For Starters, Sign Here.

Boom Shock a Locka!

I invite y’all to check out this campaign, and to sign and share it if it feels right to you. 

This is a prime example of using the web as a platform for change and for being heard on a large scale. This is how the internet will contribute to the shift around this movement in so many ways. Here is where we demand accountability, where we can distinguish fact from fiction, and how we can begin to improve the poor understanding of CFS/ME with information in place of subjectivity. There is a curious amount of opinion surrounding this disease, and a major lack of knowledge. Balancing this scale is crucial if we’re to achieve the kind of large-scale transformation that were seeking. There truly has never been a more opportune time to help contribute to this kind of cause–the digital age puts the power right at our fingertips, and it’s up to us to use it.

Sometimes the universe helps align things, and I felt that way as I read this online campaign regarding The Pace Trials from 2006. I mentioned the study briefly in my letter, because this $5 million dollar study led by mental health professionals in Great Britain had a huge impact on the CFS world–unfortunately it was a negative one. The trial coordinators revealed its findings to an eager world awaiting answers, and it appeared they’d found some. Trial professionals claimed that Graded Exercise Therapy and Cognitive Behavioral Therapy had profound results on people with CFS, in fact it led to recoveries in a good portion of trial participants! The news spread quickly, and it influenced not only public opinion of the disease, but public policy regarding it. Benefits were slashed for disability after the trial when it became clear that these “sick” people didn’t have a disease so much as they were simply de-conditioned, and either simultaneously, or as a result, were also depressed. They didn’t need rest, they needed to push through and sweat it out. Either way, it worked! Great. Except that, it didn’t work. 

After third parties began to break down the details of the trial after some initial numbers didn’t add up, they found huge errors in consistency, methodology, patient feedback forms, and in sticking to scientific protocol in general. The problem is that by the time all these issues with the study came to light, that false message had already been conveyed, the damage done.  How does that phrase go? Lies will travel halfway around the world while the truth is still lacing up it shoes…

There seemed to be no official consequence for what turned out to be either massive negligence or outright wrongdoing on behalf of the study’s organisers. Worse is that the Trials are still cited as scientific proof for the idea that therapy and exercise are helpful to people with CFS, even though specialists in the field and patients attest that the opposite is true: exertion can be severely damaging to a person with this disease. It’s the modern equivalent of advising diabetics to simply eat more sugar, just a little bit at a time! Your body will slowly learn to tolerate it! The point is, this trial either directly or indirectily halted progress for CFS/ME by helping to solidify a theory that never turned out to be true. It continues to inform decision makers and is still cited as legitimate science even though it fell far short of that. The irresponsibility of the trial and its coordinators set an already struggling and sick community back, and I think we have to be proactive about preventing any further damage that could result from misinformation like this. It’s a timely matter that is up to us–the internet doesn’t favor fact over fallacy. It’s simply a medium moving all data at an insane speed; the burden is ours to discern between what is true and what falls short. We’ve got some catching up to do, but at least now there’s a way we can. 

This is personal for me of course, but it’s also about keeping public officials in line and holding them accountable for the decisions they make. I like that we have the ability to hold serious matters like this under the light, that we are able to help correct wrongdoings and achieve transparency where we didn’t always have the power to before. This petition asks to retract at least parts of this “study” from being included as legitimate research, which seems fair. Im hoping it will help leave the myths around this disease in the past and move us forward with the kind of ground-breaking science and studies needed to finally find a cure, not secure a stagnant status quo. You can read more about the trial through this petition or check out some other websites at the bottom of the page.

Sign the petition here:

http://my.meaction.net/petitions/pace-trial-needs-review-now

You don’t even have to wear pants in order to make a difference today.

yeah.
yeah.
Health, Happiness, Sign It!

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

PACE Trial Authors Feeling the Heat Over Chronic Fatigue Syndrome Trial

http://www.biomedcentral.com/1471-2377/7/6/COMMENTS#289542

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4 thoughts on “For Starters, Sign Here.

  1. I love this. I just want to add that this should be looked up for faulty research with other invisible syndromes on this spectrum, like Fibromyalgia. It smacks of the same medical turn around; although some items like low slight excersise or movement helps our bodies not to waste and neurotransmitters to kick in. I am definitely signing and will ten log on my site tomorrow!

    Like

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