1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

ME/CFS Research Newcastle UK - Team Newton

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

  1. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,146
    Amersfoort, Netherlands
    I've got copies of all 10 now, in HD.
     
    Esther12 and peggy-sue like this.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,146
    Amersfoort, Netherlands
    Oh good. Dr Vincent Deary has the cure in video 8 at around 4:20. We just need to be a little more active immediately before and after intense activities we struggle with, so we don't have "too much" rest and thus can "keep our system going". :confused: And 10 minute breaks at work will be more restorative if we walk around during those breaks and aren't accustomed to 2 hour naps at home!

    And being more active will magically generate more energy!

    It's all pretty stupid really, and deceptive. He talks about minimizing the excesses of activity so that more can be done during the down period. But he's adding activity in, and not removing any, just inserting marginally longer breaks at work.

    And then the GET starts. Which is sold as "increasing more enjoyable activities", which of course increases energy via some unknown mechanism. Fortunately our symptoms will only "temporarily feel a little worse", but really it's just like the soreness he'd get if he started training for a marathon tomorrow. And because there's a bit more rest at work, she's now doing less and can therefore handle doing more. o_O Even though 1) she's not doing less, just resting a bit more while doing something and 2) if she were doing less to offset the increase in other activities, it would hardly be a net increase in activity as illustrated by the nice steps.
     
  3. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,415
    Likes:
    2,073
    Australia
    It is interesting to note that all studies which have actually measured activity patterns have failed to find "boom and bust" patterns. It is a failed hypothesis.

    Yes, some patients may occasionally have a boom and then a bust (say there is something the patient really wants to do!), but a large majority of the time, patients do not behave in this way. Patients naturally trend towards pacing (hence the real-world activity patterns observed), unless consistently pushed by outside sources to do more than they can physically achieve.

    "Boom and bust" is yet another myth associated with CFS.
     
    lastgasp, biophile, Sea and 3 others like this.
  4. meandthecat

    meandthecat

    Messages:
    99
    Likes:
    103
    UK
    Do these homilies follow a bell curve? starts off ok, caring but a bit wet. Then things seem a bit off, definitely picking up emerging sub-text, then down it goes as all pretence of objectivity is abandoned and the same old same old is trotted out.
    On video 6 at about 19.20 the stratagy is revealled.

    Thanks for the link by the way even if it does just confirm my cynicism toward psychostition
     
  5. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    I think Julia Newton and her group are doing some great work on figuring out just what our fatigue and OI are, and where they originate.Look up their essay on "Abnormalities in pH handling by peripheral muscle and potential regulation by the autonomic nervous system in chronic fatigue syndrome, 2009--I put "mitochondria" for "peripheral muscle". And then this one: "Home orthostatic training in chronic fatigue syndrome--a randomized, placebo-controlled feasibility study," 2010. I have been doing the exercise described there for about 3 months now, and it has significantly improved my OI, and is, I think, beginning to improve my exercise tolerance. And remember Nancy Klimas' comment on a gene expression study that first the ANS tanks, and then brings down the immune system with it. Since the HHS is obviously aiming to trash us, it will be up to us to try to improve our own state. Try it! Chris
     
    Marco likes this.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,146
    Amersfoort, Netherlands
    Yup. Basically don't tell the patient what you really think, and feed them some bullshit about CBT also being used for "real" diseases. Without, of course, mentioning that the rationale for the CBT and the application of it is completely bass-ackwards. CBT is used elsewhere for acceptance of chronic illness, but the psychobabblers use it to teach us to deny our illness.
     
    Min, aimossy, MeSci and 1 other person like this.
  7. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    BBC article 18 October: Cognitive therapy study hope for hypochondria patients ;)
     
  8. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    lastgasp, Bob and peggy-sue like this.
  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Ah but if you accept that CBT is at best a help for anxiety, from whatever it develops, then perhaps they (or whomever they got their report from) has a point. I mean we all know - and as Val has indicated - that CBT (or the principles thereof) are used across most (if not all) walks of life including chronic disease. Seems to me that if anything it is helpful in relieving some of the anxiety associated with disease persistence.

    Anyway, I wouldn't mind keeping this thread about Newcastle and it's developments if that's alright? I can post the BBC report separately if you think it might lead to some more discussion on this subject. Although I think CBT has been done to death.
     
    aimossy likes this.
  10. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    CBT has not been done to death..... UNFORTUNATELY.

    It's just the cheapest form of "therapy" that exists.

    And all it is good for is tackling superficial irrrational phobias which are not related to an underlying anxiety.
     
    Min, Sidereal, lastgasp and 3 others like this.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,384
    Likes:
    5,890

    That looks well worth a thread. Extra CBT vs just usual medical care in a non-blinded trial, and they get only an extra 7% of hypochondrpriorities's reporting 'normal' levels of anxiety? If that was self-reported, it looks like another poor result being hyped as a success. EDIT - just read the paper, and they do attempt single blinded assessment. That, and more exciting news in the thread linked to below!

    Maybe it's because I was being educated during the peak of the CBT/bio psychosocial/psych bubble, but I'm just amazed at how little value there is in these interventions. That result is being used to argue that more money needs to go into training people for CBT?

    So many thing I want to take the time to read closely and think about. Dodginess everywhere imo - it's hard to concentrate on one's priorities.
     
    peggy-sue, Sea, Bob and 1 other person like this.
  12. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    New thread here :)
     
  13. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
     
    aimossy, Valentijn and Bob like this.
  14. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    228
    Likes:
    256
    @chris.88

    Hi, very interesting post. Unfortunately, I am unable to access the second paper - is there any way to get hold of it? Thanks!
     
  15. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Rather an interesting blog attached to the latest post from Newcastle. The blog can be found here (link in article don't work Capt'n :))

     
    aimossy likes this.
  16. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    There is an interview with Gina Rutherford and a presentation (she is part of Team Newton) now on the AfME YouTube page:





    I haven't watched either yet - be interested to hear what y'all think :)
     
  17. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    Does anybody find youtube video presentations easy to watch, listen to and understand?
    I most certainly don't.
    I normally ignore anything presented in this way, no matter how useful it might be.

    The first one is giving me a link to a 1.75 hour lecture on finding allah and presenting jesus......I'm not watching that!
     
    aimossy likes this.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Eh? You just press play on the graphic above. Where's the link to allah?! :)

    Nice to see you back x
     
    aimossy likes this.
  19. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,875
    Scotland
    The links to allah and jesus came up after I closed it, giving up on the poor sound quality echoing everywhere and I can't make out a word she says.

    Then I decided to try giving it another go, so I clicked on the screen again, but it had turned into a patchwork of images and I couldn't find the right thing again.

    I know you just click on them and they play - I just hate watching and trying to listen to them.
    In general, (not referring to these in particular)

    The sound quality is poor, the picture quailty is poor. There's a lot of stuff to endure that isn't remotely interesting, then they skip quickly past the stuff I want to hear and I miss it.


    If it's in print, I can skip the introductions and fluff and get down to the important bits and concentrate on them.
    I don't want to waste valuable effort listening intently to the fluff and introductions!
    I don't do passive tv watching very well. I get bored and fidgetty and give up.
    I do not watch anything on the computer, ever.



    I'm not completely sure I am back. I know my body's here, but my brain is all over the place, Russ!
    I had a wonderful time. :thumbsup:
     
    MeSci, aimossy and Firestormm like this.
  20. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    228
    Likes:
    256
    The second video seems to have been taken down?

    I'm also struggling to hear, but from what I understand from the first video:

    -she basically says that her PhD is about looking at muscle dysfunction in CFS (+ developing a drug pre-testing system - not sure what that means).

    -Aims to be able to reverse muscular acidosis with a drug tolerable by the human body. (I assume she means the excess build up of lactic acid etc during activity)

    -So patients can take a drug in tablet form and reduce the symptoms of muscular acidosis when they exercise.

    -Research is going in the right direction and starting to get the attention it deserves

    That's pretty much all I got!


    Anyway her research profile here:

    http://www.ncl.ac.uk/icm/research/project/4553

    Project:
    Understanding Muscle Dysfunction in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.

    From April 2013 to March 2015
    Project Leader(s): Dr Phillip Manning, Professor Julia Newton
    Staff: Gina Rutherford
    Contact: Dr Phillip Manning
    Sponsors: Action for ME. NIHR Biomedical Research Centre in Ageing and Age-Related Disease.

    Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome [ME/CFS] sufferers frequently describe a sense of muscle energy depletion after exercise often accompanied by muscle pain. This project will use state-of-the-art techniques to grow muscle cells in the laboratory, measure metabolism of these cells and explore why muscle cells from ME/CFS patients have problems with muscle energetics. This will help us understand why ME/CFS patients have muscle energy handling problems, why this makes them fatigued and how we can improve this to reduce fatigue. Development of this laboratory system will also provide an experimental system to allow us to test drugs potentially able to alter metabolism in ME/CFS and to treat fatigue.
     
    aimossy and Firestormm like this.

See more popular forum discussions.

Share This Page