Comments on Disability / Patient Rights by:
Wolf Britain, Poet and Activist
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Unless Otherwise Noted, All Material Copyright © 1998-2004 in the U.S.A. and Internationally by Wolf Britain. All Rights Reserved.
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Unless Otherwise Noted, All Material Copyright © 1998-2004 in the U.S.A. and Internationally by Wolf Britain. All Rights Reserved.
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Yahoo! Chat
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Yahoo! Shopping
Unless Otherwise Noted, All Material Copyright © 1998-2004 in the U.S.A. and Internationally by Wolf Britain. All Rights Reserved.
Yahoo!
Yahoo! Chat
Yahoo! Games
Yahoo! Auctions
Yahoo! Finance
Yahoo! Travel
Yahoo! Shopping
Unless Otherwise Noted, All Material Copyright © 1998-2004 in the U.S.A. and Internationally by Wolf Britain. All Rights Reserved.
Prescript: I'm looking for someone to go 50/50 with me and move to either Ecuador, Costa Rica, Belize, Guatemala, or Mexico where we can make a very low income go much further with a lower cost, and higher standard, of living (than living in the States on such a low income). This includes an only income of Social Security Disability (SSDI) and/or Retirement benefits. The Social Security Administration most definitely DOES allow SSDI and/or Retirement benefits, but not Supplemental Security Income (SSI) benefits, to be sent to recipients in most other countries! There are many books about moving and living abroad available at the public library and/or at Amazon.com . Naturally, I realize we would probably have to spend some time getting to know eachother, and finding out if we're compatible, before moving abroad together. We could even have our own separate "spaces" by choosing to rent or purchase a house or apartment with separate quarters, and still save considerable money in monthly costs compared to living in the States on the same income. If you might be interested, want to ask me some questions, and/or want to discuss it, please e-mail me at the address below.
CONTENTS OF THIS PAGE
(Click on the link to go to that part of the page):
Two Major Clauses Of The CDC's CFIDS Diagnostic
Criteria Require Correction Or Eradication
A Letter To An Attorney-Friend About
Some Social Security Inequities
A Letter To Friends And Family About How To, And How Not To,
React Towards And Treat Disabled Relatives And Friends
An Open Letter Seeking An Appropriate Physician Who Completely
Believes That CFIDS Is Without A Doubt A Physical Illness, And
Who Treats It Fully And Properly
An E-Mail Message To Dateline NBC Regarding
Their Episode On Fibromyalgia Which Aired At
10:00 P.M. (P.S.T.) On Monday, January 3, 2000
TWO MAJOR CLAUSES OF THE CDC's CFIDS DIAGNOSTIC
CRITERIA REQUIRE CORRECTION OR ERADICATION
The Centers for Disease Control (CDC) put in place a criteria that doctors nationwide are required to follow in supposedly determining whether patients can be accurately and legally diagnosed as being persons afflicted with the illness known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Two main clauses of that criteria are blatantly incorrect, and must be entirely removed from that criteria, or be changed, in order to correctly reflect and determine that all patients who are truly afflicted with CFIDS are always diagnosed as such. Those two clauses are as follows:
The first clause in question falsely claims that adult patients who truly meet the criteria for being diagnosed as suffering from CFIDS cannot have had the illness their entire lives. Yet, it is commonly recognized by CFIDS specialists and researchers that the illness has supposedly been in existence for at least one hundred years, and that children are one of the primary groups most afflicted with it. Therefore, it is highly possible for many adult CFIDS patients to have suffered from the illness from their childhood into adulthood, and many have been afflicted with CFIDS lifelong.
The second of the two grossly inaccurate CDC criteria falsely asserts that in order for patients to be correctly diagnosed with CFIDS, they allegedly cannot have had a prior diagnosis of Major Depressive Disorder (MDD). But many CFIDS patients suffer from MDD, and were wrongly given the primary diagnosis of MDD before finally reaching their correct CFIDS diagnosis, while all along they were also suffering from secondary MDD resulting from the CFIDS; and this a very common occurrence because of the ignorance regarding CFIDS prevalent among the majority of physicians to this day.
Persons with CFIDS (PWC's), and the organizations which purport to represent their interests, must take a very strong stand to see to it that the CDC alters their criteria so it accurately and completely reflects in all clauses thereof the correct determinants for which patients do and do not truly suffer from CFIDS. No doubt, as a result of these absurd inaccuracies in the CDC criteria, too many patients who should be diagnosed with CFIDS are not; and, due to this miscarriage, their serious illness is continually exacerbated by misdiagnosis and lack of proper treatment. Please do whatever you can to help correct this state of affairs.
[Copyright (c) 1998 in the U.S.A. and Internationally by S. Wolf Britain. All rights are reserved.]
A LETTER TO AN ATTORNEY-FRIEND ABOUT
SOME SOCIAL SECURITY INEQUITIES
Hi, Kevin!
On an unrelated issue, I just had a "brainstorm", and I have to write it down and share it with you before I forget it; because, if I don't, I will forget it due to my short-term memory problems from my disabilities. It has to do with the "Pickle Amendment" that was passed by Congress, what, about 15-years ago, which instituted the SSA regulations that determine how much benefits those disabled people who are granted disability benefits get. Because I, and many other younger people, did not pay in very much in Social Security tax, we get much less in benefits; and it dawned on me that it might be able to be argued that such is discrimination on the basis of age, because age has so much to do with how long we've been working and how much we've paid in to the retirement/disability system. Perhaps that legal avenue has already been explored; I don't know; but, if it hasn't, it seems like an excellent cause for the ACLU or somebody else to sue the Federal Government and the SSA for. If nothing else, what the government and the SSA should have to do, since Social Security is close to bankruptcy, is balance out the payments of all those on disability; i.e., lower those who have been on SSDI for 15 or more years, and who received very high (and unfairly because we no longer receive them) cost-of-living increases, down to, say, the poverty-level of about $900.00 per month, and raise those who are receiving less than that up to $900.00.
I don't think how long one has been on disability should give them any priority on how much they receive, because it is an inequitable imbalance; and they probably paid in very close to just as little before they were put on SSDI. It is unequal "justice" to allow this inequity to go on, and to allow those living on not much more than half of the poverty level, such as myself, to have to continue to attempt to survive on such a low income when we are just as legitimately disabled. After all, this country is supposed to be about "equal justice" under the law; therefore, to allow an inequity such as this to continue, is to violate that right to equal justice.
If this issue hasn't been thought of, and/or the prospects of litigating it and achieving a successful outcome have not been explored, maybe you could attempt to find someone, or some organization, to "take it on"? I am not just thinking of myself; I am thinking of all of the similarly-situated Americans who are not only suffering from their own specific disabilities, but are also suffering from the exacerbation of their illness(es) by having to try to survive on below poverty level incomes. Why should they suffer further for being disabled? It appears that "we", the disabled, are being punished for being so. I have a neighbor who, because he started receiving SSDI 25-years ago, and the cost-of-living increases during the Reagan years were extremely high, now receives about $1,200.00 per month, though it could be argued that he's not any more disabled than I am; and he probably started receiving much less than I received when I first started receiving SSDI benefits. This isn't right!
I receive approximately half, or less than half, of what my neighbor receives, and at a time when the cost-of-living is very high! What is wrong with this "picture"?!?!?! And I'm just one of many, many examples of those suffering on too low incomes!
On top of this, I just remembered that the Pickle Amendment also discriminates against the children of the disabled who were unable to pay more S.S. tax into the "coffers", and punishes them for being the children of disabled individuals. Again I use myself as an example, if I had paid more in, if I'd been older when I was determined to be legitimately disabled and approved for receiving benefits, my daughter would have received about $250.00 a month in benefits because her biological-father is disabled; and she'd be continuing to receive such a check until 18 years of age without college, or her 22nd birthday if she attended college; but because I have allegedly been paid the "family maximum", she receives nothing, not even Medicare! I contacted my Congresswoman, Diane Feinstein, during the election year 1994, and she promised her San Francisco office would thoroughly investigate the matter and get back to me; I waited patiently for several months, and then I wrote two (2) letters about two (2) months apart, both to her Sacramento and her S.F. offices; but no one answered my letters, though they were very tactful. So, I don't have much faith in writing to my representatives about either of these issues!
Is there anything you can do to encourage a legal struggle to attempt to correct these inequities? I truly hope something can be done for the sake of all low-income disabled people. It is a travesty of justice that must not be allowed to continue! Perhaps these issues are what I should have written Spence Moriarity & Schuster about, instead of what I did?! But I doubt they're interested in this type of case.
Thank you,
Wolf
[Copyright (c) 1998 in the U.S.A. and Internationally by S. Wolf Britain. All rights are reserved.]
A LETTER TO FRIENDS AND FAMILY ABOUT HOW TO, AND HOW NOT TO, REACT TOWARDS AND TREAT DISABLED RELATIVES AND FRIENDS
Dear Brothers and Sisters,
I feel like I don't have a true friend in the entire world. People constantly sit in shallow, unrighteous judgment of me, and others'; when no one has any right to sit in unrighteous judgment of others'.
Everybody's so caught up in what they believe they have to do, and they're so self-centered and selfish, that they don't have time to really care about eachother. If someone is down and out, sick, or whatever, most people don't want to deal with them; and they're avoided like the plague. Example: When I was homeless and "living" a few miles from you.
You, and others', don't want to believe that I'm really physically ill. You judge that it's just a cop out and crutch that I've convinced myself of in order to have just another way to cop out, like I've allegedly been doing all of my life. You don't want to hear about my illness; you don't ask me how I'm doing or feeling; and you won't even read one of the many books on the subject of my disease. How do you suppose all of this makes me feel? I feel like I'm all alone, and like no one in the whole world cares about me. I struggle against incredible odds to try to be positive, and remain a relatively decent person; but nobody cares until you become a hurtful, evil person; then they just dump you out of sight, or kill you.
People simply want to keep burying their head's in the sand. They want to "write people off" who are real. They don't want to be reminded that there's all of this incredible amount of suffering going on all around them all of the time. They want to go on living their selfish, self-centered lives without reality intruding upon them. They disown family and friends who don't live just like they do; and they rationalize that it is those people who are more "real" than most that are supposedly the ones' who are "screwed up", not themselves. The majority lives in a fantasy world, so they must be "right". Most people supposedly can't be wrong; and through all of this, many people are suffering, right along the edges of our collective peripheral visions'.
Who cares? Very few. Most of us simply go on parroting the clichés and "maxims" of the majority, following along, believing what most people believe, because it's easier and less painful than facing that we were put on this Earth to care for one another, through thick and thin, easy and painful, for worse or for better, and to go out and help the unfortunate. No wonder so many people "off" themselves when they see through this collective miasma of greed, sheep-mentality and selfishness. This world is so "sick" that there's little hope of recovering it. "The People" are a huge mass of cattle "going along" to the slaughter, not caring, just fighting to get their own piece of the fodder, and warily "eyeing" their dying brothers.
".....(D)eliver us from (ALL) evil....."! Deliver us from self-centeredness! Deliver us from denial! Deliver us from ignorance! Have mercy on our souls'! Free us from being followers! Wake us up! Open our eyes! Help us to overcome our apathy, lethargy, complacency, and complicity! Help us to see the light! Have mercy on our hardness of hearts'! Free us from our addiction(s) to sex and so-called "love"! Let us find True Love and unselfishness! Let us find self-sacrifice and caring! Let us exercise our duty to care for one another! Let us really live for others'! Have mercy on our collective discontent! Free us from our selves! We CAN experience True Peace! We ARE our brothers' keepers! We MUST overcome!
Please be truly compassionate towards me, and all people, and show me that you are truly-loving family members and/or friends; and I will be exceedingly grateful! Thank you for all of your consideration and "kindness-in-action"!
Love, Your Brother and/or Friend
[Copyright (c) 1998 in the U.S.A. and Internationally by S. Wolf Britain. All rights are reserved.]
Continued below:
Continued:
MORE OF MY COMMENTS ON DISABILITY AND PATIENT RIGHTS, AND ON MYALGIC ENCEPHALOMYELITIS (ME), CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME (CFIDS), AND FIBROMYALGIA SYNDROME (FMS), ISSUES:
Hi, my name is Wolf Britain. I am a fully disabled Person with CFIDS (PWC). I read a medical journal article recently on "Therapeutic Effects of Oral NADH on the Symptoms of Patients with Chronic Fatigue Syndrome (aka CFIDS)" from the Annals of Allergy, Asthma, and Immunology, February, 1999, Volume 82, Number 2. At the end of the article it said, "The finding that a high incidence of allergies (21/26) was observed in our study group (of CFIDS patients) is significant since it is known that a worsening of the disease often can be attributed to untreated allergic disease. ALLERGISTS / IMMUNOLOGISTS THEREFORE ARE PERHAPS THE BEST SUITED PHYSICIANS TO DIAGNOSE AND MANAGE PATIENTS WITH CFS (CFIDS), SINCE THE PATHOGENESIS INVOLVES IMMUNE DYSFUNCTION AND THE INTERPLAY OF OTHER ENVIRONMENTAL FACTORS AND THE CAREFUL MANAGEMENT OF ALLERGIC DISEASE CAN LEAD TO STRIKING IMPROVEMENT, AND THEREFORE ARE UNIQUELY POISED TO EVALUATE AND MANAGE PATIENTS WITH CFS (CFIDS). The use of NADH may thus be a valuable adjunctive therapy in the management of CFS and the results of the present study suggest that further clinical trials be performed to establish its efficacy in this clinically perplexing disorder." (Id.)
In 'big-city' areas, doctors who realize that the CDC and NIH recognize CFIDS as a physiological illness, believe fully in the existence of the illness, and who treat it, are usually readily available; but I have had extremely bad experience with physicians in this area regarding the disease; therefore, I am extremely leery of giving another doctor a chance by setting up (an) appointment(s) with those that I haven't seen or spoken with before. As is written in much of the CFIDS literature, there's commonly a "knee-jerk" reaction of physicians to CFIDS, where they see the patient as healthy and, therefore, allegedly suffering from psychiatric illness; though CFIDS has long (15 years) not been seen that way.
It is commonly written in the extensive amount of CFIDS literature that CFIDS patients often 'look' healthy; and the federal government recognizes that CFIDS patients are truly physically ill. I am looking for a doctor who will not judge me on my outward appearance, and who, if he or she doesn't already know much about CFIDS, will be open to me as a patient helping to educate them on the subject, because we PWC's commonly study the facts on CFIDS extensively. It is also quite often documented in CFIDS literature that we attempt to bring notes and articles regarding our condition with us to appointments to share with our physicians. Due to our short-term memory deficits caused by the illness, we have to write things down that we wish to discuss with our doctors; because, otherwise, we WILL forget what to talk with them about, and fail to inform them thoroughly of our latest symptoms and/or responses to treatment(s). It is also commonly the experience of PWC's that we are treated by most doctors as if we are supposedly malingerers, hypochondriacs, and suffer from psychosomatic illness(es), and/or depression, only; though, as already said, it is commonly recognized by the federal government, CFIDS specialists, and CFIDS researchers, of which there are a great many, that we are usually none of those things. Because of this "knee-jerk" reaction, and erroneous response, of most physicians to CFIDS patients, our illness and/or many of our symptoms are often exacerbated thereby. Also, being intelligent does not preclude PWC's from legitimately being diagnosed with, and suffering from, CFIDS, etc.
It is very sad, and highly unfortunate, that there appears to be no CFIDS specialist(s) in the Rogue Valley. Many PWC's have found, and are regularly seeing, Naturopathic Doctors (N.D.'s), such as I am, Homeopathists, Chiropractors, Rheumatologists (for concurrent Fibromyalgia Syndrome [FMS] and Osteoarthritus, as I have also been diagnosed with), Physical Therapists, Acupuncturists, Massage Therapists, Nurse Practitioners, etcetera; but those of us who are regularly seeing allopathic physicians, other than such doctors as Rheumatologists, are usually not receiving the level of respect and thorough treatment we should be able to expect, even from the latter. It is also commonly recorded in CFIDS literature that PWC's have little choice but to go from physician to physician trying to find a sympathetic doctor who knows much, if anything, about the illness, and who fully treats PWC's, especially in such areas as the Rogue Valley, or rarely see any physician and receive any treatment at all.
You have a great opportunity here to become the preeminent CFIDS specialist in this Valley, with either or both cash-paying and Medicare/Medicaid, if you accept the latter, patients. There are several highly respected, motivated, caring, higly-experienced and knowledgeable CFIDS specialists across this country who would be happy to consult with you and help you become abreast of the extensive, complicated information on this world-wide pandemic illness, if you are not such already. I'd recommend such names as Jacob Teitelbaum, M.D., Jay A. Goldstein, M.D., Bell, Peterson (M.D.'s), et al. I am not asking that you immediately get so thoroughly involved in CFIDS. All I ask is an open mind. There are many PWC/FMS patients in this extended area who are badly in need of a CFIDS specialist.
Though I, specifically, do not suffer from CFIDS as badly as many, I have very little physical and cognitive energy; and I barely get through each day. I suffer from most of the extensive list of CFIDS symptoms, at least off and on, and the minimum amount of routine activity(ies) exhausts me to the point where I am physically and cognitively 'drained'. I will be more specific if you respond appropriately to this message, and when I fill out your patient questionnaire(s) upon my first appointment. I will only provide my medical record(s) to you based on that first condition, and how I feel about you after having a chance to meet and talk with you face to face.
As I told your nurse and/or receptionist, I have typically had a very bad experience with one M.D. in this area who, without any legitimately corroborating evidence, having seen me only once, without having any of, and without having thoroughly familiarizing himself with, my medical record(s), and judging solely on outward appearance, attempted to make trouble for me and my standing with Social Security Disability. The CFIDS literature states that in most cases, even fully disabled PWC's should get as much exercise as we can tolerate; but, when we do, we are too often judged by "treating" physicians as alleged "frauds", "scammers", "lazy", "able to work" when we are not, etc. We become so completely discouraged, depressed and anxiety-ridden, as unjustifiably caused by allopathic doctors, that we understandably withdraw from them, and lack trust in, and are leery of, them. We (I am) look(ing) for physicians that we (I) can be happy and comfortable with, encouraged by (in the sense of hopefulness), treated thoroughly by AS AN EQUAL, without an attitude of superiority and detachment, those who don't feel threatened by the knowledgeableness of PWC's regarding their illness(es), are not defensive, cold, disrespectful, unkind, emotionally harmful, etc.
I'm also looking for an allopathic physician who does not have a problem with patients' who go both the drug and "natural" treatment route. If, due to your being a specialist, you cannot be my Primary-Care Physician (PCP), you need to have absolutely no problem(s) "working" with my Naturopath as my PCP, and with my taking supplements and/or using alternative forms of treatment along with allopathic medicine.
Can you "fill that bill"? Please let me know your reaction at your earliest possible convenience. Thank you for all of your time, consideration, help and assistance.
(I am having a rare good day when I can write this. I am grateful for your patience.)
Very sincerely yours,
Wolf Britain, PWC
Prospective Patient
[Copyright (c) 2000 in the U.S.A. and Internationally by S. Wolf Britain. All rights are reserved.]
I am understandably very upset about your misrepresentation of Fibromyalgia. As you news documentary programs usually do regarding both Fibromyalgia Syndrome (FMS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), aka Chronic Fatigue Syndrome (CFS) [a misnomer of the illness], you much more often than not give biased attention in favor of the side which falsely denigrates both syndromes.
You claim that there's allegedly no test for Fibromyalgia; but the very
"tender point" information you gave, IS the test. Granted, it is a
subjective test, and the patients have to be trusted that they're giving truthful information; yet it has been conclusively proven by many reputable physicians and/or researchers, such as Dr. Bennett, not only that most FMS patients are completely honest about all of their symptoms, but that most CFIDS patients are honestly forthcoming about all of their symptoms as well. Your attempted discrediting of these serious illnesses, which have been proven beyond doubt to be PHYSICAL illnesses, and are believed to be such by our federal government, including the CDC (Centers for Disease Control and Prevention), is clearly a calculated program to "paint" these illnesses in as bad a light as possible.
In addition, it has also been conclusively proven beyond legitimate question that, since both syndromes have many of the same symptoms and test results, such as high antibodies to such viral, bacterial and neurotoxin infections as chronic Human Herpes Virus 6, Type A, Strain GS (HHV-6A, GS Strain), chronic Epstein-Barr Virus (EBV), Cytomegalovirus (CMV [another herpes virus]), chronic Mycoplasma infections such as Mycoplasma Fermentens Incognitus and/or Mycoplasma Pneumoniae, and chronic, extremely serious Ciguatera Toxin poisoning caused by whatever the causative agent of the illness(s) is/are, as well as others, they are very likely related illnesses, if not part of the same disease process(es), though perhaps opposite ends of the same illness spectrum.
Both of these syndromes are very seriously disabling illnesses, which cause their sufferers to barely get through each day. Many are so seriously ill that they cannot walk to the bathroom, let alone anywhere else, and are therefore bedridden; and, as already said, it has been proven beyond any reasonable doubt that these illnesses are in no way "all in the patients' head(s)". Naturally, they suffer from secondary depression and/or anxiety resulting from the syndromes, not primary mental illness; in fact, many, if not most, FMS/CFIDS patients are initially, incorrectly diagnosed with primary Major Depressive Disorder (MDD) before finally being correctly diagnosed with FMS and/or CFIDS. This is a proven, common occurrence in such illnesses with supposedly "mysterious", unknown, elusive causes, and should not discredit same.
What I call the "discreditation game" (which is, to say the least, the
opposite of funny), that organizations such as your's and others' carry out against these totally legitimate, very serious, high prevalency rate illnesses (now believed to be over 1,000,000 U.S. citizens, and many more millions of other citizens worldwide), not only jeopardizes completely necessary, important research on same, but also seriously exacerbates the disabilities of most sufferers of these debilitating syndromes. Therefore, please cease, and correct, the very harmful effects that you have perpetrated, and are perpetrating, against both the Fibromyalgia and CFIDS illnesses. Thank you.
Wolf Britain
Patient with CFIDS/FMS (PWC)
January 3, 2000
[Copyright (c) 2000 in the U.S.A. and Internationally by S. Wolf Britain. All rights are reserved.]
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Postscript: I'm looking for someone to go 50/50 with me and move to either Ecuador, Costa Rica, Belize, Guatemala, or Mexico where we can make a very low income go much further with a lower cost, and higher standard, of living (than living in the States on such a low income). This includes an only income of Social Security Disability (SSDI) and/or Retirement benefits. The Social Security Administration most definitely DOES allow SSDI and/or Retirement benefits, but not Supplemental Security Income (SSI) benefits, to be sent to recipients in most other countries! There are many books about moving and living abroad available at the public library and/or at Amazon.com . Naturally, I realize we would probably have to spend some time getting to know eachother, and finding out if we're compatible, before moving abroad together. We could even have our own separate "spaces" by choosing to rent or purchase a house or apartment with separate quarters, and still save considerable money in monthly costs compared to living in the States on the same income. If you might be interested, want to ask me some questions, and/or want to discuss it, please e-mail me at the address below.
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