Been asked to share this Spanish petition on social media but wondered if any of our Spanish speaking members could offer an opinion on the petitions demands i.e. are they the sort of demands that this forum would be likely to support? https://www.change.org/p/instituto-...qm-y-ehs-1bdf1ba3-f125-4612-afd6-8d959f25656a
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 The purpose of this petition is to remove this Manual
petition seems to have the backing of a number of specialists https://twitter.com/user/status/1108422363136344064 (note on her twitter feed re tweeting of IiME) eta: firma la peticion = sign the petition
Patients Associations who made this petition are trying to gather support from professionals (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 There are already some Spanish specialists who have backed it as @Sly Saint said http://confederacionssc.es/?p=26114...RK3q5zYaAiFDMmb4Jy5TrOAd--C3CPnMjomgDXRxRGhw0
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,
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!!!
