The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Sep 27, 2017.

  1. Large Donner

    Large Donner Senior Member

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    He also needs to define pacing.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    'Exercise is a powerful intervention. Get the dose right, it can help some people. Get it wrong, it can cause harm. Which is why it is graded'

    So apparently it does cause harm. But how does he know if no studies have shown that? Anyhow does he know what at the right dose is if nobody has studied 'dose' of exercise, as they should have done. This seems like condescending blather I am afraid. If Dr Hammond wants to be taken seriously by PWME I think he needs to be a bit more evidence based.
     
  3. Large Donner

    Large Donner Senior Member

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    She does not thinks its a biological illness she stated quite clearly this week on radio 4 that she doesn't think there should be a distinction between biological and psychological. When she says its biological or "a very physical illness", she is clearly implying that just the symptoms are physical but the cause is psycho social.

    Actually its psychosocial doctors who make it worse.
     
  4. A.B.

    A.B. Senior Member

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    Have you seen this study? It's unbelievable. I'm getting surreal feelings again.

    A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change.
    get-fail.jpg


    With 25 and 24 in the exercise and control groups this is a high number. I wonder about the imputation.

    Alternative explanation: exercise harms patients.

    Link to full paper https://sci-hub.cc/https://doi.org/10.1177/1359105305049774
     
    Last edited: Sep 30, 2017
  5. Countrygirl

    Countrygirl Senior Member

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    8 500!!
     
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  6. Barry53

    Barry53 Senior Member

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    So is a loaded gun.
     
  7. Countrygirl

    Countrygirl Senior Member

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  8. slysaint

    slysaint Senior Member

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    From his interview with EC last year:
    Esther Crawley said
    "
    So chronic fatigue syndrome is defined or is diagnosed in children or in adults who have fatigue that stops them doing things, so it has to be disabling, and it has to last a long time. So in children it has to last at least 3 months, in adults 4 months. And then there’s a range of other symptoms that are very common in the condition - So one of the one’s that’s most helpful for diagnosis is something called Post Exertional Malaise; so what that means is that after you do something, you feel much worse afterwards – and that’s very helpful in differentiating and helping us know (for example) that it’s not depression.
    [12.14 PH] So some children who do physical activity can be wiped out for several days afterwards, sometimes longer, they can be ‘crashing’.
    [12:20 EC] That’s right. Other problems can be headaches; memory and concentration problems are almost universal in this condition; there’s a particular sleep pattern, where for both adults and children, which is that [12.32] it’s very difficult to get off to sleep, and very very difficult to wake up in the morning; teenagers with this condition always sleep too much. So that’s the diagnosis."

    upload_2017-10-1_14-10-29.jpeg Simples.
     
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  9. Barry53

    Barry53 Senior Member

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    This is probably why Pacing works far and away the best for PwME, until medical science comes up with anything better. Pacing is about patients learning to listen to their own bodies and illness, and applying their own "process control" to how much they can and cannot do, should and should not do.

    One of the biggest difficulties with any form of process control is dead time, a pure time delay between cause and any effect, with no measurable indications of change available during that dead time. Yet when that effect appears at the other end of that delay it can be dramatic. Because the control system has no information to go on during that time delay, it cannot take any corrective actions.

    All sorts of processes can have dead time delays, maybe having transit times on conveyor belts, or dosing a liquid and only able to measure the effects after it has travelled some distance down a pipe, etc.

    I'm not a process control guru (the math gets very heavy and way beyond my abilities), but I've worked in this area a lot, developing PID controllers in the past, so I have some insights. In the above scenario there are three broad strategies I'm aware of for dealing with such a control problem, though there may be others I'm unaware of:-
    1. Still use closed loop control, but slow everything down, so that the controller does not overreact too quickly. If it does then the system will go unstable and oscillate, as the controller over-corrects too quickly. Akin to a car driver hitting a patch of ice, and flapping the steering wheel from one lock to the other, too soon and too much. The car ends up going side to side, and if not brought rapidly back under control, crashes. A problem with this approach is you may have to slow the overall system response a great deal, in order for the dead time to become a relatively minor component in the overall loop response time.

    2. Employ open loop control. If feasible (it involves understanding the system characteristics well enough to preempt what what the delayed effect will be of a particular cause), this allows some corrective action to be taken as soon as the cause is observed, without waiting for it to trudge its way through the delay in the closed loop. If the system is sufficiently well understood, this is a very good way to go, because it helps avoid the control problems before they get a chance to set in. If.

    3. A combination of '1' and '2'. If you still have closed loop control overall, then it's not quite so important to fully understand your system for the open loop control component; the closed loop control can "mop up" what the open loop part didn't quite get right. But the combined control strategies can give you better overall control.
    I suspect that what we call Pacing, is where PwME instinctively learn to do something akin to '3' above. They get to know there bodies and their illness well enough, and become adept at applying a degree of open loop control, anticipating the potentially damaging effects of excessive exercise up front. Without this, people end up "over dosing" on exercise, and by the time the effect materialises at the other end of the time delay (PEM in this case) it is way too late to correct for it. PwME will likely still end up with PEM, but much attenuated compared to if they had not taken any look-ahead action.

    Pacing must also include aspects of closed loop control as well, because the preemptive bit can never get things completely right, so there is inevitably going to be some control adjustment once the delayed effects of any exercise kicks in.

    The point is that Pacing works best IMHO, because people learn to recognise and understand, far better than anyone else can, the overall control algorithm that works best for them, based on the signals their bodies give are giving them, and especially the particular time delays their bodies are subject to. I'm not saying PwME all learn to become control engineers, obviously not. But I think PwME instinctively learn how to adapt and apply such a strategy.

    I suspect if might be very insightful for a Control Engineer (fully qualified and very good industrial track record) to team up with some medically qualified scientist(s), and just explore Pacing in this light, because both sides might be pleasantly surprised at the insights they both discovered.
     
    Last edited: Oct 1, 2017
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  10. Quilp

    Quilp Senior Member

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    We are all different. I am different, from one hour to the next, from one minute to the next, No matter what I do I cannot control this illness.

    I do all that I can, and despite this and for no apparent reason the illness can and will get worse. If I get better, I always try to assign, with forensic zeal, a reason why. I run with an idea, extrapolating it to infinity, landing only in despair.

    At times, without any seeming cause and effect I nosedive.
    At times I feel a little better, only for a few hours but just enough to keep hope alive.

    In darkness I have never known I fight an enemy, hobbling tentatively along a cliff edge that seems never far away.
    It's a like a nightmare, that sometimes you can't quite believe is really happening to you. And that this should be it, all there is and all there ever will be.

    You know, sometimes I believe this illness cannot get any worse, and yet here we are being kicked around like a political football. If there was any justice, the match would be abandoned, and we would be given the recognition that we deserve, the attention we have missed out on and the treatments we so desperately need.

    Even if I were to recover tomorrow, how would I ever begin to put this human being back together again.
     
  11. Countrygirl

    Countrygirl Senior Member

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    Very well expressed!

    And, for some of us, even if there was a cure tomorrow, it would be too late.

    All our adult lives are spent and galloping decrepitude, other autoimmune and cardiovascular diseases, some caused by ME, have now destroyed what we have left. We cannot even get the expected medical help given to others with the same diseases because of the disbelief in the existence of and the prejudice against people with ME which ensures that the patient is dismissed even with clear evidence of other serious and life-threatening conditions.

    It is not an exaggeration to say this is genocide by wilful ignorance on behalf of the medical profession.
     
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  12. Tilney

    Tilney

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    My husband & I share the same computer. He has signed the petition.
    I can not use the link to sign the petition in my name - it appears to recognise it has previously been signed.
    I have tried the link to the ME association page as well - same recognition problem

    I have also tried logging off & shutting down the computer - still not allowing me to access the bit where you input your name & email address- we have different email addresses

    How do I sign?
     
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  13. NelliePledge

    NelliePledge plodder

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    From a smartphone?
     
  14. Chrisb

    Chrisb Senior Member

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    I think this statement shows as clearly as anything the inadequacy of Crawley's understanding of the illness.

    I have no doubt that there is a group for whom this is true. But equally there is another group who may find it difficult to stay awake until an hour which can reasonably be called bed-time, and then fall straight asleep. I count myself amongst this group.

    There is disturbance of sleep patterns which may take a variety of forms. If she does not recognise this she must be seeing a very particular group of patients.
     
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  15. Countrygirl

    Countrygirl Senior Member

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    9 500!!
     
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  16. Tilney

    Tilney

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    Tried the smart phone but - sign the petition link is not connecting

    I have emailed the link to a friend (myself) but still not getting to the input name etc..
     
  17. Revel

    Revel Senior Member

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    I struggle to get to sleep, but have never had an issue with waking in the morning, even if I have only managed 2-3 hours of slumber. Both a night owl and a morning lark - a strange bird, indeed (or so I'm told :rolleyes:).
     
  18. Countrygirl

    Countrygirl Senior Member

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    Just stumbled across this.

    It is by our all-time favourites and published in 1989. It appears to be the start of the unhelpful information that we are protesting about here.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf



     
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  19. Invisible Woman

    Invisible Woman Senior Member

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    Try clearing your cookies?
     
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  20. Revel

    Revel Senior Member

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    Any excuse to shoehorn biscuits into a thread . . . ;)
     
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