1. Slow Societal Acceptance
Years ago other illnesses were questioned - were they real?     Society took a step forward each time.

Many patients were told these illnesses were 'in their head' which led to problems at work, at home, and didn't lead to proper treatment.   Fortunately, this era for FM & ME/CFS patients is showing signs of departing. There is growing recognition of the empirical findings of science, proving the biological basis of FM & ME/CFS. Let's call it a frontier and take it on.

2. FM & CFS: increased co-morbidities and mortality
Some people think FM & CFS are not life-threatening, and do not grow worse or more expensive for the health system.   Unfortunately for the patients and the health system, this isn't true.

Patients with ME/CFS or FM routinely experience other symptoms, other co-morbidities.     An example: heart failure is a common complication of ME.   Consider that stress, easily understandable in the context of a low disability income and an expensive society, is also known to harm the heart.   Long term drug use has its own damaging effects.   Even the drugs have long lists of side-effects that most people would find disagreeable in themselves.

As has been found with other chronic illnesses such as MS, depression is found within the population at higher levels than in a healthy population. The lifetime risk of depression in those with multiple sclerosis (MS) is very high, with some estimates exceeding 50%.

There is a worrying association between the report of widespread pain and subsequent death from cancer in the medium and long term.   This may have implications for the long term follow up of patients with "unexplained" widespread pain symptoms, such as those with fibromyalgia. Increased cancer is the main cause of death.   As reported in the British Medical Journal.   Mortality was higher in people with regional pain and widespread pain than in those who reported no pain.

Brain scan technology is revealing chronic pain leads to a loss of gray matter, click here for more.

Some of the other co-morbidities experienced include: Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud's Phenomenon, Prolapsed Mitral Valve, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto's thyroiditis, Sicca Syndrome, etc

3. Dysfunctional immune system = greater threat, all the time.
West Nile virus more dangerous for the million Canadian FM & CFS patients.   FM-CFS Canada is advising the one to one and a half million Canadians with Fibromyalgia and Chronic Fatigue Syndrome to be careful, as their weakened immune systems put them at greater risk of West Nile Virus. Dr. Ellen Thompson of Ottawa:   "The average FM and CFS patient already gets a lot of common colds, several every year, easily suffers bacterial infections and is at greater risk with all more serious threats."

4. Pain hides other symptoms.
An example: a person with a bowel problem would take notice of the pain as a warning sign and visit their doctor. But FM or CFS patient with widespread pain might not know that they have a new pain. We've heard such stories, where the insidious continual pain hides the early warning signs the rest of us rely on.

5. Isolation & Divorce higher in the FM & CFS community
Divorce rates in the Fibromyalgia community are higher than the national average. Why? Simply because spouses find it hard to live with someone who is constantly in pain, suffering from fatigue, a depressed immune system and cognitive challenges. Leaving these people on their own, to fend for themselves, usually on disability insurance, means they are some of society's most unfortunate people.

Homelessness
Consider the impact on their health, on society. This longitudinal study in Sudbury, Ontario, found FM a frequent cause of homelessness.

6. Spousal health can be affected - doubling the impact circle
The effects of the day-to-day uncertainty in the severity of FM and the difficulty of planning causes negative effects on spousal health.
Arthritis Rheum. 2006 Feb 6;55(1):86-93; Reich JW, Olmsted ME, van Puymbroeck CM., Arizona State University, Tempe

7. World Health Organisation lists 10 leading suicide causes, FM/CFS/ME patients often have several of them:
The WHO's top 10:   Poverty, unemployment, loss of loved ones, arguments, breakdown in relationships, substance abuse, childhood abuse, mental disorders, physical illness and disabling pain.

Low incomes common, disability insurance commonly about $800 per month.
Even a healthy person trying to live forever on disability insurance would probably experience depression, stress, and other health risks.

8. Poorly treated. Nearly all one million FM & CFS patients intially misdiagnosed, half still are.
Medical malpractice is a concern to all doctors. But reports from a survey of more than 1000 Fibromyalgia patients indicate nearly every one was misdiagnosed, sometimes for years. They were given the wrong medication or treated for an illness they didn't have all because physicians have not yet been sufficiently educated to recognise the four symptoms of Fibromyalgia and Chronic Fatigue Syndrome. The government has long known about the illnesses, but has done little to respond.

...says Hannah Pazderka-Robinson:
"There are a number of medical professionals who don't believe that CFS exists in the first place," said Pazderka-Robinson. "The problem is, both CFS and depression are characterized by very similar profiles. Imagine a patient who approaches a doctor and tells him they feel depressed and tired all the time. Alberta study distinguishes between Depression and CFS:

FM and Depression have distinct biological features
FM patients can experience Depression, and Depression patients can experience pain, but the two are to be treated differently.
Depression Unrelated to Level of Chronic Pain, Arthritis and Rheumatism May 2005
Researchers in Canada and elsewhere report that the two conditions have unique causes. Unlike patients with depression, those with chronic fatigue syndrome have lower skin conductance levels and higher skin temperatures in the arms and legs. Fibromyalgia patients 'want' to do things, their pain holds them back.

9. Study shows early intervention helps FM & CFS patients. Most are missed.
Studies report that early intervention with FM & CFS patients is the best way to limit the severity of the illnesses. Canada's system usually has patients spending years finding a diagnosis, by which time they are well into their illnesses. An education program for physicians to help them learn about the symptoms is needed to help the early intervention process.
Outcomes in Young Women with Fibromyalgia
CFS Rehabilitation strategies are most successful when they are initiated early in the illness.

10. Doctor Shortage: Waiting Lists Infinite
Chronic pain doctor waiting lists are years long. A nation-wide shortage of chronic pain physicians has been growing with no national or provincial plan to address the matter. Neither is there any investigation of how current resources can be better used. People find new physicians only when previous patients die or move away. This should not be how the next chronic pain patient finds the situation.
Beyond access: who reports that health care is not being received when needed in a publicly-funded health care system?   Can J Public Health. 2004 Jul-Aug;95(4):304-8

11. Next generation of physician education is in poor shape
An informal survey of physicians in training showed that the level of awareness of FM & CFS is still poor, meaning that the current generation of medical grads are still untrained for conditions that afflict more than one million Canadians. The debate in past years as to the veracity of the illness is now being compounded by the slow steps medical schools are taking to educate their students. The illnesses are accepted by Health Canada and the World Health Organisation and should be in medical teaching curriculums.

12. Two-tier health care: FM & CS patients need multidisciplinary medical coverage
There are no drugs specifically approved for the illnesses in Canada.   The non-drug therapies usually are not covered by Provincial health plans, at least for these two illnesses. This means some patients can't afford their recommended therapy plan, hurting their ability to keep working.

The studies show that complex long-term medical conditions require patients to learn about all aspects of their illness, to become expert at self-management. Currently, patients are lucky if they have access to one physician, let alone the full range of relevant health practitioners with their various pieces of advice and therapy for patients. Evidently this will limit the patient's ability to improve their outcome.

Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome.   Pain. 2004 Jun;109(3):205-6.
A meta-analysis of fibromyalgia treatment interventions,   Ann Behav Med. 1999 Spring;21(2):180-91.
The effectiveness of chiropractic management of fibromyalgia patients: a pilot study.
Evaluation of four outpatient educational programmes for patients with longstanding fibromyalgia.
Management of fibromyalgia syndrome - 505 articles were reviewed.   JAMA. 2004 Nov 17;292(19):2388-95.
Fibromyalgia: a randomised, controlled trial of a treatment programme based on self management.   Ann Rheum Dis. 2004 Mar;63(3):290-6

13. Legal Challenges, extra financial challenges
Their legal frontiers are many, often with insurance firms denying payment.

How good do you think your disability insurance plan really is? Most patients, some of them former executives, come to the sad realization that there is plenty of wiggle room for insurance companies to limit their liability to you. One question they typically ask after two years, is whether you are capable of doing 'any' job, not just your former job. Conceivably so in a world with so many types of work. But which employer wants you and your irregular need for absences, your cognitive challenges? The insurers don't ask whether there are jobs for you to live on, only whether in the abstract, you could work. Then they deny coverage. Can you afford lawyers to fight them? And no other insurer will usually take you with a pre-existing condition.

14. Provincial patient groups still fight for Billing Codes, better physician education
"The New OHIP Diagnostic Code for Fibromyalgia and Chronic Fatigue Syndrome is number K037... ",   thanks to efforts of Ontario patient groups, physicians in Ontario are now to be paid more to treat the illnesses. What of the other provinces?
"Tous ces facteurs nous incitent à la démarche d’aujourd’hui auprès du Ministère de la Santé et des Services Sociaux, la mise en place d’un CODE SPÉCIFIQUE pour le syndrome de la fibromyalgie dans la classification internationale des maladies (CM10)."

15. Governments are not leading, they're resisting action
FM-CFS Canada and its associates, representing more than one million patients, are bringing the community's needs to the Provincial and Federal Governments.   The issues include the coverage of medical services and medications, the waiting lists, physician and patient education, proper diagnosis and treatment as per by Health Canada standards, research, and disability insurance issues.   Canada needs a FM & CFS Action Plan to help the more than one million patients, and their families.

16. Federal Research should be in full stride - Why is no one worried about becoming next in line?
One might wonder why Canadians don't seem to wonder why a life-changing illness, an illness that afflicts more than one million Canadians, isn't a big concern. West Nile virus and SARS quickly gained headlines and research commitments. But FM & CFS quietly continue to take down more than 30,000 people every year. Appeals to past Federal governments have fallen on deaf ears. Why are politicians not more concerned about a widespread health risk that causes long-term economic losses, family disruptions, and personal grief? Do they need public rallies? As a healthy Canadian, you might well ask when chronic pain will enter your life, as 10% of the population lives with it.

Click here to see the Federal Health Minister's Executive Assistant's thoughts on FM & CFS research, and the importance of action.   Maybe this unknown cause isn't a problem.   Leaves one wondering what if the researchers for SARS and West Nile hadn't put in an acceptable proposal, would there have been anything done?

Canada's FM & CFS researchers, great but too few
Warren Nielson and Harvey Moldofsky, two leading FM researchers participating in our Research Hub, have indicated that the field of researchers dedicated to FM is very small, that money and patients for studies is hard to find. FM-CFS Canada is working to encourage a Research Chair, to begin formulating a center of research expertise in the field, to learn the cause, treatment and cure. We need to bring in researchers from other health topics to help this community of more than one million people.

Even the former Conservative Finance Minister, the Honourable Michael Wilson, forner Chairman of NeuroScience Canada, has publicly said there is too little research funding for neuropathic pain given its multi-billion dollar annual cost to society.

17. Business doesn't like FM or ME/CFS
For an employer, having an employee with FM or ME/CFS isn't good. Honda was ordered to pay $500,000 last year for wrongful dismissal of an employee who needed flexible arrangements due to CFS. Employers lose their investment in training, and sometimes, a valuable employee whose knowledge or skills are sufficient to disrupt the company. Federal and labour law prohibits the firing of an employee for reasons of disability. This hurts productivity and profit.

Even when the illness affects an employee's spouse or child, the impact can be to lessen the hours devoted to work by their employee, increased stress on the employee, absenteeism as they attend to their medical needs, and a disruption to business.

Business doesn't like losing gainfully employed consumers, whose average income in Canada is $30,000, for as they move to Disability Insurance they typically earn about $10,000. This income drop strips business of sales revenue.

This then hurts Government's tax revenues from business.

18. A patient would like a big health charity serving this population
Consider how FM & CFS/M.E. cost society billions of dollars.   Consider that the cost to improve outcomes is much less.   Evidently, the lack of a major health charity for FM & CFS/M.E. have left the health system without a catalyst towards an efficient response.   Also, health charities tap into the patient community and their friends, bringing added resources to the battle.   It seems health charities are a good investment for their return to society, helping make it work more efficiently, bringing together resources and participants, lowering the cost of these illnesses to society.   This will happen with FM & CFS/M.E. too, it's a shame it didn't happen when there were only thousands of patients.