From Our Readers – Comments & Suggestions 06-08-11

Promising News for Interstitial Cystitis, Bladder Pain, Pelvic Pain

The Interstitial Cystitis Association newsletter (ICA news at reported on several very hopeful papers presented at the May 16 American Urological Association meeting in Washington. For example:

A team at Northwestern University, “which is researching  the relationship between pelvic pain and urinary tract infection (UTI), found that if they treated a nasty UTI in mice with an antibiotic, the infection went away but the pain didn’t. Then, they instilled a harmless version of the same bacteria into the bladder or vagina, and not only did the infection stop, but also the mice didn’t show any signs of pain. That means that we might see a probiotic in a vaginal suppository that could do the job that invasive procedures or strong painkillers do now.”

Italian researcher Massimo Lazzeri’s work with a promising novel non-opioid pain drug included instilling it into the bladders of patients with IC pain “for whom nothing else worked,” reducing their average pain score from 7 to 4 on a 10-point scale. Follow-up at one year found about half of the subjects “did not need any more drugs.”

“A new cannabis-related compound called GP1 attaches only to one kind of cannabinoid receptor – apparently the critical one for making a difference in bladder pain. It reduced the severity of pain from bladder irritation in mice and also inhibited inflammation.”

Interstitial Cystitis Association


Florida International University Will House First NEI Center

Seed money contributed to a new endowment fund at Florida International University in Miami convinced that institution to agree to house the first NEI [NeuroEndocrineImmune] Research & Treatment Center. As the endowment grows, it will fund construction of an NEI Center™ within FIU’s Department of Molecular Microbiology and Infectious Diseases. Patients will include FM, ME/CFS, MCS, Lyme, GW Illness, and more. [See “Newly Launched Endowment.”]


Grief Therapy Helped Coping with Lost Lifestyle

[In response to a poster who asked for “suggestions on how to deal with family and friends when they don’t acknowledge our distress.”]

Grief therapy helped me to cope with the loss of my former lifestyle. We waste our energy trying to convince skeptics that we are sick. We need to learn to purge toxic people from our lives. If it’s family, it’s more difficult. I just avoid people who are energy drainers. One exception is a friend that I stood by through her cancer treatments. I told her, “Pity the poor person who gets sick and has to put up with the eye rolling and lack of empathy.” She got the message. Each situation and relationship requires different techniques. Sometimes, we just have to stand up to insensitive people. – M


Cleaning Out Toxic Relationships

“Get the toxic people outta your life.” Best advice I ever got from a therapist. Not much point in arguing with most people. If they are convinced the Earth is flat, not likely to change their mind. Very little one can do if they are convinced that you would get well if you just: had a positive attitude; exercised; got married; got divorced; got a job; moved to a better climate; etc. – R


That Big Gap in My Resume

Now that I’m finally feeling up to working and my doc says to give it a try, I keep getting the “Is it true you haven’t worked for 10 years?” followed by a quick change of attitude from ‘You’re an ideal candidate”’ to “That won’t fly” (actual quote). I have the years covered with being a pastor’s wife for all those years, just like someone might have been off raising their children, but even that doesn’t help me get an interview. – P


Adrenal Disorder Information?

Q: What can you tell me about adrenal gland disorders? – F

A: This may be a good starting point for you – a handout from Dr. Sarah Myhill’s educational website ( on “Underactive Adrenal Gland – Stresses and Problems with the Body’s ‘Gear Box’.” 


Anything New Re: Dr. Enlander’s Treatment Protocol?

I came across this article in the Irish Voice (Nov 10, 2010) on Dr. Derek Enlander titled “Irish doctor says chronic fatigue syndrome can be cured.” Actually he seems to have said he hopes to eventually find a cure. But it also reports he “initially designed an injection that he has been treating patients with, and more recently he began supplementing the injection with a substance called Immunoprop, an immune system adjuvant.” He apparently also said 65% of his patients “actually recover from the treatment.”

There’s a little information on his website about Immunoprop (“an amino acid food additive that contains glutathione, L-cystine, picamilon and trace selenium”) and another supplement called ImmunoPlus that he uses to help the methylation cycle, but if he’s helping patients, it would be nice to hear more about this therapy and the research he’s doing now. The link to Immunoprop’s maker indicates it might be an over-the-counter product. Dr. Enlander practices in New York City, but is a native of Northern Ireland and travels regularly to the UK to see patients there. And he considers CFS and fibromyalgia interrelated. – L


Write a Letter by June 15 to Avoid Demeaning DSM-5 Psychiatric Diagnosis

The Coalition 4 ME/CFS has organized a letter writing campaign on behalf of FM, ME/CFS, GWI, IBS, and MCS at risk for future diagnosis with, essentially, hypochondria/a problem with disproportionate concerns” about your symptoms. Two simple steps are required to submit a comment on this issue to the American Psychiatric Association – sample text & links HERE (scroll down).

The Call to Action:
The American Psychiatric Association (APA) is responsible for issuing the Diagnostic and Statistical Manual of Mental Disorders (DSM). The APA is developing a new version of the DSM, the DSM-5 and is currently holding the second round of public review. The DSM-5 update could have profound implications for ME/CFS patients.

Why this call to action is important to you:
Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.

Your input is needed before public review is closed on June 15.

Coalition 4 ME/CFS, June 1, 2011


Topical Pain Spray Not for Those on the Guaifenesin Protocol

Re: “Aches and Pains? A Simple Solution You’ll Love”

Please note: Any FM patients who follow the Guaifenesin Protocol will not be able to use this pain spray because of the ingredient Menthol. As you probably know, menthol (mint) is one of many botanical substances which block the effectiveness of the guaifenesin. Too bad, I’d have liked to try it.  – D

ProHealth Note: We have added a note to the article highlighting the need to avoid salicylates on Dr. St. Amand’s protocol. Thank you for the reminder, which people taking guaifenesin as part of the carefully defined Guaifenesin Protocol (rather than for its airway-clearing benefits) are taught as a fundamental principle. See Dr. St. Amand’s “Salicylate Quick Reference Guide”.


Fatigue Should Be Routinely Suspected as Precursor to MS

A review of 5,305 US multiple sclerosis patients’ claims histories going back three years before they were diagnosed found that more than half of them first saw their doctors for fatigue only with no other symptoms of MS during that time, and for the most part were diagnosed first with “CFS.” They figure many more cases belong in this group, since many doctors don’t record fatigue with an ICD-9 code in their patient charts. Now they’re going to see if the MS patients who start with fatigue only are different than other MS cases, and they’re going to study how often fatigue is the advance warning sign of RA, thyroid disease, and other conditions. [See “Fatigue Often First Symptom of MS”] – S


A Donut Pillow Can Help Lower Back Pain

I’ve been going through new stuff re: lower back… and sitting has been “H” for a few weeks. Bought a donut pillow the other day, and it’s amazing the pressure it takes off the lower spine. – J

Note: One product like this with a high customer rating to consider on Amazon is the Carex Inflatable Ring Cushion.


Online Tracking of Daily Activity Impact on Arthritis

The Arthritis Foundation is offering a free self-management tool that lets you record your daily activities and symptoms in a private online account. To learn about the TRACK + REACT tool, click HERE.

Arthritis Foundation (


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, contion 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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