Here I share a concrete 3-step “Super-Powered” journaling practice I learned from Ryan Holiday, Dr. Jeffrey Rediger, and Rachel Hollis to maintain focus while keeping a healing mindset in place and your chronic fatigue syndrome (ME/CFS ) recovery on track!
Tired and wired
Alex explains the concept of tired and wired in ME/CFS, an important stage to recognize in order to properly treat the right stage of the illness.
This is common in multiple sclerosis and fibromyalgia as well
As many of you know over the last few years Donnee Spencer has been producing a series of brilliant medical condition awareness butterflies. You can see more of her work here.
ME/CFS Myalgic Encephalomyelitis/ Chronic fatigue syndrome
She has very graciously given us permission to reproduce them on the blog.
Today we would like to share her ME/CFS awareness butterfly. Often associated with Fibromyalgia we would be honoured if you would like and share with other members of the fatigue community.
Many thanks.
ME awareness week
Many of us around my age can remember the term “yuppie flu” from the eighties. In fact for many of us this was the first time many of us came across the medical condition ME or Myalgic Encephalomyelitis. Also called CFS or Chronic fatigue Syndrome. It also is a common partner of fibromyalgia.
This week is dedicated to raising our awareness of ME and the excellent work conducted by Action for M.E.
They have produced the brilliant graphic above which we would love if you could like and share to show your support for the week and the need to spread CFS awareness.
On their excellent web site’s (and you can’t say that about many medical sites) media center they have written this great introduction to M.E. which we have reproduced. The links are to their site so we can recommend them.
10 key facts
1. M.E. (Myalgic Encephalomyelitis) is a chronic fluctuating illness, also known as Chronic Fatigue Syndrome (CFS or CFS/ME). It is sometimes diagnosed as Post-Viral Fatigue Syndrome (PVFS).
2. M.E. affects around 250,000 (1 in 250) people in the UK, including men, women and children of all social/ ethnic backgrounds. The youngest person diagnosed in the UK became ill aged two. As many as 25,000 young people and children may have M.E.
3. Our Time for Action campaign, launched in February 2012, is fighting to end the ignorance, injustice and neglect of M.E., once and for all.
4. The National Institute for Health and Clinical Excellence (NICE) guideline on the treatment and management of CFS/ME (2007) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis and congestive heart failure.
5. Symptoms vary from person to person but may include persistent exhaustion (‘fatigue’), muscle and/or joint pain, sleep disturbance, headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration.
6. The article, How common is M.E., by Professor Derek Pheby, discusses the prevalence of the illness.
7. The cause of M.E. is unknown but certain viral infections are thought to be among the potential triggers.
8. M.E. is a long term illness. Most people with M.E. will improve over time and resume normal activities but not everyone recovers to pre-illness level. Others continue to experience symptoms or relapse and some people with severe M.E. may remain housebound for many years.
9. Our 2006 survey, M.E. more than you know, showed that 77% of people with M.E. lose their jobs because of the illness. Other key facts may be found in our Election manifesto for M.E. (2010), Scottish election manifesto for M.E. (2011) and consultation reports, M.E. 2008: what progress?, No one written off (work and welfare reform 2009) and Future of care(2009).
10. International M.E. Awareness Month, Week and Day focus on 12 May, the date of Florence Nightingale’s birthday.
HealClick
Welcome to our latest guest post on healthcare and social media
Today Rachael Korinek introduces us to to HealClick and new social media website for patients to discuss healthcare issues.
Korinek shares “HealClick is a brand new and completely free website created for patients and by patients. This unique hybrid of social network and medical forum matches people based on shared details like diagnoses, symptoms, and treatment responses. This makes it much for patients to share and compare treatment experiences. The data that you and other patients provide will be made completely anonymous so it can fuel new research for autoimmune and neuroimmune conditions like Fibromyalgia, Rheumatoid Arthritis, Lupus, Lyme Disease, ME/CFS, and so many others.
Sign up at www.HealClick.com
Help us grow at www.indiegogo.com/projects/revolutionizing-patient-sharing
This project was created by a team of patients in 2013. The co-founders are both chronically ill with multiple neuroimmune and autoimmune conditions. This unique perspective has allowed them to create a site that truly caters to the needs of patients.
Forums are extremely helpful when researching treatments and for connecting with other patients. But, what about when you can’t find anyone your age? Or when it seems like no one shares your set of co-conditions and symptoms? What about when you don’t respond normally to standard treatments? Come on over to HealClick.
Our unique matching feature allows you to focus on what’s important; your health. The site factors in your diagnoses, symptoms, treatments tried, and treatment responses and then tells you how similar you are to every other member. No more guessing whether you and another member share medical details in common, just check the match percentage under their profile picture.
Sometimes networking with people with different conditions can be just as beneficial as talking to someone with the same illness. We currently have patients representing over 20 different neuroimmune, autoimmune, and related conditions. Since we have so many conditions represented on our site you can also see how patients with other diagnoses are managing similar symptoms. There are many symptoms like fatigue that are common with multiple conditions and we believe that patients can learn from these other patients even though they might not share a diagnosis.
By combining information from your medical matches and ideas from patients with other conditions we believe that you will be better able to take charge of your health care. Come sign up, make meaningful connections for social support, share your treatment reviews, and compare your results with the results of other patients. Who knows, you might even end up with some new ideas to bring up at your next appointment with your Doctor!
Whenever people share their experiences and network with other patients online they generate huge amounts of data. Previously, the majority of this valuable health data has gone unused. What if instead, all of this data could be used by medical researchers to help diagnose, treat, or even cure us? That’s HealClick’s goal. But don’t worry, we take pride in protecting patient privacy every step of the way. The data that you share on the site will never be made public and will be completely stripped of all identifiers before being shared with researchers. Check out the link for more information about HIPAA-compliant data security.
We are so excited to share this technology with you. We also want you to know that we pride ourselves on being there for patients. I don’t have to tell you that having quality social support is important. Chronic illness can be incredibly isolating and hard for other people to relate to or understand. The founders as well as the entire HealClick team all patients. We understand what you’re going through on a personal level and we strive to make HealClick a place where you can find support on bad days and celebration on your good days.
Come join us at www.healclick.com. We can’t wait to meet you!
Still have questions? Check out our blog for answers to 5 frequently asked questions: http://blog.healclick.com/uncategorized/we-got-answers