Hello Everyone!
I would like to invite any of you, or your group members to take part and use my RSD group message board.

About two years ago over 1/2 of my group members asked for a RSD message board for our group so that if members were up late hours, or wee hours of the morning they may go there and visit, etc.

I do not have many rules on this board, except the usual, treat others as you would want to be treated, no spamming, objectionable treatment to any particular race or group of people. Other than that, things are kewl.

Thanks soooooooo much, suz in Florida (Sue Wolf Pugh) cpugh67126@aol.com

From the Dumb Criminals Site. If you have not been there, I URGE you to stop in for a visit, wonderful and sidesplitting site. http://www.thedumb.com/

The Videotape set of RSDHope's 2001 Seminar is available to order. We have sold a great many of these already.

The total running time of the two-tape set is about 5.5 hours and covers the full Seminar we held on Saturday. The speakers and topics included are;

Keith Orsini - who spoke on Maintaining and Improving the Spouse-Patient Relationship Through Better Communication"

Dr Schwartz - who spoke on the "Basic Mechanisms of RSD/CRPS"

Dr Ronald Snyder - who spoke on "Treatment Methods and Physical Rehabilitation"

There is also some footage of the Panel Discussion led by both Drs. As well as a wonderful tribute to the USA in the beginning.

The cost of the two-tape set is $50, shipping included. These tapes are chock full of information, not just on RSD but on dealing with chronic pain. Each time I have heard these Drs speak or see their videos, I am amazed at their variety of topics and depth of knowledge and caring.

It was our best Seminar yet. Until 2002! You can order the Videotape set through the website or by sending a check or Money Order to our mailing address.

The sales of these tape sets offset the cost of the videographer, editing, etc., of making them as well as a small profit to go towards the cost of this years Seminar.

It is a fantastic learning tool and allows those who were unable to attend to see what we were up to! Maybe it will excite you enough to attend our Seminar in November of 2002!

We receive an enormous amount of questions concerning Support Groups from phone calls, e-mail, and postal mail.

The most asked question from everyone is:

Where is my nearest support group?

Next is

Why isn't there one closer to me?

And finally (not very often)

What can I do to help get a group started?

Nearest Support Group:

For those on the Internet the answer is relatively easy. Check our Support Group Database. It is located at:

If you're not on the Internet call us 207-583-4589 for a group near you.

A few words though about our list. It does not include every support group. We list those who, in our humble opinion, have a positive outlook, and keep their information current and complete.

Also, there are groups out there who have not treated people we sent with either current and correct information or have not returned emails, phone calls, etc. repeatedly. In these cases we try and connect them with individuals in their area who may be able to help.

It is a choice we have made to best serve the people who contact us. Time is of the essence as you all know. And I am sure you also know that there are more than a couple of the "Pity Party" groups out there that serve no one.

We also believe very strongly in the research that shows that sympathectomies of any type do mostly harm to patients within a year. And that some procedures and/or machines, that are performed or pushed today are outdated and/or not backed up by double-blind studies and should therefore not be shown as cure-alls for RSD. That is also a factor in determining which groups are represented.

In our opinion if a group seems to focus all of their attention on pushing these types of procedures or machines without having the studies to back them up it is irresponsible. We have the utmost responsibility as Support Groups to present factual information to those who contact us. Plus after being in contact with the millions who have used our site, we have accumulated a vast amount of information on personal experiences with such machines or procedures.

Although there are a large number listed on our site, it is not representative of the huge number of RSDS patients that need this type of support, so think about starting one on your own! Lots of tips on our site specifically for this.

Close To Me?

We have a great answer for this one! You need to get one going and we'll help you. We can share the names of RSDS people nearby and we will give you some tips on how to get started. For those on the Internet the tips are located on the same page as the support group database. We have people that travel from Alaska to Maine to our RSDS Conference. Of course that is once a year, but certainly an extra effort is required to reach the support you need. So how close is close?

What can I do?

Perhaps we all need to redefine what kind of support we are looking for. A large group may not be feasible. That's okay. Because of distance here in Maine, small groups are a practical solution. Maybe that is even a good idea in a city. When two or three are gathered together etc. Sometimes a local telephone network will work. A coffee break together with one other person will work (decaffeinated of course). There is old-fashioned letter writing too...much more personal than a-mail and it comes without "spam".

These are a few suggestions from Mom & Dad O. We'd like to add a few more, but I'm sure you have gotten the message.

Ever wonder about the abbreviation ASAP? Generally we think
of it in terms of even more hurry and stress in our lives. Maybe if
we think of this abbreviation in a different manner, we will begin
to find a new way to deal with those rough days along the way.

"There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry
ASAP - Always Say A Prayer

In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest
ASAP - Always Say A Prayer

It may seem like your worries
Are more than you can bear.
Slow down and take a breather
ASAP - Always Say A Prayer

God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs
ASAP - Always Say A Prayer

For those of you who haven’t heard, our name has been slightly changed to more adequately reflect those we help. We, of course are still the same non-profit group just a slight addition to our name.

We are now called "American RSDHope Group". If you have us listed on your site, we would appreciate your making the change :)

I am speaking here not as a representative of the American RSDHope Group but as a fellow RSD Survivor. I want to talk about the following website and the importance of RSD survivors and their loved ones using their hard fought right to vote.

http://www.d-n-i.net/fcs/spartacus_mr_smith.htm

This Site is for DEFENSE AND THE NATIONAL INTEREST.

All told, Citizens Against Government Waste, a congressional watchdog group, toted up $8.8 billion of congressional add-ons to the $318 billion defense bill. "You don't have to be a pork expert," says Citizens' Vice President David Williams, "to realize that this stuff is not crucial to the nation's defense needs."

It is extremely important for everyone to see where the pet projects our Representatives and Senators ARE spending our money on and remembering where it should be going. Then we need to remember this when we vote and we all need to vote!

The things they need to be spending our tax money on are such things. We need a low-cost Prescription Drug Benefit. We need the Patients Bill of Rights passed. We need more NIH funding for research into chronic pain disease. We need more money spent on spreading awareness of RSD and other Chronic Pain diseases.

These issues have sat up in DC for a while with no real actions. These are also issues that many RSD and other groups across the USA have gone to DC to bring awareness to and urge them to support and vote on.

Many patients and many loved ones have asked, "How can I help? What can I do to raise awareness of RSD?"

Well, there are two big ways to accomplish this.

The first is to let our Reps in DC know where we feel their attention and votes should be. At the same time telling them where they need to step in against wasteful spending.

The second way is even easier. Learn about what they are doing in DC and

Make your voice heard. Think about the men and women over the years who fought hard to secure our freedom and our right to vote. Put your vote where it will count and do some work. 47% of the eligible voters cast their vote in 2000.

( www.fairvote.org/ )

Did you vote? Will you this year? If you want to help, please vote. It counts more than you know and every vote counts, even in the primaries. Let’s remind our Reps in DC that we DO care and remind them who they work for.

4. October 1999: Jerry Williams of Little Rock, Arkansas was awarded $14,500 and medical expenses after being bitten on the buttocks by his next door neighbor's beagle. The beagle was on a chain in its owner's fenced-in yard. The award was less than sought because the jury felt the dog might have been just a little provoked at the time by Mr. Williams who was shooting it repeatedly with a pellet gun.

The video is a basic introduction to RSD, what it is, symptoms, how to find more information, etc. It is a great tape to share with your local support group, loved ones, library, and many more places and people. We have sent these all over the country and the response has been wonderful.

To order your copy, simply go to our Awareness Products page on the website and fill out the form or just send in $10.00 to our Groups address.

Keith

(Washington D.C.)--Cold War Roll-On--The Freedom of Information Act has produced some amazing tales on just how the government of the United States spends taxpayer money. One recent story to come to light was about a staged raid on a herd of cattle. It seems a squad of Green Berets, armed only with spray deodorant, snuck into a stockyard and sprayed all of the cows. It seems the object of the mission was to prove how easy it would be for enemy agents to infect our food supplies. The Government Accounting Office shows this raid cost us a mere $150,000...and that was back in the 1950's.

(Taipei Taiwan)--Who Won?--Military officials were red-faced after a recent awards ceremony honoring veterans of a major battle fought on--and against--mainland China. Each veteran was presented with a model jet, but as it turns out, the trophies were made in China.

(Albuquerque New Mexico)--Munchie Run--An officer and one of the Police Department's helicopter pilots are facing tough scrutiny...after using a department helicopter to make a "donut run." The chopper idled in a dirt field nearby as one the officer went inside. Witnesses say he emerged about fifteen minutes later with a box of donuts, got into the helicopter, and the pair took off. Official told local media they are trying to determine if airlifting donuts is against departmental procedure.

From the "Idiot File".

* * * * * * * * * * * * * * *

Bernard Kansky, a United States attorney, ...
has won landmark cases for CFIDS/ME/FM in the past.

Bernard Kansky, a United States attorney, is a founding member of The National CFIDS Foundation, Inc. and has won landmark cases for CFIDS/ME/FM in the past. (Rose v Shalal is the most famous) He's been in practice for over 30 years after working, while in law school, with F. Lee Bailey. About 50% of his practice is now CFIDS related and he offers more than half an hour free consultations to people all across the US. He's often taken cases out of state, since in the United States, unlike Canada, you are dealing with the LTD or the federal government and don't need a local attorney. He's been nominated to the CFS Co-ordinating Committee.

Bernard Kansky has given permission to publish the following letter that he sent to Mary Ellen, Manger of Special Projects for the National ME/FM Action Network. In it, he describes how he advises his clients to deal with the Independent Medical Examination when it is requested by their long-term disability insurer. Here is his letter.

Preparation is essential to afford any patient a better chance for success in these one-sided and arbitrary examinations arranged by the insurance companies or the long-term disability plans

I am an attorney in Massachusetts who has become involved in assisting CFIDS/ME/FM patients through these reviews, in addition to helping them obtain disability benefits initially.

Preparation is essential to afford any patient a better chance for success in these one-sided and arbitrary examinations arranged by the insurance companies or the long-term disability plans.

As you know, the purpose of the insurance company is not to obtain an impartial review, but to obtain a medical opinion, which could justify the discontinuance and/or denial of benefits.

The best ways to prepare for these are to send written certified notice to the insurance company requesting a written reply from the company and/or from the doctor indicating what percentage of his/her practice is devoted to diagnosing and treating patients who are totally disabled by the same conditions as well as obtaining a copy of this Md.'s curriculum vitae including any articles he or she has published which related to CFIDS/ME/FM.

Assuming that this is not timely in forthcoming before the scheduled exam, again in writing, by certified mail, request a continuance of the time scheduled for the exam so that your primary care physician may have an opportunity to review the IME's credentials as stated above.

Also request that any report generated by the IME be simultaneously forwarded to you and your primary care physician and ask the adjuster to put it in writing to you, the basis for the adjuster or the company selecting this particular MD to conduct the IME.

If the materials requested have not been satisfactorily provided, then ask again in writing by certified mail return receipt requested that the exam be continued (rescheduled) until such time as you have been provided with the curriculum vitae etc. of the examining IME and the other materials requested.

You should never attend an IME alone

Try to have them provide you with an MD who is close to your home. The reason is that you should never attend an IME alone. Have a friend or relative drive you to the IME's office and make the time of the appointment convenient for you and friend or relative. The further away from your home the exam is scheduled, the more inconvenient for you to have a friend or relative take you, stay with you, act as sergeant at arms and bring you back home.

Be sure to have the friend or relative who takes you to this visit be one who is outspoken, not shy and able to intervene in your behalf if, as and when he or she feels based upon your reactions that the exam is going to far, has gone too far and/or is too lengthy and causing your to experience extreme discomfort or excruciating pain.

Never go to any such exam without such a friend or relative taking you, staying with you and bringing you home. If during the course of the exam, it is necessary to lie down, use the facilities, or drink a beverage, do not hesitate to have your friend ask as soon as you indicate what (true) reactions you are experiencing during the testing process, which dictates this type of relief. Also, this type and form of relief may be required several times during the IME test.

This is a time for candor not courage. It is imperative that you speak up and tell the IME examiner exactly what it is that is causing pain and/or discomfort to you at the time. If the IME examiner does not heed your explanation, then have your friend or relative intercede (tell him/her off) and explain what it is that is causing the pain or discomfort and/or the need for a break.

Before anyone should even attempt to attend such an IME examination, in addition to the above, you should determine the nature and extent of the testing and the amount of time allocated for the testing. If the time allocated exceeds usual tolerance levels, have the insurance company or the MD examining you break it up into two or three smaller visits, or ask to take home the rest of any written multiple choice exam so that you can finish it at your own more gradual pace.

In the event of the testing process becomes so overwhelming and you feel extremely sick or are having problems with overwhelming pain, weakness, exhaustion or light headedness etc., and if absolutely warranted, don't hesitate to let your friend or relative take charge of the situation and call an ambulance on your behalf to take you to the nearest emergency room. No examining MD cares to have any patient who walked into this office be carried out of his office on a stretcher to an ambulance with sirens wailing and blue, red and yellow lights flashing.

Be sure to find out what the IME's supposed "speciality," is and ask him/her how many time he/she has performed IMEs for insurance carrier or solely for examination for opposing counsel and what percentage of times did he/she agree that the patient suffered the symptoms complained of so severely that he/she agreed that the patient was unable to engage in and more importantly maintain gainful employment activity.

Prepare a list of all of your symptoms and a brief explanation as to how each symptom, separately and in combination effect you so that you are unable to attempt and maintain regular employment activity. Give the IME a copy of this list and the explanations as to the disabling effect of each symptom alone and in combination.

Try to analyze it as experiencing the worst days of the Asian Flu or whatever the IME may understand, 365 days a year, year in and year out, with unpredictable periods of unexpected relief for occasional short durations during any week or month, but that otherwise you are generally (not totally) confined to home for most of each and every day by reason of your physical condition and the medications you try to take to alleviate your condition.

In addition to symptoms, list all medical testing which has been shown to be positive. List all medications which you are taking and have taken over the course of the disability and how each medication, if truthful, had a side effect which in addition to your regular symptoms would prohibit you from working.

Example: Sometimes the pain is so severe that you are unable to get out of bed even to eat a light breakfast. As a result you take medication to take the edge off of some of the pain. The side effects of the medication are such that you become drowsy, sleepy and have difficulty staying awake and to attempt work under those conditions would pose a severe hazard not only to you but also to public as well as your co-workers.

More that likely, the IME will limit your responses to staccato-like answers, allowing you no more that a yes or no answer. I.e. do you ever drive; do you ever make meals; etc. the IME will usually not allow you to explain what really disabled you and how limited you are in doing these chores and not being able to know or plan when you might be able to attempt them.

In addition, if you have done your homework and you know what the IME's supposed speciality is, then you can see another M.D. with the same speciality who knows and understands your disability and have that MD prepare an updated report on your condition to provide to the IME. This should have a bearing on the IME (hopefully) and his/her report may be more inconclusive than negative. Although do not expect miracles.

Also, be prepared in other ways. If the curriculum vitae of the proposed IME MD does not seem to be suitable for evaluating your condition, then in writing by CRR, request the insurance company provide an IME MD who has more background, training, experience and treats patients who have been totally disabled by CFIDS/ME/FM i.e. the disease and condition which disables you.

Have the friend or relative who takes you to the IME, keep accurate and simultaneous notes

Keep some log as to the correspondence between you and the insurance company and also have the friend or relative who takes you to the IME, keep accurate and simultaneous notes and records of the time you went into the examining room, the nature of the exam performed, the questions asked of you and how they were asked [see above-staccato questions subject to "yes" or "no" without opportunity for explanation] and what if anything else was provided to the IME MD [schedule of symptoms and medications and how they prevent work and/or updated confirmatory report of primary care physician indicating total disability from working and the reasons therefor.]

Finally, do not be surprised when ultimately you see a report, which appears to have been prepared for some other patient with some other illness. You might also ask the IME MD what he is being paid to perform the exam and report and be sure to record it in your logbook. Also be sure to record in your logbook, any other conversations between friend or relative and IME MD and or between you and IME MD or any member of staff.

Note from Keith. This article is the best I have come across on this subject. Mot people will not discuss it or if they do, not with such clarity and depth. I urge you to read this several times, especially if you are going to have an IME performed. This at least puts us on a level playing field. Thank you Bernard Kansky,