Stanford Chronic Fatigue Clinic Phone Number

Navigating The Disability Process

One of the most horrific eects of ME/CFS and Long Covid is the inability to work, and the often crippling loss of income. If you are unable to work, or if you feel yourself struggling to continue to work, do not hesitate to file for disability insurance. The time from applying for disability to the time of approval can take from six to twelve months, or longer.

There are multiple sources for disability insurance in the United States. Some large corporations provide disability insurance for their employees, private disability insurance can be purchased from insurance agents prior to the onset of illness. A few state governments provide disability insurance payments for their government employees, and the federal government provides two types of disability insurance.

For more information, download our disability guide.

Me/cfs Chronic Fatigue Of Unclear Etiology And Autoimmune Disease Are Common In First

The pervasiveness of ME/CFS, chronic fatigue of unclear etiology, and autoimmune disease in the FDRs of subjects may yield clues to the genetic basis and pathophysiology of the disease. Thirteen percent of our subjects imparted that they had at least one FDR affected by ME/CFS. Because ME/CFS is known to be widely underdiagnosed , we also asked whether any FDRs sustained chronic fatigue without a specific diagnosis. When this category was added, 21% of our subjects replied affirmatively and the percentage of subjects who did or might have a relative afflicted by ME/CFS rose to 27%. Our results are consistent with Pheby , who found that 12.1% of his subjects had at least one FDR affected, and the 5.318.3% of subjects noted in multiple studies to have at least one other blood-related family member, regardless of degree, affected. In two studies asking about both ME/CFS and chronic fatigue of unclear etiology in family members, 25% and 46% replied affirmatively.

About one-third of our subjects suffered from an autoimmune condition and a similar percentage had an FDR with an autoimmune condition. These figures are congruent with prior research: autoimmune conditions were noted in 1527% of ME/CFS patients and in 1847% of their family members. Autoimmune thyroid disease was the most common co-morbid diagnosis while a variety of conditions, including rheumatoid arthritis, psoriasis, lupus, and Sjogren’s syndrome, were observed among family members.

Stakeholder Engagement And Communication Calls

May 13, 2022, 3:00 PM ET

CDC ME/CFS Stakeholder Engagement and Communication CallFeaturing a presentation titled, Myalgic Encephalomyelitits/Chronic Fatigue Syndrome Management Options, by Dr. Stephen Gluckman, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDCs Chronic Viral Disease Branch, and a question and answer with Dr. Gluckman.

CDC ME/CFS Stakeholder Engagement and Communication CallFeaturing a presentation titled, Is ME/CFS Another Face of Long Covid? by Dr. Hector Bonilla, Clinical Associate Professor of Infectious Diseases at Stanford Universitys School of Medicine and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDCs Chronic Viral Disease Branch, and a question and answer with Dr. Bonilla and CDC.

• Video recording

May 13, 2021, 3:00 PM ET

CDC ME/CFS Stakeholder Engagement and Communication CallFeaturing a presentation on Exercise Testing in the MCAM Study by Dr. Dane Cook, Professor of Exercise Psychology from the University of Wisconsin-Madison School of Education and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDCs Chronic Viral Disease Branch, and a question and answer with Dr. Cook and CDC.

The Biology of ME/CFS: Emerging Models

Anthony L. Komaroff, M.D.Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical SchoolSenior Physician, Brigham and Womens Hospital, Boston, Massachusetts

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Further Exploration Of Other Potential Triggers Is Needed

Twenty percent of our subjects noted that an exposure to a chemical or environmental toxin might have a played an initiating role in their illness. Two independent Australian research groups published similar results: in Clark et al. , 16% endorsed exposure to environmental toxins while in Johnston et al. 6% reported mold 11%,toxic chemicals 6%, poor recycled air and 4%, heavy metals . In contrast, in Friedberg’s US-based study, 44% of subjects perceived toxic exposure to be a source of their illness . It is unclear why Friedberg’s study yielded double the percentages we and the Australians found. None of these researchers commented further on these findings in their articles.

Since this survey was constructed as a broad overview, we did not take a comprehensive history of possible exposures. Additionally, because the published literature in this area is sparse and composed of mostly case studies , it is difficult to know what specific substances to concentrate on. Written-in responses from our subjects may provide leads but were too imprecise and disparate to draw any solid conclusions. Subjects’ answers might also be influenced by, for example, recall bias, misattribution, other patients’ accounts, and media outlets.

Alcohol Intolerance Thermoregulation And Difficulties Standing Still Are Common Symptoms

Our subjects confirmed the high frequency of symptoms often considered important features of ME/CFS by clinicians but not included in the 1994 Fukuda CFS criteria. The prevalence of alcohol intolerance , difficulties managing temperature extremes , and issues with standing are as high or higher than some of the top 12 symptoms in our Table 4. Additionally, they are within the range of prevalence figures found previously : 4580% for alcohol intolerance 5480% for temperature control issues and 8195% for problems with remaining immobile in an upright position . Bansal has suggested that since alcohol intolerance is present in 80% of his ME/CFS patients, its occurrence should increase the likelihood of an ME/CFS diagnosis if there are any doubts otherwise . Based on his finding that 81% of ME/CFS patients demonstrated abnormal tilt table testing results, Lapp proposed that all patients should be questioned about orthostatic intolerance . The symptom most predictive of an abnormal test was not fainting/ near-fainting but inability to stand in place without getting sick.

Table 8. Prevalence of self-reported alcohol intolerance, thermoregulatory issues, and difficulty standing still in this and other studies.

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Why We Believe Our Initiative Is Important:

The study of infection-associated chronic diseases is a relatively new field, and more research is needed. Examples of infection-associated chronic diseases include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome . ME/CFS is a multi-system and complex diseases with potentially devastating physical and cognitive symptoms. This disease can significantly impair the lives of patients and result in substantial reductions in previous levels of occupational, educational, social, or personal activities. A broad spectrum, innovative approach to discovery surrounding these debilitating diseases is paramount and a priority at Stanford.

It is common for physicians in the United States to take a skeptical position towards these patients symptoms, and this skepticism is unfortunately enhanced because most results of conventional laboratory and radiological tests are normal.

CITATIONS:

1 Kogelnik et al. Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 and Epstein-Barr Virus who were experiencing central nervous system dysfunction including long-standing fatigue. J Clin Virol. 2006 Dec 37 Suppl 1: S33-8.

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Cumulative Cost to Jan 31, 2022: $1.3B

% of Population with Long Covid: 7.7%

% of Population with Disabling Long Covid: 2.6%

# of Individuals with Long Covid: 73,000

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Scientist With Son Who Suffers From Chronic Fatigue Syndrome Hopes Research Can Help Covid

Stanford University professor speaks about the troubles with chronic fatigue syndrome that has been identified in COVID-19 patients

Ron Davis, a Stanford University professor recognized for his work in genetics and biochemistry, changed his field of study when his son fell seriously ill with a chronic fatigue syndrome that has been reported in COVID-19 patients.

LOS ANGELES – A Stanford University professor known for his research in genetics and biochemistry was forced to change his focus when his son fell ill with a chronic fatigue syndrome that has been identified in COVID-19 patients and “COVID long haulers.”

The National Institutes of Health identifies“COVID long haulers” as a “large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that theyve recovered from the initial stages of COVID-19 illness.”

The chronic fatigue syndrome Ron Davis son suffers from is a relatively common albeit little understood illness.

Myalgic encephalomyelitis/chronic fatigue syndrome is an illness that has been found in patients who have recovered from the novel coronavirus and other viral infections like SARS.

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The CDC cites a 2015 report from the nations top medical advisory body, the Institute of Medicine, which says that an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.

Stanford Chronic Fatigue Clinic Has Anyone Gone

Founder of Health Rising and Phoenix Rising

Staff member

Chfrazzle said:I am strongly considering making an appointment for my young adult daughter with the Chronic Fatigue Clinic at Stanford. I am not expecting anything miraculous but hoping they might stumble across something not picked up on before, as in another health issue that might be adding to her symptoms. I see a lot of discussion about Dr. Montoya and his research but not much on the clinic itself. Does anyone have any personal knowledge or opinions? Any idea how extensive their testing is? Can your mitochondrial function be tested?

Founder of Health Rising and Phoenix Rising

Staff member

Cort said:I’ve talked to a couple of people who were not impressed. One person flew from Europe to see Montoya did not feel it was worth it.I strongly recommend that you head over to see Dr. Kaufman/Chheda in Moutain View. Kaufman gets great reviews he was one of just two ME/CFS doctors to attend the Dysautonomia International Conference, he’s curious and trying new things and does a boatload of testing. He’s up on MCAS, POTS and autoimmune testing and is working on creating an IV for MCAS patients. Someone who s seeing him just told me he got her IVIG approved on Medicare. Kaufman is also meeting with Ron Davis’s groupPlus he seems to be a really nice guy!

Founder of Health Rising and Phoenix Rising

Staff member

Founder of Health Rising and Phoenix Rising

Staff member

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Events Associated With The Female Reproductive System Affect Me/cfs

Considering that ~75% of people affected are women and that onset often occurs during their reproductive years, i.e., between the ages of 1040 , exceptionally few studies have evaluated the impact of female reproductive events on ME/CFS. During casual conversations or in the clinic, patients will occasionally relate that their ME/CFS began during or shortly after pregnancy. In one study of stressful events surrounding onset, women who were pregnant in the previous year were found to be 31.7 times more likely to become ill with ME/CFS compared to women who had not been pregnant. A small but detectable 8% of our subjects connected their illness onset to pregnancy, within the range of 3.510% identifying this as an initiating event in earlier studies . When the more ambiguous category hormonal events was used instead, this percentage rose slightly to 12% .

Tackling Chronic Fatigue Syndrome

Two years ago, Tom Camenzind 16 was a sophomore at Stanford studying computer science. He had a 4.0 GPA and summer job offers from Facebook and Dropbox. According to him, his medical history was a clean slate.

Then, in January 2014, he contracted a respiratory infection from which he never fully recovered.

In February and March of the same year, Tom had enough energy to complete assignments and projects but often needed to rest in bed for a day or two to have enough energy for the next day. But after contracting a second cold in April 2014, his post-exertional malaise, characterized by extreme levels of fatigue following mental or physical exertion, began to worsen.

Since late August 2015, Tom has been unable to spend more than 30 minutes at a time out of bed. He spends most of the day in his bedroom, where the lights are always off and the blinds are drawn. When hes ready for his three meals, he rings a pager button, whispers to his parents what hed like to have and then eats in a chair beside his bed. His speech is limited to simple words that meet basic needs.

It takes energy to listen, to comprehend and to respond, his mother Dorothy Camenzind said. But he does not even have that mental energy .

Once a voracious reader, Tom Camenzind hasnt been able to read for a whole year.

Stanfords Research Initiatives

Davis claims the Centers foremost goal is to identify molecular biomarkers for ME/CFS.

Previous obstacles in obtaining ME/CFS research funding

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The Ron Davis Situation

Jose Montoya and Ron Davis, the great communicator and the great researcher, working together at one of the top research facilities in the world, seemed like a dream combination. In the end, it turned out to be nothing more than a dream. The two, in fact, were likely in conflict from the beginning.

Until Ron Davis arrived on the scene sometime around 2015, Jose Montoya was it for ME/CFS research at Stanford. Ron Daviss entry to the scene, however, changed the landscape. With his immense reputation, his own lab, and the connections hed developed over decades of research, Davis was able to quickly bring in Nobel Prize winning colleagues and other notable researchers to sit on the OMFs Scientific Advisory Board.

Montoya, on the other hand, had reached deep into the University and established his own connections. Hed recruited hundreds of patients and healthy controls, had tons of samples and was working with Ron Daviss friend, Mark Davis. Hed initiated a huge immune and gene expression study which Davis was surely interested in.

The situation seemed ripe for collaboration, but there appears to have been minimal collaborations between the two, and the evidence suggests that a split may have come relatively early.

I asked Davis why didnt he and Montoya work together on the NIH research centers application. His answer did not redound to Jose Montoyas benefit.

Securing A Personal Support System

It is crucial to have a personal support system of family, friends, or caregivers to help you through this dicult, debilitating disease. It is important that this support system understands what you are going through so they can help in supportive, empathetic ways. However, it can be difficult to find reliable information and avoid misinformation.

If you are a person with ME/CFS or Long Covid seeking a support system, or if you are a caregiver and/or loved one, visit our guide here.

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The Importance Of Rest

As a person with ME/CFS or Long Covid, you need to determine your individual limits for physical and mental activity, and plan your day accordingly. Sounds easy? Its not! But, through trial and error, and careful charting of your symptoms after diering types of activities, you can find your rhythm to avoid crashes. Rest is the main ingredient for reinstating your physical equilibrium.

Activity Management, also called pacing, is critical to navigating life with PEM. Before you start pacing, it can be helpful to identify the activities in your life that lead to PEM. Click here to find worksheets to identify your triggers.

Tropical Medicine And Traveler’s Health Clinic

Visiting a travel clinic decreases the chances of developing serious illnesses when traveling abroad. The Stanford Tropical Medicine and Travelers’ Health Clinic is your complete travel health provider. We offer expert, pre-travel consultative services and provide treatment for illnesses contracted while traveling abroad.

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Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Essentials Of Diagnosis And Management

• Alison C. BestedAffiliations
• Lily ChuCorrespondenceCorrespondence: Address to Lily Chu, MD, MSHS, Independent Consultant, 16 Lorton Ave, Unit 4, Burlingame, CA 94010.
• Nancy G. KlimasAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
• Jose G. MontoyaAffiliationsDr Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
• Irma R. ReyAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL

An Innovative And Integrated Approach

At the Center for Complex Diseases, we believe in the need to understand the interplay of the immune system, and its effect on patient health. Our personalized, multifaceted treatment aims to understand the myriad factors responsible for chronic complex diseases and design treatment plans based on patient history, laboratory data, and differential diagnosis.

All our doctors at CCD are working members of the U.S. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Coalition and part of the Guideline Committee. They have helped write the consensus recommendations published in the Mayo Clinic proceedings –

For more information click on

Meet our Doctors:

Bela Chheda, MD – BIO

David Lyon Kaufman, MD

After earning a BFA from New York University School of the Artsin Filmmaking, an MA from Teachers College, Columbia University in Education,and his MD from New York Medical College, Dr. Kaufman completed his InternalMedicine Residency training at St. Vincents Hospital and Medical Center in NewYork City.

As HIV/AIDS became a treatable chronic infection, the practiceexpanded to include more primary care/general internal medicine patientsranging from 18-105 years old. He also became involved in the diagnosis andtreatment of a variety of chronic, often difficult to diagnose and manageconditions, such as Lyme disease, Fibromyalgia, Chronic Viral diseases, vitaminand nutrient deficiencies.

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