Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Old but interesting CFS Research papers

Discussion in 'Latest ME/CFS Research' started by Simon, Jul 27, 2012.

  1. Simon

    Simon

    Messages:
    1,921
    Likes:
    14,549
    Monmouth, UK
    I hope it's OK if I put this thread in 'Latest Research' as there are many interesting, important or just plain shocking papers published well before this forum was born that might be worth discussing here. Moderators/other posters please comment/take action if you think this is inappropriate.

    As an example, here's a paper from 1998 that was well ahead of the game in using stress/challenge testing to reveal diffrences between CFS patients and healthy controls:

    Effects of exercise on cognitive and motor function in chronic fatigue syndrome and depression, Blackwood 1998 (free full text)

    This study is very small (n=10) and doesn't appear to have been replicated (or refuted) in the years since, which is a shame given the potential importance of the findings. In the last couple of years, measuring CFS function after a challenge finally seems to be taking off, eg the Lights' study of gene expression of sensory receptors following moderate exercise.
     
    Hutan, SOC, Enid and 2 others like this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    Thanks for mentioning it.
     
  3. Simon

    Simon

    Messages:
    1,921
    Likes:
    14,549
    Monmouth, UK
    Tired of being inactive: a systematic literature review of physical activity, physiological exercise capacity and muscle strength in patients with chronic fatigue syndrome. Nijs 2010

    Apologies if this had its own thread but I couldn't find one for it

    I was surprised by some of the statements in this study we appear remarkably patient-friendly, particularly as I 'd thought Jo Nijs was part of the Dutch/Belgium biosychosocial school.

    from the Discussion
    There was plenty in the paper I'd disagree with, but it seemed to go well beyond striking a patient-friendly posture. Maybe others know different.
     
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    Nijs is pretty much a mystery to me. Can't predict what he'll be saying next.

    Chronic fatigue syndrome: lack of association between pain-related fear of movement and exercise capacity and disability.
    Nijs J, Vanherberghen K, Duquet W, De Meirleir K.
    Phys Ther. 2004 Aug;84(8):696-705

    cf with:

    Exercise performance and chronic pain in chronic fatigue syndrome: the role of pain catastrophizing.
    Nijs J, Van de Putte K, Louckx F, Truijen S, De Meirleir K.
    Pain Med. 2008 Nov;9(8):1164-72. Epub 2007 Oct 3.

    How to explain central sensitization to patients with 'unexplained' chronic musculoskeletal pain: practice guidelines.
    Nijs J, Paul van Wilgen C, Van Oosterwijck J, van Ittersum M, Meeus M.
    Man Ther. 2011 Oct;16(5):413-8. Epub 2011 May 31.
    cf with:

    Intracellular immune dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: state of the art and therapeutic implications.
    Nijs J, Frémont M.
    Expert Opin Ther Targets. 2008 Mar;12(3):281-9. Review.

    Disability evaluation in chronic fatigue syndrome: associations between exercise capacity and activity limitations/participation restrictions.
    Nijs J, De Meirleir K, Wolfs S, Duquet W.
    Clin Rehabil. 2004 Mar;18(2):139-48.

    cf with "How to Exercise People with Chronic Fatigue Syndrome"

    Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?
    Meeus M, Mistiaen W, Lambrecht L, Nijs J.
    Anticancer Res. 2009 Nov;29(11):4717-26. Review.

    example para with annoying bits:
    some interesting bits from the full text
    [which interferon?]

    including chanellopathy, mitochondrial dysfunction, etc.

    characteristic solution proposed:
    hahahahaha, being better is associated with being better! imagine that #tautology
    rather thin discussion on the risks of exercise in ME or CFS, but immunology is acknowledged
     
    Hutan, Valentijn and Simon like this.
  5. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    willow, thanks for your impressive post. Obviously a lot of work to put it together.

    The similarity between cancer-induced fatigue and what we experience strikes me as very significant. I have a friend who recently went through the cancer sugery/chemo-poison treatment. I thought it was a strange coincidence that he described what we would call PEM. Maybe not a coincidence at all?

    So is there a treatment to improve NK cell function? (Besides GET, of course!)
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    Ta Willow.
     
  7. redrachel76

    redrachel76 Senior Member

    Messages:
    492
    Likes:
    725
    Israel
    I once tried to get a rather disgusting doctor to test my NK cell function. He refused of course. He said that even if you have low NK cell function, the treatment for it is vitamin C supplementation.

    I take high vitamin C supplements every day. They don't get rid of my M.E or exhaustion but I have problems digesting and constipation as some of my symptoms and it helps with that.
     
  8. redrachel76

    redrachel76 Senior Member

    Messages:
    492
    Likes:
    725
    Israel
    There is a website that lists "grey area" research in M.E from past years that just got ignored. I don't know much about the organisation or the website it is on. I'm too brain fogged to read and understand much. It's too much info even for a healthy person.
    The website is here:
    http://www.meactionuk.org.uk/Grey-information-on-ME-CFS.htm
    http://www.meactionuk.org.uk/Grey-Info-Part-3.htm

    I found it by accident. while looking for 2 long lost doctors on the web.
    It's a strange story. Back in 1994, not long after I got ill, I was living in Sheffield and I heard that in a Leeds hospital there was a partnership of 2 doctors who had discovered something in M.E. They were called Dr Swinburne and Dr Coyle. Years later I found their paper in the link below. When I went to see them they were continuing in further research on metabolism or some such... I can't remember. They were the first proper M.E doctors I ever saw and I wish I had stuck with them but I was seduced by Dr Myhill and went to her. After getting worse on Dr Myhill's treatment I strangely stopped getting appointments from them. I tried to contact them and was told that Dr Coyle had comitted suicide and Dr Swinborne had left. I asked why Dr Coyle had comitted suicide, he seemed such a nice man and did not look unhappy. They said it was "personal reasons". I never heard of them or their research again until I found this on the web now. It looks like a pretty serious bit of research that has been completely forgotton:
    http://www.meactionuk.org.uk/Grey-Info-Part-3.htm
    (You have to scroll down.)
    "Dr Layinka Swinburne from Leeds confirmed that the distinct symptom of ME is fatigability of muscle after minimal exercise, with slow recovery before muscle power is restored, and said that Dr Melvin Ramsay called this phenomenon the ‘sheet anchor of diagnosis’. She presented evidence that the basis of the fatiguability is a defect in the regeneration of high energy phosphates, especially ATP, and that such an impairment would generate changes in membrane bound transport and ion movement, leading to chronic intracellular ion depletion (phosphate, potassium and magnesium), with further impairment of mitochondrial function; physical activity would produce greater depletion, leading to interference with many other functions such as immune reactions, hepatic detoxification, gut motility, neurotransmitter function, maintenance of red cell shape and tissue respiration.

    Dr Sean Coyle, an associate of Dr Swinburne, noted that serum potassium and phosphate levels have been shown to be decreased in ME and that renal tubular handling of phosphate was low, suggesting an inappropriate loss of phosphate in patients with ME. He noted that low phosphate levels could affect every cell in the body and may cause bone factures, weakness, fatigue, abnormal pulmonary function, low blood pressure and depressed cardiac stroke volume, as well as cognitive dysfunction."

    I remember Dr Coyle of the partneship was a nice shy Irish man with an accent and endearing eccentricity. He was a pathologist IIRC. I'm don't think anything sinister happened. It could easily have been bad luck in Dr Coyle dying.
     
    GreyOwl and Hutan like this.
  9. Marlène

    Marlène Senior Member

    Messages:
    442
    Likes:
    234
    Edegem, Belgium
    Great summary Simon!
     
  10. lnester7

    lnester7 Seven

    Messages:
    2,452
    Likes:
    3,554
    USA
    I am on prescription for imunovir to increase NK. Inosine is as effective.
    Supplements: AHCC, also some research on Maitake Mushroom supplement.

    To Eat: Maitake and Shaitake Mushroom.
     
  11. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    I could definitely use some Mushroom Therapy :alien:

    Where do I get a prescription??
     
  12. lnester7

    lnester7 Seven

    Messages:
    2,452
    Likes:
    3,554
    USA
    The mushroom (AHCC and Maitake Supplements) are online, you buy it anywhere. To eat, they sell them here in any supermarket just check the name on the pack. The maitake sometimes I only find on the health store.

    The prescription of imunorvir I got from Dr Rey. Inosine I heard people get it from Drs, And if I am not wrong is over the counter in Europe?!?
     
  13. Simon

    Simon

    Messages:
    1,921
    Likes:
    14,549
    Monmouth, UK
    Hi Willow

    That was quite a tour de force, thank you. I see what you mean about Jo Nijs having a pretty wide range of opinions on the same subject. I think he actually overstated some of the evidence for some of the immunological changes, particular for RNA-ase L, which I think has failed to stand up to robust replication. Similarly, I think the
    case for Central sensitisation is also overstated, he presents it almost as fact. But then I'd probably say the same thing about his reviews of the evidence for physical inactivity being the answer to CFS.

    Still, I suppose at least it shows he is willing to embrace the possibility of biological factors playing an important role.
     
    cfs6691 and WillowJ like this.
  14. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    Actually I was thinking about a different kind of mushroom therapy... :D
     
    Marlène and lnester7 like this.
  15. Marlène

    Marlène Senior Member

    Messages:
    442
    Likes:
    234
    Edegem, Belgium
    Autumn = mushroom season :whistle:
     
  16. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    Good tip. Thanks.
     
  17. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    Interesting to come across this. I just had a metabolic panel done several weeks ago that for the first time included a serum phosphate determination and mine came back low. It was repeated again several days later and again was low. The renal loss of phosphate is interesting as well as I've had a severe increase in kidney stones since becoming ill with ME.
     

See more popular forum discussions.

Share This Page