Naomi Steenson
Governor's Advocate and Children's Ombudsman
Ms. Steenson:
My name is Sara ________ and I live in
Eugene. I am a mother of five and I
suffer from chronic fatigue immune deficiency syndrome (CFIDS or CFS) and
fibromyalgia (FM). I am the founder and
leader of the Lane County Chronic Fatigue Syndrome and Fibromyalgia Support
Group.
As a support group leader, I talk to many people who have these conditions. I also am a patient, and the daughter of a fibromyalgia sufferer. I have, due to my situation, a greater-than-average awareness of the access to health care issues that come along with these diagnoses.
When looking for information for whom
to contact about the problems this letter addresses, I came across your
information on the DHS website. It said
your office deals with “citizens experiencing a problem with, or seeking
information about programs or services provided by DHS receive help and
direction from the Governor's Advocacy Office's ombudsmen. These concerns
include, but are not limited to, child and elder abuse and neglect, access to health and dental programs,
homelessness, personal or family crisis, drug and alcohol treatment, mental
health programs, and services for people with developmental disabilities. This
office also responds to the management of
chronic pain through the Pain Management Program.” The italicized part of this is why I felt
this was the appropriate place to contact.
I am writing because of two main issues. One problem is that CFIDS and FM are excluded
from coverage under Oregon Health Plan, therefore effectively denying access to
treatment for low-income CFIDS and fibromyalgia patients. The other is that people in Lane County with
chronic pain, but particularly with these conditions, are being denied pain
treatment, especially in acute or emergency situations. I trust that after you read my letter, you
will understand how debilitating these conditions are and why people who suffer
from them have the same rights to treatment as other patients with chronic
illness.
Chronic Fatigue Immune Deficiency Syndrome or Chronic
Fatigue Syndrome (CFIDS/CFS) is a condition that is
characterized by incapacitating fatigue (experienced as profound exhaustion and
extremely poor stamina) and problems with concentration and short-term memory.
It is also accompanied by flu-like symptoms such as pain in the joints and
muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A
distinctive characteristic of the illness is post-exertional malaise, a
worsening of symptoms following physical or mental exertion occurring within
12-48 hours of the exertion and requiring an extended recovery period.
The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend1. Other symptoms are cognitive difficulties, atypical reactions to medication, low-grade fevers and/or lower than normal body temperature, sensory sensitivity, shortness of breath, insomnia and hypersomnia (not uncommonly together), and a wide variety of others. People with CFIDS often have several co-morbid conditions, such as dysautonomia (dysregulation of the autonomic nervous system), irritable bowel syndrome, migraines, chronic pelvic pain issues, chronic sinusitis and allergies, Raynaud's Phenomenon (a circulation problem particularly in the extremities), and others. Most of the co-morbid conditions that go along with CFIDS are not covered under Oregon Health Plan either, putting a double burden on people who rely on OHP for their health care.
Contrary to popular belief (even among medical professionals), not all CFIDS is associated with mononucleosis, or the Epstein-Barr virus. Most people with EBV levels in their blood do not have CFIDS, and many people with CFIDS have little to no EBV levels in their blood. CFIDS has been shown to onset after physical trauma (accidents, surgery), illnesses of many kinds (sinus infections, mono, unknown viral infections, bacterial infections), and childbirth. Often though, symptoms appear with no preceding event, and there is no evidence that any one particular event causes CFIDS. Although a sudden onset to symptoms is more common, that does not rule out a gradual onset to symptoms.
People with CFIDS have the same levels of depression and anxiety as other people who suffer from a chronic illness. Pre-CFIDS, there is not a higher prevalence of psychiatric disorders then in the general population. Research has shown several detectable abnormalities in CFIDS patients including immunological dysfunction, dysautonomia, dysfunction of the Hypothalamic-Pituitary-Adrenal axis, accelerated loss of grey brain matter, and other neurological difficulties2. Approximately 55% of CFIDS patients meet the diagnostic criteria for fibromyalgia as well.
Fibromyalgia
(FM, FMS) is a chronic pain disorder characterized by widespread pain
throughout the body and problems with chronic fatigue, unrefreshing sleep,
morning stiffness, cognitive difficulties, exercise intolerance, sensory
sensitivity, numbness, tingling, and burning sensations in various parts of the
body and impaired coordination, among other symptoms. Patients with
fibromyalgia have pain amplification: they feel non-painful stimulus as painful
(allodynia) and feel mildly painful stimulus as extremely painful
(hyperanalgesia). This is not a
psychiatric condition, but a central nervous system dysfunction3.
Although fibromyalgia is increasingly recognized as a
neuroendocrine condition, for the most part it is still diagnosed and treated
by rheumatologists. The American College
of Rheumatology's guidelines for the diagnosis of fibromyalgia is that the
patient should have widespread pain in all four quadrants of the body for a
minimum duration of three months and tenderness or pain in at least 11 of the
18 specified tender points when pressure is applied. Most healthy individuals experience pain in
only a small number of tender points in response to this test. This test is not definitive, as it is
possible to have fibromyalgia with less than 11 out of 18 tender points4. Fibromyalgia is NOT a diagnosis of exclusion,
and it is possible to have fibromyalgia with CFIDS or other chronic illnesses. Approximately
70% of people with fibromyalgia meet the diagnostic criteria for CFIDS.
The symptoms of fibromyalgia are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Like CFIDS, most symptoms are invisible. Also like CFIDS, most fibromyalgia patients have a variety of co-morbid conditions, such as migraines, irritable bowel syndrome, irritable bladder, chronic pelvic pain issues, Raynaud’s Phenomenon, dysautonomia, TMJ, restless leg syndrome, and others. Almost all fibromyalgia patients will have a co-morbid condition called myofascial pain syndrome or chronic myofascial pain (CMP). Chronic myofascial pain is often misdiagnosed as fibromyalgia, and many people, even health care professionals, do not know the difference between tender points and trigger points. It is possible to have CMP without fibromyalgia, but almost everyone with fibromyalgia will have CMP. CMP is a condition where a person has multiple active “trigger points”. Trigger points are hyper-irritable spots that develop in the skeletal muscles or surrounding myofascial. Although both conditions result in some level of central nervous system sensitization, myofascial pain is actually in the muscles themselves. Trigger points can often be felt, and they very often radiate pain. Where fibromyalgia is “all over” pain, CMP is pain in a specific area or areas. This pain can be very severe, and can be mistaken for acute pain crises such as a sprain or severe carpel tunnel, or even some more serious and frightening illnesses such as meningitis (the stiff neck and head pain) and appendicitis. They can also cause non-pain symptoms such as stiffness, nasal congestion, diarrhea, irritable bladder, and other symptoms. You can have the all-over pain of fibromyalgia and have multiple active trigger points5. Fibromyalgia has been compared to flu-like aching, skin pain, deep intense pain, where CMP has more components such as throbbing, shooting or other similar descriptions. CMP is a component in many other chronic pain conditions such as lupus and rheumatoid arthritis, it can be disabling in itself, and many patients who start out with chronic myofascial pain often develop fibromyalgia, especially if the CMP is untreated or treated inappropriately, and it usually is. Chronic myofascial pain is also not covered under Oregon Health Plan.
Fibromyalgia, like CFIDS, has been shown to onset after physical trauma (accidents - particularly car accidents or other trauma involving the neck and upper back, surgery), illnesses of many kinds (sinus infections, mono, unknown viral infections, bacterial infections), and childbirth. Often though, symptoms appear with no preceding event, and there is no evidence that any one particular event causes fibromyalgia.
As with CFIDS, although many people with fibromyalgia have anxiety or depression, there is not a higher rate of psychiatric disorders pre-diagnosis than in the general population. There are numerous detectable abnormalities in fibromyalgia patients, including central nervous system abnormalities visible on SPECT imaging, a three times higher rate of substance P (a neurotransmitter that lowers the pain threshold) in the cerebrospinal fluid6, immune system abnormalities7,accelerated loss of grey brain matter8, and other neurological and endocrine abnormalities.
Similarities and Differences:
These conditions have many similarities. The majority of the people meet the diagnostic criteria for both, which makes treatment even more difficult. Outcome is generally worse for people who have both CFIDS and fibromyalgia, those who are older, those who are more severe, and those who had a longer gap between onset of symptoms and diagnosis/treatment.
Both of these conditions have neurological
and endocrine dysfunction, as well as some level of immune system involvement. A widely accepted explanation for these
conditions is called “central sensitization syndrome”. Most of the common co-morbid conditions are a
result of some sort of dysfunction that causes hypersensitivity. Central sensitization is not unique to
CFIDS and fibromyalgia; it also occurs in other painful conditions such as
irritable bowel syndrome, overactive bladder, TMJ syndrome, idiopathic low back
pain, vulvodynia, and multiple chemical sensitivity. Central sensitization in
fibromyalgia (or CFIDS) can be experimentally validated in several ways.
The easiest methodology to understand is the direct imaging of the brain either
at rest or shortly after the application of painful stimulus10. When someone has both, one condition may
precede the other by months or years. In my case, for example, I have had CFIDS
since early high school that came on after a particularly severe bout of
bacterial sinusitis, probable CMP since my mid-to-late teens, and probable
fibromyalgia since 2004, even though I was not diagnosed with the CMP or the FM
until 2007. Atypical health symptoms are often reported back as far as
childhood among sufferers (more easily fatigued, higher sensitivity to pain, higher susceptibility
to infections). Pediatric CFIDS and FM
is widely undertreated and underreported.
It is often believed that CFIDS patients can’t have pain and FM patients
can’t have severe fatigue. This is
incorrect. CFIDS patients can have
severe pain, and FM patients can have severe fatigue. Patients may find some of the other symptoms
of these conditions (cognitive difficulties and immune system difficulties in
particular) more difficult to manage then the “hallmark” symptom of the
disease.
However,
there are differences. Sore throat,
fluctuating body temperatures (frequent low-grade fevers, or low body
temperature, even in the presence of infection), exercise intolerance and
post-exertional malaise are more common in CFIDS. Infections and immune system involvement are
more prominent and better documented with CFIDS, where physical trauma prior to
onset (such a car accident, surgery, or childbirth) is more common with
fibromyalgia. Widespread body pain, other
co-morbid pain conditions (CMP, autoimmune conditions, etc.) and allodynia are
more common in FM.
Impact of CFIDS and Fibromyalgia:
Although the bias against these
conditions still remains (For a prominent example, just last year the New York
Times did an article strongly suggesting that fibromyalgia does not exist. Can you imagine a similar article about MS or
rheumatoid arthritis- two other conditions that don’t have a definitive
diagnostic test?), it is slowly disappearing as more people become aware that there
is widespread evidence that these conditions are prevalent, undertreated, and
disabling. Social Security and the
Veteran’s Administration have ruled that these conditions are grounds for
disability benefits. Although the
disability assessment process is slanted towards conditions that have
“objective” evidence (blood tests, x-rays, etc.) approximately 30% of patients
with these conditions are receiving some form of disability benefits11.
At a 1995 hearing Congressional
briefing, Dr. Mark Loveless, at the time head of the Infectious Disease
department at OHSU, testified that a patient with CFIDS feels every day
effectively the same way that an AIDS patient feels two months before death9. According to studies done by the Center for
Disease Control, over 4 million Americans, or about 2% of the population
suffers from CFIDS. Most of these are
either undiagnosed or not receiving proper treatment for their condition12.
Three major studies have shown that fibromyalgia causes greater impairment then many other conditions widely accepted as disabling, such as lupus, rheumatoid arthritis, or multiple sclerosis. The areas impacted were physical functioning, role functioning difficulties caused by physical problems, bodily pain, general health, vitality (energy vs. fatigue), social functioning and role functioning difficulties caused by emotional problems and mental health. In one study, fibromyalgia and CFIDS ranked with cancer and heart disease in the impairment on daily functioning13.
The problems with the Oregon Health Plan denial of benefits and the treatment of CFIDS/FM patients:
There are no justifiable grounds for
denying coverage for these conditions. I
recognize that Oregon Health Plan has a limited budget and therefore has a
prioritized care list, but many non-life threatening conditions are covered, as
is preventative care. Other disabling
chronic conditions are covered; and they are not all degenerative. CFIDS and FM research has just recently
really taken off; not because these conditions are new- they aren’t- but
because they have only recently gained validity as “real” conditions. The FDA’s approval of Lyrica and Cymbalta for
fibromyalgia has given authenticity to that condition in particular. Just because they have not discovered how
these conditions are degenerative doesn’t mean they aren’t. Newer research has shown loss of brain matter
and permanent changes to the neurological and immune systems. What else might
be discovered in a few years?
Covering these conditions is much
cheaper than the long-term consequences of no treatment. No treatment means increased doctors visits
and tests as the patient desperately tries to get some help and to get someone
to take them seriously. No treatment means
increased ER visits and other crisis care.
No treatment means an increased addiction rate to street drugs and
alcohol as people try to manage these symptoms on their own. No treatment means decreased work
productivity among those who can work and drastically increased disability
rates. No treatment means increased
physical and psychiatric health problems, especially as the aging process is
factored in and/or years of deconditioning due to inability to take part in
daily life or exercise take their toll.
The prognosis of these conditions is variable, but the vast majority of
patients will get worse or have no improvement if they are not appropriately
treated. CFIDS in particular has shown a
much better outcome if diagnosis and treatment is started within the first two
years of onset of symptoms.
Unfortunately that is a chance for improvement that the majority of
patients will not have. No treatment can kill.
70% of suicides have un-or-under treated chronic pain as a factor, and
more than 50% of these suicides are people 35 and under14. There is potential evidence that severe CFIDS
can kill15.
This policy effectively denies
low-income people with these conditions necessary treatment. I do not know how many other insurance
companies in Oregon have similar exclusion policies; if they do, the fact that
the State of Oregon has decided that these conditions are unworthy of treatment
for low-income Oregonians certainly lends credibility to their decision.
This letter has come out of many
sleepless nights and frustrating phone calls or doctors’ visits. I have been
denied every single treatment or therapy that might be of help except for my
pain medicine- and there are still access problems with that, as I will show later. None of the treatments I have been denied for
have been considered investigational, experimental, or even all that expensive,
and most were easily approved under a different diagnosis; a psychiatric
one. If it wasn’t for my psychiatrist I
would not have most of the other medications I have received. This puts an unfair and inaccurate picture
on my medical record; that my mental health problems are worse than they are
and my physical health problems are really not that bad. I have been denied
physical therapy (not only through OHP, but through the Peacehealth bridge assistance
program because “they don’t feel they should cover” physical therapy for
fibromyalgia or CFIDS), most medications, specialists including the only CFIDS
specialists in the state, pain management specialists, neurologists, and
rheumatologists. I just found out that
Peacehealth Medical Group is not even submitting the majority of requests for
coverage for fibromyalgia and CFIDS patients but is denying them before they
even reach LIPA so that LIPA doesn’t have to be bothered with claims they are
going to deny anyways, and apparently this is all fine and legal.
I have a severe case of fibromyalgia, and medicinal pain management is not simply helpful; it is a necessity. Getting pain medication has saved me numerous ER trips and doctor’s visits and nights up crying due to pain. But since my diagnosis is not covered, I cannot get longer-acting pain medication approved, so I need higher doses of shorter-acting medication. Then I get to be treated like an addict because I’m on “so much” pain medication, and when there is a flare or other acute care crisis I get denied pain management.
I also get accused of not trying enough other therapies, even as they tell me they won’t refer for them because they’ll be denied. I’m on disability, and my husband has had to take on reduced hours at work to help take care of our children. Paying for out-of-pocket physical or other therapy is not an option. (There is, however, a wide market quite willing to take advantage of those who can pay for complementary and alternative therapies and have become fed up with an unresponsive system. The efficiency and safety of most of these treatments is debatable, and they are not meant to take the place of medical treatment even when they are safe and do work.)
I was sent home from emergency gallbladder surgery with two days of slightly increased pain medication. I was taken off a morphine IV and sent home an hour later with totally inadequate pain medication because the surgeon didn’t feel it was “my job to treat your fibromyalgia” or to “take it into account”. Pain amplification is one of the hallmarks of fibromyalgia, so what that meant is that not only did I have inadequate pain management for the surgery anyways, but I was probably in more pain than the average person. I had three more ER visits during my immediate recovery, a post-operative infection, costochrondritis, and a flare that lasted for months. This summer, I had an emergency wisdom tooth removal of a broken and infected tooth. I asked for one day of slightly stronger pain medication. I was refused, because “what you’re taking should be more than enough”. I tried, with blood running out of my mouth, to explain that my pain would be amplified, that acute verses chronic pain was different, and that if I could feel the tooth before it was removed with my pain medication I would be able to feel it afterwards. I did this to no avail. The same predictable result happened; a post-procedure infection and a flare.
These are not my only experiences, nor
are my experiences unique. Since I started the support group, I have got many
calls from other members of the community.
The nature of the conditions means that many of us have OHP, and many of
us have experience with the same medical professionals. (Removed examples for privacy concerns) None of the
rheumatologists in Lane County will accept fibromyalgia patients who do not
have co-morbid rheumatological disorders such as lupus or rheumatoid arthritis,
at least in some part due to the difficulty in getting insurance to cover
treatment for them. I have not yet found
a pain management specialist in Lane County that will accept patients with
“just” fibromyalgia. There is only one
CFIDS clinic in the state, and that is up at OHSU. To my knowledge, there are no neurologists
who accept patients with “just” CFIDS, and no infectious disease specialists in
Lane County accept CFIDS patients.
Because of this, the patient who can no
longer work and goes to apply for disability may find that their medical
records do not reflect the seriousness of their condition and the extensiveness
to which they have tried different treatments.
Their doctor may in fact be getting them treatment under some more minor
condition that actually is covered. For
example, tricyclic antidepressants are very often a front-line treatment for
these conditions, but under Oregon Health Plan, depression is covered and
CFIDS/FM is not. So their doctor, to get
them the treatment they need, may be writing them for depression even if the
patient is not necessarily clinically depressed, if their depression is under
control, or if their depression is reactive depression (depression due to a
circumstance such as a chronic pain illness).
The patient themselves may not be aware of this until they go to apply
for disability and their records show treatment for major depressive disorder. Proof of this may be shown that out of the
fibromyalgia patients who consider themselves disabled by their fibromyalgia and
are receiving benefits, less than 25 percent of the awards were actually
awarded on the basis of the fibromyalgia16.
To allow patients with these chronic
disabling conditions access to the same treatment and rights given to other
patients with chronic conditions not only denies them treatment, it denies them
validity. Due to the invisible nature of
these conditions and the fact that the biological abnormalities are not ones
that a lab test has been developed for, many even in the medical community
do not see these conditions as “real” conditions. Others deny their seriousness because they do
not end in death. The treatment I am
writing about has its roots in these beliefs; that these conditions aren’t
real, that the suffering isn’t real, that the time lost that could otherwise be
spent running with our children or volunteering for something or working at a
job is just due to a psychological weakness and that we really aren’t that
sick- after all, we don’t look sick!
I am writing to ask that chronic fatigue syndrome and fibromyalgia be treated like any other chronic disabling condition, and that Oregon Health Plan (and any other insurance company that practices in Oregon) be required to cover reasonable treatment for CFIDS and fibromyalgia. They should not have any restrictions put on their rights to doctors, medications and therapies that are allowed to other patients with chronic pain conditions (pain management specialists, physical therapy, etc.). I am also writing to say that patients with chronic pain disorders, including fibromyalgia or chronic fatigue syndrome, have the same rights to primary care health providers and acute pain care and management as any other patients, and I am asking that a statement to this effect be sent to the appropriate parties (ex: Oregon Medical Group) and hospitals, particularly the emergency rooms, in Oregon. A patient who presents with an acute care crisis, particularly one due to injury or illness (emergency surgery, broken leg, etc.) has the same rights to have their pain controlled as any other patient, and offering them the same medicine they have already taken is not pain control. If that medicine had worked, they most likely would not be seeking care in the first place. Acute pain and chronic pain work on different pathways in the brain. The medicine that controls a patient’s day to day pain is not going to work on acute pain. It is as if a diabetic came in with a hypoglycemic attack or an epileptic person came in due to a seizure and the doctors just told them to go home and take their medicine that they had already been prescribed. Such treatment would be considered grounds for malpractice, and rightly so. Why should a person whose disease presents with pain be treated any differently?
I thank you for your time and energy in reading this letter. If you have any further questions or need more information, I would be more than happy to assist you. My contact information is at the bottom of this letter. Please contact me to let me know if for some reason this is the inappropriate department to raise concerns like this to, or if there is another place I should be contacting as well.
Sincerely,
Sara ______________
Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group
lanecountycfsfibro@yahoo.com
Footnotes:
1. CFIDS Association of America, Symptoms page (http://www.cfids.org/about-cfids/symptoms.asp)
2. Co-cure CFS and Fibromyalgia Information Exchange Forum, CFS-FAQ, Question 1.03 (http://www.cfs-news.org/faq.htm#1C). This has a list of just some of the many studies that show objective evidence of abnormalities in CFIDS patients.
3. “Understanding Pain-Pain Amplification in Fibromyalgia”, Dr. Robert Bennett, OHSU Rheumatology, Fibromyalgia Information Foundation (afterwards cited as Bennett, FIF) (http://www.myalgia.com)
4. “Fibromyalgia: Update on Mechanisms and Management”, Journal of Clinical Rheumatology: Volume 13(2)April 2007 pp 102-109
5. “Myofascial Pain due to Trigger Points”, a publication of the National Fibromyalgia Partnership
6. “The Scientific Basis for Pain in Fibromyalgia”, Bennett, FIF
7. Journal of Neuroimmunology. 2007 Aug; 188(1-2):159-66. E pub 2007 Jun 28., Macedo JA, Hesse J, Turner JD, Ammerlaan W, Gierens A, Hellhammer DH, Muller CP; Journal of Neuroimmunomodulation [2008 Feb 1;14(5):272-280]
8. Fibromyalgia Aware, National Fibromyalgia Association, April-July Vol. 16, pg. 54 “What do you mean my brain is shrinking?” Dr. Patrick Wood
9. Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses, Katrina Berne, Ph.D, Hunter House 2002, pg. 24
10. “The Scientific Basis for Pain in Fibromyalgia”, Bennett, FIF; “Seminars in Arthritis and Rheumatism”, 2007 Mar 10, Dr. M.B. Yunus; “ME/CFS compared to Fibromyalgia” (http://lindseymiddlemiss.spaces.live.com/blog/cns!B0A73769D3B5613A!829.entry)- has numerous scientific citations. It is written by the chairperson of the West Berks ME & FM Group in the UK.
11. National Fibromyalgia Association, CFIDS Association, Fibromyalgia Information Foundation. This number does not include those who have had to make significant adjustments in order to continue working (switch jobs, go to part-time, or take a lower position). It is important to note that the rate of disability is higher than the rate of people receiving benefits. Doctors are often reluctant to help with a claim of disability for a condition where there is no visible difference between a patient who can work and one who can’t; some were homemakers before their condition and so are not considered disabled in the statistics, others do not file because of their own prejudices against it, that of others, the feeling that they have sufficient income from a spouse or another source, or because their doctors have told them they will not support the claim. The most severely ill individuals may be too ill to deal with the disability process without help; help that is often denied when the condition is not visible or testable. If the person is applying for SSI rather than SSDI, it can be very difficult to find a lawyer. The more severely ill people on disability are the ones most likely to be receiving Oregon Health Plan due to decreased income and are in the situation of receiving LTD/SSDI/SSI benefits for a condition that they cannot get their insurance to cover!
12. CFIDS Association, Prevalence page (http://www.cfids.org/about-cfids/prevalence-study.asp)
13. “FM has greater impact then other conditions” (http://linzworld.wordpress.com/2007/12/02/fm-has-greater-impact-than-other-conditions/). This blog post cites the three studies done and their findings.
14. Mackenzie TB, Popkin MK: "Suicide in the medical patient." Intl J Psych in Med 17:3-22, 1987; Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993
15. Memorial Wall, National CFIDS Foundation (http://www.ncf-net.org/memorial.htm)
16. “Fibromyalgia and the Disability Dilemma”, Bennett, FIF (http://www.myalgia.com/fm%20disability%20rb.htm)
