Ce site est consacré à la fibromyalgie et tout ce qui tourne autour de cette pathologie si douloureuse et du handicap qu'elle génère. Un des buts est d'en partager les connaissances et les conséquences souvent désastreuses qu'elle a à tous les niveaux de la vie. La fibromyalgie nous concerne TOUS, et de plus en plus ; elle est en passe de devenir un véritable phénomène de société, un problème de santé publique si aucune solution n'est trouvée rapidement. 3 millions d'enfants, de femmes, d'hommes, et sans doute davantage en raison d’erreurs chroniques de diagnostics et de l'aveuglement de certains médecins, en sont atteints en France, pays des droits de l'homme qui pourtant étouffe en permanence cette maladie handicapante et ignore de manière brutale les fibromyalgiques et les répercussions ultra-violentes que cette maladie ô combien douloureuse a sur les malades. On persiste à la qualifier de maladie nouvelle qui n'aurait que quelques dizaines d'années... C'est pourtant ignorer le fait qu'on en parle déjà au début du 19e siècle... le nom a évolué au bon vouloir des médecins, mais la maladie reste la même et provoque toujours plus de dégâts...
Alors que l’Amérique est en liesse, le président Obama vient de promettre un investissement bien plus important dans la recherche sur des maladies chroniques, tel le syndrome de fatigue chronique.
Courtney Miller vient parler de son mari, Robert, atteint d’une affection chronique et apostrophe le président américain sur la question.
B. Obama, dans sa réponse va jusqu’à dire : « il est fondamentalement immoral d’ignorer tous ces gens malades »
Espérons que cette parole puisse trouver un écho sur notre vieux continent et que cela donne une nouvelle impulsion pour les recherches, tant aux USA qu’en Europe, et partout dans le monde où des moyens pourront être développés et des bourses distribuées afin de trouver ENFIN des solutions pour ces pathologies chroniques largement méprisées par le corps médical !
Tiré de l’article (en anglais) visible à l’adresse :
The Obama Promise on Chronic Fatigue Syndrome
23 avril 2011
Robert Miller has an uncanny ability to get near prominent figures. It's probably more accurate to say that even though he's very ill, Bob is relentless and he's fearless and he basically just makes it happen. This time Bob and Courtney got into the Reno Town Hall meeting and there his wife, Courtney, asked President Obama, on camera, what's up with the federal goverment ignoring her husband and a million other Americans with Chronic Fatigue syndrome.
This is the first public expression by a President of the United States on chronic fatigue syndrome and and it came with a promise to look into the situation. Bob and his family were able to talk with Pres. Obama afterwards and the President stated he would be on top of the NIH for CFS. He was given Bob's contact information and some printed material. This is definitely a first for CFS.
It’s a young lady’s turn. Right here, in the red. Right in front. You got a microphone coming.
Q Mr. President, my name is Courtney Miller (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that.
THE PRESIDENT: Well, let me, first of all, say that you are absolutely right that we’ve tried to put science back where it belongs. (Applause.) I am a Christian and a person of faith, and I believe that God gave us brains to figure things out -- (applause) -- and that we’ve got to use science to make life better for our families and our communities and this planet.
That’s one of the reasons why part of the Recovery Act was reinvesting in National Institute of Health -- NIH -- which does a huge amount of the basic medical research that ends up then creating so many of the scientific advances that are making our lives longer and making our lives better.
Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment. Okay? (Applause.)
You never know what is going to break it for ME/CFS. Could this moment if we use it right - be the pebble that starts the rockslide that turns into the avalanche that turns things for ME/CFS? Could this be the political moment - if we really push it - that makes the difference? At some point someone in power is going to say.....Its fundamentally immoral to ignore all these sick people...the buck stops here!
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