A Victory for Popular Struggle

My friend Clara, as some of you know, is both a sufferer of and an activist on chronic fatigue syndrome (CFS) which is a pernicious disease that affects many bodily systems, especially the immune system. Diagnosing it and treating it does not fit easily into contemporary medical practice and ideology and thus goes ignored, misunderstood and/or stigmatized rather than treated. Clara is one of the leaders in a Spanish popular movement that has been struggling for the rights of people who live with CFS and the related disease fibromyalgia. As you can see from Clara's letter below, the Catalan parliament has responded to popular pressure and approved a process that will result in legislative change.

Dear friends and colleagues far and near,

Yesterday, the Catalan Parlament accepted the Popular Legislative Initiative on Chronic FAtigue Syndrome/ME and Fibromialgia (FM), presented by representatives from 80% of the people with CFS/ME or FM who are in associations in Catalonia. This acceptance is the first step towards a world-first: a law that would ensure proper servicies for people with CFS/ME and FM and a fair treatment by medical inspectors. Here is the news item in the Catalan Parlament's home page

No one thought that a group of ill people like us, in a not so user-friendly country would be able to pull this off. So we are all very happy and it is a big boost for the CFS/ME and FM community here.

Now that it has been accepted, the signature gathering can begin. We need 50,000 signatures and we have a team of 150 signature-collection coordinators ("fedetarios") ready to roll.

Once the signatures are gathered, the law will be discussed in parlament and voted. This will probably take place in the fall.

Up to now, it has been a lot of work for us sick folks: writing the law and the document to justify each article of the law (thank you to all of you who sent me the necessary bibliography!), working with all the associations to create unity and the much needed empowerment, meeting with all political groups and sub groups (we have the support of all the political parties, except, of course, the party that runs the Health Ministry), campaigning to recruit signature coordinators, meetings with unions, women's groups others.

It has not been easy as we are presenting a proposed law that puts totally into question the goverment's plan to keep CFS/ME and FM solely in Primary Health Care (where most doctors do not believe these illnesses exist or do not want to work with them and are not allowed to do any relevant tests), while our law, amongst other things, demands CFS-FM units. So we have had (and continue) to deal with pressures, intimidations, etc, from goverment and goverment-related organizations. We are also having to deal with the two foundations (one run by the goverment party, the other run by businessmen) who, up to now, had managed to control and manipulate the CFS and FM associations in CAtalonia and create division. Encouraging the associations to be independent and to create unity has been hard but the most rewarding work.

The documents (the law, the justification document and other documents) are avaliable in Catalan and some in Spanish. If anyone is interested in receiving them, let us know.

Clara Valverde

for the Promoting Commission of the
CFS/ME-FM Popular Legislative Initiative
Catalonia, Spain