Sometimes things all seem to happen at once. This is one of those times. There’s lots going on this month.
Webinars, TV Shows, Conference Calls and Summits
Alan Light On “New Developments in ME/CFS”
Alan Light graphs showing almost off the chart changes in gene expression in ME/CFS patients is perhaps the most vivid visual portrayal of post-exertional malaise yet produced. One of the few ME/CFS/FM researchers to consistently get NIH grants, Alan Light has produced 9 papers, mostly on the effects of exercise on the gene activity in ME/CFS, FM, depression, prostate cancer, depression and multiple sclerosis. He’s on the cutting edge of understanding how PEM occurs.
Carol Head doing an impromptu interview with Dr. Light
Now he’s talking on “New Developments in ME/CFS”: this is a webinar that is probably not to be missed.
PBS Airing TV Show On ME/CFS
The “Second Opinion” TV show will feature ME/CFS on PBS stations around the country Oct. 12. The show features Danielle Warner, sister of SMCI board member Aaron Paas, and her husband, Tyrone. The show also will be posted online at http://secondopinion-tv.org/ on that date.
The CDC’s POCA Conference Call
The CDC does a conference with a researcher or doctor twice a year. In this call Dr. Unger will first go over what’s happening with the CDC’s ME/CFS program and then she’ll turn the mic over to Dr. Lapp (Hunter-Hopkins Center) and Bruce Campbell (CFIDS Self-help). They will talk on something most of us know we could be doing better at – and would feel better because of it – pacing. Bruce Campbell is the poster child for pacing; he basically paced himself out of ME/CFS.
The free one-hour conference call is on *Thursday, October 8*. It will begin at 1 pm Pacific time / 4 pm Eastern. To join the call, dial *800-593-9959* and key in the conference code *8266520.* For more details, see: http://www.cdc.gov/cfs/meetings/cfspcoca.html
The Mindfulness Summit
If you’re feeling down, angry or frustrated the Mindfulness Summit might be for you. If you’re interested in using mindfulness or meditative techniques to improve your quality of life, and ease of mind, or even improve your health a bit, it’s definitely for you.
Some of the many speakers are:
- Tara Brach – the author of Radical Acceptance – a good idea for anyone with a chronic illness will be speaking. She had chronic fatigue syndrome/IBS for years and later was found to have an autoimmune disorder. She knows how helpful”Radical Acceptance” can be for those with chronic illnesses.
- John Kabat Zinn created the Mindfulness Based Stress Reduction (MBSR) program used across the U.S. to alleviate chronic pain. The program was produced for people in pain who could not tolerate pain drugs.
- Jack Kornfield – If you know of Buddhism you probably know of Jack Kornfield – a seminal figure in U.S. Buddhism for the past twenty or so years.
- Arianna Huffington has given mindfulness a central place in the Huffington Report.
Register for the (almost) month-long summit and get access to all the presentations for free here. Health Rising is an affiliate of the Mindfulness Summit
Lenny Jason’s Big Symptom Study
Lenny Jason is doing just what the critics said the ME/CFS field needs to be doing to legitimize itself and hasn’t been doing: comparing ME/CFS to other diseases. Jason wants to know how the fatigue and other symptoms found in ME/CFS differ from those found in MS, lupus and cancer. (He’s good at this. If you remember Jason earlier showed that ME/CFS can be differentiated from depression simply by assessing symptoms.) In this massive survey – it takes about 45 minutes (but you can pause it whenever you want) – Jason and his DePaul Team ask just about every question you can ask about symptoms.
To participate in the study you should be
- Adults at least 18 years of age
- able to read or speak English
- Have a diagnosis of Multiple Sclerosis, Lupus Erythematosus, Cancer, Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome.
Prohealth Diet Survey
May people with ME/CFS and FM turn to special diets. ProHealth would like to know what dietary changes you’ve made or supplements you’ve tried for gut problems and if they’ve been helpful for not. Please take their survey HERE.
Dr. Baraniuk’s Emergency Room Survey
Has ME/CFS ever driven you to the emergency room? If it has Dr. Baraniuk would like to know how it went. Take his ME/CFS Emergency Room Survey here.
Health Rising in October
It’s going to be a busy October for HR. Over the next couple of weeks four things will happen:
Our new website will (finally) be up:
We will introduce two new programs:
- A Lives Interrupted program – designed to demonstrate the kind of people ME/CFS affects and the seriousness and costs of the disease. The program will focus on contrasting what you were doing before and after you got ME/CFS.
- ME/CFS/FM Experts Q&A program – in this program you can ask ME/CFS/FM experts questions about health, disability and coping
and we will revive
- The ME/CFS/FM Doctors Panel program – where ME/CFS/FM experts take on one case a month and give their treatment recommendations
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.