1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 22, 2013.

  1. alex3619

    alex3619 Senior Member

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    I haven't personally checked the recovered versus the severely disabled - so while suspecting it was right, I wasn't willing to say it. It would be nice to nail down the criteria for each in a single short article, showing again just how ludicrous the PACE trial was, and especially the media and medical response to it. How can rational people not pick up on this stuff?
     
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  2. Dr Neil Coulson

    Dr Neil Coulson

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    Hello everyone,

    I wanted to provide an update on progress and to seek your input into the study development.

    By way of an update

    Since I last posted I have been working on the development of the online survey that will form one part of the two part project (outlined in earlier posts). I am at the point where I am deciding what measures to include in the online survey and for this I thought it would be helpful and transparent to seek your input. The survey thus far includes:

    - background details about respondents
    - use of the PR forum (e.g. joining, no. of messages)
    - motivations for using the PR forum
    - open ended questions about online experiences of the PR forum

    THEN

    I intend to use a series of validated measures to tap into various cognitive factors and relate these to some of the variables included above. From chatting to Mark I understand that there is a range of experience and familiarity with some of these measures and I thought it would be helpful to list those that I am proposing to include (in addition to those above) but to seek suggestions from the membership of any other measures that people might feel useful. At the end of the day I would like to examine whether participation in the PR forum is related to any measures of well-being (broadly defined) and this has informed my choice of measures so far.

    Measures to be included

    CFS Illness Perception Questionnaire
    HADS - a measure of anxiety and depression
    Life Orientation Test - a measure of optimism
    Brief Cope - a measure of coping

    AND SUGGESTIONS FOR ANY OTHER IMPORTANT MEASURES??????

    At this point I wondered if any members with views on any other measures that might be relevant could suggest them to me? I have ideas but I would really like to engage with you and find out from your own past experiences any measures that you have worked with, read about or you are aware of that would be useful. I am also conscious of survey length so will have to make a judgment call if several are suggested but it is important to me to include measures that are validated, are understandable to members and the wider academic community and which tap into salient aspects of the CFS/ME experience (and which may be related to participation in the PR forum). I'd welcome your thoughts - either on this forum or directly via email if that is easier (neil.coulson@nottingham.ac.uk).

    Once confirmed - I then apply for ethics approval from my Institution and then when granted we can go live with the survey.

    I look forward to hearing from you and many thanks in advance - I truly appreciate your time.

    Best wishes to all,

    Neil
     
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  3. peggy-sue

    peggy-sue

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    There are, I believe some problems with the HADS questionnaire (and other depression q.s too) - I read some folks' very astute comments in a thread here not long ago...

    things such as; "Do you enjoy ... as much as you used to?"

    cannot be answered without proper interpretation.

    We cannot do the things we used to enjoy, because of being sick - so the honest reply is "yes" which gets interpreted as "depressed" - not taking into consideration that we don't enjoy them simply because we cannot do them any more.

    ps;) I don't have "cogs". I have a brain. What "cognitive factors" were you considering?

    (I'm allergic to Cognitive "science". I am not a dualist.)
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I would like to see some questions on practical benefits obtained from the forums. Some people have received valuable advice on obtaining practical help, access to welfare benefits, ideas for disability aids, etc., and not least information on the latest research and tips on diet, supplements, etc., that have produced actual physical improvement, not just improvement in perceptions. People may have been able to increase their activity, to get out and about after being bedbound/housebound, even perhaps start working again. That's the sort of thing the vast majority of us are aiming for - real, tangible health improvement - and some of us have obtained it.

    We also get the chance to participate in actions that may improve the (lack of) help that is offered in the 'real world', e.g. petitions and other forms of lobbying - again, trying to achieve practical goals, not just improve mental well-being (which for many of us is pretty good anyway!).
     
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  5. Dr Neil Coulson

    Dr Neil Coulson

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    Thanks - excellent suggestion. I have some open ended questions to explore how the forum has helped - but might be worth asking specifically about the practical benefits. Great idea - ta much, Neil.
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Thought of another - people notify each other of clinical trials, and a lot of people are clamouring to take part in these, and succeed in getting onto them, thus potentially both helping themselves directly and helping others by furthering scientific understanding.

    Thinking about the benefits that this community brings in such a focused way makes it seem incredible to me that anyone could think that such communities could be a bad thing!
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    First and foremost, thank you so much for engaging with us and actually asking :thumbsup:
    I can't say I like this questionnaire. It's sole purpose seems to be to proving that what we believe about the causation of our illness, and how long it will last, somehow affects our level of disability. Even the website for that questionnaire says: "Illness perceptions have been used to explain . . . . disability in chronic fatigue syndrome . . . ."

    At best it shows correlation (maybe I think my illness will last for years because it has lasted for years?), but it's usually interpreted with a heavy spin in favor of a psychogenic model. So while this questionnaire could probably be used appropriately, it seems like it's almost always used in a biased and unscientific matter.
    HADS does have some strengths, primarily that it's designed for use with sick people and has a relatively high cut off point to account for illness symptoms. However, it is designed for people with relatively acute and simple problems being treated in a hospital setting. Such patients do not usually resemble ME/CFS patients at all, and we get extra points due to having a complex and largely untreated illness where we might have little or no assistance with daily activities.

    1) Simple vs Complex. We have a complex illness, which involves a lot of diverse symptoms, which can limit us in various ways, both cognitively and physically, whereas hospital patients are more likely to have a single limitation. Hence the following questions are likely to attribute excessive points toward a depression diagnosis, even though the cause is purely physiological:
    I still enjoy the things I used to enjoy
    I feel as if I am slowed down
    I can enjoy a good book or radio or TV programme

    I can't do the things I used to do, so how could I possibly enjoy doing something I don't do? I enjoy doing different things now, which still incorporate social and intellectual and fun and outdoor activities. I've just had to drastically restructure what I do and how I do it - which to me does not seem indicative of depression. I used to read voraciously, but now it gives some sort of messed up brain-crash if I spend a couple days reading a novel. I can handle research papers, but the good books are few and far between. TV can be hard to process now, unless it's something I've seen before.

    2) Treated vs Untreated. We are usually not being treated for many of our issues, such as pain, unlike someone with an acute issue in a hospital. This will likely impact on questions such as:
    I can sit at ease and feel relaxed
    I feel cheerful
    I look forward with enjoyment to things

    3) Hospital vs Home. We are not getting the assistance which we would be in a hospital, such as being assisted as needed. This results in struggling just to handle basic activities, such as getting to the bathroom or getting something to eat. Hence some questions seem rather inappropriate, such as:
    I have lost interest in my appearance
    Worrying thoughts go through my mind

    Wouldn't you be worried if you couldn't take care of yourself? Would you put much effort into applying make-up when you struggle just to get to the bathroom? If you were in a hospital and being assisted with whatever disability you have, then no problem! But what about patients who are alone at home and can't do a load of laundry without triggering a crash?

    4) Acute vs Chronic. We've usually been ill and disabled for years. This might cause depression on its own, but this questionnaire won't be able to distinguish it from physical and cognitive ME/CFS symptoms, because it already equates depression with physical and cognitive limitations.


    All of that being said, the HADS probably can be used appropriately with ME/CFS patients, if the usual cut off point is ignored and we are compared to other groups of patients with recognized non-psychological chronic and complex illnesses as a reference point. This has been done with MS patients in the past, but I believe the current fad is to use their HADS score to "prove" that MS patients all have psychological problems. Using HADS on ME/CFS patients in an appropriate (ME-sensitive and non-chaotic) medical environment would also help to offset some of the problems seen in applying it to untreated ME patients at home.

    A few papers taking a critical look at the HADS, the last two specifically in the context of CFS:
    http://share.eldoc.ub.rug.nl/FILES/root2/1997/valistoft/Spinhoven_1997_Psychological_Medicine.pdf
    http://share.eldoc.ub.rug.nl/FILES/root2/2012/HospAnanD/Coyne_2012_J_Psychosom_Res_2.pdf
    http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0008/64979/FullReport-hta10370.pdf
    http://www.tandfonline.com/doi/abs/10.1080/1354850310001604568#.UlQ7qRAvzox
    These two look great.
    If you want to determine prevalence of mental health problems, I think the SF-36 is quite good since it makes a clear distinction between physical and psychological causation of limitations. The physical and social parts also seem quite good. However the combining of 4 of the subscales into a general "mental health" subscale can be problematic, because that includes (I think) the vitality subscale, which is extremely impacted by physical illness, and the social functioning subscale which also takes quite a hit due to being housebound and cognitively disabled.
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hmmm...I could shorten those depression and anxiety questions for myself to:

    "Are you depressed?" (No)
    "Are you anxious?" (Sometimes, but much less since adopting leaky-gut diet and supplements and since pensions matured!)

    But as others have said, not just here but also elsewhere, the answers can be misconstrued when given by people with fatiguing/physically-disabling illnesses. Not only can we not do some things any more due to lack of energy, there are many that we can't do any more due to lack of money!
     
  9. Dr Neil Coulson

    Dr Neil Coulson

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    Thank you so much for your comments about the various scales. I certainly take your points on board and i am finding this incredibly useful in terms of identifying relevant, meaningful and engaging scales to include in the survey.
     
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  10. Helen

    Helen Senior Member

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    @ Dr Neil Coulson
    Hello Neil,

    I have a question that you might have answered already, but I havenĀ“t been able to find it. What is the aim of the study , described as short and concrete as it has to be in official documents? Is there any official presentation of the study that we could read somewhere? I think it would be of great value before giving comments that might be of some help.

    Thank you so much for giving attention to our group, and I hope you will find what a great forum Phoenix Rising is, thanks to all that taking part behind and in the forum.

    Helen
     
  11. tatt

    tatt

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    I'm not familiar with any of the things you are talking about using but I couldn't sensibly answer any questionaire my doctor has ever given me. Questions about what you can and can't physically do don't take account of the fact that I might be able to do things if I suffer for it tomorrow - and maybe for a week. So is that yes, I can walk down the road or no I can't? As for questions about mood - mood when? If I've just seen a consultant who tells me I'll never get better I'm going to be pretty unhappy - and pretty angry with the medical profession. Note that is unhappiness but not depression, although my doctors seem to want to make the two identical.

    I've recently been diagnosed with a medical condition that means I can't take some of the medication that was improving my health as I'm on a drug which interacts with almost anything. It also has a side effect of suicidal thoughts - are you going to be able to identify comorbidity?
     
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