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ME/CFS Myth Busting Quiz

How much do you know about the science behind ME/CFS?

MacDonald, L. (Spring 2008). The Science of CFS: CFS Myth-busting Quiz . Quest: National ME/FM Action Network Newsletter, 77. [Editor’s note: CFS has been replaced by ME/CFS throughout, and text has been edited for space]

 

1. “Chronic fatigue” is a correct short term for “chronic fatigue syndrome.”

Answer: False

Using “chronic fatigue syndrome” and “chronic fatigue” interchangeably contributes to diagnostic confusion or otherwise misrepresents the nature and scope of ME/CFS to the public. Calling chronic fatigue syndrome “chronic fatigue” is really as inaccurate as calling multiple sclerosis “multiple.”

ME/CFS is a clinically defined condition involving signs and symptoms from many body systems—predominately from the immune and neurological categories. There are three clinically identified stages, and epidemics resulting in ME/CFS are well documented.

In contrast, “chronic fatigue,” like “pain,” is a symptom that can manifest in any one of hundreds of conditions from diabetes to anemia to arthritis or ME/CFS.

 

2. ME/CFS is an uncommon illness.

Answer: False

Few realize just how common ME/CFS is. According to the 2003 Health Canada Survey, approximately one in 100 Canadians may have it—341,000 men, women and children.

The US government Centers for Disease Control (CDC) now estimate the population affected at up to 8 million Americans, which is 1 in 43 men, women and children. However, this estimate is based on the controversial 2007 CDC diagnostic criteria which include illnesses which are not ME/CFS, but which share some characteristics.

Studies across the world have indicated that the prevalence is between 1/250 and 1/100 people.

Using the Canadian criteria and conservative estimates, ME/CFS is several times more common than Parkinson’s, lung cancer, AIDS or MS in Canada!

 

3. Fibromyalgia is essentially the same illness as ME/CFS.

Answer: False

ME/CFS and fibromyalgia (FM) have now been shown to be different on a fundamental (biochemical) level.

Though there are notable commonalities and many patients meet the criteria for both ME/CFS and FM, 2007 gene function studies present strong evidence that they are distinctive illnesses.

However, it is recognized that significant overlap exists clinically and that a large percentage of ME/CFS patients fit the criteria for both FM and ME/CFS. Clinically, ME/CFS is dominated by post-exertional malaise, severe pain, neuro-immune dysfunction and profound unremitting fatigue; fibromyalgia features severe muscle and joint pain with a specific pattern of tender points, neuro-immune dysfunction and amplification of pain perception.

Recent research has indicated clear differences in the body’s automatic body functions (governed by the hypothalamus, pituitary, adrenals, thyroid and limbic system) between these two illnesses. Furthermore, the effect of exercise on FM is the opposite of ME/CFS. (It may help FM pain in the long run; it may cause a relapse in ME/CFS.)

Despite these findings, fibromyalgia patients often face similar disabilities, and the same social, political and medical/health care access barriers as citizens with ME/CFS.

 

4. People with ME/CFS are tired all the time. We’re tired at the end of the day, especially at this age (30/40/50/60), so being “fatigued” is really no big deal.

Answer: False understanding of fatigue in ME/CFS

Seabiscuit author Lauren Hillenbrand, an ME/CFS sufferer since age 19, is famously quoted as saying, “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”

Indeed, fatigue is about much more than being tired at the end of the day. Dr. Karin Olson of the University of Alberta and the newly-formed Edmonton Fatigue Framework (EFF), are working to identify the physiological contributors to fatigue in illness including cancer and ME/CFS.

In 2007, at the International Association of CFS-ME, researcher Nicole Porter presented the five types of fatigue identified in an ME/CFS study:

1. Post-exertion fatigue—also called post-exertion malaise (PEM); abnormal recovery time following physical ability.
2. Wired fatigue—the mind is over-stimulated but the body is tired; also called being “wired but tired.”
3. Brain fog—unable to focus thoughts; difficulty recognizing faces, finding words, understanding concepts or applying rules; difficulty forming or accessing memories; the mind is slow and unclear.
4. Molasses fatigue—feeling of heaviness in the limbs; fighter jet pilots report this with increased G-forces.
5. Flu-type fatigue—muscle aches and pains, nausea, sleepiness.

 

Flu-type fatigue was the only type experienced by the healthy participants in the study.

Patients with severe ME/CFS may experience more than one of these fatigue symptoms per day. They may wake up feeling as if they had not slept at all. Fatigue is only one of the many devastating symptoms faced by people with ME/CFS. It should be noted that in most severe neurological or constitutional illnesses, like multiple sclerosis, Parkinson’s disease, cancer and stroke, fatigue is a well-known phenomenon and therefore to be expected. This is another reason why ME/CFS must not be defined solely by fatigue, but by the total clinical picture and the ME/CFS-specific fatigue—abnormal fatigability hours or days after exertion, not alleviated by rest (post-exertion malaise, PEM).

 

5. ME/CFS must be psychological—who was heard of any biological basis for it?

Answer: False

“There are now over 4.000 published studies that show biological abnormalities in patients with this illness [ME/CFS]. It’s not an illness that people can simply imagine they have and it’s not a psychological illness…” Dr A Komaroff, Harvard Medical School.

 

While ME/CFS is a physical illness, ME/CFS patients may suffer from depression or anxiety due to the rigors of their illness. After all, ME/CFS patients experience profound and often permanent personal losses; loss of financial, social, mental, physical, societal and often spousal or familial security and support. It can not be stressed enough that ME/CFS is not a form of depression or some other psychiatric illness. Psychiatric illnesses are also real and serious illnesses which require medical attention, respect and research, but ME/CFS is not among them.

It is important to note that nervous system damage in ME/CFS may affect mood and other brain function in some patients, just as it would in head injury, stroke, MS or in untreated diabetes. Whatever the cause of secondary symptoms, ME/CFS patients need knowledgeable support to get help for all symptoms, without having their main illness misdiagnosed or falsely attributed to depression or anxiety, or faulty illness beliefs.

 

6. ME/CFS is being researched in universities and clinics worldwide, to the same extent as diabetes, cancer and AIDS.

Answer: False

Canada
At the time of writing (March 2008) there appears to be only one Canadian university research project underway directly related to ME/CFS, and it is not funded by Canadian sources. This important University of Calgary ME/CFS exercise physiology study comes to $8,500 (Canadian dollars) and was funded by ME research UK, a group dedicated to promoting biomedical research for ME/CFS (www.meresearch.org.uk). One of two or three indirectly ME/CFS-related Canadian studies is of the molecular structure of the molecule RNase-L, known to be important in ME/CFS impairments. This Canadian-funded study comes to $81,000 over the coming 5 years, and will study other molecules related to other illnesses at the same time. The coming generation of Canadian university immunologists, physiologists, neuroscientists and genetics researchers has few mentors or role models for ME/CFS within the Canadian medial research system.

The world
From 1995-2004, approximately 200 ME/CFS publications were produced, worldwide, each year—with the vast majority of studies coming out of the US and England. Given the remarkable discoveries that have come from such research, it is astounding that such numbers have not steadily increased. Some authors have suggested that this stagnation is directly related to lack of support from government.

Amount of research compared to other illnesses
How does ME/CFS research compare to that of other illnesses?

From January 2002 to May 2006, searching Medline publications online, Dr. Vance Spence, presenting at the Energising ME Research international conference in May 2007, found:

783 ME/CFS articles (i.e. articles primarily focusing on ME/CFS)
6.231 MS articles
48,110 Diabetes articles

ME/CFS is at least three times more common than MS in Canada, even using conservative estimates.

 

7. ME/CFS is a serious illness.

Answer: True

ME/CFS is a serious, disabling and chronic organic (ie. physical, not mental) disorder. International expert Daniel Peterson is on record as stating about ME/CFS: “In my experience, [it] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”

The Centres for Disease Control designates ME/CFS as “A serious legitimate diagnosis CDC PRIORITY 1 disease of public health importance.” According to US statistics provided by the CDC, only 4% of patients had full remission (not recovery) at 24 months.

American researchers found that the quality of life is particularly and uniquely disrupted in ME/CFS and that all participants related profound and multiple losses, including loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and spontaneity. Activity was reduced to basic survival needs for some subjects. The researchers found that the extent of the losses experienced by sufferers was devastating, both in number and intensity. With the direct economic costs added, 2007 research estimates that ME/CFS costs the U.S. economy 19-25 billion dollars a year.

Australian researchers found that patients with this disorder had more dysfunction than those with multiple sclerosis. The degree of impairment is more extreme than in end-stage renal disease and heart disease, and only in terminally ill cancer and stroke patients is the sickness impact profile greater than in ME/CFS. The severity and disability in ME/CFS are greater than in congestive heart failure, acute myocardial infarction (heart attack), multiple sclerosis and type 2 diabetes.

Few people have been reported to die directly from ME/CFS. Nonetheless, given the paucity of research into deaths due to ME/CFS or related complications, and the inconsistent use of internationally accepted guidelines of diagnosis, it is difficult to know if people with ME/CFS are dying from ME/CFS-related causes. UK doctors reported in 2001 that, “ME is rarely listed as the cause of death, although after decades of illness, death from end-organ damage (mainly cardiac or pancreatic failure) is known to occur.”

Conclusion
ME/CFS-related disabilities can be compared to those resulting from MS, early stage Alzheimer's, heart disease, diabetes and AIDS. Furthermore, prolonged physical illness increases the risk of developing severe depressive illness. However, the disabilities and symptoms related to ME/CFS are largely invisible and therefore subject to misunderstanding. In the worst stages the patient is housebound and may be bedridden, adding to the invisibility of the illness. If the patient makes it into public on his or her best day of the year, she may be told she “looks great” by onlookers.

People with ME/CFS have greatly decreased quality of life and the current support for ME/CFS research is scarce. Suffering is great, social empathy is low. Suicide rates are high and are said to be the most common cause of death in ME/CFS and to be related to the current climate of disbelief and rejection of welfare support.

 

8. People with ME/CFS are just tired because they are out of shape and they would surely get better if they would just exercise.

Answer: False

Exercise cannot cure ME/CFS. Physical exercise often exacerbates the symptoms that characterize ME/CFS, resulting in a post-exertional relapse that can last for 24 hours or more. The Canadian Consensus Documents identify post-exertional malaise (PEM) as a hallmark indicator of ME/CFS.

Research findings suggest that non-aerobic exercise (such as weight training), carefully tailored to the stage and severity of the ME/CFS patient, may be more suitable for maintaining strength than aerobic exercise (walking, swimming, cycling), which could precipitate a relapse by further taxing impaired pathways.

However, “it is a myth that patients with CFS can be cured by exercise, but it is also a myth that no one with CFS can ever benefit from some physical activity. For some patients, a carefully monitored program incorporating paced and non-fatiguing activity can be used to strengthen and condition muscles. But it is worth noting that Black, O’Connor, and McCully (2005) recently found that with an average 28% increase over baseline levels of daily physical activity over for a four week period, patients with CFS indicated they had worsening overall mood, muscle pain intensity and time spent each day with fatigue.” - IACFS website 2008 – statement on exercise in CFS.

 

9. People disabled with ME/CFS have access to all the services, assistance and rights already available to meet the needs of disabled citizens in Canada.

Answer: False

Canadian ME/CFS patients face many roadblocks in the quest for needed assistance of all kinds.

The diagnosis of ME/CFS is based on clinical criteria and critically depends on exclusion of other physical diseases, or psychiatric illness. In Canada, the testing recommended on page 19 of the Canadian Consensus Guideline Overviews is rarely carried out or completely known by physicians. The typical ME/CFS diagnostic period of 5 years disadvantages those patients applying for medical or disability leave, since deadlines for supplying documentation of illness can rarely be met by patients awaiting ME/CFS diagnosis. The patient is obliged to pay for laboratory or other ME/CFS specific tests offered only in other countries, with no guarantee that once the results are available, these (Health Canada-recommended) tests will be acknowledged or understood by the insurance company or other recipients.

The various definitions of disability remain open to diverse interpretations, and this, plus the lack of adherence to a gold standard leaves the patient floundering to prove permanent disability—or to prove illness at all.

Lack of implementation of the Health Canada-recommended baseline diagnostic standard (The Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS ) has allowed insurance companies and government disability bodies to ignore findings, rendering the process of proving illness next to impossible. The situation is such that in many cases, no evidence which could be presented by any doctor or lab has been accepted. This equates to a categorical dismissal of ME/CFS as a disabling illness. The financial, person and social spin-offs of this situation are ubiquitous and easy to imagine.

To complicate matters, ME/CFS patients are in the most severe stages by the time they reach out for help and in many cases, filling out a form, making a phone call, or attending an appointment is very difficult or impossible.

Then there is the innate extra expense of being a ME/CFS patient. Private Canadian ME/CFS clinics typically extra-bill for services because the provinces do not cover most ME/CFS-specific tests or procedures/methods, and there is no government body which periodically reassesses this. The result is a default situation of private health care for ME/CFS, with little mainstream care available. This limits access for the many with ME/CFS who have been unjustly denied disability benefits, have lost all former resources and income, and now live below the poverty line on a fixed income.

Added to this is the scarcity of ME/CFS doctors on top of the current shortages of doctors nation-wide (Alberta for instance is short about 1000 family doctors for any condition, according to a 2007 estimate.) Canadian ME/CFS doctors have waiting lists as long as three years, and many are no longer taking new patients. Diagnosis of ME/CFS remains inefficient and diagnostic times average 5 years. Patients should be aware that a Health Canada recommended (Rnase-L) blood test is available through Redlabs USA. In many cases it provides a quick clear diagnosis of ME/CFS. Patients should urge their provincial health authorities to provide access to and coverage for this test.

Few ME/CFS patients are healthy enough to travel to other countries to try the protocols used there. However, our universal health care offers them no ME/CFS-specific options, despite availability at least on a clinical trial basis elsewhere. Provincial governments do not yet fund federally-recommended ME/CFS blood tests, nor are there any government departments or watchdog ethics organizations monitoring and implementing updates to current default protocols of omission.

There exist only a handful of ME/CFS clinics across Canada. The result: half a dozen overloaded extra-billing clinics for 340,000 patients, many of whom are bed ridden or housebound and unable to travel.

When these medical and health care basics are not working, the government, justice system and society at large do not receive the input required to include the needs of ME/CFS patients in existing social, justice or educational programs, provide services, monitor and update policies to include ME/CFS needs, launch inquiries, or change situations which are not working.

Lack of access to medical and health care for ME/CFS patients is an in-depth, multi-faceted issue which already required immediate federal and provincial government attention 20 years ago. By now, it is a well-silenced and global crisis of exclusion, of unprecedented magnitude for any illness in the developed world.

This situation is not unique to Canada. “In the USA, more than 80% of CFS/ME patients have not found a provider expert enough to make a diagnosis, let alone treat their illness. It is a gaping hole in our health care system, and is true across the globe. Our patients are falling into this chasm. The lack of providers with any training in this field guarantees that this will remain the single biggest issue facing our patients. As investigators, it deprives us of our subject population and skews the population we do study to those patients that can overcome the barriers of our health care systems to seek expert care. All in all, this is simply unacceptable.” —Introductory letter on http://www.iacfsme.org/ byNancy Klimas, M.D. President, International Association for CFS/ME (IACFS/ME) 2008.

Hope
There have been recent improvements to aspects of the ME/CFS disability status in Canada, such as the addition of criteria to the Disability Tax Credit application which acknowledge disabilities related to severe ME/CFS. However, much remains to be done to ensure access to ME/CFS healthcare and to disability, human and civil rights at the national standard.

 

10. People usually get better from ME/CFS, it’s just a matter of time.

Answer: False

Most people with ME/CFS will have it for the course of their lifetime, despite using all available symptomatic treatments and complementary medicine.

Though the severity of the syndrome may vary extensively throughout one’s life, the rates of relapse following remission are relatively high. Children and adolescents have a higher rate of improvement to closer-to-normal function, though why this is so is not clear.

We may well find that ME/CFS is not one illness stemming from one cause, but a group of illnesses which result in similar clinical pictures.

The general consensus from research suggests patients have about a 6% chance of recovery – however, follow-up studies of rates of relapse are presumably unknown.  For those who remain sick, illness severity can be high and quality of life can be greatly diminished. Life span is shortened by at least 10 years. ME/CFS clinicians agree that early diagnosis is an important factor in how severe the ME/CFS becomes. Optimal management can at least prevent progression to housebound, dependant, and bedridden states.

Biomedical research is pointing to viral and environmental chemical damage to gene function…so we should not be surprised by the words of ME/CFS genetics researcher Jonathan Kerr, who notes that the specific treatment of virus infections could provide more benefit than is currently being given credit for:

“There is no specific treatment for CFS other than the much-underutilised approach of specific treatment of virus infections. Current priorities are to understand the molecular pathogenesis of disease in terms of human and virus gene expression, to develop a diagnostic test based on protein biomarkers, and to develop specific curative treatments.”

 

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Current CFS Funding in Canada for biomedical/physiology research -by source

CIHR (Canadian Institute for Health Research): Sicheri, Frank.  Structure function analysis of dual function protein kinase-RNAse signaling proteins. Samuel Lunenfeld Research Institute, Mt Sinai Hospital, Toronto, Canada. Operating grant -  2007-08: $81,206.

ME Research UK: Kinesiologist Dr. Brian MacIntosh and clinical psychiatrist/CFS clinician and researcher Dr. Ellie Stein. Repeated Exercise Capacity  in women with CFS/ME. (CAD) University of Calgary, Alberta. Research grant: $8,500.