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

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
 
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Aroa said:
Patients Associations who made this petition are trying to gather support from profesionals (international ones are welcome)

This is the link for those who want to join it:
https://docs.google.com/forms/d/e/1FAIpQLScMCA_uTX1MdHdb6UAW_BNBK5UW9SAXp61_WVFsfByDPf6v0g/viewform
Click to expand...

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
 
@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:
 
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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!!!
 
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