2 replies to this topic

[VITTORIA]

In attesa della traduzione o un sunto in italiano di qualche gentile volontaria:

CDC's Chronic Fatigue Syndrome Research Changing Course?

dal sito About.com Fibromyalgia & Chronic fatigue

The CDC has announced that it's looking into chronic fatigue syndrome (ME/CFS) subgroups in the hopes of improving treatment options, discovering the underlying physiology, and nailing down a case definition.

If you're familiar with the CDC's history of ME/CFS research, you might take this announcement with a massive grain of salt. You might also be tempted to spit at your computer screen and utter a few choice words. However, this time, things just might be different.

For those unfamiliar with CDC-ME/CFS history, the organization has focused on one psychological and "biopsychosocial" factors while ignoring the physiological. Patients, advocates and ME/CFS researchers have long called for change and believe the CDC has done considerable harm to research efforts by muddying the waters with their approach and with an alternative case definition. Suffice it to say that it's been a long, ugly fight.

So why is this CDC study different? Instead of using its own researchers and its own definition of the illness, CDC is going through seven ME/CFS specialists and their treatment centers. These aren't fly-by-night or biopsychosocial centers, either - they include Nancy Klimas' Center for Neuro-Immune Disorders, Charles Lapp's Hunter-Hopkins Center, and Dan Peterson's practice in Nevada. (Again, for those who aren't familiar with these names, these are some of the top researchers into the physiology of ME/CFS and they've spoken out against the CDC's previous research.)

As for the controversial inclusion criteria, the CDC says anyone diagnosed at one of these seven centers is eligible - meaning they're using the clinical definitions of the doctors who actually know what they're doing.

Why Subgrouping is Important

ME/CFS research, even when done well, is plagued with inconsistency. A treatment appears promising in one study only to be found ineffective in another. Nothing seems to work for a substantial number of people.

Many researchers believe the reason for this is that the term ME/CFS actually covers multiple similar but separate illnesses that each need their own treatment approach. Researching them all in one lump doesn't account for these different subgroups, which means it's all doomed to finding nothing conclusive.

The belief is that, by defining subgroups based on physiological differences, research will start to provide better answers. We could identify treatments more effectively, and we should be able to get a better understanding of what's behind the illness(es.)

I'd like to link you to the CDC's website about the study so you can look over the particulars, but since the agency's site is currently down, here's the information on the ProHealth site:CDC Announces 7-Clinic Study to Characterize ME/CFS and Its Subsets.

Let's hope this is a change of direction for both the CDC and for the millions of people who need answers about their illness.

[Gloria0506]

innanzitutto vorrei anticipatamente scusarmi se farò errori, purtroppo il mio inglese è arrugginito, la memoria non aiuta e l'attenzione è quella che è. ma "struca struca" (dalle mie parti è un modo per dire nella maniera più corta possibile) quello che ho capito è che stanno facendo una ricerca completamente diversa da quelle fatte precedentemente, poichè l'organizzazione cdc nei suoi studi ha sempre concentrato l'attenzione sugli aspetti psicologici e biopsicologici trascurando la fisiologia dei pazienti. quindi l'associazione sta tentando un altro approccio. invece che utilizzare i propri ricercatori partendo dal loro significato della malattia, si affidano a 7 specialisti e ai casi clinici riscontrati nelle loro strutture, 7 specialisti che sono considertai al top in questo settore e che si occupano anche dell'aspetto fisiologico della malattia. questo nuovo studio nasce perchè un trattamento può avere effetti considerevoli per alcuni pazienti mentre in altri risultano inadeguati. si ritiene che se si dividessero i pazienti affetti di cfs in sottogruppi con sintomi fisici simili la sperimentazione potrebbe avere risposte più appropriate, individuando i trattamenti efficaci per quelle determinate sintomatologie e si potrebbero capire i meccanismi che stanno alla base della/e patologia/e.
vorrei chiedere conferma a qualcuno più competente di me, spero di non aver fatto troppi errori

Edited by Gloria0506, 10 December 2012 - 00:28:33.

[Zac]

Interesting and positive news.