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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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Another Stupid Study from the UK

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 16, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I'll just briefly get on my little rant. Here's another typical study from the UK; it's on memory retrieval. It's not bad or good its just blah....People are suffering and they're studying....memory retrieval. I wonder how much this study cost?

    Just think of how much further they would be if they did a little physiology. Jeez.

    : Cyberpsychol Behav. 2009 Jul 10. [Epub ahead of print] Links
    An Assessment of Prospective Memory Retrieval in Women with Chronic Fatigue Syndrome Using a Virtual-Reality Environment: An Initial Study.

    Attree EA, Dancey CP, Pope AL.
    1 University of East London , United Kingdom, School of Psychology.
    Abstract People with chronic fatigue syndrome (CFS) have increased rates of depression, anxiety, and illness intrusiveness; they may also suffer from cognitive problems such as retrospective memory (RM) deficits and concentration difficulties that can stem from diminished information-processing capability. We predicted that this diminished capacity may also lead to deficits in other cognitive functions, such as prospective memory (ProM). Event-, time-, and activity-based ProM was assessed in 11 women with CFS and 12 healthy women using a computer-generated virtual environment (VE). RM was assessed using a free-recall test, and subjective assessment of both ProM and RM was assessed by questionnaire. Groups were equivalent in age and measures of IQ. People with CFS performed slightly worse than healthy controls on both the event- and time-based ProM measures, although these were not statistically significant. However, the CFS group performed significantly worse than the healthy controls on both the free recall-task and on subjective assessment of both RM and ProM. Women with CFS do have some subtle decrements in memory, particularly RM. However, it is possible that the decrements found in the present sample would be greater in real life. Further studies utilizing both healthy controls and illness controls are now needed to ascertain how sensitive the VE measure is and to inform the development of tasks in the VE that place progressively increasing demands on working memory capacity.
  2. Jody

    Jody Senior Member

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    You gotta shake your head about studies like this.

    They really have no clue.

    Nothing against the UK, I've heard good things from people there who've gotten better treatment for CFS / ME than many of us here in North America.

    But alot of these researchers really make me scratch my head. Maybe they need to meet some of these sick people as real people and see if it changes any of their priorities.
  3. Jody

    Jody Senior Member

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    ChronicallyF,

    You're welcome.:D
  4. Enid

    Enid Senior Member

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    Rant on Cort - this is about as pathetic as things can go here.
  5. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    If they carry on like this they will only end up proving that ME really does affect the brain/neurology, why we quite legitimately receive incapacity benefits and why any employer would be hard pressed to think of a good reason to employ us.
    They conclude that ME/CFS patients (female ones mind you!) do indeed have more difficulty with memory - isn't that just one of the symptoms we've already been telling them about?
    "The CFS group performed significantly worse than the healthy controls." No argument with that.
  6. Sunshine

    Sunshine Senior Member

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    Hi Jody, please can you let us know what kind of treatment that you've heard people get that is beneficial to them? I ask, as the UK runs an exclusive system of psychiatric management for CFS/ME, mainly CBT/GE/Pacing and psychological rehabiliation for alleged universal 'faulty illness beliefs' all through it's state healthcare programme, the NHS.

    Antiviral medications and testing for autonomic nervous system dysfunction is prohibited in the 2009 NICE guidelines on CFS/ME treatment under the NHS, as are brain scans. Referal to consultant specialists such as immunologists, neurologists, haematologists, cardiologists etc are also discouraged.

    There are 8 state funded beds in the UK at Queens hospital, Essex for 250,000 people with CFS/ME in the UK. Here the regime is the same, psychological management and medications for sleep dysfunction only.

    I am thus genuinely intrigued where people would go in the UK that you mention, and what treatment they would receive that is apparently beneficial to them?

    Thank you for any information.
  7. oceanblue

    oceanblue Senior Member

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    pathetically smalll sample so irrelevant finds and as ever 'further studies are required'. In a sane world such papers would be rejected with advice to authors to wait unitl they've designed a worthwhile study and have foud someothing worth reporting before they attempt to publish.

    Blah indeed, Cort.
  8. Sherby

    Sherby Sherby

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    There are 8 state funded beds in the UK at Queens hospital, Essex for 250,000 people with CFS/ME in the UK.

    I was an inpatient there 15 years ago when they had 4 beds. 4
    extra beds in 15 years thats going good.
    Just think that in another 15 years they might have half a ward. You got to be impressed with that.
  9. Dolphin

    Dolphin Senior Member

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    But it's largely non-pharmacologic treatments with maybe a bit of symptom relief as I understand it there.
    Even if there were thousands of inpatient beds, I want more than that in my lifetime.
  10. Dolphin

    Dolphin Senior Member

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    Study

    I'm away so don't have my notes. While I'm not saying I found the paper particularly exciting, I don't recall being particularly annoyed by it. There are plenty of studies from the UK that are far worse e.g. saying CFS is like anorexia, saying CFS patients pay selective attention to health information, ...
  11. Marco

    Marco Old blackguard

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    The research funding crtiteria probably highlighted issues such as womens' health, social exclusion and emerging technologies as funding priorities.

    All boxes ticked - result then!

    Next stage. Memory recall deficits in ethic minority women with CFS assessed using a wind powered virtual role play scenario (wireless) - or something.
  12. Mark

    Mark Acting CEO

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    Oh yes, that's a constant - further studies are always required.

    No matter what field of study, it seems, that's a given, the most important 'finding' of all - most important to leave as many questions unanswered as possible, so the paper can be cited as evidence in support of another bid for cash. What gets me is how that cut-and-paste line makes it into every press article, like it's telling you some piece of useful information. Always think to myself "hmm...they would say that, wouldn't they?..."
  13. Trooper

    Trooper Senior Member

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    Haha, what is this all about? Next time my ME/CFS really flares up I can legitimately say "Ooo my illness is intruding again"

    *rolls eyes*
  14. Dolphin

    Dolphin Senior Member

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    Apologies for being argumentative but I found those studies on illness intrusiveness of interest. It's like a quality-of-life measure - shows that the illness intrudes into our lives more than most other conditions.

    While I prefer biomedical research, if there are to be psychological studies, studies on memory and illness instrusiveness are much more preferable to me than "pejorative"/"blaming" studies.
  15. Min

    Min Senior Member

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    Their 'further studies' might as well consist of looking up their own fundaments for all the good this rubbish does for those of us with neurological M.E.
  16. Trooper

    Trooper Senior Member

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    Hi Dolphin, no worries, it's not a term I have heard before - it just sounds wierd to me. :Retro smile:
  17. Athene

    Athene Never give up

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    The University of East London???? Pah!
  18. Mya Symons

    Mya Symons Mya Symons

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    Na, they will just say the memory/cognitive problems are caused by depression or some mental disorder. My sister-in-law, who also has this this disease, went to one doctor who diagnosed her with early onset alzheimers; then, she went to another who told her she was just depressed and possibly bipolar. He prescribed serequel and triliptol. She has never had any manic episodes. These meds made her memory and concentration problems much much worse. I happened to have gone to the same doctor for two appointments several months ago. He had a med student intern who was at one of my appointments. After the appointment I went to the desk to make another appointment. He thought I had left. I overheard him say to his intern the following: "Some doctors think Fibromyalgia and Chronic Fatigue Syndrome have neurological and immune symptoms. I don't think this is true. I prescribe them the lowest dose possible of pain killers and they believe it is working." I did not make another appointment. Why don't doctors close their doors when they talk to eachother? And, if researchers and doctors believe in this psychosomatic bs, why don't the researches do more physiological type experiments to rule out psyiological causes to attempt to prove that they are correct? So many of the experiments are like this one. They research the symptoms, but not the cause of those symptoms, especially any pysiological symptoms. Do they not care or are they fearful that they have been wrong all these years?
  19. Dolphin

    Dolphin Senior Member

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    Here's one example:
    Full text at: http://freespace.virgin.net/david.axford/me-explr.htm
  20. Dolphin

    Dolphin Senior Member

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    I don't know too much about the individual researchers here but have heard that a few of the psychologists who have done research in UEL have/had M.E. themselves.
    They're not virologists, for example, so there is only so much they can do.
    They may feel there is a value in this study for example in terms of helping people learn - when I was studying, I would have been interested in things that would help me learn and remember.
    Also there might be/have been (I'm very ill now so unable to work) some careers that would not be suitable or would be more difficult because of specific cognitive impairments. Similarly some courses might be more difficult with certain cognitive impairments. One of the parts of the education system I was in involved learning off poems - I found that very difficult to do post-ME (undiagnosed) and would have avoided college courses that might involve that sort of task.

    Another problem for researchers is that they don't necessarily have limitless budgets.
    And in the ME/CFS area in particular, not that much has been raised privately - so many people and their families don't give any money to research (esp. pre-WPI) and there isn't as much fundraising as there is for some conditions. Not all these people are "totally broke". I'd like to see, for example, people give 1+% of what they spend on treatments.

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