ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Fibromyalgia: Catalan Government passes Resolution
Monday 9 June 2008
We’ve received a message from Hope4all about Spain’s Catalan Government passing a resolution to “organize health services” for people with ME/CFS/FM:
A FIRST VICTORY IN CATALONIA, SPAIN,
BUT WE CONTINUE...
Barcelona: On May 21, 2008, after a year and a half of hard work, the Catalan CFS/ME and FMS associations reached their first big victory: a Parliamentary Resolution voted by unanimity to organize health services for people with these illnesses. This unanimous vote was only possible because the associations had gathered in 2007 almost 140,000 signatures as part of a Legislative Initiative (for which only 50,000 signatures were necessary).
The process has been a very hard one with, not only the signature gathering, but countless meetings with politicians, associations and organizations, writing documents, educating, press work, etc.
The negotiations with the government have been very, very rough, nasty and intense until the last minute. They were not going to accept the demands as a law but we managed to get them all accepted as a Resolution. A law would have been more binding but it would never have passed. This Parliamentary Resolution has the advantage of having been voted unanimously by all parliamentarians and with full press coverage (live on television on real time), which will make it harder for the government to back down.
It was an exciting day: the Legislative Promoting Commission (half a dozen of us from various CFS/ME and FMS associations who were leading this initiative) was in the Parliament and we presented our demands. That was followed by presentations by all the parliamentary groups and then the vote. And a standing ovation. Outside the Parliament Building there were almost a thousand people, mostly women with CFS/ME or FMS with sings, singing, cheering and celebrating.
These are the main points that the Resolution covers:
- The setting up 11 CFS/ME-FMS specialized units with three of them being research units also (right now there is one that is operating but it has a 3 year waiting list)
- These units will have multidisciplinary teams (internal medicine, rheumatology, neurology, etc and even pediatricians)
- Waiting lists cannot be longer than 90 days to access a unit (a big change from 3 years)
- Doctors will be trained about CFS/ME-FMS (international specialists will probably have to be invited for this)
- Medical inspectors will be trained on these illnesses
- The follow-up of the setting up of these services will be done by a joint committee in which patients' associations will be represented
Needless to say that the Catalan Minister of Health, Marina Geli, is not so happy about having to carry this out and she said so on the government's home page the same day it was voted in Parliament (this would require a long explanation about Catalonia, Spain, and many anthropological concepts...).
So, the associations are not taking a break nor taking the time to celebrate this victory because we know we cannot afford to slack. We have to keep a good watch on what the government is doing and not doing. So, we are back at work doing the following:
- Educating patients and their associations to all be watch-dogs and to report on the implementation of this resolution in their area: we are teaching people how to file proper complaints that can be used in a legal case if need be.
- Making sure that all patients know the content of the Resolution. To make this easier, we have written a song with all the main points to the tune of "Yes We Can" (thank you, Obama), so that people can remember it.
- Working with a law firm, Collectiu Ronda, to do a proper and constant follow-up and to gather evidence in case the resolution is not carried out properly. In that case, the law firm will do a collective law suit against the government.
- Going back to the press about how we are still on the "war path" until we make sure this Resolution is respected and carried out.
This last year and a half has been decisive for the CFS/ME-FMS movement in Catalonia:
- The associations have joined forces
- 140,000 people have been educated one by one, by our 150 signature gatherers
- Parliament has spent much time talking and arguing about the issue of services for CFS/ME-FMS (one parliamentarian told us that they had never talked so much about any issue before)
- The Catalan Health Department has been challenged like never before by civil society and they now know that we are a force to be reckoned with
- There has been an enormous rise in consciousness amongst people with CFS/ME-FMS in Catalonia
- We are a lot less invisible now!
- And we are on our way to getting proper health care services (although much work is still to be done).
We have had a lot of help and support from people, associations and experts in other countries and so to all of you we want to say a big GRACIAS!
You can see some of the photographs of May 21st on this web: