Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Evidence of sleep problems and post-exertional fatigue in CFS

Discussion in 'Latest ME/CFS Research' started by oceanblue, May 3, 2012.

  1. oceanblue

    oceanblue Guest

    Sleep-Wake Behavior in Chronic Fatigue Syndrome [full text]
    SLEEP, 2012
    Khairunnessa Rahman, BMedSci (Hons)1; Alexander Burton, PhD1; Sally Galbraith, PhD2; Andrew Lloyd, MD3; Ute Vollmer-Conna, PhD1
  2. Calathea

    Calathea Senior Member

    If the subjects with ME had the same activity levels as the healthy subjects, they must have had very mild ME indeed. It's admirable that they want a control, but they need to look at the more severely-affected folks. My circadian rhythms didn't go haywire until I got into moderate ME. It's also alarming that they are making sweeping assumptions based on such a small group, evidently cherry-picked. Perhaps they were self-selecting for being awake during the day, for instance if they were required to attend several morning appointments for the purpose of the study?
  3. Ember

    Ember Senior Member

    Here's an interesting quotation from the "Discussion" section of the study:

    It's worth noticing the Limitations and Future Directions section of this study:

  4. oceanblue

    oceanblue Guest

    There's something a little odd going on here. You can see from the baseline data that CFS patients report 4.9 hours exercise a week, which is bizarre given that they are Fukuda-diagnosed, yet they score much more highly than healthy controls on symptoms (SOMA), disability (BDQ) and days out of role.

    Exercise (h/week): CFS=4.9 (6.3); Controls=6.9 (3.7), differnce not significant
    SOMA: CFS =4.3 (3.7); 0.3 (0.7), p=0.00
    BDQ: CFS=12.9 (5.0); 1.5 (2.4), p=0.00
    Days out of role: CFS=12.5 (11.9); 2.9 (8.1), p=0.02
  5. Valentijn

    Valentijn Senior Member

    Three of the five authors are from "School of Psychiatry, University of NSW, Sydney, Australia", and one of the others is a statistician. Not at all surprised to see them drawing psychological conclusions from unconclusive data, even when they fully accept the existence of PEM (the subjective sensation of it anyhow).

    The high rate of weekly exercise could be due to where they recruited the CFS participants:
    They were recruited during their second appointment, so the brain-washing and activity encouragement had likely already begun.
  6. Calathea

    Calathea Senior Member

    If they were all patients who were doing well on GET, then either it's unlikely that they all had true ME, or else they were a very unusual subset of ME. It's also possible that they are at the stage where they're keeping going through sheer willpower, and are about to have a nightmare crash due to overexertion. They're certainly not typical of ME patients overall.

    However, if we could assess them accurately in that fashion, it might show up interesting differences between patients with non-ME chronic fatigue who do respond well to exercise, and patients with ME. If the former group doesn't have circadian rhythm disorders but the latter group does, we've learned something.
  7. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Wow, this article took a while to make it to the print edition.

    At first glance I thought it was a replication of their study. (turns out it was the same paper).

    Patient selection were participants from tertiary care (CBT in this case).

    Perhaps mild CFS patients are those that are typically seen in CBT clinics, with more severe patients declining (being unable to attend etc.).
  8. Sean

    Sean Senior Member

    Er, not sure this true.
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Andrew Lloyd one of those who did this study is quite well known. (Id say maybe the closest well known Aust ME/CFS specialist to Englands Wessely). He's one who has made a big impact on the ME/CFS in australia.

    (I think he's done some CFS studies with the CDC too or maybe with Wessely as well. I know Ive seen his name connected with other big names in other parts of the world. There is a group of people working together to control the CFS field and this guy is one of biggies of that group, the Aussie representive of it)

    He advocates CBT and GET. Ive was very annoyed at one point to see one of his articles with mentioning those and treatment with those, in one of the journals put out one time by one of the Aussie ME/CFS societies.

    He's obviously a CFS doctor and not one who is dealing with ME people. Any study he's putting out probably dont have much relevence to ME people at all. The fact the ones in this study had activity levels equal to the control group.. says it all.

    These would of probably all been patients able to do GET.

    I do think ME/CFS criterias for this illness (if there remains insistance to keep the illnesses together) ..should all state that the person is unable to have a normal activity level. (in which then would rule all those patients who can, who are getting thrown into CFS studies .. out).


    edit Andrew Lloyd is seen by some as
    "three of Reeves' most frequent collaborators (Andrew Lloyd, Wessely/Cleare at King's College, and James Jones) propose very similar models for the illness, models that emphasize a viral/lifestyle/emotional stress as the precipitating factor, with brain/behavior as the primary perpetuator."

    so obviously my memory is being right and I have seen him doing study with CDC before..
    I'll try to find his Wessely link now and add that. I know Ive either read a joint Wessely/Lloyd published comment to anothers study or read a study they did together.

    Im quite confused now..

    "Fukuda K, Straus S E, Hickie I, Sharpe M C, Komaroff A, Schluederberg A, Jones J F, Lloyd A R, Wessely S, Gantz N G, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994;121:953959. [PubMed]"

    Im finding the following quote above referenced in many places eg many studies use it as a reference for their study eg which appears Wessely and Lloyd worked together on the thing mentioned quoted.. but when one looks for it on pubmed now.. Wessely and Lloyd arent mentioned on it!!. (could there be a cover up of how involved they have been in ME/CFS field????)

    So I went and looked up the actual journal to try to find outbut the journal for the year 1994 isnt online .

    So what the heck is going on with this journal thing (is this the same journal which wessely was on its board or something or was that a different journal? surely they wouldnt stop journal publications from being put online due to some kind of past coverup of whatever they've said???) ..

    did Lloyd and Wessely work together on that CFS guide which made the Annual of Internal med journal or not? (have they been pulled out of being the authors, to hide their involvement or something? Why are they in so many references online for it in which includes them??).

    Does anyone know of where the following article can be read properly so we can see if they worked on this together or not. What is going on?? Could someone into the whole ME/CFS conspiratory check this out? are their names being taken off of pubmed (lloyd and him are missing) to hide they were involved in publishing?
  10. Doogle

    Doogle Senior Member

    That's the Fukuda 1994 definition. Wessely and Lloyd were only part of the working group.

    Full text:

    The main authors listed for this paper are:
    Keiji Fukuda, MD, MPH;
    Stephen E. Straus, MD;
    Ian Hickie, MD, FRANZCP;
    Michael C. Sharpe, MRCP, MRC Psych;
    James G. Dobbins, PhD;
    Anthony Komaroff, MD; and
    International Chronic Fatigue Syndrome Study Group.

    I don't know why your citation has Wessely and Lloyd listed in the lead group.
  11. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    When I talk to long term patients I hear a lot about circadian problems. Newer patients tend to not have these, and milder patients don't either. Furthermore these problems appear to manifest starting 3-10 years after onset, so that its likely they are secondary and not directly causal. So what this study appears to say to me is they had newer patients of lower severity, or a lot of misdiagnosed patients. Given that the exercise level is far higher than most CFS patients, I think it fair to say they are poorly characterized at best. They certainly resemble no CFS group I have ever met.

    To give an example from my own case history, during a time when I was only a low-moderate patient I was able to push myself to do one and a half hours of exercise per week, and by the end of week two I had crashed my health. This happened a number of times. As a hi-moderate patient I think 5 minutes is a big exercise session, and mostly I would class myself as an activity avoider these days - most of my activity is online now.

    As an added complication sleep apnoea was an exclusion criteria, yet we know that it occurs in up to half of all patients. This is so common that excluding patients with apnoea will severely distort the results, even though I know they probably did this to avoid the apnoea data from skewing results. One of the things really needed in research is to include patients and subgroup them - in this case the CFS+apnoea patients would have formed a completely separate subgroup.

    When are they going to start studying long term and severely ill patients? When are they going to use subgroups? When will one of these subgroups be devoted to ME patients?

    They also mentioned a tertiary care clinic using CBT and GET. Is this just for research or is it, as they imply, a standard treatment approach somewhere?

    CBT/GET have failed by every criteria that I consider important, I cannot see any evidence for promoting these approaches that stands up to scrutiny. Its disappointing to see research along these lines in Australia.

    Bye, Alex
  12. HowToEscape?

    HowToEscape? Senior Member

    Alex -

    I was unable to digest the whole of the study summary provided here in the time I have (before being sick I could read a set of dead dull tech manuals and pick out the errors while learning the material).

    Do you believe it uses an invalid definition of the disease, an overly broad one, or a circular setup? By circular I mean "find a group of patients who look like a nail, conclude that the hammer we have is the right tool".

    There must be a way to register calm but forceful critiques of this type of thing.

    Is it uncommon in medicine to attempt to study an issue where the definition isn't understood, or is controversial? The words "Chronic Fatigue Syndrome" are sufficiently vague and misleading that they can be plausibly tacked on to a great variety of people. It also seems that medicine does not know what the root dysfunction is (and I'm guessing it is not one thing in each person over time nor the same underlying dysfunctions in the collection of us with what we think are similar symptoms).
    So studies like this
    - don't know what they are studying - causes
    - don't clearly define symptoms for inclusion - effects
    - don't look for the odd symptoms we have eg 5 hours of sitting around, talking and listening without a break to be horizontal can trigger a much longer crash than 15 min of exercise at 80% of max heart rate, or that the same impulse has dramatically different effects in the same person depending on how severe their disease state is when tested

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