It’s sometimes so hard to find all the social media pages & people supporting others with CFS / ME / FM, so I’ve compiled a list of all the Facebook pages I could find, with summaries copied straight from FB.
This first post is of CFS / ME / FM Facebook pages, and the next will be a list of the groups.
This list is broken up into sections – General Support/Experience pages, Official Support Groups, & Non-Profit Organisations.
I’ve done a similar list of CFS / ME / FM people on Twitter, but it desperately needs updating as it was done over a year ago. Stay tuned for the update, but check it out to make sure you’re on it if you’re a Spoonie on Twitter.
In this FB list I have only included pages that have had activity on them this year. They are in alphabetical order, and there’s every chance I’ve missed many if they do not have CFS / ME / FM in the name.
If I have missed yours or one that you know of, just leave a comment below or contact me directly via Twitter or Facebook. (PS some of this info was collected some time ago, so the number of Likes will have probably changed)
CFS / ME / Fibromyalgia Facebook Pages
The Get Up And Go Guru – My Page (Sorry I had to jump the alphabetical queue!!) 🙂
313 Likes
About
The Get Up And Go Guru is a website dedicated to empowering people with Chronic Fatigue Syndrome (CFS/ME/CFIDS), Fibromyalgia & other Spoonie illnesses to continue to follow their passions and live their purpose while responsibly managing their illness.Louise Bibby (me!), the founder the the site, offers one-on-one coaching to people with CFS/ME/FM & is developing online coaching programs to be released later this year.Many of the blog posts on www.GetUpAndGoGuru.com are also available as downloadable audio blogs (search audio blog in the search bar, then scroll to the bottom of the post for the player & download option). This is so that people in bed (or who just prefer audio) can still ‘read’ the blog. Soon it will be an official podcast on iTunes.
Louise is also working on a new podcast dedicated to people with CFS / ME / FM who are living their passions and purpose via online means. She will interview these people and share their stories with you.
There are many plans for The Get Up And Go Guru (the name is explained in the About section of the page! I know it’s a weird name for a person with CFS/ME who is blogging for people with CFS/ME, but it’s the spirit it captures that is what I’m all about).
Stay tuned for new developments – and blogs – on a regular basis.
The recent 31 Days To A Better CFS Life blog series is a popular series (still a work in progress). Check it out over on the site.
And if you’re on Twitter, please say hi – @GetUpNGoGuru – or on Instagram – LouiseBibby72 (#365Gratefuls #spoonie photos in side bar of the Facebook page). And I’m even working on a Pinterest account :-).
Please leave a comment when you resonate with a post. I love getting comments and talking to the Guru Crew.
I’m thinking about calling my new podcast The Guru Crew: CFS/ME & Other Spoonie Warriors Living Their Purpose Online. What do you think?
Welcome to our community. I’d love to think we can build a caring, sharing page here that will make a difference to your life.
Keep Smiling
Louise Bibby
B. Psych B.A Hons (Psych)
A Diagnosis of Exclusion- Juliet Chenery Robson
Community
324 Likes
About
Portraits detailing the lives of those living in the shadow of Myalgic Encephalopathy or ME
Description
Juliet Chenery-Robson began her photographic research when her 13-year-old daughter, Emilia became ill with ME or Myalgic Encephalopathy. As there are many misconceptions surrounding this illness she decided that by portraying ME through photography as a part of her MA, (and now via a PhD) she could help raise awareness about the illness to audiences who perhaps disbelieve or do not understand the complexity and severity of ME.
Awareness & Support against Fibromyalgia, Fatigue (cfids), & Chronic Pain.
Community Organization
1,342 likes
About
You can’t see air, you can’t see Fibromyalgia. If I believe you’re breathing, why can’t you believe I’m hurting?
Mission
Educate, empathize and be a support system for one another.
Description
This page is for all who have fibro, CFS or any other pain disorder including IBS, IC, ME, arthritis, Lupus etc…… And for people who have loved ones with any of these disorders Share holistic remedies that work instead of chemicals that doctors want to constantly feed us. Share any information you like, including if you just want to let it all out. We are all here for each other. If you just need to let your frustrations, you can do it here. We listen and don’t judge. Empathy is big on my page. We would also love to hear any inspirational stories and breakthroughs or relevant news and research about these chronic illnesses.
Just please note I do NOT advocate the use of pharmaceuticals to improve health and do not support its publicity on my page.
Together we may be able to come up with answers and help raise awareness and cures to our plight. Until then, we will be shoulders to cry on and keep one another up.
Gentle hugs, Sheri
Beating Chronic Fatigue Syndrome- ME.
Community
131 likes
About
Chronic Fatigue Syndrome
Description
A page where you can learn more about the illness, the symptoms, the reality of living with the illness and also what can help ease the symptoms of cfs/me.
Please follow on Twitter @SvenskaSarah95 for more information, additionally request to join the online Facebook group, “More research for ME/CFS petition” to add your name to the petition.
Breaking Down The Barriers – A Wellness Journey
2482 Likes
About
Join me on my wellness journey as I break down the barriers to a healthy balanced life. My aspirations for this page are to inspire like minded people who also have/had obstacles in their pathway to happiness and to show you and myself that I deserve to be happy and healthy and so do you! On this page I will share inspirational quotes, my favourite recipes, my triumphs and even my downfalls etc. My ultimate dream is to live an active, happy, healthy, balanced life and to be able to do all the things I love!A Bit About Me:Hi I am Anita, I am 27 and I have been suffering with autoimmune disorders and anxiety depression since my early teen years. I was diagnosed with Chronic Fatigue Syndrome/Fibromyalgia and anxiety depression as a young teen and later on found I also had PCOS and Seronegative arthritis. Some days I can feel good and then be bed ridden the next or sometimes I can feel great for an hour or two but then the rest of the day I can be sick as a dog. This has made it hard for family and friends to understand what I am going through, as they only see me when I’m well or when they think I’m well lol (sometimes I am just pushing myself and have found it easier over the years to sometimes just not say anything :-/ ) Anyway that is why I have created this page, to inspire myself and others who are or know anyone who are battling through their own obstacles, I have no doubt (like they say) that there is a light at the end of the tunnel. I think some tunnels are just a lot friggin longer and tedious than others lol Hope you enjoy my page. Love Anita xx
Breathing Remedies (For ME / CFS / FM & Other Illnesses)
I am a breathing educator helping ME/CFS/fibromyalgia, asthma and allergies, anxiety and stress, snoring and sleep problems – Dr Janet Winter. www.BreathingRemedies.co.uk
Mission
To help people with chronic fatigue (ME/CFS) to improve their health by better breathing (Buteyko technique). Also helps asthma and allergies, anxiety and stress, snoring and sleep problems
Description
BUTEYKO: Natural, drug-free control of ME/CFS/fibromyalgia, asthma and allergies, anxiety and stress, snoring and sleep problems.
For people who do not get adequate symptom control /have side effects with drugs, or need more and more medication, or prefer to control their health without drugs if possible.
Breathing retraining for chronic or hidden hyperventilation (overbreathing) related health problems.
General Information
Better symptom control with less medication. Buteyko Breathing method has been in the British Thoracic Society guideline on Asthma since 2008.
Dr Janet Winter is a Qualified Buteyko Method practioner. She also has a PhD in Life Sciences and worked in Pharmaceutical research for many years.
Health/Wellbing Website (A Spoonie site, NOT a CFS/ME/FM site, BUT it’s the source of the whole “Spoonie” movement)
About
The Facebook home of http://www.butyoudontlooksick.com/
The mission of ButYouDontLookSick.com is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone. We believe that our medical circumstances have put us in a unique and understanding position, so that we can help each other through similar difficult times. We hope the information and community on our site can aid people in leading better lives through knowledge, networking, friendship and most of all support.
In addition to the articles in our website/ e-magazine, we have grown to include a very active message board and chatroom, as well as an online gift shop. We are excited to see these additions to our site and to watch the ButYouDontLookSick.com community grow and prosper.
ButYouDontLookSick.com magazine is about living life to the fullest with any disability, invisible disease, or chronic pain and features a collection of articles, personal stories, book and product reviews, health resource
may be shared with anyone – Be sure to link to Butyoudontlooksick.com and the author Christine Miserandino.
CF Alliance – Chronic Fatigue, Fibromyalgia, Myalgic Encephalomyelitis
Health/Medical/Pharmaceuticals
1,297 likes · 385 talking about this
Website: http://www.cfalliance.org
About
Support & information specifically about Chronic Fatigue Syndrome, Myalgic Encephalomyelitis & Fibromyalgia (& their related illnesses).
Description
The CF Alliance offers free support, information and services specifically for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and related illness sufferers of all ages, including their families, friends, support groups and caregivers worldwide.
‘Knowledge is Power.’
Join Our Discussion & Information Exchange:http://health.groups.yahoo.com/group/CFAlliance/
Health/Beauty
712 likes · 45 talking about this
About
Visit www.cfsfacts.org and http://cfs-facts.blogspot.com/ for information about this disability.Join us at http://groups.yahoo.com/group/CFS_Facts . Facebook page now accessible as:www.facebook.com/cfsfacts
Mission
Dispelling the myths and providing the facts about CFS and fibromyalgia
Health Clinic
9,457 likes · 83 talking about this
Website: http://www.cfshealth.com
About
World wide health centre dedicated to helping people with Chronic Fatigue Syndrome
Mission
“Where CFS stands for Choice, Future, Success.”
Biography
Toby Morrison suffered Chronic Fatigue Syndrome (CFS) at the age of 16 for over four years. Now fully recovered Toby uses his first hand knowledge and inspiration, combined with his health and fitness background to help people suffering with CFS live a healthier, happier life! The results have been amazing!
Description
At the Chronic Fatigue Syndrome (CFS) Health Centre we strongly believe that we can make positive changes in all areas of our lives that will then lead to better health.
Through progressive, safe exercise, nutritional guidance, personal development on mindset and attitude and support from someone who has been there and fully recovered from CFS. We have a world wide online program available and is already assisting thousands of people in over 13 different countries.
My goal is to help each individual to better health. Visit us atwww.cfshealth.com
CFID’s & Fibromyalgia Dating & Support
Community
35 likes
About
A place to meet and make new friendships, date, or find the love of your life. We ask that you “LIKE” our page so that we may receive Facebook recognition.
Description
Welcome to CFIDS/FM Singles! This group is designed to be BOTH a DATING SITE and a SUPPORT GROUP! The purpose of this site is to unite singles with CFIDS/FIBRO. Who are looking for a possible companion/mate/friend with the same illness.
Cfids/CFS/ME/Fibro Awareness
Community
195 likes · 12 talking about this
About
A forum to help those who are experiencing difficulties with Cfids/cfs/me/fibromyalgia and other related illnesses and for sharing information regarding same.
ME CFS Fibro Lyme MCS Auto-immune illness Blogs
About
Health/Wellness Website
288 likes · 1 talking about this
Website: http://cfspatientadvocate.blogspot.com
About
I am the patient advocate of my 37-year-old daughter. She is housebound in St. Paul MN with CFS/ME. My blog, cfspatientadvocate.blogspot.com, presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others’ comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.
Education Website
1,327 likes
Website: http://cfsonline.blogspot.com
About
all about CFS IIUM
Health/Beauty
2,196 likes · 39 talking about this
Website: http://cfsunravelled.com/
About
www.cfsunravelled.com – this website is dedicated to raise hope for recovery from Chronic Fatigue Syndrome and Fibromyalgia and to support CFS sufferers by sharing research and understanding of how CFS works.
Chronic Fatigue Syndrome (متلازمةالتعبالمزمن)
Health/Beauty
41 likes
About
Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems.
Chronic Fatigue Syndrome – Myalgic Encephalomyelitis & Fibromyalgia Group
Community
48 likes
About
Chronic Fatigue Syndrome & Fibromyalgia are chronic illnesses that are elusive in diagnosis & incurable. This group will provide facts, helps, coping skills, information and help raise awareness & understanding of these frustrating and painful illnesses.
Description
We promote as a CFS/ME, FMS Site…but we are much more than that. We encompass any and all chronic immune disorders and pain inducing illness. MS, Dermatomyositis (something my husband has just been diagnosed with), Migraine Disorder, Addisons, Sjogrens, Chemical Sensitivity Disorder, Even PTSD! All of these can, for the most part, be considered the “Invisible Illnesses” that seem a product of the 20th and 21st Centuries. Elusive and hard to define/treat. And definitely hard to cope with. We are here to support you in any way we possibly can. To inform the public about these troublesome and perplexing diseases, and to provide information that both those who have the disorders, as well as the families/friends, care-givers of the aforementioned. If you have questions, please ask. Send a PM or post…we’ll try to answer as soon as possible.
Sincerely,
Linda (a 37 yr. survivor of CFS/ME, FMS, MPD, and other chronic illness)
as well as wife, mother, sister, aunt, dog/cat mom, friend, support leader and advocate. A published author and poet. Nice to meet you.
متلازمة التعب المزمن – Chronic Fatigue Syndrome – CFS (Arab CFS Page)
Community
27,682 Likes
About
Page awareness about chronic fatigue and disease correlated – we share medical advice, but offer information about the disease and how to live with it –
Description
Diseases covered by this page:
Chronic Fatigue Syndrome
Myofasical Pain Syndram
Chronic Muscle Pain
Chronic Myofasical Pain
Chronic Fatigue Syndrome Awareness
Community
7,619 likes · 114 talking about this
About
Facebook community for those affected by Chronic Fatigue Syndrome (CFS) to share information, connect with others and gain support for this condition that impacts more than 1 million Americans.
Mission
Open sharing of views and opinions is encouraged. We do ask that visitors are respectful of others and that they refrain from the use of profanity. Posts that are disrespectful or profane in the opinion of the page administrator are subject to removal from the page.
Description
Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.
The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.
There’s no single test to confirm a diagnosis of chronic fatigue syndrome. You may have to undergo a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief.
Learn more about CFS:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224/
Conquering Fear Spiritually: A Community Dedicated To Healing CFS/ME – From The Inside Out
https://www.facebook.com/conqueringfearspiritually
Chronic Fatigue Syndrome. An ebook by Roberta Pelletta.
Community
83 likes
About
A chronic illness is a sort of adventure, like leaving on a long journey. One is due to be often very surprised during a journey…
Conquering Fear Spiritually
1062 Likes
About
A website and community inspired by my complete healing from CFS/ME after a 10 year illness. There are no confusing medical reports, there’s no negativity or telling you you’re not going to get better- just healing and hope for your healing (it’s already yours!)
I offer coaching, nutritional and spiritual advice and ways in which you can begin to heal yourself completely of this illness.
See my ‘About’ page for more details: http://conqueringfearspiritually.com/about-me/
Coaching packages: http://conqueringfearspiritually.com/cfs-coaching/
Counting My Spoons
1106 Likes
About
-
http://www.countingmyspoons.com – Positive living with invisible chronic illness.
-
Long DescriptionSpoonie life with chronic illness, Fibromyalgia, migraines, cluster headaches, endometriosis and general chronic pain issues. Sharing inspiration and news.
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AwardsTop 15 Fibromyalgia Blogs of 2014
-
Emailjulie@countingmyspoons.com
Fibromyalgia& Cfs Support
Community
2,653 likes
About
Fibromyalgia is real we are for support for those who have it an to help those who don’t understand it better.
Description
Fibromyalgia is real so are the many men an woman who have this hellish disease. We are here for support to you who have it an those who don’t have it maybe we can help you understand it a little bit more. We are not Doctor’s so we can not an will not diagnose anyone. But we will answer question to the best of our ability. This page is a place you are welcome to come an vent, share your what you are going threw an no one will pass judgement here. Feel free to post video’s or link’s an picture’s we would love to see them :). Also know that we both have Fibromyalgia an Cfs so we know what you are going threw so it is ok for you to swear you will not get in trouble lol an you can ask question’s about any an everything having to deal with fibro. Our main goal is to let people know that this (Disease) is real so is the pain an the insomnia an panic attacks, the depression is real. An to offer support in any way we can so please enjoy our page an if you have any question feel free to ask one of us an we will try to help you the best way that we can …. Hope you enjoy the page.
Community
7,670 likes
About
Fibromyalgia Syndrome (FMS ) and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) ME/CFS and FMS are complex illnesses that can be debilitating. There is a wide overlap of symptoms in ME/CFS and FMS.
Description
What Is Fibromyalgia?
Fast Facts: An Easy-to-Read Series of Publications for the Public
Fibromyalgia is a disorder that causes muscle pain and fatigue (feeling tired).
People with fibromyalgia have ‘‘tender points’’ on the body. Tender points are
specific places on the neck, shoulders, back, hips, arms, and legs. These points
hurt when pressure is put on them.
People with fibromyalgia may also have other symptoms, such as:
• Trouble sleeping
• Morning stiffness
• Headaches
• Painful menstrual periods
• Tingling or numbness in hands and feet
• Problems with thinking and memory (sometimes called ‘‘fibro fog’’).
A person may have two or more chronic pain conditions at the same time.
Such conditions can include chronic fatigue syndrome, endometriosis,
fibromyalgia, inflammatory bowel disease, interstitial cystitis,
temporomandibular joint dysfunction, and vulvodynia. It is not known
whether these disorders share a common cause.
For More Information About Fibromyalgia and Other Related Conditions:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892–3675
Phone: 301—495–4484
Toll free: 877–22–NIAMS (226–4267)
TTY: 301–565–2966
Fax: 301–718–6366
Email: NIAMSinfo@mail.nih.gov
Web site: www.niams.nih.gov
The information in this fact sheet was summarized in easy-to-read format from information in a more detailed NIAMS publication. To order the Fibromyalgia Q&A full-text version, please contact the NIAMS using the contact information above. To view the complete text or to order online, visit
www.niams.nih.gov.
For Your Information
This fact sheet may contain information about medications used to treat the health condition discussed here. When this fact sheet was printed, we included the most up-to-date (accurate) information available. Occasionally, new information on medication is released.
For updates and for any questions about any medications you are taking, please contact the
U.S. Food and Drug Administration toll free at 888—INFO–FDA (888–463–6332) or visit its Web
site at www.fda.gov.
What to Ask About Chronic Fatigue Syndrome
By DAVID TULLER
Confronting a new diagnosis can be frightening, and because research changes so often, confusing. Here are some questions you may not think to ask your doctor, along with notes on why they are important.
Why is it so difficult to diagnose chronic fatigue syndrome?
Scientists have not yet identified any biological or physiological markers that are specific for C.F.S., although significant strides are being made in research in this area. Doctors do not have any medical tests to make a definitive diagnosis, although they may ask you to undergo tests to rule out other conditions.
So how is a diagnosis made?
To receive a diagnosis of C.F.S., a person must have fatigue that cannot be explained by other causes as well as four out of eight other symptoms, all for at least six months. The other symptoms include impaired concentration and memory, recurring sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and malaise after exertion. The difficulty is that all of these symptoms occur in other conditions as well.
Why haven’t doctors taken my concerns seriously?
Doctors are not necessarily more educated about C.F.S. than the public, so they can be subject to the same prejudices. Some of them still think that people with symptoms of chronic fatigue are actually suffering from a psychological illness, so they may refer the person to a therapist.
Publish date: 5/30/2008
Get Well From M.E
Community
1,054 likes
About
Sharing information and raising awareness about ME (Myalgic Encephalomyelitis, as well as treatments & ideas for managing the disease (sadly not cures yet)
Description
ME (Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome CFS) is a serious and often severely disabling long-term neurological illness which also affects the body’s immune system, hormones, muscles and circulation. Up to 250,000 people in the UK have ME, and millions around the world. There is no cure yet. But in these video blogs I hope to bring together some of the best available wisdom and advice to help people manage ME and hopefully even look forward to getting at least partly better or even making a good recovery – whilst genuinely seeking to understand and support people with severe ME and who, through absolutely no fault of their own, are not getting better.
Green Girl Fights Fatigue
Health/Wellness Website
696 likes
About
Inspiring Hope for Recovery from Chronic Fatigue Syndrome
Description
I’m Melanie Brennan (aka Green Girl Mel).
I’m an Environmental Scientist who’s been struggling with the dreaded Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) for over two and a half years.
I’ve found that there is a real need for me to keep my hope and spirits high or I drop into a dark zone that does nothing for my recovery.
So I’ve been inspired to start a blog http:www.greengirlfightsfatigue.com.au to ‘Inspire Hope for Recovery from Chronic Fatigue Syndrome’.
I blog about what’s helped me, what’s helped others and what might help us in the future! Basically anything that keeps me focused on the positive.
So please join me in keeping hopes high and like my FB site, comment on my wall and visit and comment on my blog.
Love to hear about your journey and what helps you.
GWI/CFS – Non Deployed Veterans – Gulf War Illness/Chronic Fatigue Syndrome
Health/Wellness Website
577 likes
About
SURVEY: http://polldaddy.com/s/770F1DBB56742059
We are the forgotten generation of Gulf War Deployed Veterans, NonDeployed Gulf War Era Veterans, Operation Enduring Freedom/Operation Iraqi Freedom Veterans, and family members that are suffering with illnesses defined by Gulf War Illness (GWI).
We collectively see areas for immediate change:
• Transparency from all agencies involved in the Gulf War Illness
• All GWI research findings be declassified and shared with the public
• NonDeployed Gulf War Era Veterans need inclusion in presumption laws/research/treatment
• Registry/Network for Ill Gulf War Era Veterans pre 9/11 through current conflict or until the war is declared closed by Congress
• Train VA practitioners to identify GWI
• All outside medical diagnoses and nexus letters should carry more consideration than the C&P exams
• FAST TRACK on claims and appeals with medically trained raters from 3rd party
• Uphold the benefit of a doubt clause and stop ignoring Part B of the unemployability regulation
• Repeal the quota system within the claims process
• Funded research into alternative medicine and its treatments
• Medical marijuana research funding for GWI treatment
• Financial assistance given to veterans awaiting claims decisions to help prevent the financial devastation that results from waiting 2-10 years for decisions
Improve and apply lessons learned from past practices and policies that can improve today’s programs and services supporting all Gulf War Era Veterans. We stand together in solidarity with all the lives lost due to death and disability.
http://www.facebook.com/NonDeployedGWI
http://www.NDGWI.Blog.com/
NonDeployedGWI@gmail.com
SURVEY: http://polldaddy.com/s/770F1DBB56742059
Survey by NDGWI – NONDEPLOYED VETERANS to gather basic data to ground our results and make them useful to researchers.
I have Fibromyalgia / Chronic Fatigue Syndrome, but it Doesn’t Have Me!
Community
6,655 likes
About
Welcome to I Have Fibromyalgia/Chronic Fatigue Syndrome, but it Doesn’t Have Me! a Facebook page where positive thoughts, images, and affirmations combine to create art for healing inspiration.
Description
“I Have Fibromyalgia/Chronic Fatigue Syndrome, but it Doesn’t Have Me!” has been my mantra since I first “crashed” with my fibromyalgia in the fall of 2002, became completely “bedridden,” and spent months in isolation. (It’s also the title of my memoir: Balboa Press, 2011.)
I created this page to PROMOTE POSITIVE FIBROMYALGIA and CHRONIC FATIGUE SYNDROME AWARENESS, EDUCATE, INSPIRE, & PROVIDE HOPE.
As a form of my own therapy, I paint positive affirmational quotes and write (articles and books) about living with and reaching beyond fibromyalgia. Because there is HOPE! Because, fibromyalgia DOESN”T have to have YOU! (www.chantalhoeysanders.com)
Today, I am no longer “bedridden,” but I understand what it is like to feel hopeless and helpless and live with the daily pain and fatigue of this chronic invisible illness. Thanks to the Guaifenesin Protocol as developed by R. Paul St. Amand, MD, I consider myself a “work-in-progress” and have gradually been reversing my fibromyalgia and regaining my life. THIS IS MY ELEVENTH YEAR!
My HOPE for YOU, by sharing my story, is that you can realize that YOU too, can BECOME fibromyalgia SURVIVORS rather than SUFFERERS!
www.chantalhoeysanders.com
Jess’ m.e./cfs Blog- support for chronic illness sufferers
61 Likes
About
I have been ill with ME/CFS for over 4 years now and am looking to share my experience with others. Here to offer support and understanding. Or just like to see updates from my blog 🙂
Contact Info
http://jesscfs.blogspot.com
Klub pacientů s myalgickou encefalomyelitidou/chronickým únavovým syndromem (Czech Republic)
Community
112 likes
About
Striving towards better life for those suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, towards accessible healthcare and social welfare in the Czech Republic.
Description
The activities of the Club of Patients with ME/CFS (http://www.me-cfs.cz/view.php?cisloclanku=2011070201) are carried out by a group of volunteers who are patients, their family members and friends of families of the affected. We are not an independent association, our activities are carried out under the auspices of The Czech Association of Patients (http://www.pacienti.cz/).
The object of our interest is the difficult medical disease Benign Myalgic Encephalomyelitis (abbreviated to ME) which is classified by the World Health Organization as a neurological inflammatory disease. Unfortunately, a newer name – Chronic Fatigue Syndrome (abbreviated to CFS) – has become more established around the world. This name demotes the whole issue of ME to problems with chronic fatigue only. The result of this is essentially a misunderstanding of the disease which in reality causes dysfunction of the regulation of the entire body and its systems. The level of disability in CFS is comparable to Multiple Sclerosis, final stages of cancer or organ failure. Everyone knows, due to awareness raising, how serious Multiple Sclerosis is, that it can cause a person to become wheelchair-bound, everyone knows how difficult fighting cancer is. But nobody knows of the suffering of people with ME/CFS, especially those suffering with the severe form of the disease – nobody, except those close to them, knows anything, nobody helps them and nobody supports these families. People affected with ME/CFS find access to healthcare very difficult. Department of Social Welfare refuses to accept the disability caused by ME and patients are often dependent on help from family or friends only.
On one hand, we have a serious disability incompatible with normal functioning. On the other hand, zero awareness and zero interest from the responsible institutions.
Join us on Facebook, you will increase awareness about ME/CFS and show your moral support to the families affected.
USING THIS PAGE:
The goal of the Facebook page ME/CFS.cz is to make the issues surrounding this disease more visible and inform the general public about these issues. We are interested in the opinions of the visitors to this page who make contributions that are on topic and with the intention of providing useful information to other users of this page or presenting supplementary information to the published posts which can help with creating awareness. Using our Facebook page for advertising or linking to pages with illegal content is prohibited. Violating written as well as unwritten rules of civilised society is unacceptable on this page.
The administrator of this page is able to delete comments or ban people who do not respect the purpose of this page and misuse internet anonymity.
Posts on this page may not always reflect the opinions of the Editorial Team of the Club of Patients with ME/CFS.
Living with Chronic Fatigue Syndrome
Health/Wellness Website
131 likes
About
We share and create resources for people living with CFS/ME so we can all live a happy and healthy life full of energy; while raising awareness of a largely misunderstood disease.
Description
The purpose of this page is to grow a community of people living with CFS/ME and their family, friends, and supporters. This is a largely misunderstood and devastating disease and my hope is that, as a community, we can raise awareness and find some answers.
~*~We all deserve a healthy and happy life!~*~
ME Awareness Efforts by Jenny & Gordon
Community
46 likes
About
ME is a debilitating neurological condition. There is no cure.
Description
Jenny has had ME for 36 years and is currently severely limited by the condition. Over the years there have been times when she has only been partially affected but the last 2 years have been overtaken by it. Her husband Gordon is her main carer. As International ME Awareness Day is May 12th, Jenny and Gordon have chosen the month of May to promote awareness of this debilitating condition and to raise funds for vitally needed bio-medical research.
ME (myalgic encephalomyelitis) is also referred to as CFS (Chronic Fatigue Syndrome), post-viral fatigue syndrome (PVFS) and chronic fatigue immune dysfunction syndrome (CFIDS).http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
ME / CFS Diary
Health/Medical/Pharmaceuticals
868 likes
About
The ME Diary Smartphone App helps sufferers of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) manage this debilitating condition.
Description
Find out more at www.mecfsdiary.com
Or go straight to the Download page and your App Store
http://www.mecfsdiary.com/download/
ME CFS Alert
Health/Wellness Website
624 likes
About
Hosted by world-renown journalist Llewellyn King and Deborah Waroff, MECFS Alert aims to help awareness of the disease as well as help discover treatments and comfort those affected. Watch the show here:http://www.youtube.com/user/MECFSAlert
Description
http://www.youtube.com/user/MECFSAlert
ME/CFS Australia (SA)
Medical and Health
714 likes · 7 talking about this
About
This site is particularly for members and supporters of the South Australian society, specifically for state-based activities and events.
Mission
To improve the quality of life and health management of people with ME/Chronic Fatigue Syndrome, whilst supporting community education and research initiatives, which will lead to recognition by government health providers of the need for better outcomes in service provision.
Company Overview
Vision:
People diagnosed with ME/CFS condition should be recognized as having a genuine illness and be entitled to equitable service provision. They should be entitled to fair treatment by medical and health professionals, as well as health and government service providers. They should not be discriminated against by health, medical, housing financial or educational bodies because of their diagnos… See More
Description
ME/CFS Australia (SA) Inc. is a not-for-profit, incorporated, registered charity, fully operated by volunteers and as yet without Government funding. We have been lucky to be able to continue to support our members as best we can by the generosity of our volunteers and that of our members and their donations.
General Information
The ME/CFS Society (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
As this group’s content and discussions may be contributed to by any member, it should not be taken as medical advice suitable for everyone. Bef…See More
ME / CFS Research Newcastle
Community
1,465 likes
About
Research into the causes and consequences of CFS/ME
Description
fatigueLAB
fatigueLAB brings together a multidisciplinary team of clinicians and researchers who are interested in the causes and consequences of fatigue. Many of the members work in chronic disease areas where we have recognised fatigue as an important symptom that influences the quality of life of patients. The group (previously known as the Newcastle Fatigue Interest Group) was brought together by Julia Newton in 2008 and is based at Newcastle University. The intention of fatigueLAB is to increase our understanding of fatigue and its consequences using high quality science performed in a specialist centre, many of the researchers have expertise in their areas that with fatigueLAB are being applied to the study of fatigue for the first time.
By bringing together the fatigueLAB team we can learn more about fatigue by learning from each other and applying techniques rapidly between disease groups. This approach has increased our understanding of fatigue and how it affects our patients. FatigueLAB includes experts in chronic disease management and those with expertise in cross cutting methodologies, we are also interested in the impact of fatigue and more recently we have been joined by epidemiologists, health economists, social scientists and health psychologists.
http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=12398
The group has recently been awarded significant funding from the Medical Research Council to understand the pathogenesis of autonomic function in CFS and the research team is hoping to use this forum to tell people about the progress of this study and disseminate its findings.
ME CFS Awareness
Community
1,298 likes
About
This page if for the awareness of ME CFS
You will also be able to look at the bracelets that are coming soon!
Description
Hi all! My name is Jensen, I am 20 years and live in the US. I got sick in November 2011, when I was 18 years. I made this page to spread awareness, and since doing so, I have had the chance to meet so many strong individuals.. Please feel free to write me with whatever you need :-)..
ME CFS Fibro Lyme MCS Auto-immune illness Blogs
Community
209 likes
About
Here you can find helpful blogs for Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) / Fibromyalgia (FM)/Lyme Disease (Lyme) / Multiple Chemical Sensitivity (MCS) / Auto-immune illnesses. Please feel free to add yours or any you discover.
ME/CFS Australia (Victoria)
Community
2,119 likes
About
ME/CFS Australia (Vic Tas NT) office hours Tue-Fri 9am-5pm. Our Office number is (03) 9529 1344. Our support line is (03) 9529 1600 Tues-Thurs 10am to 4:30
Company Overview
ME/CFS Australia (Vic, Tas, NT) is a not-for-profit charitable organisation dedicated to providing information, advocacy, education, awareness , find a cure and support to the ME/CFS community in Victoria, Tasmania and the Northern Territory.
Our services include:
– An information and support line, Tuesday to Thursday 10-4:30pm pm on (03) 9529 1600; free call back to any location in Australia … See More
Description
ME/CFS stands for – Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
General Information
Please note this page is not for advertising or product endorsement. Any advertising or endorsements not pertaining to ME/CFS Australia (Vic, Tas, NT) will be removed and the publisher blocked. This is a sharing and support group before posting your comments please consider whether what you have written is offensive, may upset others or whether it has been written in an inflammatory style.
ME/CFS-Evolving Science
Community
2,917 likes
About
Welcome to ME/CFS-Evolving Science – a hub for information and conversation about the latest research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Daily updates from reliable sources. Stay tuned!
Description
We are ME and CFS patients, from both sides of the Atlantic, with a genuine interest in the science of our diseases. Our aim is to bring you the best recent research news. Most of our posts are linking to the original scientific publications (with access to full text if freely available). We also post relevant commentaries from credible sources.
Thoughtful comments, representing a range of views, are welcomed and respected. We insist you stay on topic when commenting and that you make your point politely.
We won’t tolerate personal attacks, obscenity, vulgarity, profanity and commercial promotion. While most comments will remain posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can.
We don’t give medical advice, so we won’t respond to questions asking for it.
Note:
This page was started in May 2011.
ME/CFS research updates from 2010 through April 2011 can still be searched in the (now inactive) public group with the same name. You can find it here:https://www.facebook.com/groups/mecfs.evolvingscience/
Please note the old group no longer accepts members.
My Partner has Chronic Fatigue Syndrome / Fybromyalgia
Community
33 likes
About
A place to come and link with people who are in a similar situation to you. To talk, share, support, or just look and listen.
Description
Welcome!
This page has been set especially for all those people who have a partner with CFS or Fybromyalgia. This page is an opportunity for you to link up with people who are in a similar situation, people who understand what it’s like living with a partner who has one or both of these illness’, people who know what its like to be on the other side.
There is no set plan for this page, it can be whatever you want it to be so let me know your ideas!
I look forward to welcoming you to this community and sharing, suppporting and sometimes just being there.
No Poster Girl
Pajama Daze
The Chronic Complex Diseases Study
Community
119 likes
About
A research study for people who have Systemic Lupus, Chronic Fatigue Syndrome and Chronic Lyme Disease and healthy volunteers in Vancouver
Description
Are you interested in participating in a research study for patients with Systemic Lupus, Chronic Fatigue Syndrome and Chronic Lyme Disease?
There are several long-lasting diseases leading to disability. These include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Chronic Lyme Disease (CLD). You are being invited to participate in the CCD study that will further investigate these illnesses and their causes.
The study will be comparing participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Chronic Lyme Disease (CLD) to participants who are disease free or have been diagnosed with Systemic Lupus (SLE).
We are looking for healthy participants (ESPECIALLY WOMEN 55-80) as well as participants who fit the following criteria:
• Have been diagnosed with Systemic Lupus (SLE), Chronic Fatigue Syndrome (ME/CFS) or Lyme Disease
• Age 19 or older
• Understand English
• Do not have another medical condition that fully explains main symptoms
Your participation is voluntary. If you are eligible and agree to take part it will involve up to 3 visits to Vancouver General Hospital. These include a screening visit with blood work, one clinic visit involving a physical exam and blood work and potentially one more clinic visit. You will also be asked to complete several short questionnaires at home.
There will be some compensation for participating in this study and you can receive reimbursement for parking or bus fare from within the lower mainland.
If you are interested, please contact the clinical research coordinator at sparker@cheos.ubc.ca or 604-682-2344 X 62492
Your Life Matters – Christians with Chronic Fatigue Syndrome (CFS/ME)
Organization
135 likes
About
Outreach Support for Christians with CFS/ME
Mission
YLM seeks to provide proactive outreach to those who are unable to attend church or to receive Christian contact.
The CARE PROGRAM is designed to provide monthly outbound contact, via email/phone/skype to those who are isolated and needing 1-1 fellowship. It is also an opportunity for those who are semi-well enough to reach out to others by volunteering as a Care Friend.
For more information contact Fiona: yourlifematters.fionalow@gmail.com
Fiona’s priority is to protect the vulnerability of those who have been hurt by people who do not fully understand CFS. Those appointed as Care Friends for the Care Program will have had first hand experience with the illness and must follow specific guidelines.
Description
Your Life Matters ministers to Christians with Chronic Fatigue Syndrome (CFS/ME). With Holy Spirit inspired music, Fiona Low shares personal experiences and biblical insights for addressing common issues.
A 6-month Pilot CARE PROGRAM ran from July-December 2011. It was a fruitful venture and plans are under way to run the Care Program regularly.
A small version was run in June 2012. The next Car… See More
General Information
Many sites claim to have a “cure” for CFS/ME/FM. YLM focuses on the JOURNEY rather than the DESTINATION. You CAN make the best of your current situation.
This ministry runs in conjunction with the Facebook Group: “Christians with CFS/ME”. To interact with others in a PRIVATE forum please join this group.
http://www.facebook.com/groups/6889421671/
If you are not a Christian, there is a parallel group open to people of all faiths: “CFS/ME/FM/Lyme support and care forum”. This is also a PRIVATE group. You can join via this link:
http://www.facebook.com/groups/134436086677832/
This Your Life Matters Fan Page is PUBLIC and for Ministry specific communication only. – A space for posting Video Outreaches and sharing feedback.
Please use other groups for posting general CFS/ME material.
Thank you.
Support Groups & Non-Profits
Bent But Not Broken
Website: http://bentbutnotbroken.org/
About
To provide patients & their caretakers living with CFIDS/CFS/ME an emotional, educational & financial resource online. We will provide direct financial support through private donations to patients in need of assistance with their medical bills and to caretakers in need of assistance with everyday expenses put off due to medical payments.
Bent But Not Broken was founded by Lindsey Beres (me), an actual CFIDS sufferer for 13+ years. I have kept my battle with the chronic illness private until I finally needed help beyond my means. I reached out online and found sooo much varying information and no organizations that will help financially. Being that I have started a digital agency that develops websites, manages social media campaigns and other digital marketing initiatives for companies, I decided to put these resources to good use and create a site for “in-betweeners” like myself that aren’t qualified for disability (and frankly never want to take it) but still need help.
Bent But Not Broken is a website that provides emotional & educational resources to patients & their caretakers living with CFIDS/CFS/ME. We will soon have an application process on our site to allow patients to apply for financial assistance with their medical care, and caretakers for their expenses.
CFIDS & Fibromyalgia Self-Help Program
Non-Profit Organization
3,413 likes
Website: http://www.cfidsselfhelp.org
About
The CFIDS and Fibromyalgia Self-Help Program is a nonprofit organization whose mission is to improve the quality of life for people touched by Chronic Fatigue Syndrome (aka CFIDS) and fibromyalgia.
Mission
Our mission is to improve the quality of life for people touched by Chronic Fatigue Syndrome and fibromyalgia. We pursue this aim through offering a sequence of three self-help classes and by providing information about the two conditions.
Company Overview
The CFIDS and Fibromyalgia Self-Help Program is a 501(c) (3) nonprofit organization offering low-cost online self-help courses and other resources for people affected by Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM). Founded in 1998, we have conducted hundreds of self-help groups teaching people how to manage their illness. We also provide numerous articles on self-management, plus forms, worksheets and online books.
M.E. Positive East Midlands including Leicester
Non-Profit Organization
249 likes
About
M.E. (Myalgic Encephalomyelitis, CFS, Chronic Fatigue Syndrome.
Mission
To provide support and advice to people suffering from ME/CFS. To achieve the above through Newsletters, Internet Links, Information, Help Lines, Social Outings.
Company Overview
The Group is M. E Positive East Midlands.
The objective and aim of the Group is to provide support, help and advice to M. E. sufferers and their carers.
Description
A support group for M.E. (Myalgic Encephalomyelitis). We are a ME/CFS support group covering the East Midlands and Leicestershire. We have members accross the whole county e.g. Leicester, Loughborough and Ashby.
General Information
M.E. (Myalgic Encephalomyelitis) often also called Chronic Fatigue Syndrome is a debilitating disease that can follow a viral infection, immunisation, surgery or similar events
May 12th – International ME/CFS & FM Awareness Day
Non-Profit Organization
14,727 likes
About
May 12th is International Awareness day for MCS, ME/CFS and FM. Share your plans for May 12th and get involved to help spread awareness on May 12th and throughout the year. Follow along at www.twitter.com/may12th
Mission
To promote May 12th as International Awareness day and encourage people to join events or create their own and to share awareness ideas for May 12th and throughout the year.
General Information
Here is a list of acronyms used on the site and what they mean:
ME/CFS – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
FM – Fibromyalgia
MCS – Multiple Chemical Sensitivity
GWS – Gulf War Syndrome
GWI – Gulf War Illness
ME Society of Edmonton
Non-profit
71 likes
About
The M.E. (Myalgic Encephalomyelitis) Society of Edmonton is a not for profit that advocates, supports and educates those affected by ME/CFS
Company Overview
The M.E. (Myalgic Encephalomyelitis) Society of Edmonton is a charitable organization founded in 1991 with a vision to promote an understanding of the diseases Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Operated by a volunteer Board, the Society educates medical and legal professionals, advocates for better treatment and services for those with ME and/or CFS and supports patients, families and caregivers.
NIDA/Chronic Fatigue Syndrome Support (CFS/ME)
Non-profit Organization
310 likes
About
When someone suffers with Chronic Fatigue Syndrome, the whole family suffers. Join us as we are dedicated to improving the quality of life of people suffering from Chronic Fatigue Syndrome (ME/CFS) and generate funding for ME/CFS research.
Mission
Neuro-Immune Disease Alliance, Inc. (NIDA) is a non-profit, 501 (c) (3), a California Public Benefit Corporation, dedicated to improving the quality of life of people suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by increasing physician knowledge and awareness, accelerating treatment research and providing patient and family support. By educating physicians about ME/CFS, providing a portal for research collaboration and helping people learn to manage their illness, NIDA hopes to alleviate patient suffering and work towards finding a cure.
Company Overview
Don and Linda Tannenbaum founded NIDA in 2011, five years after their daughter Jenny suddenly fell ill when she was only sixteen. Jenny and her parents spent three months searching for a diagnosis – visiting over 20 doctors of various specialties, giving blood for over 150 lab tests, and having fifteen different scans. Even though the majority of the tests came back negative and one doctor even to… See More
Description
Chronic fatigue syndrome (CFS) or Myalgic Encephalomeylitis (ME) is a debilitating and complex disorder characterized by intense fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. The cause or causes of CFS have not bee… See More
General Information
Currently, NIDA is raising money for collaborative research studies, to determine diagnostic markers and potential treatments. The findings will then be openly shared with the scientific and medical communities to help develop translational science that ultimately improves the quality of life for people suffering from CFS/ME. Positive results will be taken to laboratories, biotech, and pharmaceuti… See More
P.A.N.D.O.R.A., Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
Non-profit Organization
3,547 likes
About
Mission is to advocate and restore quality of life for individuals with NeuroEndocrineImmune diseases (NEIDs) CFS, ME,FM,LD, MCS-EI, & Gulf War Illness via educational patient-medical programs, community support, and grass roots initiatives.
Mission
P.A.N.D.O.R.A. Inc. is founded on the following principles:
To be one strong voice for many© . . .
* Creating and raising awareness
* Advocating for quality of life Issues
* Providing support and educational resources
* Establishing partnerships in our worldwide community
* Supporting scientific research
* Encouraging creation of empowerment groups
* Organizing educational conferences
These goals will assist patients with Neuroendocrineimmune diseases and their families in leading productive and fulfilling lives.
We were built on Hope • Strong on Advocacy • Finding a Cure through Research
Company Overview
PANDORA’s vision is to interrupt the cycle of suffering experienced by an estimated 20 million Americans stricken with NeuroEndocrineImmune diseases and bring back quality of life. You can be part of these efforts by either volunteering or with a generous donation. Go to www.p-a-n-d-o-r-a.org and support our community educational and grass roots programs. Built on Hope • Strong on Advocacy • Finding a Cure through Research
General Information
Neuroendocrineimmune diseases (NEIDs) affect men and women of all ages. Government officials estimate that there are 20 million Americans (CDC,NIH,NIAMS,NIAID, NIEHS) stricken with NEIDs. These illnesses can be particularly harsh in children, teenagers and young adults as our school systems are not prepared nor have the training and knowledge to be able to provide what is required by federal & state law in providing special accommodations.
Often parents are mired in allegations of medical neglect, dependency, unable to provide for their children and in the most draconian outcomes – being charged with Factitious Disorder by Proxy (FDP) formerly known as Munchausen Syndrome by Proxy. Even the elderly is not immune to NEIDs.
The social services available to the elderly often overlook the physical challenges of having NEIDs. Adult men and women suffering with NEIDs are being discriminated in the work force, encountering legal disability process that reputedly questions the existence of these illnesses. They daily encounter a bias in the disability system across this country, that is hurtful, counter productive, and one that even the most educated physicians on the subject of these illnesses have not been able to break.
The uncertainty that these illnesses bring to people’s lives are shocking, brutal, disabling and devastating. As these illnesses wax and wane, life altering adjustments have to be made often. The isolation of being confined to a bed or to a home because one is too ill and physically weakened, damages the emotional and will break the spirit. These individuals are quite fragile and yet, the lack of compassion displayed is a hindrance to these individuals potential recovery and well-being.
The Vermont CFIDS Association
Non-profit Organization
324 likes
About
A 501(c)3 Private Foundation. dba: ImmuneDysfunction.org
Mission
Mission Statement:
The goals of the Vermont CFIDS Association are to: (1) raise public awareness of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), (2) support and advocate for Vermonters who suffer the debilitating symptoms of this and related disorders, and (3) facilitate the education of patients, families, healthcare providers and primary care physicians in order to validate and establish a recognized and acceptable protocol for the diagnosis and treatment of CFIDS.
Company Overview
The Vermont CFIDS Association, Inc.
dba: ImmuneDysfunction.org
P.O.Box 3162
Burlington, VT 05408-3162
1-800-296-1445
Description
To facilitate the education of patients, families, healthcare providers and physicians in order to establish a recognized and acceptable protocol for the diagnosis and treatment of immune system dysfunctions.
New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA)
Community
575 likes
The New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) is a 501 (c)(3) non-profit organization whose purpose is to support patients and their families with reliable information and numerous activities. (See Mission Statement)
Mission
The New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) is a registered 501 (c)(3) nonprofit, tax-exempt organization whose purposes include supporting patients and their families, disseminating reliable information about ME/CFS, and
promoting research into the causes, treatments and cure of the disease. The NJCFSA sponsors a wide range of activities including:
-Support Groups
-Journal
-Professional Referrals
-Medical Conferences
-Lending Library
-Helpline
-Research and Scholarship Funds
-Advocacy for CFS Patients.
Description
New Jersey Chronic Fatigue Syndrome Association, Inc.
PO Box 477
Florham Park, NJ 07932
888.835-3677
Whangarei Myalgic Encephalopathy Information Service Support MEISS -CFS, ME
Community
14 likes
About
Whangarei Myalgic Encephalopathy Information Service Support (MEISS) for people with Chronic Fatigue Syndrome / Myalgic Encephalopathy
Description
This is a support group only to share information. We can not diagnose your or advise you on your illness.
We are a very small group, but willing to help any other sufferers. We send
out a regular monthly newsletter by email.
Regular talks by Dr. Vallings of Auckland, Medical Representative for National Association of ME are held here in Whangarei. Like us to keep in the loop.
Convenor: Barbara L. Hosken email – jblh@clear.net.nz
Disclaimer:
The information used in this Newsletter for the MEISS members is not intended to replace qualified medical advice. MEISS Whangarei assumes no responsibility for treatment undertaken by its readers. Opinions expressed are not necessarily those of the Committee, Editor or any or all of its Membership.
ME Awareness Efforts by Jenny & Gordon
Community
40 likes
About
ME is a debilitating neurological condition. There is no cure.
Description
Jenny has had ME for 36 years and is currently severely limited by the condition. Over the years there have been times when she has only been partially affected but the last 2 years have been overtaken by it. Her husband Gordon is her main carer. As International ME Awareness Day is May 12th, Jenny and Gordon have chosen the month of May to promote awareness of this debilitating condition and to raise funds for vitally needed bio-medical research.
ME (myalgic encephalomyelitis) is also referred to as CFS (Chronic Fatigue Syndrome), post-viral fatigue syndrome (PVFS) and chronic fatigue immune dysfunction syndrome (CFIDS).http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
As I said, please let me know any that I’ve missed. I’m sure I’ve missed a lot, but if you just comment below, DM me on Twitter or email me at Louise@GetUpAndGoGuru.com I’ll remedy the situation.
I hope you find this list valuable
Keep Smiling
Louise 🙂
Julie says
Can you add me to your FB and Twitter lists:
FB: https://www.facebook.com/CountingMySpoons
Twitter: https://twitter.com/drunkitty2000
Louise Bibby says
Certainly Julie. Sorry I missed you! I will rectify that ASAP. Give me a day or 2, but it’ll get up there 🙂
Cheers
Louise
MARISSA McBETTY says
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