From Jeanne Hambleton ©
NFA Leaders Against Pain – Advocate
With so much doom and gloom in the world today, to hear of a victory for those suffering with FMS, CFS and ME, is all the sweeter. When I received an email from Clara Valverde this morning about the success for Catalonian people suffering with our long term chronic illnesses, I was so pleased to read about their victory. I have followed their struggle since last November, (https://jeannehambleton77.wordpress.com/2007/11/04/historic-magic-moment-for-catalan-fms-cfs-patients/)
It is wonderful that you have persisted with your battle and I wish you good luck as you take the next steps forward. I know it has been an uphill struggle with many folk with you in spirit but too ill to take up the fight with you. I must congratulate you on ‘counting the heads’ of those at home in bed unable to take part but who are as supportive as they can be – a great move.
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 Parlamentary 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 goverment 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 Parlamentary Resolution has the advantage of having been voted unanimously by all parlamentarians and with full press coverage (live on television on real time), which will make it harder for the goverment 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 Parlament and we presented our demands.
That was followed by presentations by all the parlamentary groups and then the vote. And a standing ovation. Outside the Parlament 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 especialized 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 goverment’s home page the same day it was voted in Parlament (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 goverment 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 colective law suit against the goverment.
– 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
– Parlament has spent much time talking and arguing about the issue of services for CFS/ME-FMS (one parlamentarian told us that they had never talked so much about any issue before)
– The Catalan Health Deparment 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:
Unless you can read Spanish you will not understand the text – sorry!
What a fabulous achievement at the end of a lot of hard work. My heartiest congratulations to Clara Valverde and her team. I am sure you all feel pleased with yourselves but keep up the good work.
We must remember the folk who have achieved this victory have FMS CFDS and ME which has meant much more effort than a normal would need. In reality this would make victory so much sweeter for those sick people. I am really delighted with their success.
If they can do this in Catalonian, why can’t we do this here in the UK. Our Government will not give us money to fund research. Maybe we should take stronger action. What do you think? Email me – I would like to know your views – email@example.com. Who knows we might even get some coverage on TV. Talk soon. Jeanne