Facebook offers free online networking, where we can share stories, treatment ideas, photos and our dreams. We focus on what connects us, rather than what divides us in our health. The symptoms of these Invisible Diseases are identical. Here, we can come together as one group, one people.
We do not discriminate, whether you are young, old, gay, straight, Buddhist, Christian or any other combination in the world. We may have different paths, but we have one goal: healthy lives.
There are many wonderful sources for exploring treatments, news articles and extended communities within CFS / ME, Fibro and Lyme environments. See the links below. *
* National Fibromyalgia Foundation
* Visiting Nurses Association of America
* Pro Health Boards and Chat Rooms
Contact the CDC (Center For Disease Control)
Centers for Disease Control and Prevention
1600 Clifton Rd, Atlanta, GA 30333, U.S.A.
800-CDC-INFO (800-232-4636)
TTY: (888) 232-6348, 24 Hours/Every Day -
Contact the World Health Organization
World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland
Telephone: + 41 22 791 21 11
Facsimile (fax): + 41 22 791 31 11
© All Material is copyrighted and owned by www.InvisibleDiseases.com
We proudly support the Kakkis EveryLife Foundation, and all of their efforts to help all people with rare diseases. www.Kakkis.org
Part of advocating for a community means lifting and empowering others within that community. Here are some Visibility-Cards that you can download for free! These free cards were created to encourage and inspire people, all the while raising visibility for those with Invisible Diseases. Please, download and start sending these 4x6 cards, write people your story. Click the images below to download.
I Won’t take this Fatigue Lying Down!
4x6 Card, free to download
Love is invisible. Hope is invisible. Friendship is invisible. But they are all real! ...So are invisible diseases.
4x6 Card, free to download
We are Visible Heroes
4x6 Card, free to download
Free ID Card... What’s your ID?
This ID card not only reminds you that you are a part of a strong community that cares, but also offers added comfort in case of an emergency. You can write your ailments on the front and back of this card to help others know your health issues. Card sizes are approximately 2in. by 3in.
Free 4x6 Visibility-Cards
Dear CDC,
I am writing to you with possibly the biggest health oversight of our time; millions of people are suffering and being forced into isolation and ridicule by those whom they entrust their health to. We need more emphasis on research and advocacy for specific Neuroimmune diseases referred to as Invisible Diseases; Chronic Fatigue Syndrome, Fibromyalgia and Chronic Lyme Disease. These diseases have been invisible for too long! And we need your help! Millions of people are suffering with very serious physical disabilities directly due to the above illnesses, which often develop into full POTS (Postural Orthostatic Tachycardia Syndrome) and other serious dysautonomias. We are in a state of medical emergency and we NEED YOUR HELP!
Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis), Fibromyalgia and Chronic Lyme Disease all have the same myriad of symptoms, according to your definitions. Yet there are no direct medical answers as to why or how. Many people who have been told that they have Chronic Fatigue Syndrome (CFS) actually have Lyme Disease, and many who have been (falsely) diagnosed with Lyme Disease in fact have Chronic Fatigue Syndrome. Within both Chronic Fatigue Syndrome and Lyme, there are countless people who fit the diagnoses of Fibromyalgia. Countless Fibromyalgia sufferers eventually are diagnosed with Chronic Fatigue Syndrome, or even Lyme Disease as well. These are your listed criteria for a diagnoses of CFS:
1.Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and
2.Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.
Your definition for Fibromyalgia:
Fibromyalgia is a disorder of unknown etiology characterized by widespread pain, abnormal pain processing, sleep disturbance, fatigue and often psychological distress. People with fibromyalgia may also have other symptoms; such as,
◦Morning stiffness
◦Tingling or numbness in hands and feet
◦Headaches, including migraines
◦Irritable bowel syndrome
◦Problems with thinking and memory (sometimes called "fibro fog")
◦Painful menstrual periods and other pain syndromes
Your definition for Lyme Disease:
•For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.
•Late manifestations. Late manifestations include any of the following when an alternate explanation is not found:
1.Musculoskeletal system. Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.
2.Nervous system. Any of the following, alone or in combination: lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or, rarely, encephalomyelitis. Encephalomyelitis must be confirmed by demonstration of antibody production against B. burgdorferi in the CSF, evidenced by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mildly stiff neck alone are not criteria for neurologic involvement.
3.Cardiovascular system. Acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.
Lyme Disease is often reported to have false-negative blood tests, as well as false-positives. As you recommend, two separate tests should be taken to help determine a final diagnoses of Lyme Disease, due to the lack of accuracy. Your list of symptoms for all of these diseases are incredibly similar. What is also very similar is the tremendous number of people suffering, with very little research or advocacy from the CDC.
Please help us! As you know, every year the number of people diagnosed with one of these invisible diseases grows larger and larger. Yet still, we are without any significant treatment. People are suffering and we passionately urge you to help us make these diseases invisible NO MORE. We need more research and advocacy. We need a new name for chronic fatigue syndrome. We need better testing and treatment, that is not so toxic or harmful. We need your help to let the public know that people with these illnesses deserve respect and kindness; and not the ridicule and shame that is pressed upon them by undereducated doctors and uninformed community members. Please, we need your help. The true shame does not lie on those suffering with these invisible diseases; but on those who have the ability to help, and do nothing about it.
With the new XMRV retrovirus findings from the Whittemore-Peterson Institute, we need more public awareness and research funding now more than ever. This is the time to push full-throttle and save people’s lives; not just by keeping them alive, but by giving them their lives BACK.
Sincerely,
People who care
The More We Bring Our Voices Together, The More Likely We Are To Be Heard!
These Invisible Diseases are are causing a silent pandemic and we are in a mass medical emergency. Tell your story, listen to others. Be brave and pull together. Together, we can do this!
Below, we are providing you with free tools to help raise awareness and educate people about Invisible Disease
Do not be afraid to ask your friends and family to send letters or make phone calls to government officials and hospitals, letting them know that we need help! Now is the time to be brave and strong. We will make it to the top of this mountain together! Please do everything that you possibly can to be heard!
Download this CDC letter for free, right here:
Letter For Help from www.InvisibleDiseases.com.doc
Change it as you wish, and send it to your government and medical professionals. Most governments have very easily accessible emails on local websites. Please keep spreading visibility, and keep spreading hope!
Invisible Diseases
Shedding Light on an Invisible Community
Raising Visibility is the way that we are going to get the help that we need! Let’s work backwards from our goal... We need a cure. We need extensive research to find the cure. But in order to get research teams together, we need the funding. The only way to get enough funding is to let the people know how and why we need it!
Raise Awareness
HELP RAISE VISIBILITY
ID CARDS
Click the image to download.
VISIBILITY POSTCARDS
IMPORTANT LINKS
ONLINE SUPPORT FROM OTHERS LIKE YOU
OUR LETTER TO THE CDC
CONTACT THE OFFICIALS
Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com. Chronic Fatigue Syndrome / M.E.; myalgic encephalomyelitis / ME/CFS, Lyme Disease, Fibromyalgia and Dysautonomias such a POTS (Postural Orthostatic Tachycardia Syndrome) are among the neuro-immune diseases that are advocated for at Invisible Diseases .com.