Ahora ya descansan. Hoy, al comentarlo, mi hija me ha preguntado: "¿Y eso no te deprime?" Pues no, la verdad es que no me deprime. Prefiero conocer estas noticias por una sencilla razón: esta enfermedad es un enemigo sibilino... y no hay peor estrategia en la lucha que minimizar al enemigo, darle de menos, quitarle importancia... Ser conscientes de que esta enfermedad siega vidas jóvenes (sea por "daños colaterales" o por suicidio) nos permite mantenernos alertas y saber que, nos digan lo que nos digan, nosotros debemos escuchar a nuestro cuerpo y dejar de escuchar a todos aquellos que pretenden que nos forcemos más allá de los límites que la enfermedad nos impone. Saber que puede matarme (y tenerlo presente) es lo que permitirá que no lo haga.
Un abrazo a todos los que luchamos contra esta enemiga insidiosa. Y a seguir luchando!
[t]ME Mortality[/t]
I have written before about the "living death" of very severe ME, and of patients clinging to life, desperately hoping for medical progress to rescue them. Sadly, some patients don't survive long enough.
In the last weeks I have heard of the untimely deaths of five ME patients:
Jodi Bassett,
Louise Ramage,
Pat Blankenship,
Tink Bastion and
Linda Hayes Burke.
I knew none of these ladies in real life, but their deaths nonetheless feel like a punch in the gut.
Theirs are not the only ME deaths I've encountered either. The online ME community often morns losses from its ranks, but these five deaths, occurring in such quick succession, highlight a sensitive issue - ME mortality.
So why, knowing ME deaths occur, is ME research is still so agonizingly slow?
Why is it still hampered by such a significant lack of government funding world over?
Certainly, noises are being made by government bodies about future funding, but patients sense a complete lack of urgency, when it comes to seeking answers through biomedical research.
It seems the pounds and dollars are slow to appear for the types of studies we need.
Another question: Why do we still have publications in respectable journals that describe ME as a condition where mind-over-matter types of therapies are effective?
Do deaths not indicate something more serious?
There is a saying that events can become "just another statistic", but what if those statistics are never collected?
Are the deaths of ME patients recorded? If not, why not?
The frustration that shows in my writing today is, I know, felt by many.
I hope awareness of the urgent needs of Severe ME patients will one day be exposed. I hope the outrage our community feels at the untimely deaths of patients like Jodi, Louise, Pat, Tink and Linda, will grow to become a public outrage.
I hope many more who are not affected by ME will start to ask questions about our situation.
In the mean time, those of us remaining, and still able to campaign, must do all we can to bring ME to the attention of medical professionals and key health decision makers - where ever we are - world over.
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