From Our Readers - Comments & Suggestions 05-25-11
May 25, 2011
Patient Demonstrations Calling for Research Funding
On May 10, six ME/CFS patients who have been sick and disabled from 9 to 21 years demonstrated in front of the U.S. Department of Health and Human Services (HHS) on Capitol Hill in Washington. They carried a 25-foot banner that read
"Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" To see the video they made of their demo, and their challenge to other patient groups to hold their own demos (complete with tips and addresses), click HERE.
At least one group has accepted the challenge so far. They demonstrated and videotaped in San Francisco at the HHS building (Federal Building) on Wednesday, May 25. They'll make their video public ASAP, and in the meantime check out the San Francisco Chronicle article on the event by Erin Allday ("Chronic Fatigue Patients Protest Lack of Funding"). Be sure to thank Erin, read the comments (scroll down)and add your own so they know the ME/CFS community is out here. Organizer of the demo is Bobbi (woman on the right in the DC demo).
A Listing of ME/CFS Physicians in the EU, Japan, and US
The European Society for ME (ESME) at http://esme-eu.com has contact information including emails for ME/CFS doctors – mostly in EU (Belgium, Spain, Netherlands, Portugal, Italy, Sweden, Norway, UK) at http://esme-eu.com/list-of-me-cfs-doctors-in-europe-and-usa/list-of-me-cfs-doctors-in-europe-and-usa-article152-169.html , but also some in the US. The separate list of ME/CFS doctors in Japan is HERE. There is also a list of laboratories in Europe & the US HERE .
- European Society for ME (ESME)
Vitamin D Council Offers Free Autism Clinic Visits in California
On July 1, 2011, the Vitamin D Council is planning to begin a free clinic for children with autism. My time will be free, the autism assessment scales will be free, the blood tests will be free, and the vitamin D for the kids will be free (due to the generosity of Ddrops). We estimate 3-4 clinic visits will be needed. Anyone in the world with a child with autism can call and get an appointment to see me. The Vitamin D Council will sponsor this clinic as long as we can afford it, which means as long as we have enough donors, members and especially enough lifetime members.
- John Cannell, MD, Vitamin D Council
1241 Johnson Ave., #134
San Luis Obispo, CA 93401
[ProHealth Note: This clinic launch marks the beginning of Dr. Cannell’s new career focus on vitamin D and autism research & education. To read more about the upcoming clinic, plans for a preliminary study of autism and vitamin D at University of California, San Francisco, and testimonial letters from autism patients/families regarding vitamin D’s therapeutic benefits, and more, subscribe to Dr. Cannell's free newsletter at www.vitamindcouncil.org/news.]
Banishing Toxic Chemicals & Fragrances - What One Person Can Do
Canary Report Guest Blogger Mokihana Calizar wrote: “We are living in South Whidbey, Washington, becoming part of a community that makes room for others in meaningful ways. My work: bringing fragrance-free practices and products to a public space in my neighborhood.”
Mokhana volunteered to clean and sanitize the public restrooms serving a Sunday farmer’s market in her neighborhood. She posted signs ‘advertising’ the fragrance & chemical free products that were used, with gratifying results. Read about it at www.thecanaryreport.org.
- The Canary Report contributor
Catch "Under Our Skin" Lyme Documentary on PBS, Netflix, Amazon
• Anyone who has been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, MS, Parkinson's, Psychiatric Disorders, Rheumatoid Arthritis, Lupus, Alzheimer's, Crohn's disease, etc. Anyone who ever goes outside, lives with people who go outside, or has pets that go outside should watch this dramatic documentary film being shown on PBS called "Under Our Skin." It is about the hidden epidemic of Lyme disease and how people are being misdiagnosed with illnesses like fibromyalgia, Chronic Fatigue Syndrome, etc. You may very well see yourself in one of the stories being told in this important documentary.
The list in the PBS schedule link is being continually updated, so keep checking back if you don't see your area listed, or call your local PBS station and request that it be shown. - N
• It’s also available on Netflix! Also available to watch instantly on Amazon.com for I think $3.99 - K
Free Audio May Help With Life After Loss
Seeking a way to dig out of debt that was causing her grief, chocolate shop owner Sandra Champlain started by researching the mood and health benefits of chocolate, and in the process developed a website offering many resources for people suffering grief and loss. To listen to & download her free audio, “How To: Survive Grief” go to www.survivegrief.com. - J
Trial of 'Easier' Procedure for Stenosis-Related Low Back Pain
Here's a doctor interview on the 'Orthopedics Channel.' In it, Richard Tallarico, MD, an orthopedic spine surgeon at Upstate Medical University in Syracuse, NY, tells about their ongoing trials of an experimental procedure used to relieve back and leg pain, or numbness & weakness. The faster, easier procedure is designed to relieve the pain caused by lumbar spine “stenosis” – narrowing of the spinal canal that squeezes the nerves which pass through it. - H
[Note: According to FamilyDoctor.org, lumbar spinal canal stenosis is not the same as a ruptured disk, another common cause of low back & leg pain. A ruptured or "herniated" disk usually pinches 1 or 2 nerves at a time. The pain caused by a ruptured disk in the lumbar spine is usually easy to diagnose and is known as sciatica. Sciatica usually causes back pain that shoots down one leg along the path of the sciatic nerve. Sciatica can happen any time, not just when you stand up or start walking like it does with stenosis.]
Kudos for NYC & NJ Autism Research Study
My family and I had the pleasure of taking part in an autism research study which we found incredibly rewarding. Conducted by the Weill Cornell Autism Research Program (WCARP), the purpose is to improve the understanding behind the genetics and brain bases of autism spectrum disorders (ASDs). It meant just one visit which only took three hours to complete. Personally, it made me feel happy and productive to be able to do even a little something to help find answers!
Every individual with whom we came into contact was incredibly warm, caring, and sensitive. I was truly struck by how kind and compassionate those involved were and how exceptionally they treated my child.
In exchange for participation, each family gets a $25 gift certificate, parking voucher, and short summary from the doctors performing the evaluation identifying where one’s child is on the “spectrum”. In addition (and from my perspective, most importantly), I received free admission to an all-day, interactive autism symposium (the cost of which was $175 for the general public). I have to say, it would have been worth every penny! After all, how often do you get the chance to sit in a room with scientists and clinicians and have your questions answered? The good news is that there are already plans to hold another event in 2012 (details TBD), so anyone participating in the study will be invited to attend at no cost!
If you are interested in learning more about the study, the coordinator is Vivian Ojeda. She can be reached at either 212-746-3583 or by email at email@example.com. The study is being conducted at New York-Presbyterian Hospital in New York, NY as well as Hackensack, New Jersey (pretty convenient for anyone living in the Tri-State area!) - D
Coping with Disability Claims in Canada, Too
Re: "Avoiding the Disability Claim Brush-off - What You Need to Know"
• Canadian Legal Information -
More info also available at
- Canadian National ME/FM Action Network
• Great Article! Having been through the "wars" with a Canadian Insurance Company, having these tips before hand might have made the battle a little easier. I went through a year of hell with this company, denial after denial. I have FM, CFS, MPS and Degenerative Disease, compounded by a head injury. Depression is a secondary result of these conditions. There were times I honestly thought I would have a nervous breakdown. At the end, the insurance company sent me for physio for 12 weeks. This extended to twice the amount of time because I was unable to go according to the schedule. The end result of physio was it had made me worse, not better. This, along with a threat of a lawsuit by my lawyer, resulted in an approval of my claim. Insurance companies aren't there to protect us, they are there to make money, by taking our money. - C
On Peppermint, Gastrointestinal Pain, and IBS
Re: "Peppermint Gets Clinical Respect – Activates ‘antipain channel’ in gut"
Personal experience with peppermint: I found that, when I had IBS (the switching kind that became mainly constipation after time), the peppermint would cause even worse constipation. So, perhaps peppermint's best use might be to control diarrhea IBS. It's worth a try. - S
The Report on Coenzyme Q-10 Therapy for Fibro (& ME/CFS)
This isn't a surprise to those of us with fibro and ME/CFS who have used Co-Q-10 with much success. Since it's an antioxidant and anti-inflammatory, it reduces the already super-elevated inflammation that our bodies produce for some unknown reason. By reducing the inflammation, the pain is reduced. The same thing happens for the other anti-inflammatories like fish oil and quercetin. This is also why arthritis sufferers find relief from the same supplements.
Vote for Both WPI & CAA in Chase Giving, Annette Whittemore Urges
[Note: voting closed at Midnight EST time May 25]
• Passing on a message from Annette Whittemore - "As the competition moves along, more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase." - Q
• Each person is allowed five votes - So you may vote for both the CFIDS Assn. and the WPI. If everyone votes for both organizations, we could win $900,000! All prize money for both organizations will be used for research of ME/CFS/CFIDS and related illnesses. Round Two is the last time these two charities can compete in the Chase Community Giving Contest unless the rules change. Current rules exclude organizations which have won money in previous Chase Contests from participating again. Please be sure to vote! - F
[Note: For easy tips on voting we learned by trial and error, and links that take you right to the WPI & CAA vote pages, see "Chase Community Giving: SECOND ROUND Ends May 25"]
Patient Comments on Dr. Lapp's Supplement Recommendations
Re: "Dr. Charles Lapp's Recommendations on Supplements for ME/CFS and FM"
• More on supplements: Much recent evidence supports the use of colostrum for "Leaky Gut." A significant number of people with ME/CFS have IBS symptoms due to immunological dysfunction affecting the gut. Leaky gut occurs when the protein bridges across the intestinal wall do not function properly and toxins and bacterial cells cross into the blood stream along with nutrients specific for the Protein pore. In addition, there is also much evidence that intestinal imbalance accounts for some of the neurological dysfunction seen in ME/CFS. - I
• Supplements, continued - As for the intestinal problems, there is a good chance many of us have an active candida infection of our intestines. The candida dig into the intestinal wall and hang on. That digging in makes a small hole in the intestinal lining, which is why we have leaky gut. I stool-tested with a specialized parasite lab in Arizona, found the candida, then tried every herbal preparation known to man or beast. While they helped, they didn't get rid of it. I had to resort to 3 months of anti-fungal prescriptions AND a Caveman diet. The only anti-fungal medications that worked were the oral powdered Nystatin (not absorbed by the body, so it works only in the intestines) along with 2 weeks up front of Diflucan oral (which is absorbed so you attack the candida from both sides of the intestinal wall). I've been candida-free, IBS-free, leaky-gut-free, and doing much better for about 2 years. Good luck, everyone!
• B-12 sublingual: I blood-tested low for B-12, then I started taking the B-12 Extreme sublingual from Prohealth. My results were off the scale due to the high dose, so this stuff really works. I reduced to 1/4 of a pill sublingual every other day, and had great results. - S
Note: This information has not 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.
ProHealth offers a wide range of nutritional supplements for optimal health.*
*These products are not intended to diagnose, treat, cure, or prevent any disease.
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