From Our Readers – Comments & Suggestions – 08-25-10

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For College Students Coping with Mental Health Issues

•  Below is a helpful government brochure which may help college students who have mental health disabilities. It is part of the Accommodations and Compliance Series and is entitled: "Higher Education Accommodations: Students with Psychiatric Disabilities" – – T

•  Reality (Regarding College Accommodations for Depression, etc.) I just retired on disability from a major NYC university. Depression was noted as secondary to long standing medical issues. SSDI etc. cannot quantify depression like they cannot quantify pain, so the standard of proof is very high, no matter what doctors may write. You might expect that an intellectually developed bunch of folks that work in such places would implement 'accommodations' for those employed, particularly when numerous doctors request them.

My former employer followed the ADA guidelines by the letter, not the spirit. And that is something you need to know and understand long term as well. My doctors avoided as much as possible mention of mental health because of the above mentioned points and also because mental health issues are still considered behind closed doors as character weakness, laziness, lack of will, etc.

A [student’s] request for mental health accommodations will need to be documented… by treating doctors. A letter stating 'Depression' is rarely enough unless perhaps Dr. Eric Kandel wrote it. [Nobel Prize winning neuroscientist.] 🙂 If all the documents are collected and presented for review, they may ask for a list of what [a student] needs to supply effective 'accommodations' for him/her. All of this back and forth will remain in the college file. If the student withdraws or wishes to transfer to another college, this information will follow and the student will need to explain how he/she is now able to complete her studies when previously that was not possible or so difficult as to require accommodations.

What's on the law books is not necessarily the reality on the ground. If the student  has not yet entered college, I would strongly urge doing some research about the mental health provisions that the college choices normally provide. If the student is already attending, you should still investigate what the options are at the school, before speaking to anyone about accommodations.

Some schools have more intensive care for students than others, such as arrangements for sliding scale mental health services for students during the academic year as well as faculty or residence hall/dorm supervisors who are trained to watch out specifically for depressed students. However, the services offered would only be as effective as the area facilities are noted for… or lacking thereof. If you can avoid asking for something that may possibly stigmatize the student, that is best. – D


Clever Little Gift for Hot Flashes

My husband bought me this little two dollar battery operated fan that hooks on to my belt loop, and it is wonderful. Now I don't have to run around the house to turn on a big fan – although I do use a big fan at night. – P


Potassium and High Blood Pressure

This could be critical for some of us with higher BP. Some of us may be somewhat deficient in potassium. Potassium rich foods are bananas, white potatoes, [whole grain] breads, avacodos and others. I kinda stopped eating bananas, don't eat white potatoes and hardly any breads. Avocados on occasion.

I was talking to someone else about this issue and kinda realized MAYBE I need potassium. I upped my potassium daily supplement the last couple days and my BP was amazing. AS ALWAYS DO YOUR HOMEWORK. Here's a good article: “Potassium Overdose and Underdose” – J


VA's Concessions Regarding Medical Cannabis

Karen Lee Richards (at helpfully explained where the Veteran's Administration now stands on medical marijuana use. [See "VA Relaxes Medical Marijuana Rules."] She points out that some vets have been forced to give up their rightful healthcare benefits to get the pain relief they needed. – R


Book on Coping with Brain Fog

Would you please inform people with MCS about a book titled Brain Fog? Regards –  H  [See Brain Fog: Solve the mysteries of decreased mental capacity and keep your brain fit and functional throughout your life, by B Rothstein, DO. Discusses the effects on brain health & cognitive function of many factors including toxins, food allergies, hormones and nutrition.]


London Asthma Researchers Need Patients to Help Evaluate Therapies

Nonsmoking otherwise healthy adults with asthma are invited to register for participation ( in studies at the London Heart Lung Centre. Time & travel expenses will be reimbursed. There's a free phone number you can call for information. – Allergy UK


Ad Campaign to Create Awareness of ME/CFS Patients' Problems

Want attention, funding and real research? A group of ME / CFS patients and patient advocacy organizations is forming a patient-driven advertising campaign to address problems in medical care and access to social services ("Our Voice, Our Message, Our Lives" – This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message. (PANDORA is one organization facilitating the campaign but it isn't a PANDORA project.)

XMRV news is an opportunity for us to take ME/CFS patients' situation into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.

Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and do not take into consideration much of the knowledge that research has established regarding our illness.

We ask that you take a look at the "Our Voice, Our Message, Our Lives ME/CFS Awareness Campaign" Facebook page at and see if you can lend your support. Please consider helping in the following ways:

• Donate

• Get others associated with your group to donate

• Get friends and family to donate

• Offer your skills, time, energy or resources.

For more information on this critical campaign, scroll down on the Facebook page to "Recent Cause Activity" & and read comments & suggestions. Or send a message to one of us in the “Administrators” section. – P


How Does Medical Community Treat Patients with Invisible Illnesses?

There's a survey at that is being conducted as part of the reseach for a book on this subject. Answers will be completely anonymous. – A


Asking Pharmacies for Price Matches on Drugs – Worth a Try

If you have a computer or know someone who does, it can be very worthwhile to go to the pharmacy pricing section of major retailers like Costco. If the price is lower than what you are paying now, take a printout of the price to your pharmacy and ask for a price match. Most pharmacies will honor it. Competition is fierce and some places have a flat $4 charge for any generic on their list… check it out. In many cases, I have gotten my pharmacy to reduce their price by 50% or more via the price match.

Also, I have found that some of the generics for RA drugs like Arava are 5% (yes 5%) of the brand name drug. – D


Dangers of Cipro® Plus RA Drugs

Check out interactions before taking Cipro. I got rhabdomylosis (damage and breakdown of muscle tissues) and was hospitalized for four days to save my kidneys (damaged muscle cells released into the bloodstream can lead to acute kidney failure). Got liver damage with it as well. This all happened after doctor gave me Cipro* for a urinary tract infection. I guess you are not supposed to take it with Methotrexate (a drug commonly prescribed to those with severe rheumatoid arthritis or psoriasis, or cancer). As one doctor said, it "it magnifies the Methotrexate." Just wanted to alert others. Was on Plaquenil (another drug for RA or lupus) too.

[* Note: Cipro® is ciprofloxacin, one of the fluoroquinolone class of antibiotics. For many people these drugs can be very effective bacteria killers, while others suffer side effects such as muscle & tendon damage (genetic differences in ability to tolerate the drugs are one suggested reason). It is always crucial to clarify other drugs and supplements you take whenever your doctor suggests a new prescription, and especially for potent drugs such as these.]


ME/CFS Family Member Poll

Those with ME/CFS can add to the stats by going to Cort Johnson’s site and checking off info for relatives of different degrees and other people in close proximity who do or do not have ME/CFS or an ME/CFS-like condition. You’ll find the current statistics here – You'll need to register to add your response to the poll. – Y


Submit Nominations to Replace Retiring CFS Advisory Committee Members By Sept 5

Here's a CFIDS Association page on the call for nominations ( to replace the five faithful CFSAC members who'll be stepping down on April 1, 2011 (Drs Ronald Glaser, Arthur Hartz, Lenny Jason, Nancy Klimas, and CFSAC Chair Dr. Christopher Snell). There's not much time left, and this is a very important thing that groups and individuals can do to fulfill their duty as responsible citizens of the ME/CFS community. – U


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, 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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