When Chronic Fatigue Syndrome Harms Vision

By Beth W. Orenstein.

Many people diagnosed with chronic fatigue syndrome (CFS) also experience problems with their vision. Doctors believe that these vision-related chronic fatigue symptoms stem from brain dysfunction more than eye dysfunction. The signals that the brain sends to the eyes to let you know where you are and what you’re seeing may not be functioning properly when you have chronic fatigue syndrome.

Vision Problems and Chronic Fatigue Syndrome: It’s All a Blur

Most often, patients report having periods where everything appears blurry or seems foggy. “This will happen most commonly when they stand up and get lightheaded,” says Peter Rowe, MD, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore.

Other vision problems that chronic fatigue syndrome patients report include:

• Difficulty or slowness in focusing on objects, usually those that are close up
• Not being able to see objects in side or peripheral vision — some say they feel as though they have tunnel vision
• Feeling dizzy and not being able to tolerate looking at moving objects
• Seeing floaters and flashes of light
• Being intolerant to light — “They find it uncomfortable to be in brightly lit rooms and outdoors in the bright sunshine,” Dr. Rowe says.
• Feeling as though eyes are dry or that they burn, itch, or feel gritty
  
  

The Effects of Vision Problems on Activities

Chronic fatigue syndrome patients usually find that their vision problems worsen toward the evening as they get more tired, Rowe says. As a result, people with chronic fatigue syndrome often find they have difficulty concentrating, particularly when reading.

Vision problems and the related discomfort also can make it hard for CFS patients to finish everyday tasks. You may have difficulty judging distances, which makes driving a problem. Also, headaches and dizziness may make it difficult to stand to cook or clean.

Getting the Right Eye Care When You Have Chronic Fatigue

Chronic fatigue syndrome patients will often visit an optometrist or ophthalmologist when they experience vision problems. “But usually the eye exam of someone with chronic fatigue syndrome is normal,” Rowe says. Prescription lenses may not help because vision changes rapidly. If you do wear glasses, tints may reduce sensitivity to light.

Because blurred or foggy vision is the most common problem, the solution is to improve the blood flow to the brain, Rowe says. “Visual blurring tends to be a temporary symptom and more related to lightheadedness and brain blood flow.” You may need to see a cardiologist or a neurologist to treat dizziness or lightheadedness.

Certainly, if you have chronic fatigue syndrome and find that you can’t tolerate bright lighting, you should wear good sunglasses when you’re outdoors, Rowe says.

Medications Can Help Vision Problems

Dry or irritated eyes can be treated with drops that lubricate the eyes; they may provide temporary relief. Warm compresses may also help, as will drinking fluids. Some chronic fatigue syndrome patients experience the opposite problem: watery eyes often caused by allergies; in this case, you may find it helpful to take over-the-counter antihistamines.

If you experience floaters, see an eye care professional immediately to be sure the cause is not a retinal tear. In patients with chronic fatigue syndrome, the floaters you see are generally harmless and do not require treatment. Over-the-counter pain medications or prescription drugs may help with headaches brought on by fatigue or dizziness.

Patients are likely to find that their chronic fatigue symptoms, including vision problems, worsen the more fatigued they are. You should talk to your doctor about the best way to treat the CFS symptoms that you find the most disruptive and disabling.

Originally posted on Everydayhealth.com, March 4, 2010

Thank you!

Over the weekend, there were 1727 free downloads of Chronic Fatigue Syndrome: A Treatment Guide, 2^nd Edition!

 I would like to thank everyone who made this possible – the people who “liked” the book's Facebook page and website, those who shared the posts, those who talked about it on boards, those who posted the announcement on their blogs and on newsletters, those who reviewed the book on Amazon, and, of course, all those who downloaded the book. 

This was a wonderful community effort, and I am deeply grateful to everyone who helped get this book to the people who need it the most.

Yours in health,

Erica

FREE CFS/ME TREATMENT BOOK!

On January 19th and January 20^th, 2013, Amazon.com will be giving away free copies of Chronic Fatigue Syndrome: A Treatment Guide, 2^nd Edition. Dr. Charles Lapp calls this “the book every patient should have.” The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews.

A Kindle is not needed to read this book! Amazon provides free apps that allow eBooks to be read on computers, iPads, phones and other devices. Go here: http://www.amazon.com/gp/feature.html/ref=sv_kstore_1?ie=UTF8&docId=1000493771F8&docId=1000493771

For more information go to: http://www.cfstreatmentguide.com

Free Medications for People on Reduced Incomes

FACTS ABOUT PPA (from the website: http://www.pparx.org/en/about_us)

• The PPA helps uninsured and financially struggling patients who lack prescription coverage get access to prescription assistance programs that offer medicines for free or nearly free.
• The PPA is free, confidential, and it is easy for patients to find programs for which they may eligible to apply.
• Offers a single point of access to information on 475 public and private patient assistance programs, including nearly 200 programs offered by pharmaceutical companies.
• PPA member programs offer more than 2,500 brand-name medicines, including a wide range of generics.
• Helps patients contact government programs such as Medicaid and Medicare.
• More than 40 of the assistance programs focus on the medication and health care needs of children.
• The PPA provides information on nearly 10,000 free health care clinics and has connected more than a quarter of a million patients with clinics and health care providers in their communities.
• Assists patients with chronic disease in learning about the types of new medicines in development that may help them.

Helping Millions of Patients

• Since its launch in April 2005, the Partnership for Prescription Assistance (PPA) has helped connect nearly 7 million people to patient assistance programs that may meet their needs.
• The patients helped through the PPA join the millions of other patients who have contacted individual pharmaceutical company programs directly over the years.

Who Is The PPA?

• The PPA is sponsored by America’s pharmaceutical research companies.
• These pharmaceutical research companies are working with doctors, pharmacists, other health care providers, patient advocacy organizations and community groups to educate patients about the PPA
• More than 1,300 leading national, state and local organizations have joined forces with the PPA.
• The groups behind the PPA include the largest and most influential in health care. They include the American Academy of Family Physicians, American Cancer Society, American College of Emergency Physicians, Easter Seals, National Association of Chain Drug Stores, United Way and the Urban League.

Web Site

• A user-friendly Web site (www.pparx.org) enables patients to find programs for which they may be eligible to apply.
• The PPA has dedicated a Web site to make it easier for patients to learn about help available for children, (kids.pparx.org).
• Patients can download and print out patient assistance program applications immediately.

Toll-free Phone Number

• Patients can call 1-888-477-2669 (toll free) to talk with a trained specialist who will guide them through the application process.
• The call centers accepts calls in English, Spanish and approximately 150 other languages.

Rituximab: A Wonder Drug for Severe ME/CFS?

This short video demonstrates the action of rituximab, a drug which shows promise for those with severe CFS/ME. Rituximab (trade names: Rituxan, MabThera) was first approved by the FDA in 1997 for the treatment of non-Hodgkin's lymphoma. It is believed that rituximab destroys tumors by attaching to the CD20 receptor on B cells, causing the tumor cells to disintegrate. In some non-Hodgkin's B-cell lymphomas, rituximab prevents the production of more tumor cells.

Rituximab is also used in the treatment of autoimmune disorders, such as rheumatoid arthritis and Wegener's granulomatosis. In these cases, rituximab works by temporarily depleting the total number of B cells, which are important in promoting inflammation. Rich Van Konynenburg proposed that this is why rituximab works for CFS/ME patients – by reducing B cells, rituximab reduces inflammation.

The effect of rituximab on CFS/ME patients was discovered by accident. Two Norwegian doctors, Øystein Fluge and Olav Mella of Haukeland University Hospital, noticed that after treating a CFS/ME patient for Hodgkin's lymphoma with rituximab, she recovered from CFS/ME. This led the doctors to initiate a small study of rituximab on CFS/ME patients.

Three CFS/ME patients were given rituximab in an open-label trial (that is, the patients knew they were receiving the drug). All three patients experienced significant improvement; two of them responded within six weeks and the third had a delayed response, occurring six months after treatment. The positive effects lasted for between 16 and 44 weeks. After relapse, the patients were administered another dose of rituximab, with the same positive results. The investigators hypothesized that B cells of the immune system might play a significant role in CFS, at least for a subset of patients, and that “CFS may be amenable to therapeutic interventions aimed at modifying B-cell number and function.”

The positive results of this, as well as a second open-label trial, led Drs. Fluge and Mella to conduct a larger study with a more rigorous design to test the effects of the drug. In 2009 they initiated a double-blind, placebo-controlled phase trial with 30 CFS/ME patients. As in the earlier open-label studies, the responses to rituximab were significant. Sustained overall improvements were noted in 67% of the patients (as opposed to 13% of the control group). Four of the rituximab patients showed improvement past the study period. The authors concluded that the delayed responses starting from 2–7 months after rituximab treatment, in spite of rapid B-cell depletion, “suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses.”

Dr. David Bell, a now retired CFS/ME specialist, says “I've not seen results like this in any medical study in the 25 years that I have been in this field."

Antivirals for Cognitive Dysfunction: Interview with Dr. Jose Montoya

This is a short video of Dr. Jose Montoya of the Stanford Hospital Infectious Disease Clinic, speaking about CFS/ME. Dr. Montoya has completed clinical trials of valganciclovir (Valcyte), an antiviral, on patients with Viral Induced CNS Dysfunction, a subset of patients with Chronic Fatigue Syndrome. The data Dr. Montoya presented at the 2008 International Conference on HHV-6&7 indicated that after taking Valcyte, patients experienced significant cognitive improvement. He is currently collaborating with Ian Lipkin, Professor of Neurology and Pathology at the College of Physicians and Surgeons at Columbia University. Professor Lipkin is also Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases.

In this interview, Dr. Montoya addresses the onset and treatment of CFS/ME. He states that perhaps 11% of those who have acute infections of any kind may develop CFS/ME. Dr. Montoya believes that CFS/ME is an immune response to an infection. While the initiating infection may vary from patient to patient, he believes that CFS/ME is most likely caused by some common pathway in the immune system, which he characterizes as a “two-edged sword.” On the one hand, the immune system combats the infection, but on the other it may perpetuate an ongoing cycle of symptoms.

Dr. Montoya's primary clinical approach is through the use of antivirals. He has personally seen patients who have been ill for decades make recoveries after antiviral treatment. His main interest is in “brain fog,” the set of cognitive disturbances that inhibits a patient's ability to focus or to perform mental tasks.

Dr. Montoya's goal is to have a CFS/ME center where patients can recover, away from the stresses of life. “Our dream is to eradicate CFS from the surface of the earth,” he states. He believes that dream is within our reach.

More information:

Stanford Chronic Fatigue Initiative

http://chronicfatigue.stanford.edu/

Brain Injury and Gut Dysbiosis in CFS/ME: Interview with Dr. Byron Hyde and Professor Kenny De Meirleir

Dr. Byron Hyde and Professor Kenny De Meirleir are two of the best-known names in the field of researching CFS/ME. Dr. Hyde is the director of the Nightingale Research Foundation located in Ottawa, Canada. His book, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome remains the most comprehensive collection of scientific and clinical studies on CFS/ME ever published.

Professor Kenny De Meirleir is a professor of physiology and internal medicine at the Vrije Universiteit Brussel in Belgium.  Professor De Meirleir has co-authored more than 80 studies on CFS/ME. He was also one of the authors of the International Consensus Criteria, the most accurate case definition for evaluating CFS/ME.  Professor De Meirleir's work is based on the premise that the gut wall in CFS/ME is abnormal, and that bacterial pathogens in the gut must be treated in order for antivirals or other treatments to be effective.

In this interview, conducted in 2008 by Öppna Kanalen Göteborgs Webb-TV (a Swedish open-channel station), Dr. Hyde spoke about CNS involvement. His perspective is that CFS/ME is a form of brain injury. He considers it to be a diffuse injury that results in an inability to handle physical or mental stress. Once the brain is injured, the illness affects all body systems. He does not believe there is a general treatment for CFS/ME. However, he believes there is a great deal of collateral damage that must be treated on an individual basis.

Professor De Meirleir spoke about his approach to treating CFS/ME. He performs normal tests to exclude major diseases, then does a series of tests for viruses, immune system and digestive system function. He believes that there is a predisposition to the disease when there is food intolerance or maldigestion. He considers maldigestion to be a major stress on the immune system, 80% of which is in the gut. When another infection occurs, “your bucket flows over and you go into a state where the immune system never comes to rest.”

In CFS/ME, Professor De Meirleir treats food intolerance first (with diet). Then he treats gut dysbiosis (abnormal gut flora) and helps repair the gut barrier (leaky gut). He says it takes a year to recover gut function. Professor De MeirLeir also spoke at length about subgroups.

While this interview was somewhat shortened, there is a wealth of information here about the possible causes, mechanisms, and treatments for CFS/ME. Highly recommended. 

Original interview posted on:

Öppna Kanalen Göteborgs Webb-TV

http://okgplay.no-ip.org/

More information:

Nightingale Research Foundation

http://www.nightingale.ca/

Contact information for Prof. De Meirleir

http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/

TheClinical and Scientific Basis of Myalgic Encephalomyelitis/ChronicFatigue Syndrome. Byron A. Hyde, Jay A. Goldstein, P.H. Levine, eds. Nightingale Research Foundation (July 1992)