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Spanish petition: Retiren la Guía del INSS para Fibromialgia, SFCem, SQM y EHS

Discussion in 'Petitions' started by Andy, Apr 7, 2019.

  1. Andy

    Andy Committee Member & Outreach

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  2. Aroa

    Aroa Established Member (Voting Rights)

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    Recently our Social Security has published a ME Manual.

    This serves as a guidance for the Spanish doctors who have to evaluate if the Me patient is suitable for work.

    Among other nice things it states :

    “Cognitive behaviour therapy and Graded Exercise Therapy have shown to be very effective in order to help patients to go back to work in cases of absentism” (p.73)

    http://www.seg-social.es/wps/portal...56/47075/7ecbb7ec-8875-4ddc-a786-2777ed1127ec

    It also includes somatomorphic disorders among these diseases :cry:

    The purpose of this petition is to remove this Manual
     
    Last edited: Apr 7, 2019
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  3. Andy

    Andy Committee Member & Outreach

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    Brilliant, thanks Aroa :)
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    petition seems to have the backing of a number of specialists


    (note on her twitter feed re tweeting of IiME)

    eta: firma la peticion = sign the petition
     
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  5. Aroa

    Aroa Established Member (Voting Rights)

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    Last edited: Apr 7, 2019
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    looks like you could do with a David Tuller.
    @dave30th how's your spanish?

    @Aroa

    maybe you could suggest they contact Jose Montoya?
    contact details:
    Alyssa M. Aguilar Admin for Dr. Jose G Montoya aalyssa@stanford.edu
     
  7. Andy

    Andy Committee Member & Outreach

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  8. Inara

    Inara Senior Member (Voting Rights)

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    Signed.
     
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  9. MeSci

    MeSci Senior Member (Voting Rights)

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    Me too.
     
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  10. Notjustfatigue

    Notjustfatigue Established Member

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    @Aroa Thank so much for the job.

    Today i have waken up feeling really bad and i have to prepare some summary from lots of analytics results and medical tests as well as my symptomatology for the last two years and many details about my crappy health status and need to try to rest as much as i can, as i am on Thursday morning i am travelling to Barcelona precisely to visit one the Docs who has backed it, but i can give some contacts i have, in order you (or someone else) could contact them and ask for support. It would be nice to translate to english the petition to gather support to professionals so it would be easier to them to fill the request form.

    It would also be good to make a short summary of the Guide INSS´s, so that they can have a little more information. As soon as I recover completely from the accident after the trip, I will assist as much as I can.

    I think it would also be good thing to refer to the fact that Fernández-Solà, Eva Mª Martín and García Quintana have supported the initiative, given that they are professionals who are well known internationally by their colleagues.


    Jose Montoya: gilberto@leland.stanford.edu


    Lucinda Bateman: lbateman@batemanhornecenter.org


    Derya Unutmaz: derya.unutmaz@jax.org


    Mady Hornig - mady.hornig@columbia.edu


    Ian Lipkin - wil2001@columbia.edu


    Bruce Goldman (just a scientist journalist from Stanford but we is the one who writes press releases for Montoya I know it will reach to him) - goldmanb@stanford.edu


    Mark Davis - Alternative contact: Rick Cuevas
    Rick Cuevas (Administrative Assistant): rcuevas@stanford.edu


    Chronic Fatigue Initiative (it could get to Klimas, Bateman, Peterson, Levine, Lipkin, etc): info@CFInitiative.org


    Michael Sikora: mjsikora@stanford.edu


    Yarred Younger: younger@uab.edu


    Peter Rowe: prowe@jhmi.edu


    Robert Naviaux: naviaux@ucsd.edu


    Kenny DeMeirleir: Kenny.De.Meirleir@vub.ac.be


    Gordon Broderick: gordon.broderick@rochesterregional.org


    Roberto Patarca Montero: rpatarca@pol.net


    Lubov Nahtanson: lnathanson@nova.edu


    Raeka Aiyar: aiyar@embl.de


    David Tuller @dave30th : davetuller@berkeley.com



    Best, :hug:
     
    Last edited: Apr 7, 2019
  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Signed
     
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  12. Notjustfatigue

    Notjustfatigue Established Member

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    FYI: Some of the docs that have supported our petition:


    Joaquim Fernández-Solà: Memer of International Society of ME/CFS

    https://www.ncbi.nlm.nih.gov/pubmed/?term=Fernández+Sola+J[Author]+AND+fatigue

    https://www.researchgate.net/profile/Joaquim_Fernandez-Sola

    Ana Mª García-Quintana (she has published with Jesus Castro and KDM among others)
    https://www.ncbi.nlm.nih.gov/pubmed/?term=Garcia+Quintana+A[Author]+AND+fatigue

    https://www.researchgate.net/scientific-contributions/2007324058_Ana_Garcia-Quintana

    Eva Mª Martín-Martínez: Member of European Clinician Expert Group for ME/CFS

    https://www.ncbi.nlm.nih.gov/pubmed/?term=Varied+Presentation+of+Myalgic+Encephalomyelitis/+Chronic+Fatigue+Syndrome+and+the+Needs+for+Classification+and+Clinician+Education:+A+Case+Series


    Please, sign the petition in Change.org and spread it via social networks and send the backing formulary for professional to all the ME medical staff (medical, nursing, psychologyst, etc)

    Critically important for us, Spanish ME community.

    Thanks all!!!
     
    Last edited: Apr 8, 2019
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