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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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UK, The Times, 23 Apr: 'Biological breakthrough offers fresh hope to ME sufferers

Discussion in 'General ME/CFS News' started by filfla4, Apr 23, 2013.

  1. Firestormm

    Firestormm Guest

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    Julia reported on the 10 patients and 10 controls in her presentation at the end of last year I seem to recall: http://forums.phoenixrising.me/inde...ion-transcript-and-video-november-2012.21357/ Still it is refreshing to see it picked up in the media and receive such apparent acclaim at this conference. I dare say they will be calling for more work to be completed - but this sounds like the 'cells-in-the-gym' experiment that she commented on.

    See also local Newcastle coverage:
    Newcastle University scientists showcase work to tackle ME

    n.b. This use of up to '600,000' prevalence is getting on my nerves... grumble... mumble...

    Also from the Newcastle facebook page comes news of the Rituximab and PBC trial:

    "We thought details of another study that is currently going on in our group might be of interest to some people too. This is the first trial of rituximab with fatigue as the primary endpoint in patients with the fatigue associated disease PBC. We really believe that important things will be learnt from this study that might be important for people with CFS and ME."

    You might recall from the presentation that PBC was often used as a comparison when looking at 'CFS/ME' on several of Julia's slides.

    http://www.controlled-trials.com/ISRCTN03978701/?forumid=331851
  2. Marco

    Marco Old blackguard

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    I wonder if the Newcastle team have any hypotheses that link these muscle findings with the cognitive deficits in ME/CFS also seen in PBC and PBC's autoimmune etiology?

    Cognitive impairment in primary biliary cirrhosis: Symptom impact and potential etiology

    http://onlinelibrary.wiley.com/doi/10.1002/hep.22371/full

    Autonomic dysfunction leading to hypotension, reduced blood flow in the brain and muscle tissues resulting in ischemia and hence elevated lactate?

    I appreciate that this was just a conference presentation but I do wish researchers would go a little way towards speculating how findings might fit within the broader context - just for my benefit if nothing else;) .
  3. SpecialK82

    SpecialK82 Senior Member

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    Absolutely Amazing!! And out of the UK no less! The walls are tearing down little by little we are making progress :)

    I don't know UK politics well, I hope that ME will move us up on the priority level.

    I know I've read about Julia Newton before, has she work on other biological ME studies, does she understand our suffering?
    golden and Bob like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    In case anyone is confused by my message and lansbergen's, they were from my thread which was merged with this one, before I, and presumably lansbergen, had seen the full text.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I do think that both muscle fatigue and brain fog involve excessive lactic acid/lactate production. It would be harder to test the brain lactate production in exactly the same way - any volunteers for brain biopsies...? Personally I wouldn't even volunteer for a lumbar puncture. But it should be possible through scanning - see this bit from my second link:

    "In novel studies at the University of Newcastle using magnetic resonance scanning of peripheral muscle in ME/CFS patients (a scanning technique which looks at the way in which muscle is working), significant abnormalities in the handling of acid within muscle during exercise have been observed."

    There is indeed evidence for lactate causing cognitive dysfunction - see the thread(s) on d-lactic acidosis for example. Also, lactate can cross the blood-brain barrier, and our BBB may be extra-permeable too.
  6. Firestormm

    Firestormm Guest

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    ahimsa likes this.
  7. adreno

    adreno 3% neanderthal

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    Luckily, there are quite a few things we can take to prevent lactate buildup.
    golden likes this.
  8. Simon

    Simon

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    This is really interesting work, though obviously using very small numbers. Apparently it will be submitted as a paper in the near future.

    But the fact that cultured cells, not just biopsy cells, show differences indicates this involves changes at a deep level. And presumably deconditioning can't explain the findings as controls and patient cells would be cultured the same way (I have a feeling cultured muscle cells have to be electrially stimulated at some point, but not sure about that). The fact that these results fit with the earlier in vivo fMRI studies of muscle functioning makes the finding look more promising (wonder if they took the biopsies from the people in the fMRI study?).
  9. alex3619

    alex3619 Senior Member

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    Which was reported months ago. It is however an important finding. From my memory of the original report, the muscle is alkaline at rest, but rapidly acidifies on activity, then only slowly returns to an alkaline state. Moreover there was a link between the severity of this problem and the severity of cognitive issues. What I do not recall if this was for just OI or for CFS. I doubt it was for strictly defined ME, but I would be happy to be wrong.

    If the original report was strictly about OI with CFS patients excluded, then this is a new finding. However I doubt this was done ... but again would be happy to be proved wrong.

    What is really new and important is the media attention. That usually does not happen, and the research gets sidelined, buried, or attacked. This might (I hope) be too high profile to be buried this way.
  10. alex3619

    alex3619 Senior Member

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    The question though is whether we want to do this at all, including taking alkaline substances. Lactate buildup increases muscle oxygenation in the short term (but does the opposite in the long term if its persistent acidity). Its not about preventing it building up, its about preventing it being made in the first place - isolating the cause/s and stopping those. High lactate is often considered a good thing in sports science, but excessive lactate production is definitely a sign something is wrong.
  11. alex3619

    alex3619 Senior Member

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    In the earlier work from Julia there was indeed a connection between excessive muscle acid production and cognitive disfunction, which if I recall accurately was described as an assocation. It is too early to more than speculate about causation.
  12. ahimsa

    ahimsa Senior Member

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    Re: media attention, I think these announcements are part of publicity for "The UK CFS/ME Research Collaborative"

    See press release - http://www.ncl.ac.uk/press.office/p...over-biological-causes-of-cfs-me#.UXc2coJOoy4
    And I'm pretty sure there's also a thread on PR forums somewhere.

    I have no idea whether this collaborative will be a "good" thing or a "bad" thing but I did notice the connection. From the discussion here I could not tell whether others knew that this is why the studies were in the news again.

    Edit - I also found this link on University of Southampton web page, another member:
    "Patients with chronic fatigue use additional areas of brain when using memory"
    http://www.southampton.ac.uk/mediacentre/news/2013/apr/13_67.shtml
    SickOfSickness likes this.
  13. Allyson

    Allyson *****

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    thanks for posting that Bob andthanks ecveryone for the interesting analysis

    I iwll forward th link on for folk to click on - newspapers vount the clicks to guage leveel of interest.

    As to deconditioning - I never had it tested alas but I did solid exercise for one to 3 hours almost every day for 3 years; - weight yoga pilates cycling etc. olst 10 kg and looked fantastic...... but was crashed every single day and that never had any effect on imrovring my condition. I could do nothing else either in the day time - was too ill - no socialising no house work; just very basic hygeine. Happy to repeat it thougth if it pores anything for anyone.

    As to Wessley I wonder if it might be the opposite of what he says - maybe a lot of pople who think they are depressed actually have undiagnosed ME/cfs - when thy talk of depressiona s a physical sensation itting out of the blue - might that not be crashing that they do not realise the cause of . You wake up feeling like totoal cr*p for no reaons so youassume it is depression.

    (Not saying all depression of course but it is a strong possiblity for some that bears investigating - does fluid and electrolyte replacement and compression clothing relieve symptoms for example would be one wayt o test it. )
    Valentijn and Sasha like this.
  14. Allyson

    Allyson *****

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    Another POTs articel in NY times - - note from 2011 ---- that I have just been sent
    posting link here for the record and those who are interested.

    2011 POTS article by the NY Times: http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&fb_source=message&

    *Please note, there are some incorrect aspects of this article, such as stating that POTS will go away over time and that acupuncture is an approved treatment for patients. However, the article does have some good insight and it is nice to see that our illness made it in the news a few years ago!
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Great research. I will admit that I may be being overly picky, but some of the wording of the article bothers me.
    Why not “The study revealed abnormalities in the muscle cells people suffering from ME which are likely to contribute to tiredness and the inability to perform sustained physical activity that many experience.”
    MeSci likes this.
  16. Sasha

    Sasha Fine, thank you

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    It occurred to me, reading this piece of research about our muscle cells cultured in a dish (or however it's done) that ME now looks like the gold standard for a disease that isn't psychiatric. It's in our very muscles and they're demonstrating the effect even when they're not in a body with a brain attached.

    If this was the first finding ever made with ME patients - if the research was just starting now and people had just begun to wonder what kind of disease we have - the question of psychological involvement as causative would simply not arise, it seems to me, and people with other poorly-understood diseases would be wishing they had so clear an indication that their own illness wasn't 'in the mind'.
    GracieJ, Persimmon, Bob and 2 others like this.
  17. Ecoclimber

    Ecoclimber Senior Member

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    Taking a line from the movie Braveheart and Sir William Wallace, I would expect then, that Simon Wessely and his cabal of UK psychiatrists/clinical psychologists would go throughout the UK and kiss the 'arse' of every ME/CFS patient they come across and beg, yes beg for forgiveness for the decades of suffering, abuse, neglect and death that they caused!.

    Eco
  18. adreno

    adreno 3% neanderthal

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    True, we want to find the cause and stop it. But how long is that going to take? In the meantime, people are suffering, and if there is anything that can be done to lessen that suffering, then I'm all for it. I understand that you're saying that it might be counterproductive, though. I am going to have to look into this matter more, thanks.

    Citrulline looks interesting:
    http://www.ncbi.nlm.nih.gov/pubmed/21908948
  19. bertiedog

    bertiedog Senior Member

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    I think that what you have written above is so key to our illness being taken seriously by the medical profession. Does anybody know if it was only The Times that reported this finding? It would be so helpful if the BBC, Channel 4, Sky etc also reported a finding like this.

    It also sorts of helps me to remember this when I am out walking my dog and getting frustrated that after only 15 minutes or so my legs stop working properly and I have to stop and have a rest.

    One thing I don't quite understand regarding the high levels of lactic acid is that is have never shown up in any of the specialised tests I have had done including the MAP only done 3 weeks ago. Presumably this is because when the tests are done I haven't been exercising (the Metabolic Acids Profile tests the first urine of the morning when one has been lying in bed all night).

    Pam
  20. Sasha

    Sasha Fine, thank you

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