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ME/CFS Research Newcastle UK - Team Newton

Discussion in 'General ME/CFS News' started by Firestormm, Sep 26, 2013.

  1. aimossy

    aimossy Senior Member

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    yes I feel bad all the time too, like ive hiked up hill with a heavy pack solid for a day after being very unfit and I have a very bad hangover from drinking too much on the same night of that tramp. Im worse if I do more the following day as well.
    not to mention a plethora of other things including cognitive.
    JULIA NEWTON yay! This is the sort of stuff that breaks the camels back eventually! really hope someone is in line to replicate!
     
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  2. bertiedog

    bertiedog Senior Member

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    I think that what you have said goes to show how we are not all the same and yet we have the same label.

    For me it would be huge to be able to exercise and not get the muscle pain and fatigue that stops me doing anymore. I can feel well until I do too much exercise

    I am positive there are going to be subsets in this illness and Julia Newton's recent talk talked about those that suffer with POTS type symptoms and those that don't being 2 separate groups whose muscles act differently. This is what probably causes the confusion and arguments.

    For me it isn't only muscles that get fatigued far too quickly but I also have frequent throat infections and viruses plus my endocrine system has been destroyed by this illness but because I have daily treatment for this my other symptoms are so much improved. I also have almost daily migraines so there is a lot more going on but I am lucky I can deal with these and still lead a good life.

    Pam
     
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  3. maryb

    maryb iherb code TAK122

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    @bertiedog
    Thanks Pam - but isn't pain in a muscle a way of our body telling us something isn't right, not necessarily with the muscle? I value everyone's opinion as I am very limited into what I can watch and research.

    I posted the following on another forum about my thoughts on this study.

    'My brain works in a very simple way - okay. So can I make an analogy and people tell me if/where its wrong.

    My horse has a broken shoulder, he won't put his foot down on the floor, the team of vets decide to look at ways of numbing the leg from the foot upwards so he can't feel the pain and will walk on the leg. They have to find a drug to do this.
    They haven't looked at the cause/root of the problem and merely addressed a symptom (which is the result of the broken shoulder).
    the horse will never get better until his shoulder is fixed.

    should I feel this is progress?[​IMG]??'
     
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  4. bertiedog

    bertiedog Senior Member

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    @maryb Yes I think this is definitely progress because the Newton team are showing definite abnormalities in the way our muscles are working or not working as the case may be. The high lactic acid plus other abnormalities are taking place in the petri dish so no-one can introduce psychological processes into what is happening, it has to be a biomedical problem. With regard to proof of our illness being very physical and not psychological at least that is great progress but Julia Newton and team are looking further into this and even if they only find a drug that helps to get rid of the excess lactate its something that might make us feel a bit better, I am sure it would in my case being purely selfish! Julia Newton has said that this excess lactate affects the brain too so it isn't just a case of the muscle problem it might well account for far more of our problems..

    I think she will move on once they actually find why this is happening to try and stop it from happening at all but I guess that will be some time away. At the moment they have found several abnormal processes going on including the fact that our muscles aren't handling glucose properly. This is huge for me again because one of my worst symptoms/problems is that my body doesn't handle any sugar or carbs properly and I have had to radically change my diet and stick to it which means a quite restricted diet but there are big benefits for me in eating in this way but to somebody who didn't have ME/CFS it would probably look like I was rather obsessive about what I eat.

    I am not convinced that everybody who has ME/CFS is even aware their body's cannot handle any form of sugar or carbs properly and that if they ate a lowish carb higher fat and protein diet they would feel a bit better. Partly this is caused by the low cortisol and HP axis problems.

    I have only watched the video once and I want to watch it again and take some notes because I am sure there were some other interesting things that she said. I believe she mentioned about a problem with creatine and if this is the case I wonder whether we could improve just a little by taking extra creatine every day.

    Pam
     
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  5. Bob

    Bob

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    This is an interesting summary of Prof Newton's presentation at Action for ME's AGM.
    It's got a number of interesting nuggets in it, including discussion of a potential treatment.
    I don't understand all of it, as it includes some biology that I'm not entirely familiar with.

    Julia Newton Talks About Muscle Abnormalities in ME Patients
    http://www.prohealth.com/library/showarticle.cfm?libid=18528
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Very good summary, thanks. I had to stop reading part-way through as my brain got tired but I've saved it for future reference.

    I think that lactate dehydrogenase (LDH) can only serve as a very general marker as it can indicate a range of conditions, as detailed here.
     
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  7. bertiedog

    bertiedog Senior Member

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    I have just started taking some creatine in a little fruit juice every morning to see if it helps my muscle problems. Taking some carnitine fumerate plus vitamin B12 and folates also helps my energy a lot.

    Pam
     
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  8. Bob

    Bob

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    I was wondering if creatine might be a useful supplement for ME patients, after reading the Newton article, but (according to Newton's presentation) it's the availability of phosphocreatine (aka creatine phosphate) that seems to be the problem. Phosphocreatine breaks down into creatine (and ATP), it says, so the depletion of phosphocreatine is not necessarily related to a lack of creatine. Can't see any harm in trying it as a supplement though. Perhaps supplementation might increase the availability of phosphocreatine.
     
    Last edited: Dec 31, 2013
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  9. bertiedog

    bertiedog Senior Member

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    Hi Bob

    So far so good. On the days I have taken it in a small amount of fruit juice but lots of water I have had very good energy. As usual only time will tell!

    Pam
     
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  10. Battery Muncher

    Battery Muncher Senior Member

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    @bertiedog Sounds interesting! Nearly a week later, how do you feel? Also what brand/ dosage etc are you using?
     
  11. bertiedog

    bertiedog Senior Member

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    @Battery Well everything has gone pear shape because since last Thursday I had to start antibiotics Doxycycline and it blocks the beneficial effect of the steroid I have to take because my adrenals don't function anymore therefore I have a permanent migraine which just won't go. My throat has got a lot better now at last but with these migraines I feel horrendous in myself as you can imagine.

    However the weird thing is that when I take some extra steroid in the afternoon I still have got better energy in my legs so things like B12 and other methylation supplements plus the creatine really do help energy-wise at least.

    Its my immune system that is such rubbish!

    Pam
     
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  12. maryb

    maryb iherb code TAK122

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    @bertiedog
    funny I had the same throat thing?? took some a/biotics which floored me further so stopped them (I took 8 x 500mg) terrible migraines (too many toxins for the body to clear) am still fighting on to clear it myself but a lot better than I was. I actually went out for an hour yesterday, so pleased to get back out into the world. Sorry to hijack the thread........
     
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  13. bertiedog

    bertiedog Senior Member

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    @maryb
    I have had to stop them too, i cannot go on feeling like I was, they were poisoning me. What I have researched is that my steroid, Prednisolone is the most important drug I take and I cannot be without it or my normal dose of 6mg.

    Both Doxycycline, Erthyromycin, Clarithromycin are potent inhibitors of the steroid and stop the enzyme from working to break it down, Hence all the time I am taking any of these antibiotics I am in big trouble because I am not getting the benefits from the steroid, hence the horrendous migraines. My blood sugar gets messed up when I am on them too which would make me very light headed at times. I also felt very depressed, whereas normally I feel very happy the majority of the time.

    So haven't had any Doxy since yesterday morning and felt dreadful until mid day today when after I forced myself to go for a short walk with my dog to get some fresh air I started to feel better. This afternoon I was very busy doing voluntary work at my local Visitor Information Centre but I felt my old self at last.

    Very tired now and my back is aching but this is to be expected. My throat is still a bit red and sore but I will take lots of herbal stuff if necessary and also some Inosine has arrived today I think I have benefitted from Immunovir in the past.

    Don't want to go through the antibiotic thing again. I have found that Cephlexin should be ok and so is Azithromycin so will have to stick to them in future. I wish my GP knew about drug interractions and how important they are especially when on steroids.

    Have to say I don't understand why I was able to take Doxy daily for about 6 months but that was over 11 years ago and probably I wasn't so steroid dependant then. It seems to have been a gradual thing, maybe autoimmune like the Hashimotos I have.

    Hope you continue to feel better. What a relief to feel human again!

    Pam
     
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  14. Simon

    Simon

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    Update on large MRC study (spotted by @Tom Kindlon)
    Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment

    This is quite long. I've posted the abstract below but I think the two most interesting points goals are:

    1. Look to see if ANS problems are upstream (brain) or downstream (vascular)
    This work will make use of fMRI ie real-time imaging of the brain, measuring blood flow.

    2. Explore the relationship between ANS and cognitive problems in CFS - including if changes in ANS lead to corresponding changes in cognitive function

    Abstract

    Chronic fatigue syndrome (CFS) occurs in 0.2-0.4% of Europe's population, can affect all ages and currently its cause is unclear. Abnormality of the autonomic nervous system is recognised in over three quarters of those with CFS and is a plausible physiological mediator of the symptoms that are characteristic of CFS and fatigue in other chronic diseases. Autonomic nervous system dysfunction is characterised by symptoms of dizziness and lightheadedness when standing up, symptoms that we have shown to be present in nearly 90% of people with CFS, and the severity of which have been shown to predict the ability of CFS patients to function (more so than the severity of fatigue). Despite this, the mechanisms by which autonomic dysfunction arises in those with chronic fatigue syndrome are not understood and as a result treatments limited.
    This study fills this gap by setting out to explore what leads to autonomic dysfunction in CFS using novel methodologies particularly whether it is upstream (related to abnormalities in centres in the brain that control the autonomic nervous system) or downstream (due to a peripheral volume or vascular problem) in origin. In non-CFS diseases autonomic dysfunction has also been shown to be associated with cognitive impairment. Over 80% of those with CFS describe problems with memory and concentration, so this study will also determine the relationship between autonomic dysfunction and these cognitive problems frequently found in those with CFS, and whether improving autonomic dysfunction in CFS leads to changes in cognitive function. Utilising the enormous resource created by this integrated study, the programme will look to develop diagnostic biomarkers using an innovative systems approach.
    The programme has two complementary phases: 1) an exploratory study that utilises ground breaking dynamic MR modalities that will allow study of brain function in CFS and how this relates to autonomic and cognitive function. 2) a downstream study which combines a number of work packages to define the relative contribution of cardiac and vascular function in autonomic dysfunction. 3) an intervention phase which will examine the direction of relationship between autonomic and cognitive function in CFS in a 'proof of concept' study. 4) a systems medicine modelling approach utilising the unique dataset to explore the interrelationships between parameters and their potential for biomarker development.
    Understanding the mechanisms that lead to autonomic dysfunction in those with CFS will be a paradigm shift. This programme will lay a foundation for research by the applicant and others that will enable a future set of diagnostic tools, system based explanations of dysfunction, a new generation of therapies and ultimately clinical protocols that will counter the biological processes that underpin fatigue in a range of diseases.
    This proposal will use state of the art techniques such as dynamic brain FMRI to measures cerebral blood flow during the autonomic nervous system stressor of the valsalva manoeuvre (considered to be a test of cerebral autoregulation) to understand the mechanisms that lead to autonomic dysfunction and the associated cognitive impairment seen in the majority of those with CFS. This study will be performed in a cohort of CFS patients who have been fully characterised and who will be followed up to explore whether cognitive symptoms change when autonomic function is modulated.
    This project will directly benefit patients through improving our understanding of how autonomic dysfunction arises in CFS and how it associates with cognitive function. This enhanced understanding will lead to the development of targetted appropriate treatments for clinical trials which will be aimed at reversing these abnormalities.[/QUOTE]
     
  15. maryb

    maryb iherb code TAK122

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    Sounds good - I hope they've got the cohort right.......
     
  16. Firestormm

    Firestormm Guest

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    @Simon has that not already been stated by the MRC at the time the funding was announced back at the end 2012? In what way is it an update. Sorry I don't understand :)
     
  17. Firestormm

    Firestormm Guest

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    I would imagine the words are Prof. Julia Newton's own in this instance.
     
    Last edited: Feb 3, 2014
  18. Firestormm

    Firestormm Guest

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    Further to the above:

    There are two current MRC research grants being worked on at Newcastle, though I guess Julia is referring (above) to her own:

    The Action for ME funded project is actually with Northumbria, not Newcastle, but Julia Newton is overseeing the work: http://www.actionforme.org.uk/get-i...vity/qualitative-experience-of-sleep-in-mecfs

    See also this blog from Zoe (who was mentioned above and also presents video earlier on this thread I think) one of the PhD students who has brought fresh blood and enthusiasm into the field: http://www.meassociation.org.uk/201...ndrome-cfsme-zoe-gotts-blog-15-november-2012/

    The ME Association funded work with Newcastle and also with Jason Ellis at Northumbria (they must work in collaboration rather a lot it seems), relates to "Sleep disturbance and management – Professor Jason Ellis et al at University of Northumbria and Professor Julia Newton at University of Newcastle."

    This comes from the MEA November 2013 (i.e. the latest) Board Summary:

     
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  19. Firestormm

    Firestormm Guest

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  20. Firestormm

    Firestormm Guest

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