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The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Jan 3, 2010.

  1. shrewsbury

    shrewsbury member

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    Charles Shepherd's post to co-cure of Dec 12/09



    This systematic review is part of the (UK) ME Observatory research portfolio
    The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review

    Maria de Lourdes Drachler1 email, Jose Carlos de Carvalho Leite1 email, Lee Hooper2 email, Chia Swee Hong1 email, Derek Pheby3 email, Luis Nacul4 email, Eliana Lacerda4 email, Peter Campion5 email, Anne Killett1 email, Maggie McArthur1 email and Fiona Poland1 email

    1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
    2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
    3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
    4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
    5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK

    BMC Public Health 2009, 9:458doi:10.1186/1471-2458-9-458

    Received: 24 July 2009
    Accepted: 11 December 2009
    Published: 11 December 2009

    2009 Drachler et al; licensee BioMed Central Ltd.
    This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

    Abstract
    Background


    We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

    Methods

    We carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.

    Results

    Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.

    Conclusions

    Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.

    ------------------------------------full article>
    Background


    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an idiopathic, long term, multi-faceted, potentially disabling and life-disrupting illness. Its prevalence is at least 0.2-0.4% in the UK[1] There is no specific diagnostic test, and treatment is based on symptom management, aiming to sustain or extend capacity.

    Expressed needs are those identified by people with CFS/ME from their experience of living with this condition (as opposed to normative needs, identified by others)[2] Although in-depth understanding of the perspective of service users is fundamental for evidence based policy and practice, insufficient information exists on the expressed needs of people with CFS/ME [1]. Little has been done to draw together the existing data on these expressed needs to support them in managing their illness and maintaining social participation.

    We present a systematic review of both first hand accounts of the expressed needs of people with CFS/ME (reported in their narratives of own stories) and researcher-mediated accounts of those needs reported in primary research. The objective was to identify, appraise, select and synthesise what is known about the expressed needs of people with CFS/ME.
    .............

    Discussion and Conclusion

    Exploring the commonalities and relationship between the themes raised in the reviewed papers has highlighted several interrelated aspects of the needs of people with CFS/ME in regaining well-being and control over their lives -

    making sense of the illness,

    aligning perspectives,

    managing the illness,

    appraising needs and

    developing strategies for social inclusion and control.

    This review has also identified that many psychological and physical demands can be made on people with CFS/ME and that

    major needs may be largely unmet due to poor recognition of CFS/ME as an illness or of its impact.

    The review has shown that

    the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development,

    thereby exacerbating the impact of the illness in their lives.

    [​IMG]
  2. Kati

    Kati Patient in training

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    I am blown away...Thanks Islandfinn...
  3. starryeyes

    starryeyes Senior Member

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    Thank you for posting out of quotes so it wasn't all Italicized and for bolding the good bits. :)
  4. shrewsbury

    shrewsbury member

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    My pleasure tee. The bolding and spacing is what I have to often do for myself to be able to read something.

    Hadn't realized I had outsmarted the problem with the difficult to read, energy-draining(wasting) italicized quotesl
  5. Nina

    Nina Senior Member

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    Islandfinn, thank you for all your great posts, I really enjoy reading them.

    I found this one particularly interesting, this might in fact be the first time that I heard someone (else than a patient) ask, what M.E. patients need! How good that feels! And what a shame this is not what we get all the time.

    I also found the term "Life-disrupting" illness most accurate, much more so than "disabling".
  6. shrewsbury

    shrewsbury member

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    My pleasure Nina. All I can really take credit for is bringing them over from co-cure for the most part.

    Life-disrupting - or maybe life-changing disease is even better. Basically all aspects of my life were changed, and many parts were just taken away.

    What I like about life-disrupting though is that it maintains a feeling of hope. Yes, my life has been disrupted, ie almost stopped, for x # of years, but once a cure is found for ME/CFS, I can get it back again.
  7. shrewsbury

    shrewsbury member

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    I just found these comments on the research from one of the co-authors in Tom Kindlon's post to co-cure of Dec 17/09
    My bolds throughout.

    Comments from Prof. Derek Pheby (co-author) on "The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review"[/B]

    National M.E Observatory project - first report 15 December 2009

    The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review is the first report from the National M.E. Observatory project to appear in the peer-reviewed scientific literature.

    Project Co-ordinator for the M.E. Observatory research project, Professor Derek Pheby, comments:

    "Assumptions are frequently made, by medical professionals and others about what constitutes a good outcome in ME. All too often the views, hopes and aspirations of people with ME themselves are the last things to be considered. This ground-breaking piece of research rectifies that omission, by bringing together in one report all the published research which does consider the question of what people with ME themselves want and need. It takes a wide approach, looking not only at medical outcomes but also at what people with ME need to enable them to function in the social environment, not only as patients, but also as family members, citizens, and members of the wider community.

    "The report, prepared mainly at the University of East Anglia, is the first report from the National ME Observatory project to appear in the peer-reviewed scientific literature. The Observatory approach, from the outset, has been to place people with ME at the centre of the research process, from the project Steering Committee downwards, and this is the first of a series of reports which are putting that philosophy into practice."

    Read the abstract and provisional version of the review http://www.biomedcentral.com/1471-2458/9/458
  8. Tammie

    Tammie Senior Member

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    I get the need to try to remain positive, but life changing sounds a little too positive, IMO - my life has not just been changed - it has been mostly annihilated by this dd.....life disrupting I can sort of take - it sounds hopeful, but at the same time seems to get SOME of the severity across (although still not really enough....actually, the more I think about it, though, it is not really enough at all - my life has been far more than disrupted for the last 5 1/2 yrs).....personally I don't have a problem with the term disabling, though - this illness has been compared to many others and has been shown to be THE MOST disabling one when it is severe - disabling is accurate, does not down play it, and still does not have to imply permanence (so it can still hold some hope - people can be disabled temporarily or permanently, and can have various degrees of disability)......in my more negative days, I would say life-destroying, life shattering, or life annihilating, though
  9. Mithriel

    Mithriel Senior Member

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    I have worried about the National ME Observatory project, it was difficult to get information on what it was doing but good work is coming from it.

    I like the way you lay out papers. I need to put paragraphs etc into things before I can read them, too.

    Mithriel
  10. shrewsbury

    shrewsbury member

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    Hi Tammie, After reading your post, I've changed my opinion. I was searching for a word that was stronger than life-disrupting and thought life-changing might do it - but think you're right. It doesn't. Maybe we could make up a new use of disabling, life-disabling? Although it's really the person who has become dis-abled, no longer able to do. But, I can't "do" most of my life anymore. Maybe it would work.?

    Hi Mithriel, I'm glad that the Obsevatory Project seems to be putting out valid research. It is worrying when one can't get much info.

    All the little tricks we learn to maximize what we can do and minimize energy-expenditure. I've often thought of writing a book of tips on how to cope with living with ME/CFS (but of course haven't been able to) . Might be a good fund-raiser or just an internet page for the forum to do together!
  11. Mithriel

    Mithriel Senior Member

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    A page of tips (not discussions :Retro smile: we all have so many opinions) could be very useful.

    Over the years I have made all sorts of little changes which make life easier. Some I thought of very late in the day :(

    My OH washes me in the bath while I sit on a stool and it was years before we thought to start at my feet so I wasn't sitting all wet and cold. D'oh. Now I have a nice warm towel round my shoulders, much more comfortable :Retro smile:

    Mithriel
  12. Tammie

    Tammie Senior Member

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  13. starryeyes

    starryeyes Senior Member

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    I like Life-Stealing. That's exactly what happened. ME/CFS stole my life away from me.... most of it, anyway.

    Mith - what is your OH? Your "other husband"? lol

    That's a good idea to start at your feet in the tub when on a shower stool.
  14. Mithriel

    Mithriel Senior Member

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    That would be "other half" Tee, though a second husband who could do the ironing would be useful :Retro smile:

    "Stealing" is a good word. I have been lucky, there is a lot about my life to be thankful for so it has not been destroyed but so many things and opportunities have been stolen.

    I never managed to have a career. Maybe I would have been rubbish, maybe I would have been a success, who knows? My chance to find out was taken from me.

    I can't drive a car. I tried, but my leg wouldn't move when I went to put the brake on and suddenly getting confused about where you are and what you are doing is not conducive to road safety either :(

    I've never had a passport or been on an aeroplane. I can't get to the end of the street so foreign travel was out of the question.

    I wouldn't trade what I have had for any of these, but so many people have had less than me and don't get any sympathy or respect for their courage. Things must change.

    Mithriel
  15. Terri

    Terri Guest

    Islandfinn, thanks for posting this article, it does a good job of addressing our needs. Now, if we could just get this info out to the medical community, family and friends in a way that they would actually hear and use................

    I agree that life changing and life disrupting don't even come close to describing the effects this illness has had, how about "disabling, life-shattering"?

    I think at first I didn't like the term disabling, it's a hard word to swallow when you're dealing with the grief and confusion of having your life taken away. But now I can accept, have to accept, that I am disabled because to do otherwise lets my mind fall into the trap of believing what I know others are thinking (and often saying), (it's all in my head, everybody gets tired, everybody has pain, etc.).

    Using the title of disabled does not mean I have given up, I still have hope most of the time I will get better. In the meantime though I want and need the world to understand that I am disabled and can no longer rise to their expectations of the me they used to know.
  16. SDD1244

    SDD1244 Guest

    "But now I can accept, have to accept, that I am disabled because to do otherwise lets my mind fall into the trap of believing what I know others are thinking (and often saying), (it's all in my head, everybody gets tired, everybody has pain, etc.)."

    Hi Terri,

    Well said. You know I think that sometimes I still fall into the denial trap. It is very difficult to accept this diagnosis and especially knowing what others are thinking and dealing with people who are not supportive because they are ignorant on this condition or just don't care.
  17. Adamskitutu

    Adamskitutu *****

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    Comment on the National M.E Observatory project - first report

    Angela Kennedy has written about this paper in other forums. This paper is not necessarily good news for sufferers:


    "PERMISSION TO REPOST

    This is a comment on one key aspect of the following article:

    http://www.biomedcentral.com/1471-2458/9/458

    National M.E Observatory project - first report

    15 December 2009

    "The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic
    Encephalomyelitis"
    De Lourdes et al...

    In the 'strengths and limitations of the review' section, on page 17 of the provisional PDF, even after providing an account of the impact of the illness on sufferers, including the burdens of disbelief from others, refusal of benefits, social exclusion, and other problems of certain needs not being met (the kind of needs that can reasonably be said to be present in all patients of serious illness, for example?), and presenting such evidence as part of a systematic review at that, the De Lourdes et al paper has this to say:

    "The review has not examined the validity of the expressed needs of people with CFS. One theory links the early parental environment with neurobiological development via the hypothalmo-pituitary adrenal axis, changing stress responsiveness through life in those with CFS/ME (reference cited*) This could potentially result in increased 'neediness' in those with CFS/ME but would not invalidate those needs..."

    (* Editorial by Boudewijn Van Houdenhove, 'Listening to CFS: Why we should pay more attention to the story of the patient' Journal of Psychosomatic Research 52 (2002) 495-499.)

    Van Houdenhove's account is immersed in psychogenic explanations for 'CFS/ME', based on a concept of 'unexplained therefore psychogenic by default', personality problems (including a 'narcisssistic tendency to deny personal limits; a negative perfectionist attitude induced by overcritical parents" etc.) and somatic symptoms as resulting from 'intrapsychic conflict.' (This is only a few examples of the eclectic mix of alleged psychopathology in the patient according to Van Houdenhove: significantly, organic aetiology as an explanation is signficant by its absence.)

    De Lourdes et al then go on to state:

    "As reviewers we have taken the needs expressed by people with CFS/ME at face value - even if their need for support is higher than in others, the needs of people with CFS/ME are expressed very consistently and their accounts of their needs deserve to be heard and responded to."

    This may seem a laudable sentiment, but by assuming, per se and without substantiation, that somehow 'CFS/ME' patients needs are 'higher' than in other patients with serious chronic illness (for example, Heart disease, AIDS, HIV, Motor Neurone Disease, Parkinsons, Multiple Sclerosis, spinal injuries, strokes), rather than the more likely problem that such needs that would be met in those disease sufferers are NOT being met in 'CFS/ME' patients - likely due to 'psychogenic dismissal' (Kenneth Vickery, in Mackarness, 1980: xi-xii) , De Lourdes et al are not actually taking the needs expressed by CFS/ME sufferers 'at face value': indeed they are reifying the very assumptions that lead to psychogenic dismissal and its accompanying material and social inequalities for sufferers. By including the Van Houdenhove narrative, without raising the legitimate and rational objections that could be raised to his arguments, the De Lourdes et al comments have led to CFS/ME patients, once again, being reduced to strange, needy personalities with mean parents, who feel somatic symptoms because they are like that."
  18. gracenote

    gracenote All shall be well . . .

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    Thank you Adamskitutu for bringing this to our attention. This is an important piece of information that I missed in my original quick look at this article.

    And welcome to the forums.
  19. starryeyes

    starryeyes Senior Member

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    De Lourdes et al writes the kinds of papers that make me want to just crawl off into a hole somewhere and die and never bother anybody again or I feel like I should be sent adrift on an iceberg to die like the Inuit used to do with their burdensome elderly.
  20. Katie

    Katie Guest

    I wasn't going to post because I didn't think it was worth it but I saw this top while browsing ASOS sales (yes, the ME chic thread has indeed corrupted me) and thought of this piece of research.

    *was a super huge picture of a girl in a "Love Me" t-shirt*


    Yeah, it's just people with ME who can be needy... yeah... just us freaks... nope, no one else is afflicted... everyone else is secure...




    Sorry the pic is huuuge, I'll leave it up a day then remove it.

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