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Hot Topics & Readers’ Notes – 06-20-12

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Mass CFIDS/ME & FM Disability Program Handbook

The information in this 81-page booklet, offered in PDF format by the Massachusetts CFIDS/ME & FM Association  (, could be invaluable for patients “who cannot work and are seeking financial stability.”

You can view and download the whole booklet or individual sections, which describe and outline eligibility and helpful application information for SSDI, SSI, emergency aid, food stamps, fuel assistance, and other programs.

The site offers many other disability information resources, including attorneys’ advice, patient advice and tips, insights regarding attorney fees & claims, and much more. 


Fantasizing About More Understanding from ‘Disbelievers’

Re: “Helping Others Understand ‘Invisible’ Illness: What’s Enough and What’s too Much?” – (Nobody Understands), by Deborah Barrett, PhD, author of the new book Paintracking: Your personal guide to living well with chronic pain.

Understanding! How many times have I wished that someone REALLY understood my experience? It would sure make life easier (and reduce my need to explain and/or feel awkward). I know I have fantasized about certain people awaking feeling like me – this would change their view no doubt.

But this article got me thinking about what it might really mean, however, if people really “got” my experience. I agree that we never really understand each other, and that it is up to each of us to decide what to share. I would not want my children, for example, to know how much I hurt all the time. It’s better that they understand that I sometimes need a rest. Otherwise, they’d feel bad too.

Or my boss. She might not trust that I can do the job. So sometimes I do benefit from being able to keep it “invisible.” But I know I’ll still fantasize for more understanding from disbelievers. Especially when I’m being evaluated for disability, or judged for parking in handicapped from random strangers. – M

Wonderful article! So happy to see this piece from Deborah Barrett (I love everything she writes and am currently reading her book, Paintracking). This is a point of view (the complexity of seeking understanding of our illness) that is so unique and needed. Much food for thought! I wrote an article on a related topic – “To Tell or Not to Tell” (at – and it’s so valuable to realize through Deborah’s article that we have the power to make choices and exert some control over how we show up in the world. Thank you for this article! – L


Canadian Study Seeking Women with Interstitial Cystitis (Bladder Pain Syndrome)

This study, announced through the IC Association website HERE, is a first-in-human phase I study evaluating a new drug designed to “target the root cause of IC-dysfunction of the bladder lining” – which it is hoped will provide an improvement over treatments that provide only symptomatic relief. The four physicians participating in the study are located in Ontario, Canada. Qualifying participants will be paid $1,050 for completion of the study, which require six study visits for a total time commitment of approximately 15 hours.


FM Drug Duloxetine (Cymbalta) for Chemo-Related Pain? Not For Everyone

Re: ‘Fibromyalgia drug’ duloxetine may help many with chemo-induced pain – by interrupting pain signals rather than attempting to treat nerve damage.

No thank you to Cymbalta. I have Fibromyalgia, and a lot of… neuropathatic pain. I was standing long hours at work, and …tried Neurotin, Lyrica, and about 9 months of Cymbalta. I started out taking 3 times a day, but it made me so sick. I was also falling asleep driving to work, and also at work. I was so mixed up, I couldn’t perform my job. I talked to my Dr. and told him how sick I had been since taking this medicine, and he started cutting the dose in half, then eventually took me off. I have talked to many people about this drug, and we all had bad side effects, and with the side effects, falling asleep driving, concentration, and just so sick, many decided it was a bad drug. – A


Dr. Mikovits’ Criminal Case Dismissed by DA

On June 12, news spread through the neuro-immune illness community that the Whittemore Peterson Institute’s criminal case against virologist Judy Mikovits, PhD, their former director of research, had been dismissed for insufficient evidence by Richard Gammick, DA of Washoe County, Nevada. Though the civil suit apparently remains, Dr. Mikovits says she’s happy to be going back to doing the one thing she wants to do, which is find a cure for chronic fatigue syndrome, according to Tammy Riggs, one of her defense lawyers.


Surprises Regarding Symptoms of Non-Celiac Gluten Sensitivity

According to a report on the website, a recent Scandinavian study of gluten-associated symptoms in two groups – people diagnosed with celiac disease (affecting villi in the gut) and people with non-celiac gluten sensitivity – found that the non-celiacs actually suffered more abdominal and non-abdominal symptoms.

Further, both groups scored low on somatization – the same as healthy controls. (Somatization being a word to denote psychologically-based physical symptoms.)


The Mystery of FM Patients’ Differing Heat & Cold Sensitivities

Re: “Temperature-Pain Sensitive? It’s Probably Your Brain, Not Your Imagination” – a study of 80 healthy subjects that found different temperature sensitivities corresponded with specific differences in brain structure

Although we fibromites have so much in common, in spite of our varied symptoms, I am intrigued by the way some people desperately need the heat and suffer in the cold, and others like myself can wrap up against the cold, but suffer terribly when the weather gets too hot (over 80 deg) and especially when it becomes humid.

Isn’t it amazing how long it has taken for scientists to prove just about everything is down to one part of the physical brain or another, especially in whacky conditions like FMS and CFS. It does seem to offer some hope that eventually they will be able to identify and diagnose these conditions using MRI  scans and remove the ambiguity that some medics still cling to. Since male and female brains are significantly different this could presumably explain why some conditions are preponderantly male and others female. – S


Still Collecting Gently Used Electronics for the Isolated

Do you or a company you know have “gently used laptops, netbooks, tablets or e-readers like Kindle etc.” that could be donated to isolated people with chronic illness? This is a great idea for support groups to adopt in any part of the world, but in particular Michelle (“M”) at CFS Solutions of West Michigan ( is asking for your help. She writes:

“I have a patient who really needs a laptop. If you could post this information on your walls to share so that more people will become aware of the need I would appreciate it.

“If any of you work for or know of a company that is changing out its laptops from their employees and would be willing to donate them, please tell them of the need in the ME, CFS community. We have many patients who are totally isolated and a laptop is a lifeline to the outside world.”


How Much of YOUR Federal Tax Bill was Spent on Health Research?

You can go online and see exactly how your federal tax dollars are spent. Go to this website, enter a number for a yearly amount of taxes paid (maybe what you paid for 2011), and the program instantly shows how much went to the different tax supported programs, including health research.


Swedish Study of Fibro Patients Who Work

Re: Swedish study of fibromyalgia patients’ work-related difficulties 

This study report offers a good picture of how most struggle hard to remain at work, often with little energy left for other activities. And what helps them most to stay productive in terms of supervisors’ attitude and accommodations.  As for whether remaining actively employed makes for better health status over the long term, the answer for most seems to be ‘no.’


Dr. Eleanor Stein’s New Manual for Living with CFS/FM/MCS

Canadian physician Eleanor Stein, MD, ( has published a highly detailed “manual” for living with MCS, ME/CFS, and fibromyalgia – Let Your Light Shine Through. At 260 pages, it steps you through a 4-month program with symptom management suggestions and self-help tools – backed by enough references to make it acceptable and helpful for your physician as well as yourself. Price in Canadian $ for the electronic form is $20; $22 for the CD, and $37 for the paper version. A deluxe color version in a 3-ring binder is $44.


On Uncertainty for Those Living with Fibromyalgia

Re: “Uncertainty… about Everything: 20 Rules for Living with Fibromyalgia” by Zona Taylor (at

Quite helpful. Thought I had considered everything. Guess what, we can always benefit from someone else’s experiences! …My husband actually printed it out when I sent him the link! Now, no excuses for me not to make some good changes. – J


Note: This information has not been reviewed 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 you healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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