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Papers you can take to your doctor.

Discussion in 'Information and Resources' started by Dr.Patient, Jul 31, 2015.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Can people post links to the most useful papers on mecfs that patients can take to their doctors? Like how "CBT/GET" are harmful, etc. Or papers that prove the physical, organic illness,etc. Or anything major being done in research, etc.

    The goal here is as long as doctors are accessing inaccurate, outdated, information as in Uptodate, for e.g., they will not be able to help us.

    Papers or News from prestigious universities, or high-quality journals are much better than obscure ones.
     
  2. A.B.

    A.B. Senior Member

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    The IOM report has everything you need. It's a large collection of relevant biomedical research, reviewed by a committee from a prestigious institute.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    There have been threads on this topic in the past. Have a look.
     
  4. charles shepherd

    charles shepherd Senior Member

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    I'm afraid that this offer can only apply to the UK due to the high cost of doing so:

    We can send a copy of the MEA purple booklet to any GP surgery in the UK - free of charge

    This booklet summarises and references (over 300 research and clinical trial papers are listed) all the key research evidence in relation to:

    Nomenclature

    Epidemiology

    Research findings

    Clinical assessment: History - Examination findings - Investigations - Differential Diagnosis

    Management:

    Symptomatic relief for pain, sleep, orthostatic intolerance etc

    Drugs aimed at the underlying disease process - Rituximab etc

    Other aspects of management - disability aids, education, employment, energy management and pacing, pregnancy etc

    Children and adolescents

    Severe ME/CFS

    Prognosis and quality of life

    MEA purple booklet:

    http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Since my doctor decided to get on the "GET" bandwagon I sent him links to a bunch of articles of how exercise affects us. Here ya go:

    1. Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up.
    http://www.ncbi.nlm.nih.gov/pubmed/21234629
    "At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL."

    2. A review on cognitive behavorial therapy (CBT)
    and graded exercise therapy (GET) in myalgic
    encephalomyelitis (ME) / chronic fatigue syndrome
    (CFS): CBT/GET is not only ineffective and not
    evidence-based, but also potentially harmful for
    many patients with ME/CFS

    https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

    3. Immunological Changes After Both Exercise
    and Activity in Chronic Fatigue Syndrome: A Pilot Study

    https://niceguidelines.files.wordpress.com/2015/01/white-jcfs-2004.pdf

    Digested and summarized by Dr. Speedy ("About Dr. Speedy: I am a doctor. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak") HERE:

    http://niceguidelines.blogspot.co.uk/2011/03/pace-trials-prof-peter-white-exercise.html

    4. Prolonged Abnormal Effects of Exercise in Myalgic Encephalomyelitis and Chronic
    Fatigue Syndrome
    http://www.jacobspublishers.com/images/Physiotherapy/J_J_Physiot_Exerc_1_1_001.pdf

    "Exercise, especially exercise programs, has various beneficial health effects. However, in the case of Myalgic Encephalomyelitis and chronic fatigue syndrome physical exertion can induce prolonged negative effects on the patient’s condition (post-exertional “malaise”).

    The exacerbation of symptoms after exercise can plausibly be explained by exertion-induced abnormalities in ME/ CFS. In order to unravel the pathophysiology and to protect the patients’ from iatrogenic harm of exercise regimes, it is essential to asses and diagnoses patients objectively."

    5. Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial
    http://www.bmj.com/content/350/bmj.h227/rr-10

    6. Australian Researcher Challenges Measures of "Recovery" in PACE Trial
    http://cfstreatment.blogspot.ie/2015/01/australian-researcher-challenges.html#sthash.bmmt0iZc.e2e3nZ3D.dpuf

    7. Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation
    http://niceguidelines.blogspot.com/2012/12/revalidation-update-why-doctors-who-use.html

    "10 years ago, the Belgian government opened their five treatment centres for ME/CFS, the so-called reference centres, to cure 70% of ME/CFS patients with CBT and GET as that is what the Belgian Simon Wessely, psychiatrist Prof. Dr. Boudewijn Van Houdenhove, and his Nijmegen colleagues have been saying for decades.
    The Belgian government invested a lot of money, €15 million, but they also reviewed things regularly.
    Each review showed that CBT and GET were making things worse.
    So, the centres got more time, and more money to improve things.
    And after 10 years of treating ME/CFS patients with CBT and GET in five Belgian government centres, it is now crystal clear that CBT and GET make things worse in ME/CFS, which means that CBT and GET harm ME/CFS patients."
    For the full story see http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers

    8. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - 53 pages!

    https://niceguidelines.files.wordpress.com/2011/12/fall2011-kindlon-harms-paper-59-111.pdf
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    alkt likes this.
  7. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Has the MEA considered making an e-book version? (It could just be a pdf)

    I suspect a lot of patients would be willing to pay a few dollars for this, particularly if the money went to research, or to supporting the MEA .
    Those in other countries could then easily print it out and take to their doctor.

    And how often is this updated? Ie - does it cover the IOM report and research findings from this year?
     
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  8. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    There is also this clinician guide:
    http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
     
    mango likes this.
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Your doctor will likely like this best of anything else available, as it is produced and reviewed by a well-known organization. So the doc will assume they know what they are talking about.
    iom.edu/mecfs
    (points to: http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx )
     
    Last edited: Aug 3, 2015
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  10. charles shepherd

    charles shepherd Senior Member

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    1 Yes - an e-version pdf of the MEA purple booklet is something we are considering for the 2015/2016 edition. This could be added to the MEA online literature shop on the website.

    2 We already have a quite a large number of overseas sales. Overseas versions have also been produced and distributed

    3 I update the content every year, or every two years

    4 Copy for the 2015/2016 edition, which will include a summary of the NIH and IoM reports, is almost ready. We are aiming to have the 2015/2016 edition ready in late September or early October.
     
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  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    One more to add:

    The PACE Trial Invalidates the Use of
    Cognitive Behavioral and Graded Exercise
    Therapy in Myalgic Encephalomyelitis/
    Chronic Fatigue Syndrome: A Review

    Journal of Neurology and Neurobiology

    Mark Vink
    Family Physician, Soerabaja Research Center, Amsterdam, The Netherlands
    Published date:
    30 Mar 2016
    https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-2-124/JNNB-2-124.pdf

    Note that this was published in a peer-reviewed journal. It was done even before the reanalysis by Alem Mathees took place.
     
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