On Fibromapp Friday we bring some news and events from the ME/CFS and FM communities to your attention, but first check out a cheap and easy way to manage your illness for better health.
The FibroMapp app is the most comprehensive ME/CFS/FM app on the market
“The FibroMapp app is SUPERB! I have not only been able to control my medications, but track which ones are working and which ones aren’t. The journal is a wonderful tool as is the flare-up button. I have been able to track my patterns, see what activities are causing me pain and sleep issues, and because of this can control my lifestyle much better. The reports are brilliant, and my doctor was so impressed with it, he is now recommending the app to not only his fibro and CFS patients, but patients with chronic pain.” Colin Bruce
Health Rising’s FibroMapp Eight in One App for Google Android phones and tablets has activity, meds, pain, sleep, etc. trackers plus it prints out reports and even has a flareup button that allows you capture what’s happened. (No, it does do the dishes – but it can help you assess your diet). All that for $3.99. (Health Rising gets half of the proceeds.)
Media
The SHAME! – Llewelyn King – Journalists Llewelyn King calls the federal government to account for the neglect of chronic fatigue syndrome in a moving piece that ran in the Las Vegas Sun last week called “The Shame of Biomedical Research”
The NPR article asks ‘What’s in a name?” and gets a strong response from people with ME/CFS
NPR – Referencing the IOM contract, NPR asks if Chronic Fatigue Syndrome needs a new name and does a nice overview. (Please note, though, despite common claims to the contrary, the IOM contract to produce a clinical definition does not affect ME/CFS research, clinical trials, public policy, etc. The DHHS plans to produce a ‘Research Definition’ that will determine which types of patients can participate in research studies, clinical trials, etc., but that is not this definition. This definition produces a description so that doctors can recognize ME/CFS when they see it.)
The Buzz About ME/CFS – No journalist has covered ME/CFS in greater depth than David Tuller of the New York Times. In this Buzzfeed article David Tuller references the history between the chronic fatigue syndrome community and the federal government as he takes a look at the IOM contract to produce a clinical definition for ME/CFS,
No Magic Bullets for Fibro But ‘Slow and Steady Return to Wellness Possible”– post from the Huffington Post does nice job outlining the cost of FM and an FM patient for whom an integrated disease management program helped
Treatment
Pharmaceutical Company Touts Fibro Drug in Public Offering – Tonix Pharmaceuticals raised $43 million dollars in its public offering. The companies main product TNX-102 is aimed at fibromyalgia and PTSD and the first TNX-102 trial for fibromyalgia is underway. The company believes the drug will enable people with FM to get restorative sleep. (It looks like some investors agree.).
Peterson/Kogelnik/OMI MFTHR B-12 Fundraising Effort Gathering Speed -the crowdfunding effort to produce a B-12/Folate trial in people with ME/CFS who have the MFTHR mutation has surged forward. With 15 days to go in the $150,000 campaign $100,000 has been pledged! Support the project here. (Learn more about it here.)
Need A Massage? – Indiana FM trial looking for volunteers to test out its mechanical massage tool to massage your stiff, painful muscles away.
Blogs
The Mood Blogs
Check out ways to reduce stress from two ME/CFS bloggers
How to Get Out of a Bad Mood – Even Toni Bernhard can be a in bad mood at times (what!) and she was in a doozy before Christmans last year. Check Toni’s tips on getting out of a bad mood (including cutting yourself some slack) here.
How to Let Go of Anger and Reduce Your Stress and Pain Levels – research studies link increased stress to increased pain, and there’s more than enough stress to go around in ME/CFS. Check out a technique Johannes Starke has successfully used with his clients to reduce anger and stress and feel better.
Advocacy
ME/CFS Advocate Bob Miller Likes What He Sees – Providing a bit of a different perspective, Bob Miller asserts with ME/CFS advocates on the alert, the federal government is actually moving forward on ME/CFS as he reports on a federal Workshop he attended. Check out his Facebook post here.
Events
CDC ME/CFS Talk scheduled – Tuesday, February 25, 2014 – 3:00 pm – 4:00 pm EST – CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference. Call number: 1-800-369-3365 Participant Code: 1471493
Meeting Agenda
3:05pm Updates from CDC – Elizabeth Unger, PhD, MD/ Branch Chief, Chronic Viral Diseases Branch/Centers for Disease Control and Prevention
3:15pm “CFS and Cognitive Function” – Gudrun Lange, Ph.D./Consultant Clinical Neuropsychologist/ Pain and Fatigue Study Center/ Beth Israel Medical Center, NY, NY
Others
It was an easy choice. Jenn Brea of the Canary in a Coal Mine Film project is Prohealth’s ME/CFS Advocate of the Year
Prohealth Advocate of the Year – the person with ME/CFS behind the incredible phenomena that the Canary in the Coalmine film project has become is obviously Prohealth’s Advocate of the Year
Prohealth Making a Difference for Health Rising Month Continues. A recent study found low Vitamin D3 levels in FM and raising them reduced pain levels. Is your D3 low?- Buy Prohealth for the next week and make a difference for Health Rising.
Shop Prohealth and Support Health Rising Here
Frank Ruscetti Back at Work on ME/CFS – Dr. Frank Ruscetti mentored Dr. Judy Mikovits and retired from the NIH not long after XMRV didn’t work out. Dr. Enlander reported that he’s donated samples to the Mt Sinai ME/CFS Research Center and is back at work on ME/CFS.
Cort,
The app sounds really helpful. Do you anticipate doing an Apple friendly version soon?
Lots of people would like to have an Apple version. I haven’t heard back from the developers that they were planning to do one for Apple. (They rebranded the app for Health Rising.) If they are I’ll announce it on the blog.
How about just a paper book version???
I wonder if some the charts over CFIDS Self Help would help? Bruce Campbell has quite a few organizational self-management tools over there.
Cort, thanks for compiling this information in one place. It will be so helpful when I mark my calendar.
The app is intriguing. Looking forward to hearing feedback.
this interesting study on GWI might be relevant to CFS?
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1402A&L=co-cure&P=R195