From Our Readers – Comments & Suggestions 07-14-10

Will the FDA-NIH Paper Reporting XMRV in CFS Blood be Published?

We can’t bet on it yet! I don’t think the Alter et al. paper has a guaranteed green light at all. The CFIDS Association reported that their confidential sources at PNAS assured them the paper would be published “within weeks.” But Mindy Kitei’s info from the editor-in-chief on her CFS Central site indicated the revised paper would be returned to the PNAS editorial board for review “within weeks.” So I still urge everyone to sign the petition [XMRV: Allow Science to Progress] to demonstrate we’re not going to stop the pressure until all the science is made public! – H   


27 Reasons a Person with Lyme Might Have a Negative Test

In the search for the CAUSE of your symptoms, it is very important to know that Lyme testing is very unreliable. Lyme is a complex bacteria… a spirochete. Lyme should NEVER be ruled out by just a negative lab test. Many doctors mistakenly do this all the time, leaving many people undiagnosed and suffering forever. Many, many people with Lyme have only had negative tests. Just check out the Medical Questions board at []. Lyme is a clinical diagnosis based on history, symptoms and exam, not a lab test. Please check out the link to read many reasons why a person with Lyme might have a negative test. – N


Website with Helpful Alzheimer’s Resources

Memory Commons ( is an online resource for those dealing with dementia – physicians, physicians in training, and other healthcare professionals as well as patients and families supporting aging adults. It doesn’t offer much in terms of research or news, but there is a collection of practical articles and videos for families & caregivers. Many of them, like “Activities for the Person with Alzheimer’s” were very helpful for our family. – A


List of Free/Low Cost Medical & Prescription Help

Below* is my list of resources for medical care and prescriptions. Keep in mind that many of the programs for free or low cost prescriptions have paperwork and requirements that you must meet before obtaining prescriptions. Scroll down to see a list of patient organizations that might help you. Good luck and hugs. – T
[* Posted as a ‘sticky’ on ProHealth’s Health Message Board –]


State Plans for People with Preexisting Conditions Enrolling Now

In the US, Obama’s health bill allocated $5 billion to operate high-risk health insurance pools in every state. Sign-up started July 1 in many states. Some estimate there’s only enough money to cover 0.5% (1/2 of 1%) of the uninsured, and enrollment is first-come, first-served. If you don’t enroll before the money runs out, you may have to wait until 2014 to get health insurance.

The government’s new website with more information about these pools and other health insurance options is These new high-risk pools cover all pre-existing conditions right away.

The majority of the premiums are paid for by taxpayers. You may only have to pay about 1/3 of the cost. Premiums can vary widely depending on which plan you choose, your age, and location. For example, in Colorado premiums are between $120 to $551 per month. In PA, there is only one plan and the cost is $283.20 per month regardless of age.

The website allows you to click on your state and get more information about premiums and plan options there. – F


Check the NIH’s Site for Clinical Trials

The National Institutes of Health (NIH) has launched, which seeks to connect people who want to participate in clinical trials with researchers conducting the studies. The user-friendly site will cover an array of diseases. Both researchers and patients can sign up. Whether or not they will include CFS is unknown. For more information: – K


FM-CFS Canada’s Awareness Videos on the “Two Faces” of FM & ME/CFS

FM-CFS Canada has developed many resources for patients and guides for healthcare professionals who help them. Their latest venture is a “video magazine about living with FM and CFS.” To watch the first two segments, go to and click on Video Part 1 or Video Part 2. – E


Recommending Toni Bernhard’s Upcoming Book, How to Be Sick

Toni Bernhard has ME/CFS/FM and wrote this “Buddist-Inspired Guide for the Chronically Ill and Their Caregivers” from her bed. It’s supposed to be ready to go in September (either e-book or paper), and you can preorder it now. Or do what I did – ask your library and/or support group library to buy it. Lynn Royster, who directs Dr. Jason’s Chronic Illness Initiative at DePaul University, calls it a beautiful “lifeline to those whose lives have been devastated by illness.” She knows what she’s talking about. – L


$270,000 XMRV Study at Cornell Just Underway

The National Institute of Allergy and Infectious Diseases (NIAID) has awarded $269,496 for fiscal year 2010 to an XMRV research project at Cornell – “The Relationship of XMRV to Functional Status and Co-Infections in Chronic Fatigue Syndrome.” The project, led by principal investigator Maureen R Hanson, officially started June 15, 2010 and is expected to be finished by May 31, 2012. To read the abstract of the project, go to and click on the “description” tab. – R


FDA Approves New Pain Patch

On July 2 the FDA approved a new Butrans™ transdermal pain patch – a Schedule III controlled substance (opioid) that has “less potential for abuse” than Schedule II drugs like oxycodone. It is for people who need to have 24-7 pain management for an extended period of time. If you have moderate to severe pain you might ask your doctor or pharmacist to investigate how it might stack up against other pain patches/meds. – S

[Note: For more information, see Karen Lee Richards’ sharepost on Butrans, at]


UCLA Trial of Iyengar Yoga Treatment for IBS, Now Recruiting

A study at UCLA Pediatric Pain Program is recruiting young people ages 14 to 26 diagnosed with IBS to test the benefits of a six-week regimen of Iyengar Yoga. The trial description was just posted July 7 on

[Note: Iyengar Yoga focuses on identifying and correcting postural misalignments/muscular weaknesses to promote easy movement, strength & relaxation. Uses ‘props’ like chairs and wooden blocks.]


How I Describe Fibro

…Fibro is not big; it’s not a stick in the eye or a dropped anvil on a bare toe. It’s falling asleep outside on a warm summer day, slight breeze blowing, soft grass beneath you. And waking up covered with fire ants being eaten by an enraged Tasmanian devil that some character from “Deliverance” just set on fire with a flame thrower. – F


My FM Pain, Fatigue, Insomnia, Arthritis… was Lyme

My biggest mistake was thinking that fibromyalgia was my final diagnosis, and I always researched “fibromyalgia.” After 21 years, I started looking at it as a symptom of a larger picture, and I found my answer. 99% of doctors do not know how to recognize, diagnose or treat chronic Lyme. Many Dr’s mistakenly rule it out when they see a negative test result, which is very wrong.

Many people do not consider that they could have Lyme because they already have a diagnosis which seems correct. It is important to remember that Lyme is a complex bacterial infection…. A chronic Borrelia burgdorferi infection commonly causes pain, fatigue, insomnia, arthritis, easy musculoskeletal injuries, muscle spasms or twitches, headaches, and many other symptoms. Please take a look at this info which contains a great symptom list (pp 19-24):


Views on Pain Management and “Cold” Doctors

•  I want to a pain management Dr. who was so distant, uncaring, that I have to look for a new one. She did not even give me the proper meds I was taking. My GP stopped all of a sudden giving pain meds, so I gave it a try for a while without pain meds and I’m in worse shape than before. (It was he that sent me for pain management.) I hate to call it doctor shopping, but I think I am entitled to see a pain doctor who I feel comfortable with who listens to what I have to say and takes time to understand it. They make people in pain seem like common criminals and druggies. What ever happened to the oath doctors took to help people stay pain free, and what about helping someone have a good quality of life?…. I think these Drs think they are going to lose their licenses for giving a few pain pills out. Where is the care anymore? – M

•  Being a pain doctor must be incredibly hard. It’s not easy having patients in pain – all day, day in and day out. And pain patients tend not to be the happiest people in the world too. I know from experience working as a palliative care nurse. If you take on everybody’s pain and anguish, you will get burnt out very very rapidly. Sometimes distancing yourself is easiest thing to do. Just because a person appears not to care, doesn’t mean they can’t help. I have had some very friendly nice doctors with great bedside manners who have been absolutely useless.

Also, working in the area of pain management, there will be lying patients who are simply seeking their next fix – the urine tests and pain contracts exist for a reason. Pain medications also have a high street value. Unfortunately, all patients have to be treated the same. Don’t feel like a criminal because they ask you to sign a contract and take a urine test, it’s a protocol they follow for all patients.

You don’t have to like a doctor. If you feel you have described your symptoms and pain adequately, then it is time to move on. The best thing to do is describe your pain and how it affects your activities of daily living, what eases it, what makes it worse etc, etc. If you feel the doctor hasn’t listened or is misinterpreting your pain, then ask for a new pain doctor. – K

Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare program or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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