

    Hope123 Senior Member

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    I'd suggest people look at alternate sites to get an idea of what other are saying. OFFER in Utah and IACFS/ME come to mind.
  4. Andrew

    Andrew Senior Member

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  5. CBS

    CBS Senior Member

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    OK, but a few last thoughts:

    • Inclusion of reference to the work such as that of Drs. Alan and Kathy Light showing abnormal response to physical exertion - should studies such as these be included with all articles commenting on pacing?
    • Explicit recognition of heterogeneous nature of CFS population and the need to tailor (perhaps even stage) pacing according to present stage and overall stage of illness.
    • Broaden topic from pacing to include all areas of emotional/mental health and hygiene?
  6. CBS

    CBS Senior Member

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    Standards for Tx Recommendations

    More thoughts:

    Are we going for "guidelines" or "standards" here?

    To me, treatment guidelines (recommendation) would imply standards to which they ought to adhere as well as a degree of broad experience which I personally would not claim to posses but collectively we may be in a very good position should we head down that road.

    For the time being, I would suggest we focus on standards to which we would be willing to hold ourselves.

    Along the line of standards, I would suggest that whenever possible, recommendations ought to be based upon peer reviewed literature and that when this is not possible, it should be clearly stated that recommendations are based upon personal experience, theory, or opinion.

    As I am writing this I keep thinking that these are the same standards which are expected of all physiological research ('Opinion Papers' are always clearly labelled as such).
  7. V99

    V99 *****

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    The first thing I would say to anyone, is that it is not easy to pace.

    The disease will not always allow someone to do this, and even if it does, results tend to take a long time to be appear.
    Personally, when I was sicker the longer it would take, and less sick, the less time it would take.

    I suspect it depends on what damage was done initially. The point being, that for some, pacing will be impossible, i.e. Lynn Gilderdale.

    To start with, I looked for my baseline. When are my symptoms at their lowest. I then test how they are exacerbated, i.e. Talking, bright lights, whatever it is. Of course, there is no way to measure these, so you have to use your instincts. You know your body. Every so often test your boundries. I don't mean go for a run, or take up another job!! Just do a bit more of the little things that increase the symptoms. Don't try this too often, it may be to much for your body. Again go on instict.

    Finally, try to eat well, sleep well, keep your body temperature even, and stay away from problem people.



    I hope this may help some people, I hope it doesn't come across in the wrong way. You are not ill or still ill because of your beliefs. Tell me what you think? Does this sound like it's going in the right direction?
  8. Hope123

    Hope123 Senior Member

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    These articles might be of interest as it's study about trying to increase activity in CFS subjects and the limits reached.

    "Unlike our initial interpretation
    that CFS subjects could maintain an activity increase over
    four weeks, it is now apparent that the CFS subjects were
    only able to sustain the prescribed increase in daily activity
    for 410 days."

    At least the researchers were honest here.

    Attached Files:

  9. V99

    V99 *****

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    If you are looking for studies, don't bother with the PACE trail. They claim to have a pacing therapy called APT. It has no relationship to what patients describe as pacing, as mentioned in magical medicine by Prof Hooper
  10. Angela Kennedy

    Angela Kennedy *****

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    'Pacing' in all other aspects of other lives, healthy people, people with uncontested illness, etc. is considered an autonomous flexible strategy basically not to overdo things.

    It should be seen exactly the same in ME or CFS. That might mean major life changes (like moving to a house without stairs) or getting help and support, or using a wheelchair, as well as managing one's own activities to take account of limitations.

    Yet, as we have seen, it becomes instead this disciplined regime that needs to be imposed or exhorted externally upon the person in so many deliberations. The 'APT' notion in the PACE trial is a prime example. Making people keep a diary of their activity is another! (That takes up precious energy in itself)

    Michel Foucault (French social science theorist) may well have had a field day discussing how ME/CFS sufferers are treated had he lived to see it. His book Discipline and Punish holds so many relevances to this subject in particular: 'docile bodies', the 'surveillance', the regimes.

    The main recurring theme in all these pronouncements by doctors etc. is the removal of autonomy from the patient. We need to be aware of that.
  11. V99

    V99 *****

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    Angela, you put that much better than I could.

    My mum initially wanted me to keep a diary, she wanted to shed more light on what was happening. I think I manged a few days. It amuses me, that for the PACE trial, they want you to keep a diary, but according to their logic, focusing on symptoms makes you sicker.
  12. Jenny

    Jenny Senior Member

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    The Stanford guidelines say that crashes may have a cumulative effect and compromise a complete recovery. But is there any hard evidence for this? They say it's just a hypothesis. And what is the evidence that the CNS cells may never recover?

    One of the things I find extremely stressful about this illness is the possibility that doing certain things will be permanently damaging. Some of us have to do things, especially when we have family to look after. And I've got to try to go to my mum's memorial service in 10 days time, but could that set me back months, years or for ever?

    Perhaps we could discuss this in a new thread. It's clear that we crash when we overdo it, but just how dangerous is over-exertion?

    Jenny
  13. Orla

    Orla Senior Member

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    There is a discussion here about a pacing booklet http://forums.aboutmecfs.org/showthread.php?3522-Pacing-booklet

    V99 like you said, you have to trust your own instincts.

    And Angela you make a good point. Unfortunately "Pacing" is being used to some extent, I think, in the UK at least, as a stick to beat patients with, or something to be almost imposed from outside rather than something to increase a patients self-efficacy.

    It is impossible to pace corretly all of the time, as we don't have total control over our lives, people are often not getting the support they need to have to overdo it some of the time, and also critically I think is the delayed reaction. It is not always obvious that one is overdoing it at the time, or how much one is overdoing it at the time, because often the bad post-exertional problems only happen a day or so later. This makes life more complicated, both in terms of self-evaluating what one can do, but also in terms of explaining limitations to others and getting support from others. I find people who have seen me on a bad day, or even spoken to me on the phone, at times when I was bad, are much easier to be around, deal with and get support from than others.

    Orla
  14. CBS

    CBS Senior Member

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    Angela,

    The Canadian Dx criteria discusses "Self-Powered Exercise" and goes to great lengths in describing the need to let the patient take the lead (http://www.cfids-cab.org/MESA/me_overview.pdf - page 18).

    Jenny,

    Dr. Montoya is an infectious disease doctor whose CFS patients have a lot of co-infections. In general, I also think that his patients have had CFS longer than many. As an infectious disease doc he's quite familiar with the neuro toxic impact of infection and he frequently sees direct evidence of both autonomic and CNS neural damage in his patients. It is that experience with hundreds of CFIDS/ME patients - (his preferred Dx term) that leads to his position on the potential damage of "crashing.".
  15. Jenny

    Jenny Senior Member

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    Thanks CBS - helpful to know this is based on Dr Montoya's long experience.

    But worrying.

    Jenny
  16. starryeyes

    starryeyes Senior Member

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    IMO

    Well I like this from the Canadian Dx:
    That's what the CAA should use.

    In my experience, it's best to let your body determine how much you can do. My CFS went into a 14 year remission after the first 8 months that I became bedridden with it and I just followed my instincts naturally at that time. I stayed in bed when I felt like I had to and I was able to exercise a bit more and more as time went on. I had to do a lot of laying around for the next 14 years but I was also able to work full time and live a full life.

    I relapsed after the 14 year remission when my hormones started acting up due to perimenopause and since then I've been bedridden and in intractable pain 95% of the time. I do what I can when I can. I can no longer push through my symptoms or I suffer severe consequences and end up needing a wheelchair for up to 4 days in a row. Every now and then I can still ride my bike for an hour or so and I pay for it but I don't end up in a wheelchair now because I can tell when I'm strong enough to handle it and when I'm not. I also have to ride on flat ground now; I have to ride slowly and not let my heart rate go high and I have to take breaks during the ride and sit on benches and eat protein bars.

    I used to be able to push through my symptoms without consequences. There are various stages of illness with CFS and CFS is a relapsing/remitting illness so we can't follow any regular schedule. Many people are never well enough to do any exercise and that's just the reality of the situation and this needs to be acknowledged.

    I don't know if we have to worry about permanent damage or not. This might be different for each person. I think we just have to do what we can when we can.
  17. shrewsbury

    shrewsbury member

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    I found :

    Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome
    Ellen M. Goudsmit1 and Sandra Howes2
    This has a lot of the early research referrenced, and many good parts. I find it hard to read.
    ------------------------------------------------------------

    . The Pacific Fatigue Lab - Staci Stevens - did a study measuring post-exertional malaise in some way. I think Cort knows where that is. I'll keep looking, but if anyone knows, please post it.
    ___________________________________________________

    Canberra Fibromyalgia and CFS pages
    HOME > Library > Pacing v Graded Exercise

    Pacing v Graded Exercise

    March 2002

    "Whilst no one would question that physical exercise improves quality of life both in health and diseases in general, recommending graded exercise as a specific prescription for complex disorders like fibromyalgia and CFS is a gross oversimplication of science." - A Chaudhuri

    if: This also has some good info - although I find the reference section a bit of a challenge to navigate
  18. jspotila

    jspotila Senior Member

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    What is the goal or proposed audience for the document? Compiling info for fellow patients might look different from compiling a set of guidelines based on published research. Both would be useful documents. There is a lot of good material out there, and maybe it's just a case of pulling it all together in a different way. Just a thought!
  19. gracenote

    gracenote All shall be well . . .

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    I think you're making a useful distinction that would help clarify the goal of this thread. Both look important to me.

    I think ultimately we want to end up with something educational for doctors and healthcare practitioners, and something user friendly for patients. But as I write this, I don't think that necessarily means two separate documents.
  20. susan

    susan Senior Member

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