Post Viral Fatigue Chat & Forum

My recovery story from Post Viral Fatigue / Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / ME / CFS

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  1. #1
    Senior Member
    Join Date
    Feb 2010
    Posts
    812

    <span style="color:#FF0000"><span style="color:#000000">............................ .................................................. .................................................. ............................................</span><b>[YOUR ADDRESS]</b>
    <span style="color:#000000">
    .................................................. .................................................. .................................................. ........................<b></span> [THE DATE]

    [GP’S SURGERY]</b>
    </span>
    Dear <b><span style="color:#FF0000">[GP’S NAME]</span></b>

    I am writing to you with regards to the appointment I had with you on<span style="color:#FF0000"> <b>[DATE/S]</b></span> regarding the CFS/ME illness I am currently suffering.

    I have been unwell now for<span style="color:#FF0000"> <b>[DURATION OF SYMPTOMS]</b></span> and suffer with the following symptoms regularly<span style="color:#FF0000"><b> [LIST OF SYMPTOMS]</b></span>

    When I came to see you…
    <span style="color:#FF0000"><b>[BRIEF DESCRIPTION OF WHAT HAPPENED]</b></span>

    <span style="color:#FF0000"><b>[IDEAS:</b></span>
    *You dismissed the symptoms I am suffering and acted as if you did not believe in CFS/ME despite it being a recognised condition and having precise NHS NICE Guidelines which healthcare professionals within the UK are required to adhere to.

    *You implied that the condition was Mental Health related despite my symptoms following a clear pattern which fits with a CFS/ME diagnosis and provided me with no support on how to manage the condition, despite CFS/ME being a recognised condition and having precise NHS NICE Guidelines which healthcare professionals within the UK are required to adhere to.

    *You provided me with a lack of support and advice about how to manage the many symptoms of a chronic condition which is affecting my life greatly and could possibly stay with me a long time despite CFS/ME being a recognised condition and having precise NHS NICE Guidelines which healthcare professionals within the UK are required to adhere to.<span style="color:#FF0000"><b>]</b></span>

    <b>The NHS NICE Guidelines for CFS/ME were created in August 2007 because it was recognised that not enough support was being given to patients with this condition by healthcare professionals:</b>
    “In the past (people with CFS/ME) needs have been too often overlooked and this situation needs to change… the illness is poorly understood. There is no accepted theory about its cause or causes and the symptoms can be diverse…therapies are few and far between…These factors have meant that people with CFS/ME have sometimes been unable to obtain suitable care. In developing the guideline, we kept in mind the overall goal of improving care for people with CFS/ME, that is, improving diagnosis, enabling patients to receive therapy appropriate for, and acceptable to them, and providing information and support, with the patient‘s preferences and views firmly driving decision-making… We strongly recommend the same practical and pragmatic approach to professionals and patients themselves.” (Professor Richard Baker, Chair, NICE Guideline Development Group, 2007)
    <b>
    The NHS NICE Guidelines state that CFS/ME is an illness in which: </b>
    The patient has persistent or recurrent fatigue, unexplained by other conditions, resulting in a substantial reduction in activity level, characterised by post-exertional malaise and accompanied by one or more of the following (which may fluctuate in severity and change in nature over time): Difficulty sleeping, muscle and/or joint pain, headaches, painful lymph nodes, sore throat, cognitive dysfunction, malaise, dizziness, nausea, palpitations. (NICE, 2007)
    <b>
    The NHS NICE Guidelines state that healthcare professionals need to give the following support to patients with CFS/ME:</b>
    *A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for 4 months (adult), 3 months (young person).
    *Advice should be given on symptom management which should not be delayed until a diagnosis is established. This advice should be tailored to the specific symptoms the person has and be aimed at minimising their impact on daily life and activities.
    *Referral to specialist CFS/ME care should be offered within 6 months of presentation with mild CFS/ME symptoms, within 3-4 months of presentation to people with moderate CFS/ME symptoms, immediately to people with severe CFS/ME symptoms.
    *Health care professionals should proactively advise about fitness for work and education and recommend flexible adjustments or adaptations to work or studies to help people with CFS/ME to return to them when they are ready and fit enough.
    *The reality and impact of the condition and the symptoms should be acknowledged.
    *Information should be given about about a range of interventions and management strategies.
    *Information should be given on possible causes, the nature and course of CFS/ME.
    *Information should be offered about local and national self-help groups and support for people with CFS/ME and their carers.
    *Healthcare professionals should provide diagnostic and therapeutic options to people with CFS/ME in ways that are suitable for the individual person I.e domiciliary services, or using methods such as telephone or email.
    *A named health professional should be responsible for coordinating care fore each person with CFS/ME.
    *An individual management plan should be developed with the person with CFS/ME (symptoms, history, care, treatment, information, support needs, education & employment needs, healthcare professionals involved in their care)
    *Do not advise unsupervised, unstructured, vigorous exercise because this may worsen symptoms.
    (This is just a selection of points, for full text see NICE, 2007)

    I really value your input and hope that in the future we can work together in helping me to manage this condition and benefit me in my recovery. If you feel that this is not possible, can I ask that you pass me over to a GP within the practice who has relevant knowledge and experience regarding to this condition.

    Yours Faithfully

    <span style="color:#FF0000"><b>[YOUR NAME]</b></span>

    References:

    NICE, 2007. Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children. NICE [online]. Available at: <a href="http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf" target="_blank" rel="nofollow">http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf</a> [Accessed in Sept 2011]
    edited by Helen82 on 9/3/2011
    <em>edited by Helen82 on 9/3/2011</em>



  2. #2
    Senior Member
    Join Date
    Feb 2010
    Posts
    812

    I wrote this because of how many people on here have awful experiences with GPs and do not have the energy to think of or type out a letter.

    It has taken me 2 years to get around to writing this letter!

    Please use it as you like, copy it, change it, print it, send it, but do USE IT!

    Healthcare professionals need to understand what we are going through and how the lack of support impacts us. If we dont tell them nothing will change.

    Take care & Bon Recovery!



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