Imagine for a moment that one day you wake up feeling like you have an extreme case of the flu. After a month, it hasn’t gone away and your health seems to be in a downward spiral. Your body becomes weaker and weaker. You wake up every day exhausted after a full night’s sleep. After even small tasks like walking downstairs to eat breakfast, your body becomes even more tired. You develop pain in your muscles and joints and often get too dizzy when sitting or standing up. Suddenly the foods you have eaten your whole life are giving you horrible allergic reactions. Smells, bright light, and sound all trigger migraine headaches. You go in to see your doctor and he says that he can’t pinpoint what is physically wrong with you. You have missed so much work that you lose your job. Your friends and family cannot understand why you are suddenly unable to spend time with them. This unimaginably difficult scenario is the reality for the 2.5 million Americans currently living with ME/CFS.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic illness that affects between 1 and 2.5 million people in the US, and an estimated 17-24 million people worldwide. In comparison, ME/CFS affects nearly twice as many Americans as HIV/AIDS (1.2 Million). (1,3) This figure becomes even more staggering when according to a large-scale Danish study, patients with ME/CFS have the worst quality of life when compared with every other chronic illness including every cancer, heart attack, stroke, ulcers, multiple sclerosis, and diabetes. (Falk et al.) In Dr. Katrina Berne’s book Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide, she recounts a 1995 congressional briefing in which Dr. Mark Loveless testified that “a CFS patient feels every day effectively the same as an AIDS patient feels two months before death.” (Berne)
The main physical symptoms of ME/CFS include post-exertional malaise, unrefreshing sleep and other sleep problems, widespread chronic pain, joint pain, muscle pain, sore throat, difficulty maintaining upright posture, IBS, and migraines. The main mental and emotional symptoms are cognitive dysfunction, depression, and anxiety. These symptoms are also accompanied by an acute sensitivity to light, sound, smells, foods, medications, and odors. (About the Disease) Any exertion whether it be physical, mental, or emotional can cause symptoms to flare up and become worse. ME/CFS can affect anyone of any age, sex, or race but is most common in women of childbearing age (approximately 15-44 years). Up to 89% of people with ME/CFS lost their job due to their illness, and 69% are unemployed.(SMCI Infographic) Almost 90% of ME/CFS patients are women. (Faro et al.) It is obvious that this suffering must be alleviated in any way possible, yet in 2014 the US government spent $2 per patient on ME/CFS research, and $2450 on HIV/AIDS research, while ME/CFS still has almost twice as many cases as HIV/AIDS. (SMCI Infographic) The gross underfunding of ME/CFS research and resources in the United States is a huge injustice, and the federal government urgently needs to allocate more funds to help ME/CFS patients.
The three main ways that ME/CFS patients would benefit the most from government funding are: 1) research, 2) patient needs, and 3) practitioner education and awareness. Funding research would include research into both the possible causes or triggers of ME/CFS and for the innovation of new drugs that would be able to treat ME/CFS. It would also include clinical trials of drugs that already exist, but specifically focusing these trials on patients with ME/CFS. Currently, there has been only one trial for Valcyte, an antiviral that many experts believe could be helpful for patients with elevated levels of Epstein-Barr Virus (EBV) and other Herpes-class viruses including HSV1, HSV2, and HHV6. Patient needs would include bolstering direct financial support for social security and Medicaid to compensate for the massive loss of productivity and employment due directly to ME/CFS. Practitioner education and awareness would consist of educating current doctors about ME/CFS as well as encouraging medical schools to integrate ME/CFS into their curriculum.
One of the most important ways that the government needs to support ME/CFS patients is by funding practitioner education and awareness. Approximately 90% of people living with ME/CFS are undiagnosed. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) This is mainly because many doctors remain unaware of ME/CFS; due to this lack of practitioner awareness many patients are told that their symptoms are “in their head” because there is no one specific lab test to diagnose them. Most doctors do not know or understand what ME/CFS is, even though the CDC first officially recognized CFS as a neurological disorder almost thirty years ago, many practitioners still believe the falsehoods that it is due to deconditioning, mental illness, or is that it is simply psychosomatic.
Even the doctors that do believe that ME/CFS is a legitimate illness often do not know or understand proper courses of treatment. Many of the treatments suggested by governing bodies such as NICE, the UK’s National Institute for Health and Care Excellence, promote ineffective and dangerous treatments for ME/CFS. (Kindlon) Some of these treatments include Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT). While these are not recommended by US governing bodies, many doctors still attempt to treat the disease with these outdated and dangerous treatment options. There are currently no FDA-approved drugs or treatments for ME/CFS despite the millions of people suffering from this condition. The Center for Disease Control has one page dedicated to treatment guidelines for ME/CFS that essentially states that there is no good treatment and that treatment consists only of treating symptoms that are most bothersome to the individual patient. This also means that many major insurance companies will not cover treatments that are overwhelmingly accepted by ME/CFS experts. Also, the CDC suggests seeing a different specialist for each symptom (pain, sleep problems, orthostatic intolerance) which can be helpful, but can also be difficult when doctors do not communicate, especially when many specialists do not understand the disease at all. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
Discrimination in the medical field against female patients contributes greatly to the roadblocks faced by ME/CFS patients. While it may seem like these instances are just individual experiences, it is important to understand that there are millions of individual patients in the US, and as many as 24 million people suffering worldwide. These experiences are important because they are not just had by one person, but are almost universal with ME/CFS patients.
The under-funding and poor understanding of ME/CFS research and resources should be considered an urgent feminist issue. Because 90% of ME/CFS patients are women, many patients are thought to be exaggerating their symptoms. From the first stages of the onset of their illness, patients are often met with excessive barriers to getting the care they need and deserve. Sadly, women in the United States often face many additional barriers to proper treatment for chronic illnesses. In the 2011 Institute of Medicine report Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, women are more likely to suffer from chronic pain syndromes, including CFS, fibromyalgia, and endometriosis. Additionally, more likely to be misdiagnosed, and delayed in being correctly diagnosed. They are also more likely to face “improper and unproven treatments, gender bias, stigma, and ‘neglect, dismissal and discrimination’ from the health care system (Campaign to End Chronic Pain in Women, 2010, p. 4).” Women were more likely to have chronic pain but also more likely to be mistreated for it.
Women are not getting the medical care they need and deserve because of discrimination. The same 2011 Institute of Medicine report says “Women experience disparities in pain care…Women with these conditions have faced not only severe pain, but also misdiagnoses, delays in correct diagnosis, improper and unproven treatments, gender bias, stigma, and ‘neglect, dismissal and discrimination’ from the health care system.” (Institute of Medicine) Pain is one of the most recognized symptoms in ME/CFS patients. Patients experience muscle pain, joint pain, migraine headaches, and are at an increased risk for gynecological pain disorders. This is very real, chronic pain, but because the seriousness of ME/CFS is downplayed by many physicians, these patients cannot get the treatment they need and feel devalued in the process. In a 2014 survey conducted by the National Pain Report, over 90% of women with chronic pain feel that they are discriminated against by the healthcare system because of their gender. In the same survey, 84% feel they have been treated differently by doctors because of their sex, and 65% feel doctors take their pain less seriously because they are female. (Anson)
There is a large gender disparity in the way that drugs are tested and understood. Most drugs approved by the FDA were specifically tested by and for males. For a number of reasons, females have often been excluded from participating in clinical trials of drugs. In 1993, the National Institutes of Health established guidelines for inclusion of women and minorities in clinical research. (National Institute of Health Staff) In 2017, the NIH updated their policy to indicate that any differences in reactions to drugs in women, racial minorities, and ethnic minorities need to be identified in clinical trials. (National Institute of Health Staff) This is a big step forward, but does not fix the fact that older drugs that have different reactions and side effects in males and females are not particularly well understood by doctors, patients, or companies.
Moreover, drugs whose patents have expired may have new uses but are not being studied because they are no longer profitable. For example, Low Dose Naltrexone is sometimes prescribed to ME/CFS patients, as well as patients with various autoimmune disorders. Naltrexone was originally intended for people who were dealing with opiate addiction, but at very low doses has been found helpful for healing some patients with autoimmune pain and symptoms. However, there is only anecdotal evidence to suggest it actually helps patients because there is not funding for new studies. The older drugs that were approved by the FDA before 1993 may not have needed to include female participants even if the majority of people using the drug today are female.
Under our current healthcare system, pharmaceutical companies are relying on the drugs that will generate the greatest profit, not necessarily which drugs will help the most people. Studies for developing new drugs for ME/CFS treatment are few and far between because they rely heavily on private funding from nonprofit organizations and university research centers. Currently, new drugs are developed in different stages with funding from state governments, private foundations, pharmaceutical companies, or venture capitalists, with some support from government sources like the National Institute of Health. (Wizemann et al.) With diseases like ME/CFS, that may not be rare, but little is known about them, the monetary return on investment for pharmaceutical companies may not seem worth the risk. This lack of innovation for people suffering from this disease is detrimental to those individuals and for our society as a whole.
The economic burden of ME/CFS in the United States is an estimated $17-24 billion loss from medical expenses and lost productivity due to patients being too sick to work. (SMCI Infographic) This is only the annual cost, while many patients remain ill for decades. The individual economic costs are divided into two main categories: direct and indirect medical costs. Average annual expenditures per patient were found to be $9,436, and lost productivity totaled $9.1 billion. (Jason et al.) The combination of lost household income with an average of $9,436 in additional medical expenses puts patients and their families in a very bad position. $9.1 billion in lost productivity poses a huge risk for the US economy, especially as many of these are young people who should be healthy and productive members of society. This is a significant economic incentive to find a viable treatment and cure for ME/CFS. Dr. Berne asserts in Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide that “by afflicting those in their most productive years, CFS presents a serious threat to the nation’s workforce. The loss of workers, the mounting medical expenses, the increasing number of disability cases, and cumulative disability payments from Social Security and private insurers are potentially devastating to our national economy.” This is not a reason to not fund disability payments, but rather should be a national reason to want to find treatments and cures for patients so that they can return to productive lives. Patients do not want to have to live off of disability forever, they want to not be disabled and they want their lives back.
There is a big gap between the needs patients have and the government meeting those needs. Funding must to be allocated to patient needs. ME/CFS is not listed by name on Social Security’s website as a condition eligible for Social Security, but they do have a brief guide to applying as someone disabled by ME/CFS. Even when claimants should be granted Social Security Disability benefits, most are denied. Even the process to just find out you have been denied can take years. Similarly, state-by-state variations are met with bureaucratic difficulties in getting Medicaid. Many normal functions such as cooking, cleaning, bathing, and dressing are impaired and many patients need someone to take care of them full time. This means that any financial assistance programs to help with the costs of living and medical expenses are helpful to patients.
In addition to the previously discussed funding, legislation surrounding healthcare is also imperative for patients. Currently, there are class action lawsuits against insurance companies for denying necessary care to patients with autoimmune and related illnesses without even trying to understand why certain treatments may be effective. ME/CFS patients are being robbed of their personal, professional, and physical lives. Their lives can get put on hold completely, often for decades at a time. The fact that there is such little government support is a huge injustice for patients and society as a whole. It is unjust that patients have to deal with a largely untreatable and incurable disease that has the worst quality of life of any chronic illness. It is unjust that we live in a society that is complicit in this suffering, and it is unjust that the wealthiest country in the world is not funding research for such a widespread and devastating disease.
- “About the Disease.” Solvecfs.org, The Solve ME/CFS Initiative, 2018, solvecfs.org/about-the-disease/.
- Berne, Katrina. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide. Hunter House, 2001.
- Falk, M, et al. “The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).” PLOS One, vol. 10, no. 7, 6 July 2015, http://www.ncbi.nlm.nih.gov/pubmed/26147503.
- Faro, Manica, et al. “Gender Differences in Chronic Fatigue Syndrome.” Reumatologia Clinica (English Edition), vol. 12, no. 2, 12 Apr. 2016, pp. 72–77., doi:10.1016/j.reumae.2015.05.009.
- “How Many People Have ME/CFS?” American ME and CFS Society, 27 June 2016, ammes.org/how-many-people-have-mecfs/.
- Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Washington (DC). Relieving Pain in America: a Blueprint for Transforming Prevention, Care, Education, and Research. National Academies Press, 2011, http://www.ncbi.nlm.nih.gov/books/NBK92516/.
- Jason, Leonard A, et al. “The Economic Impact of ME/CFS: Individual and Societal Costs.” Dynamic Medicine, vol. 7, no. 1, 2008, p. 6. US National Library of Medicine National Institutes of Health, doi:10.1186/1476-5918-7-6.
- Johnson, Cort. “Is Chronic Fatigue Syndrome (ME/CFS) an Autoimmune Disorder?” Phoenix Rising, 2 June 2012, phoenixrising.me/archives/6190.
- Johnson, Cort. “Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) Is Inflammatory Disorder.” Simmaron Research, Simmaron Research, 11 Aug. 2017, simmaronresearch.com/2017/08/major-stanford-study-indicates-chronic-fatigue-syndrome-mecfs-is-inflammatory-disorder/.
- Kindlon, Tom. “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Bulletin of the IACFS/ME: A Quarterly Publication of the International Association for CFS/ME, vol. 19, no. 2, 2011, pp. 59–111., iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx+.
- “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 3 July 2017, http://www.cdc.gov/me-cfs/about/index.html.
- “SMCI Infographic.” Solvecfs.org, Solve ME/CFS Initiative, Dec. 2017, solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf.
- National Institute of Health Staff. “NIH Policy and Guidelines on The Inclusion of Women and Minorities as Subjects in Clinical Research.” NIH Policy and Guidelines on The
- Inclusion of Women and Minorities as Subjects in Clinical Research, U.S. Department of Health and Human Services, 28 Nov. 2017. grants.nih.gov/grants/funding/women_min/guidelines.htm.
- Wizemann, Theresa M., et al. Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary. National Academies Press, 2009, www.ncbi.nlm.National Institute of Health Staff.gov/books/NBK50972/.
- “Women in Pain Report Significant Gender Bias.” Edited by Pat Anson, National Pain Report, National Pain Report, 8 Nov. 2015, nationalpainreport.com/women-in-pain-report-significant-gender-bias-8824696.html.