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This survey was sent to me by one of us. This woman REFUSES TO BE A VICTIM. She helps herself and others with her activisim and investigative mind.



1. Would you describe ME/FM as a curable psychological illness?

Yes 12% No 79%

2. Would you describe ME?FM as an organic illness?

Yes 20% No 38% uncertain 6%

3. Have you ever diagonosed ME?FM in a patient?

Yes 79% No 50%

4. Have you ever been requested by an insurance company to provide a secondary opinion as to any illness or injury?

Yes 35% No 50%

5. In your practice during the past 5 years how many ME/FM cases have you or are you currently treating?

0:2% 1-10:73% 11-20:6% +20:13%

6. In your experience do most ME/FM patients become:

-cured 0% -get better 29% -get worse 10% -stay the same 62%

7. Are you familiar with the use of tender point identification as a method of diagnosis? Yes 94%

8. Are you able to identify the locations of the tender points?

Yes-85% No-12%

9. Which fibromyalgia symptoms do fibromyalgia patients indicate most impacts their ability to function?

Widespread Pain-81% Headaches-25% Chronic Fatigue-70%

Impaired Memory-17%

10. Which fibromyalgia symptoms are most easily treated?

Widespread Pain-13% Headaches-9% Chronic Fatigue &

Impaired Memory-2% Sleep Problems-29% Stiffness-21%

Balance Problems-2% Cold Extremities-Irritible Bowel-7%

Irritability & Depression/Anxiety-29% Cognitive Problems-2%

11. What seems to work the best in treating fibromyalgia?

12. Does Fibromyalgia cause sufficient disability to prevent people from regular-unadjusted working or performing normally?

Yes-69% No-112% uncertain-6%

13. Have you ever supported a fibromyalgia patient in a claim for either Long Term Disability or Canada Pension Plan?

Yes-63% No-29%

14. Would you agree that your profession would benefit from a standardized criteria used to diagnose FM?


This survey done by Ms Colleen Beaumier, M.P. of Brampton-West Mississauga, due to contacts by her constituents. This is a survey of General Practitioners in the Peel Region

courtesy of National ME/FM Action Network, Quest Collection 1993-1998.

Doctor's and Snake Oil

Snake Oil
Again I am dealing with the negative first. Let’s get it over with and move on to doctors, although I am sorry to say, that section is not completely positive.

Have you read books, or seen movies depicting the old days and the peddlers that went from town to town, using a horse and wagon, selling remedies and potions that cured everything from dandruff to sterility? They also left town in a speedy fashion after selling their magic potions.

Well, those peddlers are still around. They don’t use horses and wagons anymore, but peddlers abound on the Internet.

I was appalled when I was researching this project, to read that these, now more sophisticated peddlers, are preying on the desperate CFS/FM sufferers who are looking for hope. These unscrupulous people are selling self-help books, all kinds of vitamins and nutritional supplements, lingerie, ancient Chinese remedies, emails that will heal, and much more. These peddlers range from multi-level marketers to doctors to nurses, to midwives.

These gurus are promising fantastic results like the following; you will get, and stay healthy through herbs and massage, you will increase your immune system, you will balance the biochemical or weak elements in the body, (whatever that means), you will awaken self-healing power, you will feel as fresh and energetic as a child, your body will naturally be able to respond and deal with it’s own problems, such as fungi or parasites, and much more.

I notice that, like their predecessors of old, these snake oil peddlers make a quick exit too. Many of the listed sites are no longer active.

Did I mention that these cures are expensive? I am sure you knew that! I will provide an excellent information site for the ‘quacks’ in the quick links.

**Something to take into consideration. Several years ago, a Florida dentist, who was HIV positive, infected several of his patients, and one of them died. Make sure your health care provider wears those gloves.

Before I write anything about doctors I would like to share this with you.

What They Say

What They Say:
“If it doesn’t clear up in a week, give me a call.”
What They Mean:
“I don’t know what the hell it is. Maybe it will go away by itself.”

- - - - - - - - - -

What They Say:
“I’d like to prescribe a new drug.”
What They Mean:
“I’m writing a paper and would like to use you for a guinea pig.”

- - - - - - - - - -

What They Say:
“That’s a nasty looking wound.”
What They Mean:
“I think I’m going to throw up.”

- - - - - - - - - -

What They Say:
“This should fix you up.”
What they Mean:
“The drug salesman guaranteed that it kills all the symptoms.”

- - - - - - - - - -

What They Say:
“Everything seems to be normal.”
What They Mean:
“I guess I can’t buy that new beach condo after all.”

- - - - - - - - - -

What They Say:
“-I’d like to run some more tests.-”
What They Mean
“-I can’t figure out what’s wrong. Maybe the kid in the lab can solve it.”

- - - - - - - - - -

What They Say:
“If those symptoms persist, call for an appointment.”
What They Mean:
“I’ve never heard of anything so disgusting. Thank God I’m off next week.”
Thanks Suzanne

It is difficult for physicians to treat us due to the large overlap between CFS and FM.
From some physician’s perspective, there is frustration in dealing with CFS/FM patients. They are not knowledgeable, and must spend too much time understanding and treating our myriad of changing symptoms and they simply don’t want us as patients.

      Other physicians are still reluctant to accept CFS as a legitimate condition. I recently had a degrading doctor experience. During my quest to find a new family doctor I had a disastrous encounter with a family physician who had been in practice for 20 years. When I told this doctor that I had CFS, she stated that she would not have taken my appointment if she had known that. I asked her if it was because CFS patients were too time consuming, and she replied, “NO, I DON’T BELIEVE IN IT. IT IS STRICTLY PSYCHOLOGICAL.” I left her office with head held high, and straight back, but I felt like slinking away, tail between my legs. I was totally humiliated. Her face and voice still haunt me.

Some, kind-hearted physicians prescribe narcotics for our pain, and patients become addicted. These doctors and their patients are not too concerned with addiction, because from their viewpoint, they comprehend our conditions as chronic, so why worry about addiction? I prefer to believe that there will someday be a cure and I don’t want to go through the withdrawal of a narcotic addiction. I also don’t like the “space-out feeling” of opiates.

We need doctors who will listen to us, and who are open to new ideas. We need doctors who understand that we should generally be involved in our treatment.

Chronic Disease and Healthcare
I liked this information from a British Site.
For many years public health practitioners have recognized the increasing burden of chronic illness. Chronic disease management is beginning to develop its own identity as an important component of health care. One of the essential ingredients required for continued progress in chronic disease management is research. Chronic illness should be high on the agenda of organizations that fund health research. Funding alone is not enough. The research must be of high quality. We know there are serious shortfalls in this area. That is one of the reasons for our Awareness Project.

Researchers must never lose focus of the person who has the disease. For treatment to be successful, the patient must be well informed about their disease, know where they can access treatment, and have greater control over their treatment. Patients must be involved as partners in their care, and the emotional dimensions of their ideas recognized and addressed. This partnership can ensure that their own health care be delivered more effectively and efficiently.

With chronic disease, our lives are irreversibly changed. In our case, variation in patterns of illness and treatments with uncertain outcomes, create uncertainty about prognosis. In most cases doctors cannot accurately detect the trends themselves. We know them better, and can provide information and preferences that are complementary to the doctor’s professional knowledge. In general, we provide the individual information and the doctor, the general information. Both are necessary for effective management.

And, to me, the ideal method of treatment! Because we must understand and assent to new practices and new responsibilities, an effective working relationship between patients and health care professionals becomes essential. The approach is remote medical management via the telephone, or electronic communication. Chronic disease is particularly suitable for remote management, especially when there is continuity between the patient and service provider. In randomized trials, telephone management, has been shown to reduce cost and to improve the health status of participants, compared with patients receiving usual care. Just think of what we could do with our computers.
The remote medical management above sounds wonderful. How many times have you been too sick to make that follow-up visit to your doctor? How many times is an office visit unnecessary?

The bedrock of the better way is a partnership between patients and physicians.

Halsted Holman, professor of medicine
Kate Lorig, associate professor of medicine
Trish Groves, p[primary care editor

Get the Most Out of Your Doctor’s Appointment.

When you go to the doctor, remember, you are not a victim. You are a sick person with rights.
You can say NO and ask questions. It is your body, and you have the right to choose what happens to it.

When making your appointment, specify a long appointment. That way you won’t be rushed or feel flustered. That is when the old ‘word loss’ and ‘memory block’ come to the fore. To be fair to doctors, they are very busy, and they will feel more relaxed if they know that the waiting room is not developing a crowd.

Do you forget things you wanted to say until after you leave your doctor’s office? We all do. Write down questions. Keep that journal, as mentioned in the CFS section, so you are organized. Then you don’t have the stress of trying to remember. That alone, can make you forgetful, and inarticulate.
Doctor’s are not gods. They have bad days, and they forget things too.

If you are visiting that doctor for the first time, make sure that he/she treats ‘ us PWC’s ‘. Take a page of information briefly stating the history of your illness, tests previously performed, treatments you have used, and medications you are currently taking. Be sure to list the medications to which you have had adverse side-affects.

Don’t be afraid of, or embarrassed to write down comments during the appointment. Many times, I have come out of the doctor’s office, and my husband will ask me about the appointment. Very often, I just did not remember.

I will not print the list of Canada-wide doctors here. Unfortunately I know one, and I cannot recommend a doctor I don’t know.

If this sounds like I have a “hate-on” for doctors, I do apologize. I have met some wonderful doctors and many of our medical care-givers are lacking in the information needed to treat us.

Don’t forget your pharmacist. I deal consistently with the same pharmacy. I have been prescribed a medication and am ready to take it, until my pharmacist tells me that I have had an adverse reaction to it.

All I can say, is GOD BLESS YOU!

A newsletter for caregivers published by:
The National Family Caregivers Association
CFIDS Association of America
PO Box 220398
Charlotte, NC. 28222-0398
Attn.: Caregivers.

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