by Jeanne Hambleton ©
NFA Leader Against Pain-Advocate
I am full of admiration for the wonderful work achieved, and the battle is still raging, for the ME/CFS and FMS community in Catalonia, Spain. Hopefully you will have read something of their success with a story I wrote a few days again called “Historic Magic Moment….”
Today I have received the latest update about the struggle the ME/CFS/FMS patients have had with the Catalan government and how they fought to bring a Bill before their Parlament. I understand it is expected the Bill will be put to the vote sometime in 2008.
My contact, the president of LIGA SFC, Clara Valverde RN, BSc has prepared a power point presentation about the CFS/ME-FMS ACTIVISM IN CATALONIA, SPAIN (updated Nov.2007).
The story below is in Clara’s own words.
Catalonia is a nation within Spain. It is in the northeast of the peninsula and it has a population of seven million. The capital city is Barcelona. It has its own language, Catalan, and an autonomous goverment which for most matters, such as health, it has complete control. Catalonia is in the top right hand corner of Spain – Barcelona, the capital of Catalonia
Like so many people with CFS/ME or FMS in the world, here, in Catalonia, we live with incomprehension, suffering, neglect and…isolation
Until a few years ago, the illness was not known here. One doctor who trained in Canada, began to work on CFS/ME here, in the mid 90s. A couple of women with CFS (Marta Rossello and Lidia Monterde) worked hard to make sure that a CFS Unit was set up. Well, I wouldn’t quite describe ‘a doctor with a 6 month waiting list’ as a Unit, but it sure was better than nothing. Long-time CFS activist Lidia Monterde who is now vice president of our Liga SFC
When a new Catalan goverment got in (the PSC party) in 2003 after 23 years of another party ruling, we had hopes of being able to make some headway. But, to our surprise, they rejected the little collaboration with the patients’ associations which had occured with the previous goverment. They told us that the doctors were the only ones who could talk about CFS/ME-FMS. (The concept of “patient-expert” is not known in Spain).
So we decided to set up a CFS/ME political action group, the LIGA SFC, with autonomy from the other CFS/ME and FMS (fibromyalgia) associations who wanted political action but were afraid…
You must understand that until not so long ago, Spain was under a dictatorship. So there is little experience with advocacy, democracy and there has been no feminist movement. Added to that, Catalonia is a small nation where we all seem to know each other. People are afraid that if they speak up. One day they have to go for medical inspection or to court for disability issues and they might be identified as “hell raisers” and have problems.
So our fearless action group of fatigued activists decided to jump ahead of the goverment (jumping ahead is our only “Graded Exercise Therapy” and our main strategy) and to start exposing the Plan the new goverment was setting up for CFS and FMS. The goverment excluded the patients’ associations from participating in developing the Plan.
This plan was worse than we thought. Basically it would force us to ONLY access Primary Health Care and keep us from seeing specialists. This is added to the fact that the only CFS Unit now has a 2 YEAR WAITING LIST. (There is also a CFS Unit in the private health care system but it is not affordable to us, especially with our financial-illness situation. Spain has both a large public and free health care system and a small private one).
Why did the goverment do this?
Simple enough: they knew that, as PHC doctors are not trained to diagnose and treat CFS/ME or FMS, have no access to needed tests, nor time, their reports would be useless to allow us to apply for a disability pension. (They think we can live on nothing.) This would put us both in a legal and health care services’ LIMBO. Which is why we, the patients, called this goverment plan “The Guantanamo Plan”. With the new Plan we felt trapped like Guantanamo prisoners, so we decided to make orange our colour.
When we found out about this Plan, our 2006 objectives became:
• CFS & FMS associations target group: try to educate on this Plan and create critical thinking (and try to get them to be less scared of speaking up).
• Goverment target group: Let them know we were not in agreement and that we knew their real motives.
• General public target group: Let them know why we were against this Plan.
Our activities for 2006 became:
• Press campaign on the Plan
• Organize a demonstration
• Write an alternative services plan and distribute it to all associations and press
• Organize a course on CFS, FMS and MCS for judges and lawyers (judges are the ones who decide who gets pensions)
• Meet with the goverment
• Do a mailing each week through our web on political, scientific, legal and human CFS issues to associations, members of parlament, Health Deparment employees, key goverment officials, doctors.
• The first ever demonstration of CFS and FMS people in Spain. Well we thought we would not get more than 6 people. We were 150!
• We went to the Health Department with our signs and our whistles any way we could: wheelchairs, canes, chartered buses…
• Of course, not all of us did make it there…Part of our press campaign included signs which said,“I REPRESENT 4 PEOPLE THE OTHER 3 ARE IN BED”.
• We drew bodies and wrote in them the number of people with CFS or FMS that were not able to get out of bed that day. For some, it was too late…
The goverment officials came out to try to “reason” with us. But THEY lacked reason.
Results of our 2006 objectives:
• Made all the national press.
• Began to get support and feedback from other associations who use to see us as too radical saying that they support us (even if in not in public).
• Goverment called to meet us (unheard of!) and told us to stop our activities (yeah, sure) and that they were surprised that women were able to respond at such a level (I love this country!).
• Our “Counter Plan” text was a hit and some goverment officials told us in private (remember Deep Throat?) that the goverment was impressed but that they had no money for pensions for the “new illnesses” so, they were still going ahead with their Plan.
• Did a course on CFS/ME, FMS and MCS for 150 judges and labour lawyers.
• Hundreds of people sent letters of protest to goverment officials through our web.
• Met and collaborated with other CFS-FMS associations, health care system users’ associations, unions, etc.
• Our web grew and now we have over 700 hits a day.
• Met with the main “authors” of the “Guantanamo Plan”, CFS doctors who are against what is in the Plan (don’t ask me to explain…this is Spain!) to say that they were afraid to speak up against what they had signed because they might lose their funding, but encouraging us to fight the goverment.
• Networked with groups in the rest of Spain.
In places like the UK, they try to stop the costs of CFS/ME by saying “It is all in your head”. In Catalonia, the strategy is to “park” us in Primary Health Care where doctors with their lack of training and their 5 minutes per patient, are not able to diagnose, treat or write reports for the legal process (2 years in courts!) for disability.
But 2007 is turning out to a be much more important year!
• We have gotten together with 15 other CFS and Fibromyalgia associations in Catalonia (representing 80% of the patients who are in associations) and we have decided that the only way to make sure we get proper services (especially to see especialists who can diagnose properly) is to get a law passed in the Catalan Parlament through a Popular Legislative Initiative (PLI).
This is something huge:
• We first wrote the law we wanted voted in Parlament, sworn in (in Parlament) the people who coordinated the signature gathering (130 people, mostly people with CFS/ME or FMS), and the we had 6 months to gather 50,000 signatures (the population of Catalonia is 7 million). Well, in 2 months we gathered 140,000 signatures! Needles to say, that has the parlamentarians worried and it has empowered FM-CFS/ME patients.
• The signatures are being validated by the Catalan Statistics Bureau and in early 2008 we will enter them in Parlament for debate. Until then we are having endless meetings with political parties as the goverment is very worried. They did not expect such a massive response. They are trying to pressure us into dropping whole thing, and also they are trying, each week, a different tactic of trying to discredit us (by setting up fake associations that will speak against the majority of FM-CFS/ME associations that support our proposed Law. Needless to say that their tactics do not work with us.
• The goverment would like us to be like this patient (“The operation has been successful: we have removed all trace of your own ideas”.)
What are we asking for in this law?
• That the goverment set up 14 CFS/ME-FMS Units where the diagnosis can be done by specialists.
• That they train doctors.
• That the goverment’s medical examination board (who are responsible for giving sick leaves and disability pensions) stop discriminating against patients with CFS/ME or FMS.
Amazingly, we are also getting some rewards: We got the Alternativa Award for having created, through our signature gathering, a social movement on CFS/ME-FMS
What else are we doing?
• We are gathering support of famous Catalans and making sure all politicians find out about this.
• Each week we denounce through the web:
• The everyday injustices we live (ill people not getting pensions or having them taken away once they had them, the two-three year waiting lists, etc)
• The goverment pathetic tricks to try to manipulate and sabotage us.
• All members of Parlament and those working for the Health Deparment get these denouncements weekly in their email.
• Well, now that you ask…
• We are starting a class action suit against the goverment for vulnerating
our consitutional rights to access to health services. Whatever happens in
Parlament with our law (whether it is voted for or against) we will continue in
the courts and in political action, “out in the streets” (well, our streets are internet from our homes and beds). But we are not stopping until we have the minimum services and justice!
• We might be too tired to sue, but our lawyers are not!
We are also making the first Spanish-language documentary on CFS/ME. Look for the trailer in Youtube: “Amapola y los aviones”. It will be ready for distribution in 2008.
It’s amazing what one can do from bed! Mass agitator writing a speech!
I wonder just what we could achieve, if we were invited to support the ongoing political activities of the ME/CFS organisations and groups here in the UK (look at Google).
As fibromyalgia patients, many with CFS (ME) to add to our problems, we would have NOTHING to lose – we have no government funding for research, we apparently have no immediate Member of Parliament ready to run with the gauntlet and take up the challenge in the corridors of power.
We claim 2% of the population in this country has fibromyalgia and how many have CFS to cohabit with their invisible disability? If we were able to lend our support to the ME/CFS or CFS/ME fight, do you think the Government would take more notice? Do you think Gordon Brown or those responsible for NHS health, would listen?
It reminds of a famous saying “United we stand, divided we fall!” I cannot remember who said it, but it does make a lot of sense.
Clara and her team who has brought both of these communities (ME/CFS and FMS) together to bring a Bill before the Catalan Parlament wrote and said, “The ME folks may be foolish not to join up with FMS community. There is too much in common to be separated and the common strength is needed.”
I am aware of at least one FM Support Group who has shared expenses with their nearest ME Group and it does to make sense. Think of the financial savings – half the hall hire costs, half the newsletter or magazine costs, half the speaker’s expenses, twice the number of people at meetings, the same aches and pains, and more.
By the way, I would have lost sleep tonight if I did not discover who spoke those famous words, so I checked with Yahoo and wikipedia.org – sorry no copyright infringement meant.
Best Answer – Chosen by Asker
The first attributed use of this phrase in modern times is to John Dickinson in his revolutionary war song The Liberty Song. In the song, first published in the Boston Gazette in July 1768, he wrote: “Then join hand in hand, brave Americans all! By uniting we stand, by dividing we fall!”
Patrick Henry used the phrase in his last public speech, given on March 1799, in which he denounced The Kentucky and Virginia Resolutions. Clasping his hands and waving his body back and forth, Henry declaimed, “Let us trust God, and our better judgment to set us right hereafter. United we stand, divided we fall. Let us not split into factions which must destroy that union upon which our existence hangs.” At the end of his oration, Henry fell into the arms of bystanders and was carried almost lifeless into a near-by tavern. Two months afterward he was dead.
I hope you are glad you now know who said that. Take care and think about this quotation. Do send me your thoughts. I would like to share them. Jeanne