For Members of WECAN
(The Worldwide Electronic CFIDS/ME Action Network)
WECAN existed from 1996-1999
Note: Although pseudonyms have been employed on most of these stories, I can reach the author of each of them if necessary. [Note from 2007: I am no longer in touch with anyone here. In the past decade, most have simply fallen through the cracks.]
From "Sue M."
During the process of applying for disability, I had to deal with records that ended up missing, a public attorney who "didn't believe in CFS" charged with "helping" me. My doctor at the time hadn't seen me enough to say that I was disabled, and had no interest in doing so. When the papers came for the hearing, there wasn't going to be a medical expert there at all. Add onto this that I was a student at the time I became ill, and I do not have a work history. So I gave up.
Margaret (recently denied SSDI after her employer told her that she really needed to apply for it, because he didn't think she could continue on any more, even part time):
In the words of the SSA: "Statements merely recounting the symptoms of the applicant or providing only a diagnosis will not establish a medical impairment for Social Security benefits. We must have reports documenting your objective clinical and laboratory findings."
This is the rub. We can say we have symptoms, that we can't be active without crashing, or the ache is nauseating, or the headaches blinding, but if there are no tests to prove them objectively, it's our word, which is not acceptable to SSA. Even when our doctors say they believe us, the SSA does not accept it. They want objective proof. Furthermore, physical test results don't do the trick, either. As with most everyone with the disease, most of my test results are negative or confusing. Yes, I have high serum copper levels, low amino acid levels, poor liver detox. But those don't define a disease or disability in traditional medical terms. And yes, I have orthostatic intolerance, but not NMH, so the tilt table test is useless.
And what is one to do if he/she can't afford neuropsych tests (my last set cost $950) or the HMO won't approve them? SSA encourages doctors to show them what disease we DO have, even if it's a different one than CFS. Sure, I'd be happy to show them that, if it would help, but what I have IS CFS. So what can the doctor do in this case except show that he/she's run every normal test they can think of and, guess what, it's still CFS.
So the question to SSA remains:
For those of us who do have CFS and not other verifiable illness, what objective proof will they accept?
From Ms. S:
I have had a good specialist since the late '80s; always top of the line, validating, problem-solving, top research, etc. At first, he did fill out my disability forms, but roughly five years ago he refused to continue to mark the box that says, "I certify that she is totally disabled." He wrote alongside it "I cannot certify that anyone is totally disabled." The Insurance company said I had to get him to sign it.
So he wrote them a note that said, roughly, "No one can ever say someone is disabled. For instance, there could be a person who is quadriplegic who does not consider himself disabled. It is the person who is able or not able, but a doctor cannot say "you are disabled." That is not something that I believe can be said. I can say I have studied 600 people; I have 600 patients with these symptoms and 98 percent find themselves unable to work." Then gives the whole list of conditions, symptoms, effects, etc. These are the symptoms that cause them to find themselves unable to work. Mediation has just fallen through with my insurer and we will be continuing on to court; in the meantime, I don't get paid. They used my doctor's refusal to sign the disability form as evidence that I was not disabled, and will bring that up again in court.
From a formal medical professional with CFIDS:
When I taught in medicine our residents had to fill out forms assessing disability. Occasionally they felt someone might be a malinger, but in case conferences what would come out was that in these cases they were either too sick physically or had some good reason to fear continuing with the work, for physical or PTSD (post trauma at work) reasons.
I feel that the absence of a solid core of doctors knowledgeable about the clinical and research on CFIDS to present a public media and governmental face is one of our very central problems. They could get the ear of people that we, mere patients, cannot.
So we end up going to doctors who know nothing and care less about our illness. And have media function as press release writers, waiting for a Johns Hopkins to hand them a printed statement on the results of NMH for example.
I have been disabled for over 3 years now and was just reviewed by SSD for my 3 year anniversary. I was extended(THANK GOD) but now my private disability insurer, AETNA is trying to take away my benefits. They just sent me to their own hand-picked Doctor on Sept 29, 1997 and he told both my wife and myself after a one-hour examination that he did not believe in CFIDS or fibromyalgia. He also stated that if those diseases did exist I fit all the symptoms of both diseases and agreed that I was unable to work. Aetna had a company Unival set up and pick the doctor. I have two major medical centers within 3 miles of my home, and Portland the largest city in Maine is about 35 miles away. But they set the appointment up for a doctor in Bidderford, Maine, 55 miles away. I don't drive, so my wife had to take a day off work to take me there.
They now want to set up neuro psychological testing to see if my problems are organic or if I suffer from depression. The full copy of the testing from the independent medical examiner is going to be faxed to my primary care doctor today I believe and hopefully I will be able to get a copy of it. I'm sorry if I ramble or don't make sense at times but I am scared I will lose my benefits and angry at what Aetna is trying to do to me.
I wouldn't feel so bad if I was just able to make an income again. My girlfriend and I have been together for ten years now, we probably would have been married by now, but I've been unemployed now for two years and sickish for three. When we got out of college, my credit was shot but hers was just ok. So we put all our monies under her name and now we have platinum credit - and not any money left whatsoever even to pay the weekly bills - zero. It's gotten to the point where in a few months her credit will be affected too....that is what I call pulling others down with me. It'll be a year before I can (if I'm lucky) collect ssdi. That's approx. 8 months more than I can afford. If it were just me being affected, I wouldn't have to be considering the more desperate options to income enhancement. I curse god regularly nowdays.
Catherine's story (abridged):
The path which lead me to this point of collision between notion and actuality began with my purchase of long term disability coverage. The decision to insure against an impairment that prevented or restricted my ability to earn a living was first made years ago when my daughter was born.
Although I fell into parenthood with an artless joy, my child's father did not. He was unable to make space in his life for the responsibilities of fatherhood, making my daughter one of the growing number of fatherless children in this country. So, faced with the challenge of a job meant for two, disability coverage seemed within the bounds of good judgment. Beyond the initial decision to carry the coverage, I gave the matter of disability insurance little thought. Instead, my head was full up with things like balancing career goals and work schedules against nurturing and raising a child.
Not until my daughter was a teenager did the protection afforded by disability insurance become important to me. It was then that I was diagnosed with an immune disorder called Chronic Fatigue Immune Dysfunction Syndrome. My initial response to the illness was a head-on, no holds barred attack. But, over months, the illness got in its punches until I could no longer perform my job duties. For awhile, my dealings with the insurance company went along pretty much as I expected. I submitted a claim for disability benefits, the insurance company appropriately reviewed the claim, and then, after finding no cause not to pay what was due under the policy, the insurance company began paying me a monthly benefit.
[However, the insurance company soon made it clear they did not intend to continue when short-term disability shifted to long-term.] On more than a single occasion a representative of the insurance company attempted to shame me into good health by saying that drawing disability benefits set a poor example for my daughter during her impressionable adolescent years. The remark, which was intended to suggest that I had become some sort of social drone, gave no weight to the fact that I had climbed the corporate ladder hand-over-hand to the position of senior vice president of a national firm. Even more direct was another representative who repeatedly tried frightening me with stories about other claimants whose lives had been devastated by an unexpected termination of their benefits. In addition, the insurance company hired a secret surveillance company to observe and record my every move. Yet all this was not the worst of it.
The worst of it was when the insurance company reclassified the cause of my disability from a physical illness to a mental one. Then, based on a limitation contained in the policy for mental conditions, it terminated my benefits. I appealed the decision. And then, I waited. Eighteen months passed-- an unconscionable length of time!--before I received an answer to my appeal. Once again, the insurance company informed me it was sticking to its decision to reclassify my disability and terminate my benefits.
I thought it was then my right to bring a lawsuit. A law firm with which I had enjoyed a good business relationship referred me to an attorney specializing in litigation, and I immediately arranged for a meeting. After listening carefully to my tale of wrongdoing, the attorney advised me that, although the insurance company had not dealt with me fairly, any claim for damages was preempted by a 1974 federal law called The Employee Retirement Income Security Act (ERISA), which regulates most group policies purchased through an employer or organization.
The real-life effect of ERISA is this: a claimant whose policy is regulated by ERISA is [effectively] blocked by law from gaining one nickel more than the amount of the benefit, an amount which is likely to be greatly reduced by the expense of litigation. And, an insurance company embarking on a reprehensible course of conduct is not subject to risk beyond the amount of the benefit, making the downside for the insurance company limited and predictable.
After explaining to me in painful detail what I was up against, the attorney declined my case. Not because I didn't have a legally defensible position but because my policy came under ERISA. Before ERISA, the usual practice was for lawyers to represent claimants in actions like mine for a percentage of the settlement, including damages. The contingency arrangement provided the average citizen a means to stand up against deep pocket organizations. But, by making damage settlements impossible to obtain, ERISA has had the effect of turning justice into a corporate property.
Once I had become resolved to the hard cold facts of the situation, I went ahead and sought out an attorney possessing the skill and knowledge required to litigate an ERISA case. All I could offer the attorney was a percentage of my benefits if we won the case.
Throughout the legal process, I witnessed a blatant disregard on the part of the insurance company for the financial pressure and emotional distress its bad faith actions had caused. Time and again, I sat helpless as the insurance company failed to honor agreements, knowing the very risks insured against made it clear that if the claim were not satisfied I would suffer greatly. Eventually, my attorney gained an agreement to reinstate my benefits without going to trial. But, even then, the insurance company delayed payment.
So, having got back again the benefits rightfully due me, do I feel like I've won? Not in the least! There was never any way for me to win. During the period of time that I did not receive benefits, my savings were exhausted, my credit damaged, I faced eviction from my home, and I lost my health insurance because I could not afford to keep the premiums current. And, though my benefits may have been reinstated, the amount has been substantially reduced by the expense of litigation.
[Jane is not online; her story was told to me by a friend who has computer access.]
Around two years after having gotten CFIDS, my insurance carrier sent Jane a notice that she had to see an independent medical examiner, a psychologist.
Jane is very poor. She sees a doctor only rarely because she doesn't have medical insurance. She didn't have a lawyer, and couldn't find one quickly enough to get help with the question of whether she should see this IME or not.
It has been almost 2 months since that appointment, and her disability carrier still refuses to tell her what the outcome of that visit was -- are they going to discontinue her benefits or not? She found a CFIDS-expert MD, who is charging her $200 for a supporting letter to her carrier. She found an expensive lawyer who appears to know what he is doing.
She can't afford any of this! Her plan is to accept several of the credit-card offers she frequently gets, run up big balances, and then declare bankruptcy.
She is in constant, terrible anxiety.
When my 2-year anniversary with UNUM was approaching, my nice claims examiner inexplicably disappeared, and in her place I got one who was cold, rude and uncooperative. She sent me a 'routine' release form to sign. I've lost a lot of brain power since getting sick, but still had enough to read it and realize that it was far, far broader than was needed for them to determine whether I was still ill.
It took me several months to understand what ERISA meant to my case, and to find a competent ERISA lawyer. Before that, they temporarily shut off my benefits because I refused to sign their release. A lawyer-friend, not understanding the ERISA issue, wrote an alternative release for me to send them, and they refused to accept it.
When I finally found an ERISA lawyer who I could afford, she also wrote a release for me to sign, and sent it to them with a threat that I would sue in federal court if they refused to accept it. They accepted it, but I was now alerted to the danger and spent several thousand dollars on medical specialists, medical tests, and neuropsychological tests to strengthen my case.
Even harder, in terrible grief and anxiety, I tried to plan how I would live if they cut me off and I had to sue them. It has been 2 1/2 years since then, but the anxiety has not gone away. I still fear that they will videotape me (in my power scooter) having lunch with a friend, or walking a few steps to my next-door neighbor's house; and that they will twist this into something that would support their claim that I am 'recovered.' Or that they will interview my doctor and then (as they have with other claimants) lie about what he said.
UNUM's behavior has made my illness worse.
Alice also writes:
It took 2 1/2 years for Social Security to approve my claim for benefits. One of the denials was based on the fact that I could stand up and move my arms and legs! This must be boilerplate denial language for them, because a friend of mine recently was denied for the same reason. I had to hire a lawyer and pay him $4000 out of my benefits before my claim was approved. My lawyer said that there wasn't one negative thing in my entire Social Security file! Attention needs to be paid to the behavior of HMO's. My Medicare HMO denied me access to a real CFIDS specialist. The so-called specialist they sent me to (only after an appeal) made me sicker and then acknowledged that she knew nothing about my disease. I had suspected it, but felt I had to at least try to do things their way if I ever hoped to win an appeal. I did win, but it took an entire year and an appeal all the way to Medicare. Now they have to send me to my specialist, but they reserve the right to refuse to pay for tests (!) and treatments. So they send me to a specialist but have the power to refuse to let him take care of me!
Most people are not fighters and don't have the skill to fight... these should not be pre-conditions for appropriate medical care! And for those of us who can fight, we shouldn't have to wear ourselves out, neglecting everything else in our circumscribed lives, in order to get that care.
I have extensive documentation of both the UNUM and the HMO fights, and would be happy to provide it if it would be of assistance to this committee.
(You can reach Alice through me - Mary Schweitzer.)
I need to take tests to show SSDI that I am disabled, but my HMO won't order them (my doctor already knows the problem!) and I can't afford to get them done on my own. So, other than my t-cell ratio, and some minor blood abnormalities (which they don't consider as such), all tests are normal. There are no tests which say I'm disabled. So, I would need money (for tests) to possibly get money (from SSDI). How fair is that?
- why is there no national governmental agency that oversees abuse of power and conflict of interest in LTD carriers? (e.g. I had a friend who worked in the Justice Dept ADA litigators, and she told me that they'd wanted so badly to take on the insurance industry for their practices, but the Justice Dept was understaffed and lacked the power to take them on. If the US GOVERNMENT doesn't have to power, there's something seriously wrong!)
- Why do ERISA laws protect the LTD carriers -- it just results in the insurance industry causing the judicial system to be flooding with LTD litigation because the insurers have no incentive to pay without being sued. They have everything to win by delaying and denying until they are sued and forced to pay (since, under group policies, people can't sue for interest or damages... and their delaying/denying tactics will make many people sicker, so they'll either get too sick to pursue it, or they'll just give up).
- This falls under conflict of interest -- how come the LTD carrier can harass my doctors for long letters, and then turn around and immediately refute the letters, diagnose a patient that they've never seen, and write a letter to the doctor throwing out the doctor's diagnosis (with no supporting evidence), announcing their diagnosis and demanding a rebuttal within one week (and not having a fax or phone number in the letterhead of within the text of the letter)???
- The conflict of interest and standard operating practices of the LTD industry make the patient sicker. The war of attrition, trying to get incredibly detailed letters and documentation -- repeatedly -- from busy doctors, the loss of income and threat of losing benefits once someone is actually collecting, being followed by private investigators, etc. etc. -- all these things are so stressful (on top of the stress of being unable to do ones profession and take care of oneself) will exacerbate many physical illnesses. If they just paid valid claims without the war of attrition, then we'd have a far better chance of getting better and getting on with our lives, and eventually getting back to work! (DO they really think most people want to give up their careers to lay on their couch?!)
- What gives the LTD companies the right to diagnose patients they've never seen and through out well-documented diagnosis of the treating physician? What gives them the right to harass these doctors for information and then ignore it?
PWC 8 years
Disabled, twice denied by SS
No insurance and no more savings funds to buy the drugs and supplements prescribed by my physician that might enable me to function better, maybe even enough to return to some sort of job part-time even if I can't return to my old $80,000/year 50-60 hour/week job.
I was sick 2 1/2 years before I was diagnosed. It was not because I didn't meet the CDC criteria. It was because nothing showed up on lab tests except mono and an elevated RA factor. The first doctor gave me hormones, the second one an antidepressant, the third - another antidepressant, the fourth - an antidepressant, the fifth -- antidepressant and buspar and an NSAID. If I haven't left anyone out, it was the sixth doctor who diagnosed Fibromyalgia. I knew long ago that I met the criteria for CFIDS, but no one has been willing to diagnose that. A couple agreed I seemed to meet the CDC criteria, but refused to consider diagnosing it.
My worst period was when I kept getting fired from jobs because of too much time off sick, while the doctors kept saying my tests were normal, so they couldn't help me. I kept trying to work and finally, I collapsed physically and emotionally. The following six months I spent on the recliner or the couch. For 5 or 6 months, I didn't sleep more than four hours each 2-3 day period. I was in horrible pain most of the time, especially when I laid in bed. I couldn't accept social invitations, and no one came to see me because I was no fun. The only thing that stayed constant was this horrible fear. I never stopped wondering what was wrong with me. I felt like there was no help and I was going to sit in that recliner on my heating pad forever, literally. I have not been able to return to work so we are facing bankruptcy except that we don't have the money to pay to file it. My current insurance company has refused to pay for anything because they insist I have a pre-existing condition! There is no support from doctors, nurses or the community as there is for diabetics, AIDS patients, MS patients, etc. Except for my support group on the internet, I feel totally alone with my disease.
How many people must suffer a withering life, and how many people must die before our country will look at us, hear us and help? ....the answer, my friend, is blowing in the wind.
Dr. Judy Morris' story:
I am an Emergency Doctor diagnosed by a reputable internist with Chronic Fatigue and Immune Dysfunction Syndrome. I can no longer function reliably as an ER doctor due to exhaustion, headaches, and cognitive deficits (concentration, memory, speech and thinking) which are worsened by stress and exposure to germs and viruses. I have policies with UNUM, both individually and through my employer that are "Specialty Specific." UNUM is still deducting premiums from my bank account while they stonewall and force me to file a lawsuit.
No attempt was made by UNUM to negotiate with me or to try to work with my employer in any way. I was subjected to surveillance and videotaping by Private Investigators for at least 3 weeks that I know of (UNUM sent me the tapes). UNUM's doctors, who are also executives at UNUM, concluded that since I can drive my car I am not disabled by CFIDS. They also did background checks on some of my friends and family members and my psychologist. UNUM's doctors spoke with my doctors by phone and then wrote up a version of the conversation claiming my doctors told them I had psychiatric problems besides the reactive depression that goes along with having a chronic illness. My doctors have written in objections to these claims and reiterated that my problem is physical AND disabling on multiple occasions. UNUM either ignores these letters or issues long-winded responses trying to "educate" my doctors that it's all in my head. No one at UNUM ever told me what kind of test or evaluation it would take to prove my claim. There is a reason for that as well. Once the case gets to court, some laws give them the right to exclude any additional information submitted after the claim was denied, so it is to their benefit to have very little documentation in the record up until the time they deny the claim. On my own, I have obtained two second opinions and some confirmatory laboratory evaluations proving that my immune system is substandard. One of their doctors does not even have a medical license in Maine (UNUM's corporate headquarters, where he is stationed).
I have written numerous letters to the Massachusetts Insurance Commission. They send my complaints to UNUM who responds with a letter that basically states they have "investigated my claim" and come to a "reasonable conclusion" and they are "sorry" that I am unhappy with their decision. The insurance commission accepts these letters and closes their "investigation."
UNUM has armies of lawyers to keep claimants and their lawyers harassed and intimidated for years. UNUM refuses to recognize standard medical definitions of disability and would have us believe that people with chronic illnesses can never be happy, enjoy themselves, participate in leisure activities, or even drive (even if their contracts are occupation specific - in fact the more the claim value, the worse the stonewalling and harassment. They have refused to pay people who were approved by the more stringent government regulations for Social Security Disability that require a person to be unable to reliably perform any gainful employment. Then this fact is not allowed to be used by the claimant in their lawsuits against UNUM.
People who thought they were well protected in the event of disability are having to file for bankruptcy, lose their homes, and their health is most definitely suffering adversely from dealing with UNUM.
Judy Morris, MD
This last is in the form of a series of email notes from my friend "Sara". She has a lot of trouble putting anything together in a coherent form., so she couldn't really "tell" her story herself. I have patched it together for her. I have known "Sara" for over two years now. She was once a rising stockbroker in Manhatten with a $10 million portfolio; bought a beautiful condo apartment in Brooklyn, was written up in Fortune Magazine and given an award by the YWCA as a rising young female executive. She has been disabled with CFIDS now for five years. She lost her arbitration over being recompensed for her portfolio when she had to leave the company; and is barely making ends meet on Social Security and private payments from UNUM.
Here are some of the notes she has sent me in the past weeks. I can put you in touch with her if you would like.
Yesterday I got called by UNUM that they are to set up an IME appt. for me with him to go over "proactive behavior treatment", "goal settings". To clarify "cognitive deficits" and to go over "treatment modalities." If they cut off my disability, the bank will foreclose on my apt., sell my furniture and clothes, and give the money to the creditors. I am trying desperately not to have this happen.
My psychiatrist has already covered this recently with them, and they even had him go into the report initially sent in by a Neuro-psychologist who is the official named by the State of NY to test doctors, so he is well known and well respected, with respect to finding me cognitively deficient, a very long report which cost me out of pocket $2000 (not the same story today-am filing for bankruptcy Friday, papers went in about 10 days ago). The INs. Co. and Soc. Sec. found it acceptable then. Why are they digging into it now?
The "lawyer" who was supposedly representing me at a lower fee as my "friend" has not returned my calls in 5 days, begging him to call me. So this Friday, with no preparation, and probably without a lawyer/friend, I am going to bankruptcy court by myself. I am scared.
First of 3 IME appts. this Thurs. Then next Thurs. and a week from the next Monday. Any ways of getting me through this time would be appreciated. Like, "Life exists outside of disability, bankruptcy, losing everything you gave up the rest of your life for by working so hard and so long..." Not too self-pitying, no?
I just got numbers together for my bankruptcy hearing and I just cannot do it anymore. I continually reversed numbers, couldn't add right, got confused, etc. I can't do this. What do I do?
The doctor says I have "ischemic damage" to my blood vessels in my brain meaning that they are getting smaller-- hardening of the arteries in my brain due to not enough blood/oxygen getting to it. I am too young for this to be due to the aging process. My doctor says it's consistent with my CFIDS, but the UNUM doctor says it's just normal aging.
Called the lawyer you suggested. He did chat with me and sounded knowledgeable, but would not agree to a monthly payment schedule. He wants $2500 up front. As soon as he found out I have filed for bankruptcy, he became more concerned about receiving payment BEFORE he would work on the case. I guess I can understand that. He seems very good. But I don't know where I can get the money.
As for me, I have been a wreck--crying all the time, unable to have conversations, filing for bankruptcy second time around this week or next (took me 3 hours to type 2 pages) and preparing for my IME by UNUM in a couple of weeks. I am terrified, have no money, have pledge to pay my bankruptcy creditors $350 per month--Don't know where in hell that will come from - And the little things: Like going out for dinner and not being able to share a salad with someone, because I am keeping my dinners down to $8. Quite a switch from a few years ago when buying dinner for the whole table wouldn't have put a dent in my budget Mary, it's so hard.
And UNUM can cut off my disability benefits if they pay an IME enough to call my illness "psychiatric" then we go to court, and I eventually win, because my case is voluminous and air tight. But who pays for my 1st mortgage, 2nd mortgage, and maintenance to my co-op? But if I don't pay, they will take everything, not just the house. How will I pay for food for "Abby" [her service dog] and me? Or small necessities like toothpaste and shampoo? Or therapy and medication? My health benefits get cut off too if that happens. And they could stretch it out for 6 months to a year. Or my $350 to my creditors?
Lots of other disability problems, disputing bills from my co-op because they keep calling a leak downstairs as coming from my apt. and have fixed various parts of both bathrooms now 6 times, trying to charge me for it each time. Had a two hour meeting with the Board last night, and cried through 3/4 of it. I'm tired of the dirty looks from other people who think I'm immoral because I am declaring bankruptcy, who don't know how ill I am ("You don't look sick!") Just got back from the bankruptcy meeting. They say I spend too much money. They said that "Abby" is not a service dog, but a pet, and that it's a "frill" for me to pay for her food and vet bills. They say if they take my assets they can sell her too. What am I going to do?
I ended with "Sara's" story, because it is going on right now. I do not know how this story will end, but I do know that this must stop. This woman paid her dues. She worked hard. She would love nothing better than to be productive again, but she is just too ill. It is killing her to have lost her career. I do not know what she is going to do if she loses the last vestiges of her former life - her home, her furniture, her clothes. I can't imagine what they think she can do with her dog. This woman has enough to put up with in terms of her severe illness; must she also suffer from such degradation as well?
I wanted "Sara" to come to Washington - it's just a couple more hours on Amtrak for her, and I could have met her when I boarded the train in Washington. But she could not do it; she is too ill.
So here they are, with their testimony, the only way they can reach you.
Thank you for allowing me to speak for them, and to be their messenger.
Return to Text, CFSCC Testimony October 22, 1997
Go to Appendix A: How Bad is Bad?
Go to Appendix B: The Need for Diagnostic Criteria for before "The Crash"
Go to Appendix D: Three PWCs
Go to the Index of Testimony presented by Mary Schweitzer to the CFSCC
Return to the CFIDS/ME Information Page