From Our Readers – Comments & Suggestions 09-14-11

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“Top 10 Tests for ME & CFS Labeled Patients”

Drs. Lapp & Black’s Hunter Hopkins Center Facebook site suggested, “If you are in a disabled state and need to win your disability case [many of you] will find this list helpful. Give it to your doctor who is helping you with your disability case.”

The list, put together by Steven Du Pre, shares information that many doctors who don’t specialize in ME/CFS probably wouldn’t be familiar with. It contradicts the notion that there aren’t any tests for ME/CFS.

Find it at the National Alliance for Myalgic Encephalomyelitis website ( –  – J


Wish the Commercials Would Clarify How Serious FM Is

I just saw a new fibro commercial… at least new to me. I kinda wish they’d make one that shows that most people don’t get to feeling so well, that shows how serious it is… and give tips that educate families. – B


Five Kinds of Bad ‘Helpful Advice’

This is National Invisible Chronic Illness Week (Sep 12-18), so visit to see what’s going on, connect with others, and read some of the interesting articles featured there. (The event and website are sponsored by Rest Ministries, a charitable organization that specifically serves those with chronic illness, founded by Lisa Copen.)

We liked Lisa’s post of September 6 – “Is Living With Illness Choosing to Give In?” – which explores her philosophy regarding coping, and the maddening, ill-informed types of advice that many people offer those with chronic illnesses. For example, she observes, “well known magazines written specifically for those with certain illnesses, even those, are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and is quoted saying, ‘I chose to never give up.’ I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store.”



September, Interstitial Cystitis Awareness Month

IC patients struggle with symptoms very similar to those of a bladder infection including urinary frequency, a constant sensation of urgency, pressure and/or pain as their bladder fills…yet their urine cultures are negative. You can just imagine the frustration and the profound effect this condition has upon the patients’ ability to function at work, their ability to socialize, travel, and even upon their sexual function. It can be a devastating blow to their quality of life!”

The cause of IC is unknown though research released earlier this year from Northwestern University suggests that one strain of e-coli (UPEC) may trigger a “pain response” that persists after the infection has been treated and bacteria is no longer found in the urinary tract. Other patients report that their symptoms began after a pelvic trauma or surgery. Genetics may also play a role for some patients. Tragically, a growing number of young adults around the world have developed IC like symptoms after using ketamine, a drug popular at raves and parties.

Our website ( provides tools and resources that patients can to make a positive change in their community, including various educational resources, posters, sample proclamations and the creation of CME training events. Patients are encouraged to start local support groups and to reach out to patients in need in their community. Patients without health care coverage can find a searchable database to locate free or affordable medical clinics and drug assistance programs. Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets are also available.

Interstitial Cystitis Network (


Research on Flu Shot Effects for People with Autoimmune Disorders

Studies show people with autoimmune conditions benefit. Read on to learn how. You may be basking in the sun right now, but before you know it fall will be here, with flu season right at its heels. That means it’s time to start thinking about whether to get vaccinated against the influenza virus. Two new studies may help with that decision. Each takes a closer look at the effect of flu vaccines on patients with autoimmune diseases. Read more HERE

Arthritis Today (


Genetically Altered T Cells that Kill Cancer Cells (Only)

Re: “Cancer Breakthrough: Genetically weaponized T cells kill leukemia, provide ‘road map’ for attacking other cancers”

…I pray this will lead to something good, we so much need to hear “WE FOUND IT.’ Crying seems to be a way of life for me now; life would be wonderful for so many of us whose family is touched by this demon cancer! – K

Dr. Bell on ME/CFS with Pain: A Few Reader Comments

Re: “Andrea’s Revolver”: When ME/CFS Includes Pain (by Dr. Bell)

Finally someone who makes sense. Andrea sounds just like me (except for the revolver). I have the same symptoms but never connected them to CFS until I read this article. Wow finally, someone who “get’s it” or “gets us.” Now if you can convince the rest of the medical community. I have the migranes, racing pulse rate, pain all over, fatigue doesn’t begin to describe how exhausted I am. The pain, I am so thankful finally someone mentioned CFS’s patients are not drug seekers, and do have PAIN! I wish I could get a Dr. in my area to understand the “pain” and do something about it. No luck so far, don’t know what to do. One thing that does work is crying, haven’t run out of tears yet. – K

Bless Dr. Bell Again for his persistence. I’m the mom of a 33 yr. old young woman who has had CFIDS most of her life, but not diagnosed till 16. Dr. Bell was the voice of reason that vindicated us after all the problems that our daughter had and no doctor could explain. Reading Andrea’s heart-wrenching story was another helpful light in the tunnel. She’s been living with orthostatic hypotension since around 13 yrs. old, diagnosed by Dr. Lapp at 18 (tilt-table test) and has dealt with the same issues caused by not enough blood traveling through the system, and esp. not enough to the brain unless she’s prone! You can’t live your life that way. At 31 she has developed left temporal lobe epilepsy, with seizures that follow the blackouts from the orthostatic hypotension. Has anyone else run into this problem? We live in Pittsburgh with a huge award-winning medical community and we haven’t found anyone that knows what to do with this condition. One huge blessing is we found a doc willing to prescribe LDN (low dose naltrexone) and it has lowered her pain levels, and withdrawal type of symptoms to a certain degree. A grateful and praying mom… – S

•  This article brought tears to my eyes, just to think that there are caring medical professionals who do more than poke another useless NSAID toward us, or make another appointment in 3 months after accomplishing nothing. I realized a long time ago that no matter how badly I hurt, no one else felt a thing. Finally, Dr. Bell seems to feel our pain, or at least acknowledge it. God bless him and lead him to a cure, breakthrough, or palliative. – K


Tips to Help Doctors & Their MCS Patients Ease Office Visits

The September issue of MCS America’s newsletter, MCSA News, published an article titled “Accommodating chemical sensitivity in the Doctor’s Office.” It includes helpful guidelines for doctors to make their patients with chemical sensitivities in their offices. Quite a few simple but good tips, like scheduling chemically sensitive patients as the first appointment of the day so they won’t have to wait in a room filled with perfumed patients, for example. And not responding to sensitivities by telling the patient “try not to think about it,” or “just relax.” – U


On the Relationship Between ME/CFS and Fibromyalgia

Re: “Dr. Lapp on CFS versus FM: Twins, Cousins, or Just Acquaintances?”

As you know, no one knows for sure what causes either of these conditions but we do know that FMS often travels with lots of other conditions, including, but not limited to, RA, Lupus, MS, and CFIDS/ME. I can look back into childhood and see omens of things to come, but it wasn’t until 1990 that a mycoplasma triggered my CFIDS/ME full blown. In 1999, I was in an auto accident and it appeared to trigger my FMS full blown. I do not believe these “caused” my illnesses but rather triggered them in a genetically-predisposed person. My Mom had FMS; I have CFIDS/ME, FMS and, apparently, Sjogren’s Syndrome and interstitial cystitis; and both my daughters have FMS and IC. In other words, it runs in our family. Some cousins have had other strange immune conditions too….

My specialist draws a Venn diagram of three intersecting circles, one labeled, FMS, another labeled, CFIDS, and one labeled, IBS. A person can suffer only one, two or all three but there are overlapping symptoms where the circles intersect. Of course, all this overlapping can make diagnosing a nightmare. As I get older, I seem to pick up more “travelers” in the form of what appear to be related conditions. – M


Why Aren’t Foot & Leg ‘Tender Points’ in the Chart?

Q: I’ve been meaning to ask this question for a long time, but I am wondering why the legs and feet are not included in the FM Tender Points Diagram. When I was first diagnosed, they were. Even Dr. St. Amand shows the tenderness in the thighs as being the first to heal with the Guaifenesin Protocol. Thighs, calves and feet are three of my main tender points. – L

A: We don’t know, and when we asked NFA co-founder Karen Lee Richards about this, she said she doesn’t remember ever seeing a chart indicating tender points in these areas (though she observes that her FM pain began in her feet and legs, and believes many people think their pain may be most severe there). But we wonder if you may be thinking of myofascial trigger points, which are described as a nodule or knot in a tight or spasming muscle that can cause pain to shoot out to a broader area or can cause a twitch. Theoretically the pain of ‘tender points’ does not radiate. There are many potential trigger points in the feet, calves and legs. (See video.)


One Way Counseling Might Truly Help

I’ve figured out what all the insistence on counseling is for. It came to me, not through counseling, but one of those AHA! moments we have. The only way to live comfortably with CFS/FM/ME…whatever, is acceptance. I quickly assure you this is not instead of hoping/praying for a cure or better days, but, for me, to STOP COMPARING what I can do with what others my age can do – or older. It’s like any budget. We must live within our financial means and we MUST live within our physical means. Not as we were, but as we are.

When I take it day by day, accepting that I may never be as I was (OH, that’s hard!), I do better. I still hope, I still try (gently), but I spend more time sitting, watching clouds, smelling flowers these days. I ask myself “If I do that today, can I do that tomorrow?”

My house isn’t nearly as clean as it used to be. My cooking skills have been exchanged for Right Eating, for a Candida diet right now. My friends now are mostly online. My family is somewhat tolerant, sometimes. It’s hard, especially when you live alone. Almost anything that gets done must be done by us. That takes almost all I have, and more than some have right now. So I accept. Someday I hope to be more able but right now I am what I am. And that’s not all bad. – M

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 plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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