- ME & FM Health Centre
- Farewell to Dr. Caruthers
- M.E. Not CFS
- We're Ba-a-ack!!
- Baille Wins on M.E.
- Phone Committee and Phone System
- MEBC News
- Join Now
- Doctor & Lawyer List
- Membership Benefits
- Mission Statement and Goals
- Accounting and Society Status
- President's Message
- Doctors Learn-CMA, Quebec, Alberta
- AADEP - Meets in Vancouver
- Disability Advocate Visits BC
- Registry of Disability Applicants
- In Case You Had Not Heard
- Temple Researchers Find New Enzyme
- Appropriations Bills Pass Full Committee with CFIDS Provisions Intact
- British Medical Journal
- Supreme Court of Canada Ruling
- Estimating the Prevalence of CFS Among Nurses
- Antibodies Linked to Chronic Fatigue
- Ampligen
- Enzyme, LMW Protein R.E.D.D.
- Exercising May Be Bad
- Another Marker 2,3 - DPG
- ME Day and Week
- Support Groups - Joining and Starting; Vancouver Group Meeting
- Physician's Column - Part 1
- Physicians As Experts in IME
- Teachers with ME/FM
- Petition Against Insurance Companies
- Children and Youth With ME/FM
- Taxes
- American Journal of Medicine Focuses on CFS
- Supreme Court of Canada Supports FM
- Books Published in 97-99
- Fatigue Busters
- Letter: CFS and Exercise
- Home Interview
You asked for it, here's your chance!
Now it's time to show what you will do for a M.E. - FM Health Centre. Robert Hill (letter following) contacted MEBC about forming a Community Health Centre; the Board now wishes to start the ball rolling on the project. But we need your HELP. Mr. Hill is a very capable and knowledge able person to have on board, as he forms Health Centres for a profession. He is donating his time, he knows how to get funding, as well as how to get things up and running. This is our best shot ever for setting up a M.E. and FM clinic and the MEBC Board is very excited about the possibilities. We feel this may be our best chance for a long time. Calgary and Nova Scotia have similar clinics, so this is a very real possibility. Let's make it happen!
The following is a letter from Mr. Hill about the project.
COMMUNITY HEALTH CENTRE
Community Health Centres (CHC) are: "leaders in providing community based primary care." The CHC design is dynamic and effective. It is able to respond to "ever-changing community needs" and to " form partnerships across health care systems." A CHC "ensures comprehensive care for those who are ill while placing equal importance on prevention and health maintenance." CHCs are cost effective and provide a consistent high standard of health and healing. The model itself has been in Canada since the early 1970s. In B.C. there are currently 13 CHCs. Some examples are: Reach Clinic, Every-women's Health Centre, Vancouver Native Health Society, Midmain Community Health Centre, Multicultural Health Centre and the Downtown Health Centre." The values behind a CHC are to address specific health concerns, to be accountable to the community in which it is located, to promote equity in access, to strengthen the role of the consumer in health services, to encourage linkages among health services, to develop and coordinate primary health services which make the most efficient use of health care providers and resources, to promote health and healing, to prevent illness and to enhance the health status of the clients and communities served.
CHCs are developed to service specific communities or specific needs. They are community based and are run by a local board of directors.
I am a Community Development specialist with over 30 years of experience in community based health services. I currently am involved with the development of three CHCs and I serve on the Board of a fourth.
I am offering my services free of charge. These services are: (1) as a development Specialist and (2) as a Technical advisor and support person. I do this because over the past 15 years I have shared my life with a person who suffers from this disease and I am sick and tired of battling bureaucracy, misunderstanding, lack of services, lack of credibility and lack of concern. I think it is time to develop a service which will address our unique needs and which will be responsible and accountable to us.
What is needed, at this point is the following:
1. An assessment of needs
2. A sponsorship group.
3. A project outline and proposal.
4. Recruitment of a PROJECT MANAGER to develop and implement the concept.
With your help I can do most of the work in stages 2-4. I can even help in developing a CHARTER for step :1. It is normal for a project of this magnitude to take from 3-5 years to complete, which is to go from here to actual operation phase.
I cannot guarantee to be successful. What I can say is the following:
1) CHCs already exist in B.C.
2) There is a need.
3) I have experience and I will do everything I can. I have a self interest in seeing this succeed. Respectfully, Robert Hill
WE NEED INPUT
Now is the time for action. We need your input. To begin with, we need to form a committee to make some initial decisions, with Mr. Hill's guidance. We must decide if we want to include other illnesses in the Health Centre, as that may improve our chances of success, eg MCS (Multiple Chemical Sensitivity). But we must act now, before something is put in place by the insurance companies or the government, which may diminish our illness.
Now is the time. We have a chance to set up a Health Centre based on our needs - not the government's, the doctor's, or the insurance companies'.
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MEBC was proud to honor Dr. Bruce Carruthers upon his retirement from Internal Medicine at a luncheon and reception held August 29th at the home of Bruce and Sharon Shields-McLeod in Langley. Thanks Sharon for all the hard work putting this on.
MEBC President Tom Schwiegart, on behalf of all the members, presented Dr. Carruthers with an original sculptured crystal "Inukshuk" award, created especially for him by a local Port Moody artist.
An "Inukshuk" is a stone figure built to resemble a human shaped totem pole with outstretched arms. The Inukshuk is found along Canada's northern shores and was originally built as an offering of friendship and a welcome to travelers by Canada's native peoples. As well, it provided a landmark to aid in navigation while on journeys. The Inukshuk has been adopted today as a symbol to remind us of our dependence on each other, and the value of strong friendships.
Mr. Schwiegart made the presentation saying "The Board of Directors, the members of MEBC, and all of your patients, take great pleasure in presenting you with a token of all of our admiration for your dedication, inspiration and friendship. And, while we will miss you very much, we sincerely wish you a happy retirement, and we say thank you from the bottom of our hearts for everything you have done for each and everyone of your patients."
The base holding the Inukshuk award was engraved: "Dr. Bruce Carruthers, in appreciation and with admiration for your compassion, commitment, inspiration and crystal vision to look beyond and into your patients."
Shortly afterwards, MEBC co-founder Sherri Todd made a presentation to Mrs. Carruthers for all her support and compassion shown, a beautiful bouquet of flowers along with a vase with the word "Thymeways" etched on it. (Thymeways is the name of the Carruthers' Galiano Island home).
Mrs. Carruthers' dedication was as follows: "MEBC and all of Dr. Carruthers' patients would like to present you with a gift and say thank you for allowing us to come into your home; walk about your garden and property and to feel the "Peace" that surrounds it. We would like you to know the beauty and tranquillity of Thymeways will not soon be forgotten by its visitors. Also, as all great men have a great woman behind them, we thank you for sharing Dr. Carruthers with us for as long as you have."
M.E., FM and MCS sufferers have lost a valiant advocate who always took the time to truly listen to the patient, and gave the extra actions to ensure that his patients received the very best care possible.
After a well-deserved holiday in Hawaii, Dr. Carruthers will return to finish work on his upcoming book on ME & FM, which of course we all anxiously await.
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MEBC and ME & You will always use the term "M.E." to describe our illness. The World Health Organization uses this name, and it's one we will continue to use. Since we are trying to eliminate the name "Chronic Fatigue Syndrome" we will not use the term "M.E./CFS/ CFIDS" when referring to it. M.E., CFS, and CFIDS are all terms used to describe the same illness.
MEBC feels that FM (Fibromyalgia) is a separate illness that often occurs as a secondary condition when someone develops M.E. As FM overlaps in many of the symptoms, ME & You will run information on FM specifically and MEBC will continue to work with FM groups throughout the world. MEBC will also not use the term "M.E./FM" - we feel this implies that M.E. and FM are the same illnesses. We will use the term M.E. & FM when we are referring to both. Since M.E. and FM have so many symptoms in common, much of the information in this newsletter will also be applicable to an "FM only" person.
MEBC will continue to work with persons having MCS (Multiple Chemical Sensitivity) and GWS (Gulf War Syndrome) and any other groups that have similar problems as M.E. There may be many different causes or contributing factors for M.E., and we will continue to keep an open mind. All of the MEBC support groups listed deal with FM as well as M.E. FMBC has support groups throughout BC (see resources page).
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MEBC is back in business and growing. It has taken much effort over many months to get things in order. We apologize for the delay. It has been several years since the last newsletter, and since MEBC was active, but now it's time to get some work done. We now have eight active board members and we have many major projects that we want to complete.
The newsletter has taken a lot of fine tuning, working out some of the bugs. Please feel free to let us know how we can improve future issues. In our next issue we will have some columns - a doctor's column (part II) produced by Dr. Carruthers, our medical advisor; and a legal column to review legal concerns.
The goal in "M.E. and You" is to pack as much information as possible into the Newsletter that will be of practical help. Original text will be used from some articles with the source always mentioned. Original text is used to avoid misrepresentation of the information. As with most articles there are a few juicy tidbits; these will be printed with "..." signifying that some text was omitted. Comments and additions from the editor will [be in square brackets]. We are trying to use the Internet as much as possible and hope to have articles on our web site for all our members in B.C. Since most people can access the Internet from a relative, friend or library, this will increase our coverage of support. We were limited to 18 pages in our newsletter for mailing weight restrictions, so for this issue to get everyone up to speed we are a bit tight. We can always use help and welcome ideas and comments.
So spread the word, MEBC is back, growing and helping. Help us financially. Plan now how you can help MEBC with your time, energy and ideas!
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Canadian Medical Association Journal Vol. 159, page 533 September 8, 1998 Author: Karen Capen (Karen Capen is an Ottawa lawyer) The transcript can be viewed at: http://www.geocities.com/HotSprings/Villa/3110/judgemnt.htm
In Baillie v. Crown Life, a judge ruled that a woman with CFS qualifies for long-term disability benefits. Crown Life was ordered to pay benefits to plaintiff Sharon Baillie, a former senior computer systems analyst with the insurance company.
Recent longitudinal studies suggest that some persons affected by CFS improve with time but that most remain functionally impaired for several years."
The Alberta case involved a Crown Life employee who resigned her position in early 1990 after a series of health problems left her unable to work. In May 1991 her physician diagnosed her condition as CFS, but her request for disability payments was rejected. The successful lawsuit could result in payments totaling more than $500 000. She was also awarded approximately $80 000 in court costs. This case may provide a precedent for the estimated 20,000 to 30,000 other Canadians who experience similar symptoms.
During the trial, Baillie said she did not claim long-term disability benefits when she left Crown Life because she did not think she had a long-term illness. When she decided to make a claim, she consulted Dr. Edward Jorundson, an expert in occupational medicine, who concluded that Baillie had CFS and the condition had been triggered by giardiasis.
The judge concluded that Baillie may not have been a "model of accuracy" in terms of the information she provided. However, he was satisfied that she was credible because of her "lack of knowledge of what was really happening in terms of a diagnosis of her medical condition, particularly in 1990-91, and the cognitive impairment she was suffering.
Details
K. Sharon Baillie, plaintiff, and Crown Life Insurance Company, defendant [1998] A.J. No. 235
Action No. 9303-22591
Alberta Court of Queen's Bench
Judicial District of Edmonton
Clarke J.
Judgment: March 2, 1998. Filed: March 3, 1998.(41 pp.)
COMPANY DROPS CFS DISABILITY APPEAL
[This story was one of three that the Canadian Medical Association Journal ran on M.E. and all have been included in M.E. & You. The Globe and Mail and The Financial Post also ran the story]
The July 29 edition of Canada's Edmonton Journal reports that Crown Life Insurance company, which lost a disability lawsuit filed by former employee K. Sharon Baillie, has decided to drop its appeal and pay Ms. Baillie $213,000, plus $2100 per month until she reaches age 65. Ms. Baillie's disability claim was based on Chronic Fatigue Syndrome.
Ms. Baillie's attorney, Mark Feehan, said that even before Crown Life agreed to settle, the company's lawyers said they would not dispute whether CFS is organic or psychoneurotic. He said that this means that the company is admitting that CFS is an organic, physical ailment. This is important, he said, because "they can't come back to other people and say they're just suffering from a psychoneurotic thing and we're not paying you."
The transcript can be viewed at: http://www.geocities.com/HotSprings/Villa/3110/judgemnt.htm
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Phone Committee and Phone System
MEBC has a new BC Toll-free 1-800 number 888-353-MEBC (6322). This phone service will help us provide better service to all of our BC members. MEBC does get charged per call, so if you live in the Vancouver area, please call the local number, 878-7707. Our old business line was too expensive and limited, and has been terminated. We will try to return calls from BC within a two-week time frame.
Five volunteers, each of whom suffers with M.E, staff the phones. If your call is not returned within two weeks, please try again.
In the yellow pages and "1-800 information" MEBC is listed under "Chronic Fatigue Syndrome" - This is only to help those not familiar with the new M.E. name.
The Phone Committee has already contacted over 900 people to up-date our mailing list and information. They have been asking the membership some questions as part of the up dating of our records, such as doctors, lawyers, insurance companies, and any dealings they have had with them. In the next few months, MEBC will be compiling this information and trying to be more of a resource for its membership.
If you require general information, please contact your local support group leader. Feel free to contact MEBC for any specific questions or information.
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MEBC Join Now
Join now! Final notice! Hurry! Time running out! Limited time! Don't miss out! We're not really this pushy, but we needed to catch your attention.
This may be your last MEBC newsletter. We have sent a complimentary newsletter issue to all members on our membership list. We encourage you to join up, and want to let everyone know that MEBC is back in business. If you have paid for a membership within the last three years, your membership will commence as of April 1st, 1999, after being reviewed by the board. Please phone and confirm that we have recorded your membership. We ask that you send a donation, as we do need help to help you. The membership dues are our only source of revenue. Our current annual membership is $20. You will be voting to confirm this at the next AGM, as it was missed at the 1998 AGM. Any member that cannot afford the $20 is encouraged to send what they can and they will receive a membership.
Doctor and Lawyer List
One advantage to having a membership with MEBC is that you have access to a list of "M.E. friendly" doctors and lawyers. This list is from the "M.E. & F.M. Manual", please see resources page for information. The author wants MEBC and its members to receive benefits from these lists.
Both lists have been up-dated in 1999, and now contain over 200 doctors that members have suggested, as well as a list of doctors that are not recommended. MEBC is actively working on keeping this list current. Each member is responsible for accessing the doctor they choose. Non-members will not be given doctor's names over the phone. MEBC will send these lists to any member. The list is included in our new membership package. Please pass on names of any good or bad doctors or lawyers to MEBC or to your local support group leaders. In this way we can all help each other. The list contains doctors for the Greater Vancouver area, as well as for the rest of B.C. Please contact your local support group leader for possible names. In future issues of ME & You, we will try to give ideas on how to find a good doctor.
Membership Benefits
As part of your membership fees, MEBC will provide:
* Representation for you to the media, government, insurance and medical profession;
* Free phone access from anywhere in B.C.;
* An up-to-date doctor and lawyer list;
* Advertising to make the public more aware of this illness;
* Information to the public that M.E. is a real, legitimate illness;
* A quarterly newsletter packed with information to keep you up-to-date and able to fight for yourself;
* Projects - like the M.E. Health Centre;
* Seminars;
* MEBC helps you, you help MEBC.
Mission Statement and Goals
MEBC was formed in 1988. Our main goal is to empower M.E. patients and their families to live with the illness and to fight for their individual rights.
* Raise funds to promote the cause;
* Media and advertising;
* Promote attention and awareness with public, physicians, insurance and the courts;
* To keep in touch with all centres in B.C.
* To promote support groups throughout B.C.
* To work with other groups such as FMBC, MCS, ME/FM Action Network, ME Canada, to promote an overall improvement in our society;
MEBC may not be able to find a cure, however we will try to improve your life.
HELP! WE NEED IT - YOU NEED IT!
We have a long list of things that we need help with. By helping us, you help yourselves and everyone else in the ME community. Please seriously consider it, even in a small way, as it will enable MEBC to accomplish more. Most of the volunteer work can be done in the convenience of your own home. Any amount of help would be appreciated. Much of our work is done through the Internet and by phone to allow volun-teers to function on their own times.
We need help in the following areas:
* Board Members who can attend most meetings;
* Committee Members (to help on projects sponsored by MEBC;)
* Support Group Leaders (to lead the meetings or help with phone support. Many support groups have several people who rotate the leadership of the group. Please consult the support group list and call if you can lend any help.)
* Donations (like most societies, we struggle to find enough resources to complete the goals that we have set for ourselves - eg after publication of this newsletter our bank account is empty.)
* Persons on social assistance who volunteer with a non-profit society (such as MEBC) are eligible for an extra $50 - $100 per month in exchange for 10 hours of service. We have several members who are helping MEBC in this way.
* Manning our phone system - MEBC's mandate is to offer assistance to its membership. In order to accomplish this, we need people to retrieve phone messages (which can be done at your own home) and return calls.
* Resource help - In order to provide as up-to-date information as possible to our membership, we need volunteers who are able to research and gather any relevant M.E. news and summarize this, which may be used in upcoming issues of the newsletter.
Tell us about a special project that you know of, are working on, would like to start, be part of or events that your support group is having. We can advertise these events in our newsletter. We want to ensure that MEBC is not duplicating services, "stepping on toes", or missing important issues. If you are working on a project on your own and would like to keep MEBC informed, we'd love to hear from you.
Information - call us when you hear of an upcoming TV or radio programs that you think we should know about. We would rather have three calls on a subject than miss an important item.
We will be keeping a list of those people who are interested in helping us. If you are not doing well right now, but would be interested in helping us out once you start to feel better, tell us and we will keep your name on file.
Talked To Us Lately?
If you have had any dealings with MEBC in the past five years, we would like to hear from you. We are currently updating our records, so call us. If you have sent us cheques for memberships or donations that have not been cashed or receipts that have not been sent, please call us. If you previously offered help or made suggestions, had ideas, projects, and you feel we have not responded properly, we sincerely apologize. We are back in business and want to hear from you. Just like you, we all suffer from the illness. If you do not hear from us, we are probably in an "M.E. fog". Please remind us again with a phone call.
Accounting and Society Status
MEBC's licensed accountant is currently reviewing our books; and there will be a report from him in the next newsletter. The books were organized this fall, and tax returns for 1996 and 1997 were submitted. Revenue Canada accepted these returns and our GST Rebate for both years has been received. Our current bank balance as of March 1, 1999 is $537. Our society status with Victoria is up-to-date and we are a registered non-profit society with the name "ME Myalgic Encephalo myelitis Society of BC", Certificate of Incorporation #S 0024384. Our charitable status continues, and our tax number is (BN) 13117 3239 RR001.
We are up-to-date and back in business, and ready to get things accomplished!
President's Message
Had it not been for the efforts of several devoted individuals, this newsletter would not have been possible. We have attempted to obtain as much information as possible in a limited amount of space available. It is our aim to enlighten as well as give you hope for the future.
We believe our efforts through this newsletter and other such sources will help in better recognition, education and future respect through the medical and political circles. We also aim to inform and educate you, our readers.
This newsletter and our other society efforts are all from volunteers' work. We are dedicating as much time as we can to continue this. Any help that can be volunteered to MEBC to continue to make this a success would be greatly appreciated.
Thanks to all involved.
President, MEBC ,
Tom Schweigert
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Doctors Learn - CMA, Quebec, Alberta
Source: Canadian Medical Association Journal Vol. 159, page 537 Date: September 8, 1998 Author: Barbara Sibbald Email: cmamsc@cma.ca
Chronic Fatigue Syndrome (CFS) is gaining unprecedented legitimacy in Canada because of a recent Alberta count ruling, new guidelines from the Quebec medical college and recent research suggesting that the syndrome may have a biological basis. There is little doubt these developments will affect physicians across Canada.
The Alberta College of Physicians and Surgeons hopes to respond with CFS guidelines within a year. Dr. Brian Ward, the assistant registrar in charge of standards, says the college's interest "began long before the case." He says it has received frequent complaints from patients with CFS who can't find physicians willing to treat them or follow their conditions. "They've asked us to increase the level of awareness among physicians and to provide education," says Ward.
The College des medecins du Quebec has published Canada's only CFS guidelines. Released in June, the 15-page guidelines define CFS and provide current information on its epidemiology, etiology, medical evaluation, diagnosis and treatment.
The guidelines were 2 years in the making and included a review of scientific literature and expert input from 5 physicians, including 2 microbiologists.
Canada has been a little slow off the mark: CFS is already recognized by the World Health Organization, the US Centers for Disease Control and Prevention and, as of July, the British government.
Dr. Robert Suhadolnik, a professor of biochemistry at Temple University, has found a statistically significant dysregulation in one of the antiviral pathways in CFS patients. The test is now being applied in the Netherlands and paid for by its health services. "The tide of experimental evidence is turning inexorably in favour of a biological basis [for CFS]," says O'Sullivan.
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The following is excerpted from a memo of Vancouver lawyer Brad Garside, who attended the talks on behalf of MEBC during the International Symposium of the American Academy of Disability Evaluating Physician (AADEP) held in Vancouver during the week of August 7th, 1998. Reprinted with Mr. Garside's permission
The American Academy of Disability Evaluating Physicians is a professional organization comprised of physicians who "specialize" in the field of "controversial conditions" such as Chronic Fatigue Syndrome, Fibro-myalgia, Multiple Chemical Sensitivities, and Carpal Tunnel Syndrome. This organization has established three scientific advisory positions on behalf of the Academy respecting "controversial " diagnoses in disability medicine.
A Dr. Markovitz spoke on the "Current state of the art on FM. How disabling is it? Dr. Markovitz is an Internal Medicine Specialist with subspecialties in hematology, oncology, occupational and environmental medicine. He expressed skepticism about the FM condition. He is clearly from that sector of the medical profession which regards FM as a questionable medical condition or syndrome, as opposed to a true disease. He emphasized the theory that FM is not a medically recognized organic disease (such as rheumatoid arthritis, lupus, etc,).
He notes that there is currently no reliable standard upon which to rate, evaluate, or assess the degree of impairment or disability in FM patients and he empathized the theory that FM patients appear to have co-existing psychiatric or emotional disturbances. Quite oppositely, Dr. Harvey Alpern committee chair of AADEP's Scientific Advisory committee on M.E. believes that Chronic Fatigue Syndrome is 'real'; i.e. that it is a "real" condition that seriously affects people. He says there is a need to "figure it out" and determine how to evaluate it. He noted that a high percentage of precipitating events involves some form of severe stress and that not all M.E. patients have a virus (i.e. Epstein-Barr). He also noted that some people think M.E. is basically a psychiatric condition or depression based condition but he pointed out that the psychological changes experienced by M.E. patients are different than those found in people who have pure depression. His view seemed to be that depression is not the primary cause of M.E., although M.E. patients may suffer secondary reactive depression.Dr. Alpern indicated that accepted modes of treatment which perform best seem to be medication, a compassionate physician, and the patient's willingness to try "hands on" therapy that assist them, including biofeedback, low grade exercise programs, etc.
Mr. Garside stated in his draft memorandum that he did not find the talks he attended respecting the position papers on FM and M.E. to be of great assistance.
He writes " The direction of the position paper on Fibromyalgia causes real concern, in that the Fibromyalgia committee seemed to be very skeptical of Fibromyalgia. Their views would likely be of great assistance to the insurance industry."
He went on to write that the position of the committee on M.E., although somewhat more sympathetic, does not offer any new insight. The general tone seems to reflect a "watered down" version of the standard views. He found the meetings somewhat disappointing as it would appear that the "AADEP does not seem to be taking the lead in actually developing an assessment protocol to evaluate levels of disability or impairment for M.E."
The AADEP states that, while admitting that evaluating impairment or disability is difficult in M.E., patients seem to want to rely on guidance from existing assessment criteria already developed by the AMA for conditions such as psychiatric conditions and other pain disorders rather than trying to develop new criteria for Fibromyalgia and M.E.
MEBC appreciates Mr. Garside attending and reporting on these meetings, and wishes to thank him for all his efforts on our behalf.
Mr. Garside is with the Vancouver Law firm of Paine Edmonds. His office is located at:
Suite 1100-510 Burrard Street,
Vancouver, BC V6C 3A8
Telephone (604) 683-1211
Fax:(604) 681-5084
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Disability advocate George Cameron-Caluori met with several members of MEBC over a five-day period this past July.
In various locations around the lower mainland, George kindly offered his time to those who seized the opportunity to discuss their CPP disability appeals, and long-term disability claims and considerations, WCB, Social assistance, tax court, and review tribunals.
All individual meetings and the public forums were well attended.
Since 1994, George has been a Director in the Legal Advocacy Program of ME Canada, where he created and implemented a program to counsel and represent disabled people in Administrative appeals across Canada.
George is now in private practice with his own firm to help advise and nationally represent those who are chronically disabled and trying to obtain their income benefits.
As well, George now publishes a newsletter of medical and legal issues for people with chronic illnesses entitled "The Disability Reporter". Anyone interested in contacting George or finding out more about his newsletter can do so as follows:
Cameron & Associates Ltd.
#401-200 Elgin Street,
Ottawa, Ontario K2P 1L5
TEL:613-237-2296
FAX:613-232-7763
E-mail:gcamcal@istar.ca
Web site: http://home.istar.ca/~gcamcal/cmaweb. htm
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Registry of Disability Applicants
I am Mary Ellen, the Special Projects Manager for the National ME/FM Action Network. We are a registered, charitable, Canadian organization dedicated to helping people with our disease through advocacy, support, research, education and the publishing of a bi-monthly newsletter "Quest". At present we have a membership of more than 1,000 people across Canada and, as well as to these individuals, our newsletter goes out to over 450 support groups across Canada. Our web site address is http://www3.sympatico.ca/me-fm.action/
"We have been hearing from disability applicants all over Canada who have had an independent medical examination arranged by their insurance company and who have been disqualified for disability insurance on the basis of an independent medical examination in spite of their own doctors' professional opinions that they are unable to work. As a result of hearing about these experiences, we are developing a registry of disability applicants, who have attended an independent medical examination arranged by their insurance company. Our aim is to accumulate a data-bank of both fair and unfair reports so as to develop a balanced view of the situation. When we have collected enough information, if in fact it becomes clear that insurance companies are treating disabled people with ME/FM unfairly, we intend to work on correcting this situation.
"Please support this very important project by answering the seven questions below. Your name will be held in strictest confidence."
Mary Ellen
Manager, Special Projects
National ME/FM Action Network
Your name: Street Address: City: Province: Postal Code: Area code & Phone #: Fax #: E-mail
1. Name of Insurance Company:
2. Insurance Representative's Name:
3. Have you ever been under surveillance?
4. Did you attend an I.M.E.?
Did you attend an F.A.E.?
Did you attend another form of Evaluation?
If yes, please explain:
5. Name of Doctor (s) who performed the Evaluation:
Credentials of Doctor:
Details of the Evaluation, including how long it lasted and any specific tests performed:
6. Do you feel that you were evaluated fairly?
7. What were the results of the Evaluation (ie. benefits- terminated)?
Were you asked, encouraged or forced to participate in a rehabilitation program?
Phone: (905) 831-4744
Mail: P.O. Box 66172, Town Center
Postal Outlet, 1355 Kingston Rd.
Pickering, ON., L1V 6P7
Email: marye@pathcom.com
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Temple Researchers Find New Enzyme in Chronic Fatigue Syndrome Patients
Diagnostic Marker for Complex Illness Possible, press release from the CFIDS Association of America
Philadelphia, July 17, 1997. Dr. Robert Suhadolnik and his research team at Temple University School of Medicine reported today that studies of patients with Chronic Fatigue Syndrome (CFS) have led to the identification of a new human enzyme. Suhadolnik, a professor of biochemistry and a member of the university's Fels Institute for Cancer Research and Molecular Biology, says of the new findings: "We are greatly encouraged by the trend we see. All CFS patients tested have this new enzyme, while none of the healthy controls do." The findings, reported today in the Journal of Interferon and Cytokine Research are based on data from a limited number of patients. However, larger studies are already underway and have attracted financial support from the National Institutes of Health.
"This new enzyme in CFS may not function as well as the normal RNase L found in healthy people. It may explain why CFS patients' bodies have a hard time maintaining the energy necessary for cellular growth."
This study was funded by the U.S. Public Health Service and The CFIDS Association of America, the nation's largest and most active charitable organization dedicated to conquering Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).
Suhadolnik explained this study at a congressional briefing in Washington on May 16: 1998
Appropriations Bills Pass Full Committees With CFIDS Provisions Intact
The House and Senate Appropriations Committees have each passed bills containing provisions instructing the federal health agencies to increase the urgency with which they respond to CFIDS. These achievements are due solely to the letters, E-mails and faxes sent and the calls and visits made to legislators by CFIDS activists [Authors note] all major bodies were mandated to do more for M.E. (CFIDS). These included:
* Centers for Disease Control
* U.S. Department of Health & Human Services
* Health Resources & Services Administration
* National Institutes of Health
* Social Security Administration
* National Institute of Allergy and Infectious Disease
* National Institute of Arthritis, Musculoskeletal and Skin Diseases
British Medical Journal
[SOURCE: British Medical Journal (1997;315:164-165)]
Reuters reports Monday July 21, 1997 that according to a current article in the British Medical Journal, men diagnosed with CFS have increased serotonin activity which might explain the excessive fatigue experienced by patients with the Chronic Fatigue Syndrome.
They found that men with Chronic Fatigue Syndrome had significantly higher concentrations of prolactin in their blood than the other men, according to Dr. P.J. Cowen, a clinical scientist at the Littlemore Hospital in Oxford, U.K., and the senior investigator in this study.
While Chronic Fatigue Syndrome does share some characteristics with depression, depressed individuals have unchanged or reduced prolactin response to D-fenfluramine, "making it unlikely that Chronic Fatigue Syndrome and depression share a common pathophysiology," the study concluded.
The Newcastle University team thinks they've defined what the syndrome is, not just in terms of a vague hodgepodge of symptoms, but as a series of chemical changes in the body.
HUGH DUNSTAN - Collaborative Pain Research Unit "We now have a preliminary molecular description of the disease and it may get stronger, we may develop it quite extensively, but still there is a molecular basis. Which means then it is probably or very likely to be an organic disease, a real physical condition."
Hugh Dunstan is part of the Collaborative Pain Research Unit - a joint team from Sydney and Newcastle Universities and the John Hunter Hospital. They argued that if CFS was a real disease, it should cause changes in the body's chemistry, changes they could detect.
Supreme Court of Canada Ruling
1996 - from the National ME/FM Action Network Source: Vancouver "Province" newspaper dated May 3,
Supreme Court of Canada Ruled: Having a mental disability is not a valid reason to cut someone's work benefits.
The Supreme Court of Canada says Battlefords and District Co-operative and its insurance firm can't cut a woman off benefits simply because her problem is mental rather than physical. Ms Betty-Lu Clara Gibbs had complained to the Saskatchewan Human Rights Commission that her employer discriminated against her when it stopped her disability benefits after two years in March 1990. Ms Gibbs, a clerk, suffered from anorexia nervosa, a bowel disorder and panic attacks. The court said it will release reasons for its ruling later.
Estimating the Prevalence of Chronic Fatigue Syndrome Among Nurses
CPAR October 30 1996 The AACFS conference SanFrancisco
Using a denominator of 3,400, these findings indicate a current CFS prevalence rate of 1,088 per 100,000 and a lifetime prevalence of 1,265 per 100,000. Nurses might represent a high-risk group for this illness.
Antibodies Linked to Chronic Fatigue
SOURCE: Journal of Clinical Investigation (1996;98:1888-1896)
NEW YORK (Reuters) ..About half of those diagnosed with chronic fatigue syndrome (CFS) have an abnormally high level of antibodies to their own cellular proteins, a new study suggests. But, it's not clear if the antibodies are the cause or the effect of the syndrome, or even what the implication of the ab-normal response is, experts cautioned.
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[Members of the National CFIDS Foundation have been conducting an investigation into the Ampligen trials for approximately three years. The results of that investigation were published in an article in the most recent issue of The Forum, NCF's official publication.
AMPLIGEN: HOPE, HYPE OR HELL?
By D. Summer, M. Reynolds, G. Kansky and C. Tai
There are success stories, but not long-term ones....
Yes, we would like to see Ampligen approved by the FDA. Then many more PWCs can try it without prostituting themselves for the company. But we'd also like the company to be more truthful. We've interviewed far more PWCs than we have space to write about. The vast majority were not doing $10,000 plus better. Even the minority who had not seen improvements were not exactly ecstatic. Personally, each of the authors has individually decided to take a "wait-and-see" approach rather than be additions to the Memorial List. We feel there may be much better treatments down the 'pike.
NEW YORK, Sept. 30 /PRNewswire/ -- Hemispherx Biopharma (Amex: HEB) today made available further detailed medical and scientific information confirming that the Company's Ampligen is the only treatment for CFS currently in advanced testing and the only one which has been given cost recovery designation by the Food and Drug Administration. This information is contained in a paper delivered by the FDA to the Chronic Fatigue Research Committee on April 18, 1998.
Under the current cost recovery treatment designation, there are approximately 100 patients receiving Ampligen treatment in the United States, Canada, and in Europe, plus 25-40 patients who are scheduled to begin receiving treatment in the coming weeks. The FDA has recently approved more than 200 patients enrolling in the confirmatory Phase III program.
The Chronic Fatigue Research Committee consists of the National Institute of Health, the Centers for Disease Control, Health & Human Services, the Social Security Disability Administration, and the FDA. SOURCE Hemispherx Biopharma
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[This is connected to the new human enzyme article. The following is From the R.E.D. Laboratories web site.]
R.E.D. Laboratories is an early phase biotechnology company developing clinical diagnostic tests, test kits, and therapeutics for Chronic Fatigue Syndrome (CFS)...
By 1996, Dr. Suhadolnik's research had identified the abnormal protein responsible for the over-activity. His article, published in 1997 in the Journal of Interferon & Cytokine Research, refers to the protein as a "low molecular weight (LMW) variant of Rnase L." Working closely with Dr. Daniel Peterson, an internist in Incline Village, NV, Dr. Suhadolnik again found that this LMW protein was present in a sub-group of patients with CFS.
At the same time, Drs. Bernard Lebleu and Catherine Bisbal of Montpellier University, France, working in collaboration with physician Dr. Kenny De Meirleir of the Free University Brussels, Belgium, were able to repeat Dr. Suhadolnik's research findings. Using a different methodology than Dr. Suhadolnik's group, Drs. Lebleu and Bisbal also identified a LMW variant of Rnase L protein common to a subgroup of pateints with CFS. The two clinicians, Dr. De Meirleir and Dr. Peterson, decided to identify this new subgroup of CFS patients by naming the new disease, "Rnase-L Enzyme Dysfunction Disease," or R.E.D.D
A laboratory test to identify the subset of patients with R.E.D.D. and separate these patients from all the rest, now exists.
No potential therapeutic for CFS can obtain regulatory approval from the FDA unless the drug's mechanism of action is known, and until now, no quantifiable abnormality has been identified at the biochemical, molecular, or cellular level at which to target a drug.
The LMW protein abnormality represents exactly what has been missing for all potential therapies to gain approval thus far; a potential target of action. By stopping the action of the LMW protein, or by decreasing the amount present in the cell, the immune system may re-stabilize itself. The Company's initial research will attempt to block the action of the LMW protein in vitro.
Hemispherx entered into a research collaboration with R.E.D. Laboratories to use the Company's Rnase L protein assay to pre-screen patients for entrance into the Phase III trial. By using the assay as both a pre-treatment screening test and a post-treatment follow-up test, Hemispherx believes the data generated will support the company's application to the FDA to approve Ampligen for therapeutic use.
[The cost is $500 per test or $1000 per panel]
R.E.D. Labs in Belgium --
http://www.malle.net/redlabs/
Hemispherx:
http://www.hemispherx.com/
The AACFS Patient Panel on Ampligen:
http://www.cfids-me.org/aacfs/ampligen.html
Deborah Shearer's UK Ampligen Home Page:
http://www.ndirect.co.uk/~dshearer/amphome.htm
http://www.cfids-me.org/nonv-cfids/ampligen5/
Papers from AACFS:
Strayer (Hemispherx) on Ampligen (old data; don't have abstract for new data):
http://www.cfids-me.org/aacfs/session2.html#strayer
Suhadolnik on RNaseL factor:
http://www.cfids-me.org/aacfs/session5.html#suhadolnik
DeMeirleir on "R.E.D.D." (RnaseL Enzyme Dysfunction Disease)
http://www.cfids-me.org/aacfs/session6.html#demeirleir
Susan Horvath on RnaseL dysfunction:
http://www.cfids-me.org/aacfs/session6.html#horvath
Dr. De Meirleir interviewed on Dr. Mazlen's show:
http://members.aol.com/rgm1/private/DeMeirleir.htm
Dr. William Carter (president of Hemispherx) on Dr. Mazlen's show:
http://members.aol.com/rgm1/private/carter.htm
Dr. C.V. Herst's (president of R.E.D. Labs) on Dr. Mazlen's show:
http://members.aol.com/rgm1/private/herst.htm
BRUSSELS, Belgium, Sept. 23 1998/PRNewswire/ -- R.E.D. Laboratories NV, a privately held Belgian biotechnology company, announced today that it is expanding its research collaboration with Hemispherx Biopharma, Inc. (Amex: HEB) in the U.S. to develop and commercialize diagnostic tests for Chronic Fatigue Syndrome (CFS) and other chronic immune and viral diseases.
Since opening its clinical laboratory in February of this year, R.E.D. has seen a dramatic increase in the demand for its CFS testing services especially in Europe. The Company's testing platform is based on the measurement of an abnormal form of the protein RNase L, an antiviral enzyme found in the white blood cells of CFS patients, first discovered in 1996 by Dr. Robert Suhadolnik of Temple University. Research data indicates a high degree of correlation between levels of the abnormal protein and the severity of the disease. R.E.D. believes that its collaboration with Hemispherx, the industry leader in therapy for CFS, will fully define the importance of RNase L as the critical diagnostic marker for CFS....
CFS is a global disease. In the U.S., over 500,000 Americans are afflicted with CFS, a fact reported in a Centers For Disease Control publication dated in 1995. A Harvard University study performed that same year estimated the number to be much higher, with nearly 2.5 million suffering from CFS....
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[This article was drawn largely from a report by Moira Smith, and from the medical conference abstracts made available by Ted Shaw. Thanks to Elizabeth Rechniewski for alerting CFS-NEWS to this story.]
Ongoing research in Australia shows that exercised muscles generate clearly abnormal responses in CFS patients, significantly more so than expected for sedentary controls. This work had been reported at the CFS medical conference in Sydney in February 1998, and more recently in the May 29 edition of the Medical Observer. The lead researcher has also appeared in a television news interview where he stated that the test in development will help legitimize the plight of CFS patients, and he cautioned against exercise as a treatment for CFS...
Prof Scroop and his team have spent the last two years studying 20 CFS patients matched with normal controls. They have found that people with CFS release twice as much lactic acid into their bloodstream during exercise as healthy people, so that they fatigue much earlier and have a significantly lower endurance level. http://www.networx.com.au/mall/cfs/meeting/
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The Toronto Star Fri 22 May 1998 By Phinjo Gombu
[Teenager finds marker that eludes experts]
Toronto teen Dilnaz Panjwani...has been awarded a top prize at this year's week long Canada-Wide Science Fair in Timmins for her work identifying a possible diagnostic test for the elusive illness called Chronic Fatigue Syndrome. She has identified a ``statistically highly significant'' relationship between low levels of a blood enzyme called 2,3 diphosoglycerate (2,3-DPG) and patients with Chronic Fatigue Syndrome.
From: "Environmental Illness Society of Canada (http://www.eisc.ca)
Federal Health Minister Allan Rock informed the Environmental Illness Society of Canada, following their January 1999 meeting a couple of weeks earlier of the following: "I have also noted with interest that her findings will be followed up with further studies by the Environmental Health Clinic at Toronto's Women's College Hospital. We, at Health Canada, will certainly await the publication of Ms. Panjwanis findings in a peer-reviewed medical or scientific journal, as well as confirmatory findings from further studies on this issue by other researchers". (February 2, 1999).
The Environmental Illness Society of Canada 536 Dovercourt Avenue Ottawa, ON K2A 0T9 Canada
http://www.eisc.ca
eisc@eisc.ca
Off:(613) 728-9493
Fax: (613) 728-1757
Toll Free (Canada): 1-877-362-1103
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In case you didn't know, MEBC lobbied the government to declare May 12th "ME Awareness Day" and May 12th - 18th "ME Awareness Week" in British Columbia. MEBC's main effort this year will be to advertise in as many media sources as possible, and making the public aware of the legitimacy of the illness. If you have any suggestions or ideas on how we can promote this day, please give us a call. We are interested in your input. You can also do something yourself - call the newspapers and TV stations in your area, reminding them that it is ME Day/Week, and stir them into doing an article.
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Support Groups - Joining and Starting
Our support group liaison has contacted all the support group leaders and up-dated the support group list. He is also our contact person, so if you have any questions, please leave him a message on the MEBC phone line. MEBC would like to encourage all members to go to the support group meetings, or contact the support group leaders to make use of this valuable resource. If you attend a support group, or are a leader, please keep MEBC informed, as we want to keep our membership involved in what is happening in BC. If there is no group in your area, consider starting one. In upcoming newsletters, we will be giving advice on how to start a support group.
Some of the support groups are led by more than one person, who share the leadership on a rotating basis, allowing for flexibility in time commitment. Leaders do not have to be experts on M.E. just willing to be of assistance to others like themselves. Leaders only need to pass on information that will help people deal with the illness and life issues, encourage other members of the group to share any information they may have learned, and give members a chance to talk and socialize so that they will not feel "alone" with these "weird symptoms". If you are not able to participate in the meetings, keep in touch with the group leader by phone.
Being a leader or attending a support group can be a very uplifting and rewarding experience.
VANCOUVER SUPPORT GROUP
The new Vancouver Support group meets on the second Tuesday of each month at the Augustina Lutheran Church, 5 West King Edward (2 blocks west of Main Street). They meet from 1:00 PM - 3:00 PM. The location may be changed in the near future. The next meetings are April 13th and May 10th. There will be a $1 donation requested to cover costs. For information, please contact Margit 708-9234.
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By Dr. Carruthers
PART 1: INFORMING OURSELVES ABOUT M.E.
Many patients with M.E. are able to follow research developments on the Internet, or have friends who can do so. This allows everyone to stay in touch with current developments, but sometimes this onslaught of information can be quite overwhelming. It should be remembered that most of the information coming through the Internet is not peer-reviewed and thus is unfiltered, with information, disinformation and mistaken information all coming forth at the same time, with no accompanying criteria to say which is which. At best, the information is contradictory, and thus confusing, to say the least. At worst, the information overload contributes to M.E. chaos and can result in a severe crash. With this in mind I would like to suggest some principles by which the reader can assess the value of the new information.
New information is concentrated in several areas. One lies in the area of possible causes. There are a large number of causal candidates and alternate pathogeneses (causal pathways) currently under consideration to explain M.E., and that in itself is a sign of our overall uncertainty regarding the correct cause or set of causes. This uncertainty is very unsettling, but that is how it is. To help reduce these destabilizing effects, I would like to present what I will call a sieve for causal hypotheses or theories, ie: a set of criteria that can be used to filter out less adequate explanations and retain those which explain M.E. better. Any theory worthy of being retained must of course explain the whole spread of symptoms of M.E. and also why they come together at the same time, ie: their interconnectedness in time and space. It must explain why M.E. affects women predominantly, and why it has appeared at this particular time in history. It must elucidate why at least 3 biological control systems are involved simultaneously, ie: the central nervous system, the endocrine system, and the immune system. Any adequate theory must also explain the large variation in the intensity of symptoms, and their irregular rhythms. It must also clarify why M.E. has been so difficult to understand using current scientific paradigms. If a theory can explain some of these aspects but not all of them, it is a partial theory at best; it may have local truth, but is not deep or wide enough to represent an adequate explanation. In this way, you can begin to separate out those explanations that have a chance to offer more certainty concerning this most mysterious and unsettling disease.
Many causal theories are now expressed in terms of abnormal amounts of neurohumours, hormones and/or cytokines. We must remember that these biochemical compounds function as messengers within the body control systems, and do not specify the reasons why these systems are sending the wrong messages - an inappropriateness that remains as mysterious as ever.
Some theories are framed in terms of mental or psychosocial causation - eg: stress or depression as a cause or trigger of M.E. While these causal possibilities slip comfortably into naïve discourse concerning causation, a closer look at the situation reveals the outrageousness of the assumptions that lie behind them - that some sort of causal influence could cross a mind/ body divide set up to ensure that such influences could never cross it. This mires such theories in contradiction and incoherence. For if bad thoughts can cause M.E., then mental concentration can bend spoons. While both body and mind are necessarily involved in anything such as M.E. that affects our whole being, this must be considered in a context that allows their interaction - which is not the context of causal thinking.
In the next issue, we will discuss Internet therapeutics.
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[From Colleges des medecins du Quebec setting standards for Physicians doing IME published in 1998] 1-888-633-3246
"An increasing number of complaints are being submitted to the Colleges des medecins du Quebec on questions involving the professional ethics, conduct and competence of physicians in their role as experts. In addition, public agencies often resort to an expert medical assessment to support their decisions, particularly when evaluating deficits that could lead to compensation. The College therefore wants to define a framework for this aspect of medical practice, since its regulations on the subject are rather imprecise. It wants this document to serve as a guide to the profession, clarifying the ethical and regulatory contests in this field of practice
The situation or condition warranting the request for the expertise must therefore come within the expert's field of competence. If not, the physician must refuse to act in this capacity
He must remain independent, that is, maintain total professional autonomy vis-à-vis the requesting party, his role being first and foremost to assert the trust. Thus, he should avoid any form of accommodation, despite the fact that he is being paid by one of the parties to the dispute
The person undergoing the assessment has a right to examine all personal information concerning him, including the expert's report
The person undergoing the assessment may also have deleted any information that is outdated or unjustified for purposes of the record. He may also write comments and have them placed in the record."
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Ian Waymark, co-director for B.C. for the National ME/FM Action Network is attempting to enumerate the number of teachers in B.C. who are disabled with ME/FM. The reason for the enumeration is to bring to the attention of the BCTF just how many teachers are on disability due to ME/FM and how they have been treated by their Federation and, in turn, by Great West Life Insurance Co.
Ian is aware of the "fear" some teachers have of discussing their disability with anyone they are not fully familiar with and suggests if you do not want to have your name used, then you are welcome to use a pseudonym.
Ian is a teacher from District 34, Abbotsford, who has been disabled with ME since 1993. He has been through the mill with medical assessments, psychiatric examinations and has been through the tribunal system that found in his favor.
A second objective of Ian's enumeration is to bring teachers together as a cohesive group so that individually we are not acting the part of "David" in "David and Goliath". Only as a group can we support each other, help each other and make our colleagues aware of ME/FM.
If you wish to register with Ian you may contact him by phone at 250-722-0094, by fax at 250-722-0087 or by e-mail at ian_waymark@bc.sympatico.ca.
Ian looks forward to hearing from ALL teachers with ME/FM and looks forward to the day when teachers do not have to hide from "life" so they may maintain their LTD benefits.
If you are experiencing problems obtaining or maintaining LTD benefits please contact Ian. He has helped a number of teachers over the past years and finds, in many cases, loss of benefits is simply due to a sick, exhausted teacher not knowing where to turn next.
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Petition Against Insurance Companies
[Nancy contacted MEBC and asked us if we could increase the support for her petition to influence the Superintendent of Insurance Bureaus and the Government of B.C. into changing how insurance companies deal with M.E. and FM people. MEBC encourages people to take action to change the mistreatment they are suffering, so we published her letter and asked that you take a minute and send your support.]
YOUR HELP AND SUPPORT ARE URGENTLY NEEDED!
If you, a family member or a friend suffers from FMS or ME and have been turned down for disability insurance by an insurance company in British Columbia (or any other Canadian province), THIS PLEA IS FOR YOU!
My name is Nancy Johnson. I live in Vancouver, B.C. I am 47 years old and suffer from FMS. Until a year ago, I was reasonably bright, content, hard working, ambitious and able to recover from and/or manage any health problems that came my way. That all changed when I got FMS. However, this is not about having FMS, but rather the impact of being denied long-term disability insurance benefits. You know that the stress of being without an income can be worse than the disease itself and in many cases can hinder or prevent recovery.
THE INSURANCE COMPANY IS RUINING MY LIFE!
I paid my premiums in good faith and expected the insurance to pay benefits when, and if I should need them. That was not the case. I have had to hire a lawyer to get my benefits. In my pursuit of "justice" I have contacted literally hundreds of people - including the Honorable Glen Clark, Premier of B.C. All to no avail.
I need your support. WE MUST UNITE AND TELL THE INSURANCE COMPANIES THAT WE ARE NOT GOING TO TOLERATE THIS BEHAVIOUR! So, spread the word. The more people who sign the petition, the better our chances to be heard!
I sincerely thank you for your support. I will do whatever it takes to put a stop to this.
THIS FORM WILL BE FORWARDED TO THE SUPERINTENDENT OF INSURANCE BUREAUS, THE PREMIER OF B.C. AND THE ATTORNEY GENERAL.
Please send the following information:
Name, Address, City, Province, Postal Code, Phone, E-mail, Diagnosis, Insurer, Lawyer's Name and Comments.
ON THE INTERNET: PLEASE SIGN THE PETITION at <"http://www.the-mac-lady.com/petition.html"> and READ MY STORY at <"http://www.the-mac-lady.com/mystory.html">
OR SNAIL MAIL:
#401 - 3480 Main Street Vancouver, BC V5V 3N2
Kindest Regards, Nancy Johnson
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The National ME/FM Action Network has a new Initiative on Children and Youth with ME/FM, spearheaded by Kate Andersen, a person with ME and former MEBC Board Member. Kate has extensive experience in advocacy for children with invisible disabilities and works part-time as a distance education instructor for the School of Child and Youth Care, University of Victoria. Kate is inviting youngsters with ME, and their parents and teachers, to join her in this new initiative by volunteering their ideas, experiences and time. Among the other plans for the current year are a Sourcebook for Canadian Teachers of Children and Youth with ME/FM, to be edited by Dr. David S. Bell, leading ME/FM researcher and clinician. Kate is also seeking Canadian teachers with ME to help develop educational strategies for children with the illness. If you have Internet access, check out the National ME/FM Action Network's web site at http://www3.sympatico.ca/me-fm.action and go to the Youth Page. If you would like more information about young people with ME/FM or if you would like to volunteer to help ,you can email her at www.geocities.com/youthcanada.
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MEBC has been made aware of the Tax department reassessing people after they receive a settlement from their insurance companies and claiming this as income and taxable. The insurance companies are issuing T4 slips to people. Talk to your lawyer and make certain what will be done in your case. Make sure you withhold moneys until you are sure they will not do this to you. If you are in talks to settle, you can get Revenue Canada to give a binding decision, before you settle, as this has a major impact to your claim. If necessary structure your settlement payments over several years to keep your tax bracket lower.
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American Journal of Medicine Focuses on CFS
Source: CFS-NEWS Electronic Newsletter
CFS is the focus of a special supplement of the American Journal of Medicine (AJM). The supplement contains 19 scientific articles and is intended to be a quick book on the state of the art on CFS. This 124-page supplement is available for purchase, and can also be viewed on the Internet. It has been distributed to 50,000 physicians who subscribe to the AJM. This edition of CFS-NEWS contains a summary of each of the articles presented.
AJM is the journal of the Association of Professors of Medicine, which is comprised of the 125 chairs of all the medical schools in North America. The CFS supplement was based on the proceedings of the 1996 conference of the American Association for Chronic Fatigue Syndrome. However, the supplement does not merely contain the 1996 papers as presented at that conference, rather all of the papers have been revised to reflect a scientific understanding of CFS currently as of 1998. In addition, the AJM reviewers requested additional overview articles that would explain to the primary care physician the significance of these reports. The articles by Gudrun Lange, Mark Demitrack, and two by Paul Levine, were especially written for this supplement to summarize specific aspects that the AJM reviewers wanted covered. http://www.cais.net/cfs-news/ajm98.htm
Dr. Phil Lee, the former U.S. Assistant Secretary for Health, gives a brief history of CFS and concludes that "The significant advances since 1990 in research related to CFS, as illustrated in this supplement, bode well for the eventual development of effective treatment. For patients who suffer from CFS this cannot come soon enough."
... Researchers from Johns Hopkins University describe their work which shows that many CFS patients have neurally mediated hypotension (NMH), and that treatment of this disorder has helped many of the patients. Tilt table testing in over 600 CFS patients has shown that approximately 77 percent test positive for the condition.
... The researchers comment that various neuroimaging studies usually show contradictory results. In this study, PET scans were applied to 18 CFS patients with psychiatric conditions excluded, 6 depressed patients and 6 healthy controls. Significant differences were found in several parts of the brain. The authors note that their finding of hypometabolism in the brain stem confirms an earlier study by Costa et al. This finding has not been seen in psychiatric conditions and they suggest that it "seems to be a marker for the in vivo diagnosis of CFS." The researchers conclude that their work supports an organic cause for CFS.
... CFS patients were tested for cognitive performance before and after a treadmill exercise and were found to be significantly worse than health controls. The study involved 19 CFS patients and 20 controls.
... Doctors CFS Web Page at http://www.cais.net/cfs-news/doctors.htm
BIOMARKER FOR FIBROMYALGIA
... Scientists may have discovered a biomarker for Fibromyalgia, according to a study published in the February '99 Journal of Rheumatology. The study by Russell Wilson et al. shows that Fibromyalgia (FM) patients show a high prevalence of antipolymer antibodies (APA), while autoimmune illnesses that are often confused with FM show a much lower prevalence The study also showed a correlation between APA and the severity of the illness in the Fibromyalgia patients.
APA was tested in blood from two sources: patients in trials, and from a blood bank. The trials involved 47 patients with FM, 16 with osteoarthritis and 13 with rheumatoid arthritis. Patients with implants of any kind or with concurrent autoimmune conditions were excluded from this study. Results were positive for 47% of FM patients, compared to 19% for osteoarthritis and 8% for rheumatoid arthritis.
... Russell also told CFS-NEWS that the definition of Fibromyalgia as set by the American College of Rheumatology is written narrowly in order to help scientific studies focus on patients who truly have only Fibromyalgia. That research definition is the basis for prevalence figures for FM that are much lower than the 19 percent indicated in the current study. Russell said that the true prevalence of Fibromyalgia is likely much higher than what may be seen by this strict research definition. Other studies show that chronic pain may be present at a 15-to-20 percent rate in the general population. The current APA assay results are likely reflecting the higher prevalence of Fibromyalgia. Since the lowest test score for a well-defined illness was 3 percent, therefore the APA assay's rate for false positive was likely 3 percent or less, Wilson concluded. Future studies by this research team will make comparisons to healthy controls.
... Autoimmune Technologies can be contacted by phone at 1-504-529-9944 and by fax at 1-504-568-0634. Further information can be seen at their web site at http://www.autoimmune.com A gene that may be linked to Fibromyalgia has been found by researchers at the University of Illinois College of Medicine in Peoria. In their study published in the February '99 Journal of Rheumatology, 85 affected and 21 unaffected members of 41 sibships were studied, drawn from 40 multicase families. The scientists concluded that they had found a possible gene for Fibromyalgia that is linked with the HLA region on human cells. The researchers cautioned that "Our results should be regarded as preliminary and their independent confirmation by other studies is warranted."
LOW-DOSE HYDROCORTISONE
... Low-dose hydrocortisone was found to alleviate fatigue and disability more so than placebo and with little or no side effects in a trial of CFS patients, according to research conducted by Anthony Cleare, et al., of London and published in the Lancet of 6 Feb. 1999.
Although a previous study at NIH had found hazardous adrenal suppression when hydrocortisone was administered to CFS patients, the current study used dosage levels of 5-10 mgs. whereas the NIH study used 25-35 mgs. The authors nonetheless cautioned against the widespread use of low-dose hydrocortisone as a treatment strategy until after more research has been conducted. http://www.thelancet.com
CFS IS DIFFERENT FROM FIBROMYALGIA
CFS patients do not show elevated substance P levels in cerebrospinal fluid, demonstrating that CFS is different from Fibromyalgia, according to a study by B. Evengard et al. of Sweden. Previous studies have found abnormally high levels of substance P in the cerebrospinal fluid of Fibromyalgia patients. The authors tested the cerebrospinal fluid of 15 CFS patients and found normal levels of substance P in all of them. Thirteen controls showed normal for all but two subjects. The researchers conclude that CFS and Fibromyalgia are different disorders, despite the similarity of their symptoms.
Substance P is a neurochemical involved in pain modulation.
LABORATORY-INDUCED FATIGUE
... Increased production of interleukin-6 (IL-6) was observed in CFS patients, but not during, according to a study published in the International Journal of Molecular Medicine. The authors conclude that: "These data suggest a role of IL-6 in natural symptomatology and perhaps in the pathogenesis of CFS. In addition, the data demonstrate that laboratory-induced fatigue (experimental fatigue) may not be a good model to study immunological changes in CFS; immunological parameters should be studied in a longitudinal manner during the natural course of the disease."
DHEA
... Researchers at Osaka University Medical School tested the hypothesis that endocrine abnormalities could be a partial cause of CFS by checking their patients for serum dehydroepiandrosterone- sulfate (). They found that "the majority of Japanese patients with CFS had a serum DHEA-S deficiency."
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Supreme Court of Canada Supports FM
Province March 26, 1999
The Supreme Court of Canada unanimously ruled that Marie Bracklow, a 50-year-old Burnaby woman was entitled to support from her ex-husband. They had had a four year relationship before their marriage, and were married for three years. During the marriage, Marie developed FM.
The court ruled that couples "owe each other a mutual duty of support" that begins when they marry.
Marie Bracklow had asked for life long spousal support from her ex-husband. Other cases across Canada were on hold awaiting the decision.
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Boundless Energy : The Complete Mind/Body Program for Overcoming Chronic Fatigue (Perfect Health Library Series, No 3) Deepak Chopra / Paperback / Published 1997, P135 $9.60 (2/*** - reviewed by 2 persons who gave it 3 out of 5 stars)
Breaking Out of Environmental Illness : Essential Reading for People With Chronic Fatigue Syndrome, Allergies, or Chemical Sensitivities Robert Sampson, Patricia Hughes (Contributor) / Paperback / Published 1997 P240 $11.20 2/*
Chronic Fatigue Syndrome : A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS, Gregg Charles Fisher, et al / Paperback / Published 1997 P256 $9.59
The Downhill Syndrome : If Nothing's Wrong, Why Do I Feel So Bad? Pavel Yutsis, Morton Walker (Contributor) / Paperback / Published 1997 P320 $10.36
The Fibromyalgia Help Book : Practical Guide to Living Better With Fibromyalgia , by Jenny Fransen, I. Jon Russell / Paperback / Published 1997 P239 $15.16 2/*****
Osler's Web : Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic Hillary Johnson / Paperback / Published 1997 P736 $12.76 5/*****
Your Personal Guide to Living Well With Fibromyalgia Published 1997, P160 Price: $11.96 2/***
America Exhausted : Breakthrough Treatments of Fatigue and Chronic Fatigue Syndrome Edward J. Conley(Introduction) / Paperback / Published 1997 P210 $14.95 1/*****
Chronic Fatigue Syndrome Shlomo Yehuda(Editor), et al / Hardcover / Published 1997 Our Price: $79.50
Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia and Environmental Illness Burton Goldberg / Paperback / Published 1998 P359 $18.95 4/*****
Chronic Fatigue and Its Syndromes Simon Wessely, et al / Hardcover / Published 1998 $79.50 5 ***
Chronic Fatigue Syndrome : A Treatment Guide (Quality Medical Home Health Library) Erica F. Verrillo, Lauren M. Gellman / Paperback / Published 1998 P400 $12.76 1/ *****
Dazed and Fatigued in the Toxic 21st Century Mark Llewellyn Hall / Paperback / Published 1998 P270 $10.36 2/*****
Disability and Chronic Fatigue Syndrome : Clinical, Legal and Patient Perspectives (Journal of Chronic Fatigue Syndrome, V. 3, No. 4) P116 Nancy G. Klimas(Introduction), Roberto Patarca (Editor) / Paperback / Published 1998 $11.96
Facing and Fighting Fatigue : A Practical Approach Benjamin H. Natelson / Paperback / Published 1998 P208 $12.00 2/*****
Herbs for Chronic Fatigue : A Keats Good Herb Guide (Keats Good Herb Guide) Kathi Keville / Paperback / Published 1998 P96 $3.96 2/****
Understanding Chronic Fatigue Syndrome : An Empirical Guide to Assessment and Treatment Fred Friedberg, Leonard Jason / Hardcover / Published 1998 $27.97 P266
Chronic Fatigue Syndrome : A Comprehensive Guide to Effective Treatment ('the Natural Way' Series) Gill Jacobs / Paperback / Published 1998 P128 $4.76
Knowing ME - Women Speak about ME and Chronic Fatigue Syndrome Caeia March(Editor) / Paperback / Published 1998 $17.95
A Parent's Guide to Cfids : How to Be an Advocate for Your Child With Chronic Fatigue Immune DysfunctionSyndrome David S. Bell(Editor) / Paperback / Published 1999 $17.95
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By Mary-Teresa Schmidt From the Fidonet CFS Echo, 11-15-94
AROUND THE HOUSE:
* Don't stand when you can sit.
* Plan your activities and assemble everything before you start.
* Reschedule daily tasks so you do some only 3 or 4 times a week so you have time to rest each day.
* Delegate tasks: ask children or other family members to help.
* Schedule regular rest periods each day.
* Use a cart, wagon or basket to carry things from one part of the house to the other to eliminate retracing your steps.
* Move things you use often to lower-accessible shelves.
* Use power tools and labor saving electric appliances.
DURING PERSONAL GROOMING:
* Sit on a stool in the bathroom while shaving or applying makeup. Prop elbows up on counter if you can.
* Allow enough time to complete grooming in "phases," allowing for frequent rest periods.
* Use warm, not hot water for baths or showers. Hot water increases muscle fatigue.
WHILE SHOPPING:
* Get a handicap sticker for your car.
* Shop when you are at your peak energy.
* Shop by yourself for only a few items. Let other family members do major weekly shopping.
* When shopping alone, ask a grocery clerk to carry out groceries.
* If you arrive home tired, put away only the perishables. A family member of friend can do the rest.
* Shop by phone whenever possible.
* Avoid peak shopping/traffic hours.
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Monday, September 28, 1998
Tara Curtin wrote this letter to Jane Colby, the Children's Officer of the U.K. organization Young Action Online, in response to an appeal for experiences by CFS/ME patients who have had exercise or CBT therapy. She sent me a copy, and has generously granted permission to post it here.
Ms. Jane Colby,
I am writing to appeal to you on behalf of a child who suffers from M.E. It is my understanding that this child is in danger of being removed from his parents home because they wish to protect him from therapies that they feel will harm him not help him.
I am an American. I am a 25 year old female. I have suffered with this disease (called Chronic Fatigue Syndrome in the US) for five years now. I took 4 1/2 years to get a diagnosis. When I became ill I was an active physically fit college freshman. At first I thought I was just getting lazy, so I began to exercise more. The more I pushed myself the worse my condition became. My condition continued to deteriorate until I could barely walk. I was so determined to keep going, I rarely missed a day of work or school despite the agony I was in. Finally I was told by a Dr. (a CFS Specialist) that my body needed rest not exercise. By the time I found this Dr., I was severely debilitated because I continually pushed myself to function despite the way my body screamed in pain. I thought I could force my body well by exercise. It makes sense (or so I thought) that if you don't exercise you will feel sick. Not in all cases though. My stubbornness nearly cost me the life I always dreamed of living. I nearly ended up completely wheelchair bound. Thanks to I.V. vitamin therapy, anti-viral medications and six months of COMPLETE BED REST I am finally recouping. I am young, but I am successful in my career and thanks to the good advice of my Dr. I will be able to return to my profession in just a few more weeks. In addition I have resumed my rigorous academic schedule. Next year I will begin a Doctorate program in Psychology. I assure you none of this would have been possible if I did not recover and the only thing that has ever helped me to feel better was REST. All the things I did in an effort to keep myself functioning only made the disease much worse. Exercise makes ME/CFS far worse. The agony I have suffered from trying to push my body to exercise is unspeakable. I would rather die than ever live through that pain again. Physical deterioration is not only physically traumatizing, but it is emotionally devastating especially to the young and fit. It is an agony I hope you never have to endure.
Fortunately for them, ME/CFS is a disease that most cannot relate to. They may be sympathetic but they have to go through it to really understand. I knew others who were sick with CFS before me. Although I was moved with compassion, at times I too thought they were wimpy, lazy and crazy. It wasn't until it happened to me that I began to understand the unbearable nature of this disease.
Please show compassion for this child. Do not allow this child to be forced into exercise programs and Psychiatric therapy. He is not crazy and he is not lazy. He is truly, frighteningly ill. If he needs therapy it would be to help him cope with this life changing disease and the trauma he has faced from the threat of removal from his parents home. Please, as an officer for children I know that you have a good heart and want the best for this child. Believe me, the best help you can give him is to believe him. Support him through this illness and tell him there are many others out there who suffer the same. Also tell him there is hope. I know that I am getting better, but it has taken a very long time. Tell him not to give up and tell him you will help him to get better in any way you possibly can. This child needs sound medical treatment, rest, compassion and TLC not athletic or psychological discipline. To impose such therapies on him or any other patient sick with ME/CFS would not only be an act of complete ignorance but it would be an act of sheer brutality and violation.
Sincerely,
Tara Curtin - CFS Defeator
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DISINISSUES Digest - 24 Sep 1998 to 25 Sep 1998 (#1998-260)
LTD "Independent Examiners" who make house visits will most likely tape record your interview (whether or not they tell you this up front).
* For your own records, memory, and self-protection, tape record this interview as well.
* Have a friend, family member, or spouse sit in at the visit, as a second set of eyes and ears--and as your health advocate or personal health representative.
* You don't have to answer all of their questions if you feel that their company has all of this information in your heavily documented file-and you can say so (without being defiant). It is hard for you to recall all the specifics of doctors' names, visit dates, etc. As for medications. if they ask you what you are taking, just list them to the best of your ability.
* No house tours. Let them use the bathroom if they need to. Offer them a glass of water, if they ask or if you feel hospitable. But draw the line there.
* They occasionally ask questions that are none of their business. For example, "What is your annual salary?" This is irrelevant. And...they can obtain the information and have already done so from Social Security and/or your last employer. However, they may be asking you this to verify that you are the said applicant on their paperwork forms.
* Make sure to remove medications from your bathroom cabinet, including antidepressants, anything like laxatives (which could be unfairly construed by them as an attempt on your part to lose weight, diet, or that you might be anorexic, [read "psychiatrically impaired"] etc.)
* Don't be caught off guard by their overly nice and friendly demeanor as they begin the interview. Somewhere in the middle of their questioning, they will throw in a question that is nasty or just out of line. Sometimes this is done to see if you are cognitively "aware," or to just get a read on you and your response. Is your response within normal limits? Is your response "off the wall"? Can you control your anger? Do you lose your cool? Are you lying? Did they "push a button?" (Hence, the necessity for having a friend sit in w/you on this meeting.) Also..they will probably ask the same question(s) more than once--to see if you are telling the truth.
* Be yourself. Be honest. Refer them to all the tons of information that they already have if you cannot remember the answers to their questions. Feel free to use your own copies of medical notes if you cannot remember things.
* Don't go out of your way to clean the house beforehand. Let them see your environment as it usually is. Let someone else answer the door. Let them show you identification, too.
* Keep your interview limited to one room and sit there and stay put. Most of these meetings can last from one to two hours. You can tell them when you are just too tired to continue. Sometimes, the "clued-in" ones can just see that...as you start nodding off or get so weepy and cranky that you cannot even answer questions coherently anymore. Or .your advocate can intercede for you and tell them you are unable to go on and must sleep now.
* After they leave, write down your impressions (if you are able to) while they are fresh in mind. Make sure to get the name of the interviewer (his/her card, if available). Any questions which you felt were unfair or irrelevant or that just plain bothersome/intrusive, make note of. If you felt insulted or not fairly listened to, note this down too. Have your advocate write down his/her impressions. Date and keep copies of both accounts, and date and keep a copy of your tape-recorded session. You never know if/when you might need this information.
* Some of this sounds pretty paranoid or extreme. But, remember, these people aren't coming to the house to offer you insurance. They are coming to your house to identify that you are one of many applicants for whom they wish to deny coverage.
* Having a second person sit in on the meeting with you will dissuade the interviewer from pulling any "bizarre" routines on you. Like suddenly offering to give you money to just drop your claim altogether.
* I think the less that you tell them, the better off you are. Answer their questions but don't feel you have to elaborate in great detail (unless they ask for examples). They have most of the information in their files and they are just trying to recap. to make sure you are indeed the person whose name appears on the claim application-and perhaps trip you up on some of the things you may have written months ago and cannot even remember anymore.
* Just prepare to tell/show them what a typical day is like. What you can and can't do. What your limitations are. What "functioning" means to you on a daily basis. Give them the picture of what a "good day" looks like for you (in addition to the bad days). And have a family member also back you up w/their insights on how you've changed, deteriorated, are unable to handle day-to-day independent living. Stuff like that. Just don't volunteer information unless it is asked for directly, or fits in w/the particular topic.
* You cannot rehearse for this. It is really no big deal. It is just an Insurance Rep, who may not even have the slightest bit of medical training, coming to your house to identify you, see you, hear in your own words your problems, oh, and tape a conversation w/you. That is all.
* If you tell them your meds and you are on more than one psych med., eg., antidepressant, sleeping pill, anti-anxiety, etc., etc., you don't have to itemize it all. One or two will do. You do not want to be characterized as a psychiatrically impaired/disabled person, when/if your disability is organically/ medically valid. So, emphasize your medical problems more than the psychiatric symptoms which may be secondary to them.
That's it.
Good luck.
Don't worry, just have a friend or family member with you to help you remember stuff and give their observations of your daily existence (and what it has become). Write down your "take" on the visit immediately after they leave; have your advocate do the same; and again, if you can, be sure to secure a tape-recorded copy of this meeting.
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