Tag Archives: living with

Comparing Exercise Advice

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , | 44 Comments

Best Laid Plans

This is not the day I planned to come back from my holiday hiatus, nor is this the post I planned for the beginning of a new year. But as they say: “The best laid plans of mice and men … Continue reading

Posted in Occupying | Tagged , , , , , , , | 9 Comments

Coffee

I graduated with honors from an Ivy League law school, and it was largely made possible by coffee. There was a Cinnabon right around the corner, so most mornings I picked up a ginormous vat large cup to get the … Continue reading

Posted in Occupying | Tagged , , , , , | 10 Comments

Serious Or Life-Threatening

During the stakeholder teleconference with FDA on September 13, 2012, Dr. Sandra Kweder said that FDA considers ME/CFS to be a serious or life-threatening condition. In the world of FDA regulations, this is a very important designation. Here’s the full … Continue reading

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

Insufficient Data

One of the most frustrating aspects of coping with CFS is the lack of definitive data. A PubMed search for “chronic fatigue syndrome” yields 4,877 results (as of today), but as a patient on the front lines I have to … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 21 Comments

Rest Medicine

I have been working really hard at resting. That probably doesn’t make sense, but I have been struggling to incorporate preemptive rest into my routine and it feels like a lot of work. The rationale for preemptive rest is that … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , | 6 Comments

Gratitude

We celebrate Thanksgiving in the United States on Thursday, and you may have seen the 30 days of gratitude meme on social media this month. I decided to share my gratitude in one post, and focus on aspects of my … Continue reading

Posted in Occupying | Tagged , , , , , , | 3 Comments

In Concert

I went to a concert on Saturday night. I know, right? Given how sick I have been, and how much I have struggled after outings, a concert sounds pretty crazy. In fact, I haven’t been to a concert in many … Continue reading

Posted in Occupying | Tagged , , , , , , , , , | 5 Comments

Hurricane Drunk

No walls can keep me protected No sleep, nothing in between me and the rain And you can’t save me now I’m in the grip of a hurricane I’m gonna blow myself away (Florence + the Machine)   Hurricane Sandy … Continue reading

Posted in Occupying | Tagged , , , , , , | 3 Comments

Puzzle Pieces

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 13 Comments