Wednesday, March 14, 2007

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

1 comment:

Kathleen Houghton said...

Until you read "The Thief of Many Lives" you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.

What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day ... we must be feeling "better" ... "better" than what? Death? Unfortunately, CFS victims generally do not feel better than death ... warmed over or otherwise!

Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the "good" days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA ! (change to your country)

CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.

May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.

BE AWARE OR BEWARE ... As you could be writing this letter from your bed next May 12th.



The Thief of Many Lives

© Kathleen Houghton - Alaska CFS-MCS Association

I am constantly on the prowl in search of new victims. I do not discriminate---health care workers, teachers, students, airline personnel, teens, moms, dads, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."

I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses, which will painfully be replicating in your brain. I promise you, I will bring you despair along with pain, isolation and losses far beyond what you can ever imagine. Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look.

You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense for that matter.

I promise, I will bring you at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be housebound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape between your fingers may take too much energy or be too painful now.

On those nights that I allow you to sleep, you will awaken drenched with sweat or throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur; I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living. You will need to re-create your being every day, as every day I will bring you unpredicted symptoms and suffering.

I have also done a few things that you may not be aware of yet. I placed some lesions on your brain, have you noticed how you have difficulty with balance and memory yet? I have permanently altered your immune system. I have shorted out your nervous system so that you have intermittent numbness and tingling, which might resemble an electrical current zapping you from time to time. This is called neuropathy. Nope, it's not curable either!
Now I have you. I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. Rest assured, I am looking for them too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others, they won't understand anyway. Isolation will save you all that energy.

Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable, when you seek medical care, any medical professional that figures me out will diagnose you and say that what you have is presently not curable.

Now it is time for you to seek out medical care, nation if not worldwide. However, most so called medical professionals will not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So, chances are good that you will be misdiagnosed. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid as well as socially and medically acceptable. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you may look like the picture of health. This is my mask of deception.

You will pray for a positive word from current research. Research, which you will soon learn, is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for are Social Security Disability and Medicare.

At one point I may give you a false sense of recovery or remission. Let me assure you, I will be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo, I continue to do the same world wide. I would consider this an epidemic, wouldn't you?
Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick. Unfortunately, I have been given a totally ridiculous name, which will make your job even more difficult. Until that name is changed, I am...
CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME

Kathleen Houghton, author of The Thief of Many Lives was a professional healthcare worker dedicating many years to Pediatric Special Care nursing before CFS put her life on hold at the age of 36. She continues to be ill and is mostly housebound with Multiple Chemical Sensitivity (MCS) as well as CFS. When able, she promotes CFS and MCS Awareness through accurate community information and education.