Monthly Archives: March 2014

2013 NIH Spending on CFS Studies

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. I have positive news to report: NIH spending on ME/CFS  in 2013 was actually higher than it was in 2012. Are you … Continue reading

Posted in Research | Tagged , , , , , , , , | 27 Comments

Reading Tea Leaves

In a report issued on March 12, the IOM panel tasked with creating a new case definition for Gulf War Illness declined to do so. This is the first time the IOM was attempting to create a disease case definition, … Continue reading

Posted in Advocacy | Tagged , , , , , , , , | 4 Comments

Changing Tactics

For decades, ME/CFS research and clinical care has been plagued by disagreement over the basic classification of the illness. Is ME/CFS a physical disease, as many patients and researchers insist? Or is it a mental health disorder perpetuated by deconditioning, … Continue reading

Posted in Commentary | Tagged , , , , , , , | 33 Comments

Infused

I’m beginning a new experiment: IV saline. Regular saline infusions have been used by many ME/CFS patients to cope with orthostatic intolerance for years, but I’ve never taken them regularly. Yesterday, I received the first of four weekly treatments. How … Continue reading

Posted in Occupying | Tagged , , , , | 18 Comments

Not So FOIA

The problems ME/CFS advocates are having with Freedom of Information Requests are swiftly acquiring epic proportions. Jeannette Burmeister filed a lawsuit this year to compel release of documents for one of her FOIA requests. Patricia Carter has also filed FOIA … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , | 5 Comments

Exit Stage Right

Another CFS Advisory Committee member has resigned. After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 19 Comments

Silver Platter of Frustration

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , | 14 Comments

Guidance to Industry

Last year, the FDA said it would be preparing Guidance to Industry on drug development for ME/CFS and now they have delivered. Guidance for Industry Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products For Treatment* has been published in draft form, … Continue reading

Posted in Advocacy, Research | Tagged , , , , | 13 Comments

Systematic Overreaching

A study published last month* by a group from Norway reports a systematic review of ME/CFS case definitions. It’s important because the Institute of Medicine panel is likely conducting a similar process as part of its work, but the study … Continue reading

Posted in Research | Tagged , , , , , , | 7 Comments

Yay, and Also Boo

Yay! The CFS Advisory Committee will meet on Tuesday, March 11th from 12-5pm. This is the makeup day for the meeting cancelled on December 10, 2013. Boo! This is another webinar, and one can only hope the technical aspects will … Continue reading

Posted in Advocacy | Tagged , , , , , , , | 4 Comments