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Naturopathy: Happy Anniversary to Me and Dr. Upcott
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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. Firestormm

    Firestormm Content Team Lead

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    According to Cort's piece on Klimas and Sol they are talking more 'activity management' style 'exercise' and deconditioning here; and Newton was also talking similarly although she didn't talk about deconditioning specifically.

    As there is currently very few ways of treating people with the condition CBT and GET are recommended (along with Activity Management) simply because of this lack of anything else and a lack of aetiology.

    I am talking about I suppose the NICE Guideline and it's recommendations in the absence of anything better, i.e. that CBT, GET and Activity Management are by and large the only treatments for the condition as a whole.

    Specific drugs for symptom management are not listed of course but NICE do refer to this as being something a doctor should do in clinic on a patient-by-patient basis i.e. not every drug is deemed appropriate for all patients.

    Similarly if a drug is developed for say, this acid in the muscles issue, then said drug might not make it into NICE if it only helps or is deemed appropriate in certain patients/circumstances.

    The more research enlightens us and the more we are 'streamlined' and our symptoms explained, the less need there will be for CBT and GET. But they will still be there.

    People will still need help in learning to cope with 'life' with a chronic condition (if there is no cure) even with better treatments. And 'exercise' strategies will not go away - far from it. But they will perhaps be 'toned-down' and more tailored.

    Cynical old me might say that those in support of these two methods have sold them so well throughout medicine (not just for ME) that they will always be part of the 'kit-bag' for doctors to indicate.

    I am concerned that from Cort's write-up he is suggesting (correct me if I am wrong here) that deconditioning is responsible (in whole or in part) for autonomic nervous system dysfunction i.e. that long periods of bed-rest and/or sedentary periods are thought to cause these issues.

    Unfortunately, for Klimas, we have no evidence to work with. And as Simon had commented in the comments beneath that piece, all the 'evidence' thus far appears to have shown that we are no more 'deconditioned' that anyone else.

    If/when Klimas can better explain this deconditioning I shall be all ears - but it smacks to me of the old 'blame the patient game'. Though I'm probably being unfair.

    One thing does appear certain, the 'exercise' that Klimas is describing is along similar lines to that which I think Newton was talking about. Gentle movement and stimulation i.e. anaerobic and not aerobic.

    Personally, I shall follow the science. See where it leads and not read too much into Cort's summary at this point.

    Edit:

    I see Cort's piece gets coverage here: http://forums.phoenixrising.me/inde...oning-exercise-in-me-cfs-on-corts-blog.21504/
    barbc56 likes this.
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I think that might be a bit of an overstatement - although it's clear from fact of the GP practice guide in the case of M.E, that the position in Scotland is more locally driven where interventions are concerned. NICE has a guide to it's relationships to the various parts of the UK - Scotland and Wales are broadly similar although the terms of Public Health guidance differ: http://www.nice.org.uk/aboutnice/whatwedo/niceandthenhs/nice_and_the_nhs.jsp In both Scotland and Wales, NICE guidance applies just as it does in England and N.I, to all "interventional procedures".

    What difference there is, I suspect comes down to how much 'latitude' is allowed to clinicians by the the respective administrations, at that level and from my very limited perspective I'd suggest that the Wales Goverment is rather more timid in loosening the NICE apron strings, than the Scots Government. This is perhaps not surprising because the demographics of the Wales/England boundary mean there is a much greater patient flow across the boundary than that which occurs across the Scotland/England boundary. Wales also has a smaller per capita financial settlement than Scotland while having broadly similar levels of health challenge, and I think this also engenders a greater reliance upon NICE as an arbiter in health care rationing.

    IVI
  3. peggy-sue

    peggy-sue

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    To quote exactly from the first set of Scottish guidelines:-
    (before AfME got hold of them and watered them down to be more consistent with England. It's the business of England trying to keep Scotland and England on the same script. "We're all in this together" and all that cr*p!)

    "The current advice from NHS Quality Improvement Scotland on NICE guidelines is that these have no formal status in Scotland, as SIGN has responsibility to produce clinical guiidelines for NHS Scotland. Guidelines help healthcare professionals in their work, but they do not replace their knowledge and skills."

    However, we have no "specialist ME centres", we have only one specialist nurse in the whole country. If you have a lazy, ignorant and unhelpful gp, they can choose to default to NICE.
    carole Carrick likes this.
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Oh no not an English/Scottish turf war: http://www.sign.ac.uk/about/niceandsign.html:eek:

    IVI
  5. peggy-sue

    peggy-sue

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    Ah well, roll on Independence and a complete divorce from NICE and its shennanigans.
    There has been a lot going on up here with regard to awareness of ME, politically.
  6. jimells

    jimells Senior Member

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    Firestormm I truly hope that my cynical sceptical view of Dr Newton's work is unjustified. Constantly reading between the lines is exhausting work for me. And so is sifting through the ever larger heaps of junk science, lies, and propaganda.
    allyb likes this.
  7. MeSci

    MeSci Activity level: 6

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    I got a really scientific answer (not) from my doc when I asked him what he thought might have caused my blood pressure to rocket after being normal for almost 50 years.

    "The most common reason is no reason."

    It is depressing when those to whom we have to go for help on important health matters appear to have zero interest or curiosity about how the body works, or why it sometimes doesn't.
  8. Firestormm

    Firestormm Content Team Lead

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    Rather good summary of yesterday's presentation of Newcastle's work here:


    You and ME: working together to discover biological causes of CFS/ME

    "...At the launch, Professor Newton will outline three new studies being carried out in Newcastle. The first involves examining whether a monoclonal antibody, Rituximab, could be used as a medicine in order to understand more about fatigue mechanisms. Rituximab is highly successful in treating rheumatoid arthritis, some cancers and the profound fatigue experienced by patients with an immune liver disease known as Primary Biliary Cirrhosis.

    The second trial will explore why people with CFS/ME have low blood pressure and whether this could be a target for treatment.

    This work includes studies involving newly-developed MRI techniques to examine the muscle, brain and hearts of patients. In addition, further laboratory studies will involve growing muscle cells from CFS/ME patients and examining their reaction to exercise.

    The third study lead by Dr Fai Ng at Newcastle University explores the role inflammation might play in the symptoms of fatigue...."
    peggy-sue and lnester7 like this.
  9. lnester7

    lnester7 Seven

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    I just had to comment on deconditioning, see my blog. I went from no able to move to doing 3 miles next day with no PEM and no crash just by adding Midodrine, I did it on purpose because I never bought the theory of deconditioning, I saw similar reuslts when I added florinef. I lean towards some OI mechanism going on. I have it documented in my blog.

    I can tell what is from deconditioning Vs OI or CFS what ever it is. I remember from being normal Vs I HAVE AN INABILITY to produce energy to move a muscle and next day when I feel better I can miraculous do it??? When you are deconditioned you work your way up to achieve something and you are "unable" to do the same thing from one day to the other. Just my humble opinion and experience.
    allyb, jimells and ahimsa like this.
  10. MeSci

    MeSci Activity level: 6

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    People could try taking sodium bicarbonate to neutralise the acidity. I have been using this for almost a year now as part of my gut-alkalising regime, and don't seem to have had any adverse effects. I don't know whether the bicarb itself has contributed to the significant improvements I have seen, but unfortunately the improvements have not yet included an increase in energy. My hope is that the gut alkalisation has reduced my adrenaline production, thus reducing the 'false energy' this was previously giving me. Whilst it's frustrating being low on energy, it may be beneficial in the longer term as it perhaps reduces my tendency to over-exert myself and thus reduce my chances of recovery.

    Use of sodium bicarbonate to counter acidosis is controversial. There are studies finding that it helps athletes and non-athletic healthy people to exercise without adverse effects, but there can be adverse effects, probably more likely when large amounts are given intravenously in emergency care.

    This page has some useful info:

    http://www.anaesthesiamcq.com/AcidBaseBook/ab8_7.php

    In fact the site has lots of interesting stuff on acidosis.
    Shell likes this.
  11. biophile

    biophile Places I'd rather be.

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    To be frank, I found that resistance-based exercise is just more false hope which wastes precious capacity. There is no escaping the piper, he must be paid. Chores and hobbies are more important than exercise for the sake of activity.
    peggy-sue, Svenja, Bob and 4 others like this.
  12. alex3619

    alex3619 Senior Member

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    On the other hand, this doctor was honest, he didn't make anything up. That is to his credit.
  13. lansbergen

    lansbergen Senior Member

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    Well said
    Bob and Shell like this.
  14. MeSci

    MeSci Activity level: 6

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    Not to mention trying to earn a living...
    Valentijn, Bob and biophile like this.
  15. MeSci

    MeSci Activity level: 6

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    But saying that there is 'no reason' for an abnormality is unscientific and suggests to me that the speaker thinks that things like that just 'happen' and he has no interest in considering possible causes, much less has the scientific background to do so. I expect a doctor to at least have some scientific curiosity and knowledge.

    However, as Patient UK say re hypertension "The cause is not known in most cases", the correct answer would have been words to that effect, not that there is no reason. Everything in medicine has a reason, whether or not we know what it is.
  16. alex3619

    alex3619 Senior Member

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    In general speech "no reason" is typically short for "no known reason". Unless there is some specific reason to interpret it otherwise, I wlll generally interpret it as no known reason. Its an admission of cluelessness. If there was something else not discussed that leads you to think this interpretation is wrong, it is not clear from what you wrote.
  17. ukxmrv

    ukxmrv Senior Member

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    I've been trying bicarbonate and it's not been making any difference to my post exertional pain or problems. Tried by mixing with water and taking before and after any exertion that would normally result in sore muscles. The PEM has been mainly a problem of viral type symptoms and weakness in the past though.
    Bob likes this.
  18. Firestormm

    Firestormm Content Team Lead

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    I equate exercise with something more specific and separate to activity, don't you bio? I mean day-to-day living activities - from e.g. brushing your teeth, getting to the toilet, showering, getting dressed, to washing-up and cooking and cleaning - are activities in my book that pertain to 'activity management.'

    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. But then I guess it all depends on the specific nature of the routine.

    Appreciate your thoughts on this one. I am still at the activity management phase - and that's hard enough - but I couldn't see 'exercise' as being an activity: if you see what I mean.
  19. Sasha

    Sasha Fine, thank you

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    Where did you hear about doing that? I've only seen it on Sherlock's avatar and have been meaning to ask what it meant.
  20. MeSci

    MeSci Activity level: 6

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    I use bicarbonate to reduce acidity in my gut. My experience suggests that it is helping. I don't expect my diet/supplement/pacing regime (going for about a year now) to fix biochemical energy production until everything else has improved, and when the autoimmunity that I believe to be the source of the illness has decreased significantly.

    On the other hand, the loss of fat and gain in muscle is enabling me to do a little more with greater ease.
    Sasha likes this.

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