Hot Topics & Readers’ Notes – 1-25-12

May 12 Awareness Day Planning on Facebook

Facebook pages for May 12 Awareness Day 2012 are beginning to ramp up, preparing to exchange plans, ideas, banners, badges, videos, meet-ups, and more, including a petition asking Google to create an Awareness Day ‘doodle’.  A few of the facebook sites we’ve seen include one for International ME/CFS and Fibromyalgia Awareness Day; another for International Fibromyalgia Awareness Day, one for Australian Fibromyalgia Awareness Day, one for International Invisible Illness Awareness Day, and so on. There’s even a site that calls itself Neuro & Auto Immune Disease International Awareness Day Global Strike, which seems to propose videotaped patient protests in many locations. Plenty of opportunities for everyone to be involved!


Helpful Headache Information from Mt. Sinai Headache & Pain Center

If you suffer from headaches and are searching for help, the Mt. Sinai Hospital Center for Headache and Pain Medicine site offers some facts culled from their research that may surprise you. For example, their handout, “Headache: Everything You Need to Know” reports that 9 in 10 people who have been diagnosed with sinus headaches are actually having migraines; and that the leading reason for having chronic daily headaches is previous overuse of medications for migraine. 


Dr. Myhill’s Fibro Theory – Kudos & Things that Have Helped

Re: “Dr. Myhill on fibromyalgia and Mitochondrial Dysfunction” 

Try hyperbaric oxygen therapy. I was trying to find something to help the brain fog (which is also complicated by this mitochondrial malfunction), so I went to the hyperbaric oxygen chamber. Although the brain fog didn’t improve much, my muscle consistency, stiffness, and pain were much improved. A heavy dose of oxygen in all the tissues speeds healing. I had so much muscle damage from the mitochondrial failure (from lactic acid buildup) that the oxygen was able to help me. It’s worth a try, if you have an independent hyperbaric oxygen chamber nearby. Do the 1-hour therapy 5 times in one week and see how you feel. My massage therapist noticed it first. – S

Appreciative response to article. Dr. Myhill, my physical profile parallels the description presented in your most recent article on Chronic Fatigue/Mitochondrial Dysfunction. I am a nurse by occupation and have been familiar with the Mitochondrial function inside cells for many years. I remember my reaction (great interest) upon learning of this amazing part of anatomy and physiology. I want to thank you for your research and willingness to publish articles of your incomplete findings. I had concluded CFS was related to Mitochondrial Dysfunction in my past readings…. As science continues to advance, and with the help of individuals such as yourself focusing on this very real disease, perhaps a distinctive treatment will be discovered. Thank you for focusing your time on this area of medicine that is often dismissed by general practitioners. – U

Still have a question which this theory doesn’t address. Why do we have tender points in specific areas of the body? Dr. Paul St. Amand’s theory, which is in some ways similar to this one, takes the mitochondria theory further to explain this symptom of FMS. He developed the Guaifenesin Protocol to help the body draw the debris, which is a result of the production of ATP, from the tender points. I am biased because the Guaifenesin treatment helped me reverse the symptoms of FMS and I was no longer bedridden most of the time and on Morphine for pain. The supplements she suggests in this article are helpful but do not do what the Guai did for me.

I am now on a treatment from Oxford University which has not been FDA approved here in the US but has been more than 90 percent successful for longer than 30 years in Europe. It is a series of peptide injections and after two of them, my symptoms from FMS, CFIDS/ME, Sjogren’s Syndrome and interstitial cystitis are almost gone. It takes 9 months to a year of monthly injections for most peoples’ bodies to learn how to put together the right peptides to heal itself.

I’ll forever be grateful for the Guai protocol because it allowed me to concentrate on my other illnesses. If the peptide injections continue to work, other treatments will be moot for me. – M


April 6-9 Fibromyalgia Patient Conference in West Sussex – Register Now

The third annual Fibromyalgia Conference and Pamper Weekend is scheduled for Easter Weekend April 6-9 at the Chichester Park Hotel in West Sussex. A dozen presentations and as many workshops and classes are planned, with world-renowned fibromyalgia researchers Professor Muhammad Yunus and Dr. I Jon Russell on the schedule according to current plans. For details and to register or book accommodations, click here


Getting into Ruts and Helping One Another Get Out

“I suspect many of us have gotten into ruts and limited our activities due to our chronic pain,” says HealthCentral FM patient expert Karen Lee Richards. She resolved to do something new to keep her world from getting smaller, as it had in 2011, and suggests we share the activities or hobbies we enjoy “to help someone else discover a new activity that captures their interest.”


Restless Legs Study in Iceland

Iceland’s population (the most genetically homogeneous in the world) has been called “a jackpot” for researchers studying the genetic associations of various disorders. A new study of RLS in Iceland found that as many as one in five (20%) of the population develops restless legs syndrome. Further, the disorder appears to be genetically linked/inherited in people who develop it before age 45; and to be owing to other factors such as iron depletion in those who develop it later in life.


Fibromyalgia Medications and Insomnia

Blogger Celeste Cooper, RN, has posted some helpful information on FM sleep problems – “Could Your Fibromyalgia Medications Be Causing Insomnia?” In a word, “Yes,” Cooper says. Her blog is based on information in her popular book written with Jeff Miller, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. (Thanks to a link shared by CFS Solutions of West Michigan.)


Online Chronic Illness Impact Survey

Do you experience physical symptoms that interfere with your life? If so, we want to hear your voice! Dr. Lori Lange and a team of graduate researchers at the University of North Florida are currently conducting research on the impact of ongoing physical symptoms in the lives of patients. Specifically, we are recruiting patients [for an online survey] who:

• Are at least 18 years of age.

• Have experienced ongoing or intermittent somatic symptoms for more than 3 months.

• Have an illness with ongoing symptoms (e.g., arthritis, lyme disease, eczema, COPD) or suffer from a chronic syndrome (e.g., fibromyalgia, IBS, CFS, MCS), or experience medically unexplained persistent symptoms (e.g., pain, fatigue, fever).

If you would like to participate or desire further information, please go to:

The VOICE Research Team


Dealing with Lack of Family Support

Re: “Facing Lack of Family Support: Will You Be a Teacher, Ninja, or Escapee?”  

I’ve found the best way to convey the severity of my CFS/ME is to describe a particular occurrence in detail. I realized this by chance when I casually told a friend, “I knew I would have a good day today because I didn’t have to lean against the sink while brushing my teeth.” She had been a friend for years, both while I was well and I was sick, but, she said, she didn’t “get” the severity of my illness till she heard that. Recently, I told someone who didn’t quite “get” it, “I needed a shower but knew I couldn’t stand up long enough, so I just knelt instead.” That got through. Another one was, “Yes, I had a good day – enough energy to drive to WalMart and shop – but I did have to sit on the floor while waiting on line.”

I’m sure we all have examples of things no healthy person ever thinks about that we simply cannot do. Those vivid examples seem to be communicate more than general statements. – S


Some Fibro Really Ehlers Danlos III?

I strongly urge anyone who has been told they have fibromyalgia to consider instead that this diagnosis is incorrect and what they really have is Hypermobility Syndrome such as Ehlers Danlos type 3, which affects blood vessels and causes migraine and dysautonomia, POTS (i.e., low blood pressure).

Dr Bravo, a Chilean doctor, has written several articles on this, and his explanations make more sense than an inexplicable and untestable diagnosis of “fibromyalgia.” Google Bravo, dysautonomia, hypermobility. Please read them, and don’t discount them because his English is a bit quaint, it is not his native language. – M


Wisconsin Lyme Doc to be Reinstated

The Wisconsin Medical Board has reportedly endorsed an agreement that may allow John G Hoffman, MD, to resume treating his 1,300-some Lyme patients. His license had been suspended in November and is being reinstated with certain conditions. The Medical Board has reportedly stated in writing that it has no issue with his treating tick-borne illness with long-term antibiotics, and the outpouring of support by patients was critical to the decision, according to the Jan 19 news report posted by Wisconsin Lyme Online Support Group moderator Mike Nickel. (Thanks to a link shared by XMRV Global Action.)


Information on Temporomandibular Joint (Jaw) Pain

The American Pain Foundation offers a very comprehensive explanation of TMJ Disorder (TMD) types; its many signs & symptoms; possible causes, from tension to trauma; diagnosis; and treatment options. TMD is a jaw joint & muscle disorder that very commonly affects people with migraine, fibromyalgia, and other disorders such as IBS, interstitial cystitis, ME/CFS, and sleep disturbances, and it can develop as part of rheumatoid arthritis, so this information could be worth checking out.


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 with your professional healthcare team.

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